Rehabilitation: The Use of Theories and Models

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ELSEVIER

CHURCHILL
LMNGSTONE

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vii

Contributors

Sally Davis MSe RGN PGCEA DipMan


Programme Lead in Rehabilitation, School of
Health and Social Care, Oxford Brookes University, Oxford, UK
Sally Feaver DipCOT BA MA
Principal Lecturer in Occupational Therapy,
School of Health and Social Care, Oxford Brookes
University, Oxford, UK
Mary Gottwald MA BA(Hons) TDipCOT CerIEd(FE & HE)
Programme Lead Management in Health and
Social Care, School of Health and Social Care,
Oxford Brookes University, Oxford, UK
Michael K. Iwama PhD MSe BSe OT
Associate Professor, Department of Occupational
Therapy, University of Toronto, Toronto, Canada;
Adjunct Professor, University of Queensland,
Australia

Mary Kavanagh MSe PGDip BA(Hons) DipCOT


CertCounselling CertTHE

Senior Lecturer in Occupational Therapy, School


of Health and Social Care, Oxford Brookes University, Oxford, UK

Sue Madden PhD BSe(Hons) SRP


Senior Lecturer in Physiotherapy, School of Health
and Social Care, Oxford Brookes University,
Oxford, UK
Kevin Reel MSc BSe PGDip CerlTHE
Senior Lecturer in Occupational Therapy, School
of Health and Social Care, Oxford Brookes University, Oxford, UK
Bridget Taylor MSe BA(Hons) RGN DNCerl CerlEd
Senior Lecturer in Sexual Health and Adult Nursing, School of Health and Social Care, Oxford
Brookes University, Oxford, UK

ix

Introduction

INTRODUCTION
Rehabilitation is a complex process which
depends on interprofessional working and should
be focused on the individual's goals (Sinclair and
Dickinson 1998, Wade 1990, Steiner et al 2002). In
order to achieve this there are a number of theories and models which can be used to make sense
of rehabilitation and which can assist rehabilitation professionals.
It became obvious to me as a rehabilitation
nurse and lecturer of a rehabilitation programme
that a book exploring different models and their
implications for rehabilitation could be useful for
practitioners and educators. Hence the development of this book which aims to:
Explore the use of theories and models
in rehabilitation
Identify the use of models in practice
Facilitate interprofessional working
Enable an approach that is focused on
the individual.
Key features of this book are interprofessional
working and how each model promotes this, and
the ICF (International Classification of Function

and Health, WHO 2001) which will be used to


compare a variety of models against. The rationale for using the ICF is that it is a useful framework to use in rehabilitation as it considers
a number of aspects related to the individual's
experience.
The book is divided into three main sections:
Rehabilitation; Models and Theories; Models in
Practice.
Throughout the book four case studies are used
to relate the discussion to practice. These case studies are taken from practice and are meant to cover
different client groups, culture, ages and gender.
The authors of this book are from a variety of
professional groups and have worked with a variety of client groups. The models chosen for the
book are by no means an exhaustive list and the
aim of this book is not to state that these models
should be used in rehabilitation, it is to show how
different models can be used to promote interprofessional working in rehabilitation. The rationale
for choosing the models has come from the
author's experiences in using models and also in
wanting to explore the use of different types of
models in rehabilitation.

Section One: Rehabilitation


Rehabilitation: Rehabilitation at a macro and micro level;
definitions of rehabilitation; major government agendas;
interdisciplinary and multidisciplinary teamwork; quality
of life.

The ICF: The history; revisions; description; results of


a survey; applications; relationship to rehabilitation.

INTRODUCTION

Section Two: Models and Theories


Use of models: Terminology; use of theories; uni-professional models

Section Three: Modeb in Practice


This section will consider the following models focusing
on howthey promote interprofessional working; their
relationship with the ICF; their relationship to
rehabilitation.
The Canadian Model: A comprehensive, holistic model.
The Illness Constellation Model:Focuses on one
aspect of rehabilitation: adaptation for the individual and
their significant others.
The PLiSSIT and Ex-PLISSIT models: Intervention
models which help rehabilitation professionals in areas
of sensitivity.

It is anticipated that this book will be of value to:

Professionals working in rehabilitation settings


Professionals taking post-registration programmes in rehabilitation or programmes
where rehabilitation is addressed e.g. ageing
studies
Students on pre-registration training for nursing and allied health professions
Professionals working in any health care
setting where interprofessional working is a
focus.
In terms of terminology different chapters may
use different terminology to describe the person
undergoing the rehabilitation process. Generally
client or individual is used rather than patient.
I prefer the use of 'individual' as I feel patient and
client implies different things. However, using
'individual' may be confusing at times which is
why in some chapters client or patient is used.

Health Promotion Models: Emphasising the link of


health promotion to rehabilitation.
The Kawa (River) Model: Focusing on the cultural
context of individuals.
This section will conclude with a focus on the Way
Forward which will pull the main points of the book
together, identifying areas for future development and
research and the implications for interprofessional
training.

Although there are limitations to this book in


that it doesn't include an overview of all models
available or includes all uni-professional models,
hopefully it still has value in that it:
Provides an overview of a variety of models
with a focus on rehabilitation and interprofessional working
Is multi-professional
The ICF is used as a framework to compare
the models against
Is related to practice through the use of case
studies and questions for practice
Is in an accessible style.
I and my fellow authors hope that you enjoy the
book and find it useful in considering the models
you use in your practice. We also hope that it will
challenge your thinking around the use of models
in promoting interprofessional working.
Sally Davis

Introduction

References
Sinclair A, Dickinson E 1998 Effective practice in
rehabilitation: evidence from systematic reviews.
KlngsFund,London
Steiner WA, Ryser L, Huber E, et al 2002 Use of the
ICF model as a clinical problem-solving tool in
physical therapy and rehabilitation medicine.
Physical Therapy 82(11):1098-1107

Wade Dr 1990 Designing district disability servicesthe Oxford experience. Clinical Rehabilitation
4:147-158
World Health Organisation 2001 International
classification of functioning, disability and health.
World Health Organisation, Geneva

xi

Chapter

Rehabilitation at a Macro
and Micro Level
Sally Davis, Sue Madden

INTRODUCTION
Rehabilitation is a complex process that involves a number of
health-care professionals, the individual and their family. Rehabilitation
is becoming more of a priority in England with the formulation of
National Service Frameworks, which prioritise rehabilitation in health
care. The aim of this chapter is to set the scene for the book by
discussing rehabilitation at a macro and micro level by:
Discussing the history of rehabilitation
Identifying the major government agendas related to rehabilitation
Discussing what rehabilitation is both in terms of a process and
a philosophy
Exploring the related concepts of teamwork and quality of life.

REHABILITATION WITHIN THE CONTEXT OF SOCIAL POLICY


History of rehabilitation
in the NHS

Rehabilitation is seen widely by many as being an essential part of


a patient's care, as it is here that a person has the opportunity to fulfil his or her potential. However, prior to the launch of the NHS Plan
in 2000, rehabilitation attracted little attention and was rarely mentioned within health and social policy, and, as a result, rehabilitation
services received poor funding. The reduced funding was reflected in
a reduction of rehabilitation services that resulted in a wide gap
between the care provided within a hospital setting and that received
once discharged back home and within the community. Because of the
under-resourcing of rehabilitation, few areas had adequate services,
which meant that individuals were unable to receive the support
required.
Such underfunding and general lack of focus received by rehabilitation within health and social policy can be attributed to several issues.
Traditionally, when clinical specialties needed rehabilitation services,

Section 1 REHABILITATION AND THE ICF


whether these were clinical, therapeutic, social or environmental
interventions, money would be allocated from each specific clinical
specialty's budget to fund part of the service that was required. This traditionally resulted in one rehabilitation team providing a service to
a number of clinical groups and specialties. While in theory this was a
workable practice, because of structural issues the rehabilitation service
was frequently unable to develop and progress as other clinical services
could. Frequently, rehabilitation services lacked ownership, as one service could be funded by several clinical areas and, while the managers of
each clinical specialty were often regarded as the managers of the
service, this tended to be an implicit arrangement rather than being
explicit. As a result, services became fragmented and lacked a clear
sense of identity.
A further problem with such funding structure and lack of ownership
was that frequently rehabilitation services were not regarded as a priority. As a result, when clinical services were making decisions about how
to spend their budgets, it was frequently rehabilitation services that
would be reduced, while other areas relating to acute services and longterm care were prioritised. Although this decision was viewed as necessary at the time, the underfunding of rehabilitation services had serious
consequences within both the acute and long-term services, as patients
had more frequent or longer stays in hospital, entry into residential care
and nursing homes or needed more expensive and complex packages of
support at home. One problem that emerged was that patients were
receiving less rehabilitation while being treated as inpatients, as
advances within clinical areas meant patients were spending less and
less time as inpatients. As few rehabilitative services were provided
within the community, upon discharge from the acute setting many people entered a downward spiral of being less independent and requiring
more support. As funding became more problematic, particularly within
the community setting, local authorities prioritised the small amount of
funding on those most dependent and hence seen as most needing care.
Not only were such packages of care more complex and more expensive
but those who required lower levels of support were neglected, which
led to those initially identified as being in need of little support deteriorating and becoming more likely to require expensive packages of care
later on.
Because of such issues, the Audit Commission has repeatedly referred
to rehabilitation as the Cinderella service of the NHS. While clearly being
acknowledged as an essential service, the lack of ownership, funding
issues and general perception that it is a low-priority service has led to
its severe neglect. However, since the launch of the NHS Plan and subsequent National Service Frameworks such problems are being
addressed. There is now widespread acknowledgement that the previous funding structures added to the stress placed on the NHS and social
services, as limited resources were being used to fund expensive
complex packages of care for people who had not had an adequate
opportunity to achieve their full potential.

Chapter 1 Rehabilitation at a Macro and Micro level

Increased recognition
for the need
of rehabilitation services

Since the launch of the NHS Plan in 2000, rehabilitation has become a priority within NHS policy, not least with the development of the National
Service Framework for Older People and the establishment of intermediate-care services. The vision of the NHS set out within the NHS Plan is to
provide a person-centred NHS that supports and enables people to live
in an environment suitable to their needs that provides appropriate care,
support and, if necessary, rehabilitation. The NHS Plan outlined that one
of the key aims of a patient centred NHS should be to promote independence at all times. To achieve such independence, authorities, which
includes social care authorities, should help individual adults to perform
activities of daily living independently for as long as possible, and to live
in their own homes for as long as possible. The NHS Plan identified that
the only way such aims can be fully achieved is through rehabilitation
services, which must include effective assessment of an individual's
needs, on-going review and follow-up of care packages over a long
period of time.
In the NHS Plan and the subsequent health and social care policies
that have emerged from it, there has been widespread acknowledgement
that, with the right rehabilitative services, acute NHS Trusts would benefit, as the number of acute admissions would decrease while ensuring
earlier discharge was also possible if additional rehabilitation could be
provided within the individual's community setting. Those individuals
who lived in long-term residential or nursing home care were also considered as having great potential and being able to regain their independence if the appropriate rehabilitative services were provided.
However, how and where such rehabilitation services should be provided could be seen as a complicated issue. To avoid confusion, the NHS
Plan identified several key areas where rehabilitation services should be
provided; these included more care provided within the community, particularly in the area of improving rehabilitation following discharge from
hospital, providing more specialist intensive inpatient rehabilitation for
people following strokes or major surgery and ensuring appropriate
funding for intermediate care.

National Service
Framework for Older
People

Of all the health and social care policies that have been developed by
the Department of Health, the National Service Framework for Older
People can be seen to have had one of the most dramatic influences on
the rehabilitation agenda. It has helped to ensure that rehabilitation becomes a priority across health and social care. One of the key
initiatives that helped to achieve this and that emerged from the
National Service Framework for Older People was in the area of intermediate care.
Intermediate care was developed to try to cover a number of areas
within the care of older people, although the primary aim was to
maximise independent living for older people. However, intermediate
care also saw the potential to promote faster recovery time from illnesses, prevent admission or readmission to acute NHS Trusts and
reduce, wherever possible, the use of long-term care. Ultimately

Intermediate care

Section 1 REHABILITATION AND THE ICF


intermediate care was seen as a way of ensuring that people who would
otherwise face a prolonged and unnecessary stay in hospital or an inappropriate admission to acute inpatient care, long-term residential care or
continuing NHS in-patient care got an effective package of care that
would promote independence for as long as possible. While all would
support such aims, they are nevertheless ambitious. As a result, the government acknowledged that the primary way in which these could be
realistically achieved was through timely and appropriate rehabilitation.
Individuals need to receive a comprehensive assessment that would feed
into a comprehensive care plan. The aim of any treatment should be to
maximise independence and wherever possible to allow individuals
to live at home.
In order to achieve such aims, rehabilitation services need to change
in the way they are funded and developed if they are to be effective.
As a result, intermediate-care services need to be developed in partnership between primary and secondary health care, local government
services, in particular social care, and the independent sector, and
should include a wide range of services in order to meet the needs of
all users. Intermediate-care services require a range of appropriate
professionals from health and social care to be involved from the start
of the assessment process and to work within a single assessment
framework, single records system and shared protocols. In order to
promote such integrated care across a wide variety of agencies, the
1999 Health Bill changed the way in which budgets could be managed,
and allowed budgets from NHS bodies and local authorities to be
pooled, usually within primary care trusts, so that comprehensive and
integrated rehabilitative services could be commissioned from one
budget. Although budgets can be transferred, one agency now has
overall control of the budget and commissioning process. This ensures
that intermediate-care services have a clear identity and ownership,
something that was problematic in the past and led to a decline in
rehabilitative services. Integrated care also allows either health or
social care to purchase both services if required, as previously such
services were funded separately. All such changes have been designed
to ensure that intermediate-care services, including rehabilitation, are
patient-centred.
The potential for intermediate-care services is vast, which has led to
the role and profile of rehabilitation within the NHS increasing.
Because of the emphasis placed upon intermediate care in the
National Service Framework for Older People and the role of rehabilitation within the Framework, it is now hoped that rehabilitation will
remain on the agenda for health and social care services and that the
previous problems that led to the neglect of rehabilitation are things
of the past.

Whole-systems working:
multidisciplinary and
interdisciplinary working

As previously highlighted, in order for the aims of intermediate care to


be achieved, the way in which health- and social-care professionals work
together needed to be reviewed. Previous research had discovered that
rehabilitation services that adopted a more unidisciplinary approach to

Chapter 1 Rehabilitation at a Macro and Micro Level

care and lacked a cohesive team approach appeared to have many problems. Different information was shared with patients, frequently leading
to a confused picture of what the problems and treatment approach was
to be. There was a general lack of communication between different
health- and social-care professionals and a general lack of agreement
about the primary aims of rehabilitation. As a result, the services' effectiveness was limited. Because of such problems, it was felt that the only
way to achieve a truly patient-centred approach, as highlighted within
the NHS Plan, was to ensure that health- and social-care professionals
worked more effectively within a team and to adopt an integrated
approach to care.
Under the old funding structure, such an integrated care approach
was difficult to achieve, as professionals were funded from different
budgets; hence establishing and building effective teams was almost
impossible to achieve. However, within the new funding structure established within intermediate care it was now possible to bring all key
health- and social-care professionals to work as a team, ensuring that the
service was truly client-centred.
A further advantage with working within an integrated team
approach to care is that the combined expertise of the team can be more
effectively used than when health and social care workers practise individually. Each rehabilitation service should review the skills of all staff
involved, such as medical, nursing, therapy and pharmacy staff, to
ensure all professionals are used appropriately and that potential overlap of roles is reduced. A further shift in working patterns within intermediate care is that, to ensure that the service is truly client-centred,
there will naturally be some blending and blurring of the roles adopted
by health-care professionals. Although individual professional groups
will remain distinct from one another, such flexibility will ensure that the
needs of the individual are readily met.
However, the new integrated approach to care goes further than
simply the rehabilitation team working within a particular service.
There is also a need to ensure that all agencies involved with an individual's care work in an integrated approach, which means bringing
together health and social care as well as other agencies, such as housing. One of the problems when different agencies work in isolation is
that they frequently hold different views of the purpose of rehabilitation and have different aims. For example, while social services and
education staff playa vital role in assisting people with rehabilitation
needs to become integrated into society, they may hold a view of rehabilitation that is different from that of many health professionals working within the NHS. As a result, all agencies must come together to
ensure an integrated approach to care. Only then can the whole care
system be appropriately analysed, identifying possible areas for
improvement, which in turn will make more acute and long-term beds
available and ultimately reduce the cost of long-term care. Only by
adopting such a truly integrated approach to rehabilitation can the
needs of the individual be truly met and the services be delivered in
a seamless manner.

Section 1 REHABILITATION AND THE ICF

REHABILITATION
There are many definitions of rehabilitation within the literature (Jackson
1984, Waters 1986, Wade 1990, Greenwood et al. 1993, Blackwell 1994,
Sinclair & Dickinson 1998) but they all highlight similar defining attributes of rehabilitation:
Process

Rehabilitation is generally described as being an active, dynamic, continuing process concerned with physical, social and psychological aspects.
Steiner et al (2002) characterise rehabilitation as a continuous process
and identify the 'rehab cycle', which aims to improve an individual's
health status and quality of life by minimising the consequences of disease. The cycle consists of five stages:
Identifying problems and needs
Relating the problems to factors that are limiting and can be
modified
Defining target problems and target mediators and selecting
appropriate measures
Planning, implementing and coordinating interventions
Assessing effects.
The last stage of the cycle may cause new problems and needs to be identified, in which case the cycle begins again.

Restoration

In relation to rehabilitation, 'restoration' involves enabling the individual


to regain lost elements of their life, such as physical functioning or personal and social identity. It also carries the sense of restoring the individual to society or to a purposeful and satisfying life. The use of the word
'restore' can imply that the emphasis of rehabilitation is on the individual
returning to their former life. However, the definitions tend to interpret
'restore' in terms of individuals adapting to changed circumstances and
learning new skills rather than returning to their former life roles. Pryor
(2002) identifies rehabilitation as being the reconstruction of individuals'
lives in the light of injury, illness or surgery. She sees rehabilitation as
being about lives that are lived in damaged or broken bodies.

Effectiveness

Rehabilitation is described as promoting effectiveness or optimal functioning for the individual. Optimal functioning is implied as being functioning that can be achieved given any limitations the individual may
have. Functioning could be interpreted in terms of emotional and
psychological functioning as well as physical functioning.

Enabling and facilitating

Rehabilitation is generally described as being an enabling and facilitating process rather than a 'passive, doing for' process. This is conducive
to rehabilitation being active rather than passive. In order for healthcare professionals to take on this enabling and facilitating role the
relationship between them and the individual may need to be different.
An interesting question is: where does the power lie in this kind of
relationship?

Chapter 1 Rehabilitation at a Macro and Micro Level

Learning and teaching

Learning and teaching is implied within some definitions, in terms of


rehabilitation being described as an educational process that enables
patients and carers to learn new skills. Wade (1990) describes it as an
educational, problem-solving process aimed at reducing disability and
handicap. This is using the old International Classification of Impairments, Disability and Handicap (ICIDH; World Health Organization
1980) terminology. Applying the International Classification of Functioning, Disability and Health (ICF; World Health Organization 2001),
this could be interpreted as increasing an individual's activity and
participation.

Autonomy

Autonomy is implied in some of the definitions, in terms of enabling


individuals to achieve goals that are important to them. However it is
only the Kings Fund definition (Sinclair & Dickinson 1998) that stresses
that rehabilitation should be a process aimed at restoring personal autonomy in those aspects of daily living considered most relevant by individuals and their family carers. This idea of restoring personal autonomy
fits in well with goal planning and the concepts of empowerment and
advocacy. Taking autonomy one step further, Cardol et al (2002) suggest
that autonomy should be the ultimate aim of rehabilitation. In order for
this to happen, health-care professionals will need to explore the concepts associated with autonomy - e.g. power, empowerment - and their
implications.

The International
Classification of
Functioning. Disability
and Health

Rehabilitation can be considered in terms of the ICF (World Health


Organization 2001) under the classifications of impairment, activity and
participation. Rehabilitation goals will be different related to each level.
Using the ICF as a framework for rehabilitation ensures that the focus of
rehabilitation is not only on the level of impairment and disability. It
needs to focus on the individual's participation in the environment and
in society. The goals at each level of the ICF will generally relate to each
other. For example for an individual who has had a stroke the goals at
each level might be as listed in Table 1.1.
The goals identified at the level of participation may be dependent
on the achievement of goals at the levels of impairment and activity.
The ICF in relation to rehabilitation is discussed in more detail in
Chapter 2.

Table 1.1 Relationship of


ICF categories to goals

ICF Category

Goal

Impairment

To I'C!gain function in hemiplegic arm and to prevent


complicatitlns

Activity

To be independent in washing and dressing

Participation

To beable to return to work

10

Section

1 REHABILITATION AND THE ICF

Philosophy

As well as a process, rehabilitation can also be considered as being a philosophy of care. It is about the way professionals think about individuals
and where they see their role in the process. As a philosophy, rehabilitation is about enabling, facilitating, empowering. Adopting this philosophy of rehabilitation means that health-care professionals:
Value the patient as an individual, identifying their strengths and
weaknesses; their past achievements; their hopes for their future. This
is vital if professionals are to deliver client-centred care. Using assessment tools that assess individual's strengths, weaknesses, etc. can help
to promote this value.
Adopt strategies that facilitate and enable the individual to achieve
their full potential. It is important that there is some continuity in the
strategies used by rehabilitation professionals and that there is agreement as to what constitutes facilitating and enabling strategies.
Realise that, although it may be necessary to devote more time to
enabling individuals to achieve their full potential, this will be costeffective in the long term. It can be difficult to take this view, particularly
in an environment where rehabilitation is not seen as a priority. The time
involved is perhaps the most common factor identified by health-care
professionals in acute settings as a barrier to rehabilitation. However,
health-care professionals need to consider whether this is a valid argument when set against the consequences of not promoting rehabilitation,
both for the individual and for health-care resources. Not promoting
rehabilitation in the acute setting may mean, for example, that the individual will not achieve their full potential given their limitations and will
therefore need more resources and support after being discharged.
Should be thinking about how the individual and their family will
manage in the future, even though the extent to which they are able to
affect the individual's level of participation may be limited. The focus
should be on individuals' future quality of life as they see it.

Stages of rehabilitation One of the remaining difficulties is that rehabilitation can be seen as

something that happens in a specialised unit or ward whereas in reality


it needs to commence the moment an individual enters the health-care
system. This may be at the first contact with the GP or as an emergency
case in Accident & Emergency. It can be helpful to consider this continuum of rehabilitation as having four stages. The aims of rehabilitation
are different at each stage.

Stage 1

This is the initial critical stage when the individual is unconscious. The
goal of rehabilitation at this stage is to preserve life. Interventions at this
stage include:
Preventing complications
Providing verbal and tactile stimulation
Supporting relatives.

Stage 2

At this stage the individual has recovered consciousness, is fully responsive and is beginning to regain some physical function. The goal of

Chapter 1 Rehabilitation at a Macro and Micro Level

rehabilitation depends on the individual's needs. It may be to maintain


a safe, comfortable environment, which may be an appropriate goal for
an individual with a head injury who is agitated, or it may relate to the
individual's functional and cognitive ability. Interventions may include:
Managing challenging behaviour
Assessing the individual's functional and cognitive ability
Establishing everyday activities, e.g. eating at a table, using the toilet
rather than a commode
Giving the individual choices, e.g. about diet, clothes
Establishing alternative forms of communication
Supporting and involving relatives.

Stage 3

A more active programme of rehabilitation is required at this stage,


which may take place in a rehabilitation ward or centre. The goals of
rehabilitation should be focused on the level of participation - being concerned with the individual's quality of life. This will involve:
Facilitating and enabling individuals to achieve their maximum
potential in washing, dressing, feeding, communication and mobility
Ensuring that there is continuity of therapy programmes between the
different professional groups within the team
Empowering individuals by giving them informed choice and by
involving them in the setting of rehabilitation goals
Providing psychological support to the individual and their family
Providing a supportive, structured environment for the individual
and family.

Stage 4

The individual will have reached their full potential at this stage. The focus
will now be on enabling them to live with the disabilities they have and
maintaining their quality of life in relation to work, hobbies and social life.
At this stage they will either be at home or in an alternative setting, e.g.
a nursing home. They may attend a young disabled unit for respite care or
other day facilities, where the role of the team is to help them maintain
their quality of life. In order for individuals to maintain their full potential,
they may need follow-up appointments with the rehabilitation team,
which may result in further assessments and interventions.

Rehabilitation and
disability

Looking at rehabilitation in terms of four stages highlights the need for


rehabilitation to be a team activity. The goals of rehabilitation at each
stage will depend on the individual's impairments and the resulting disability or the limitations that the impairment places on their activities.
Because of the effect the individual's disabilities can have on the rehabilitation process and outcomes it is useful to consider the relationship
between rehabilitation and disability. Baker et al (1997) facilitated a survey
of education needs of health and social-services professionals that
explored the views of professional and client groups on the meaning of
rehabilitation and disability. As a result of the survey disability was identified as being a dramatic life change for the individual, with rehabilitation
being an enabling process in which a range of groups in society worked to

11

12

Section 1 REHABILITATION AND THE ICF

meet the needs of the disabled person. This life change includes the way
in which individuals see themselves and others. The report emphasised
that disability should be related to the individual person with a disability
rather than 'the disabled'. The use of language is an important consideration. The term 'the disabled' is still used in the media and in literature. This
kind of language can be seen as discriminatory, as it implies that disabled
people are not seen as individuals but are defined by their disability.
There are views in the literature on the relevance of rehabilitation to
people who are disabled. Some of these views highlight the inadequacies
of the World Health Organization (1980) ICIDH framework, which did
not take into account the societal factors that disable individuals. The ICF
(World Health Organization 2001) has rectified this by including the idea
of level of participation, which identifies environment and societal factors. This enables disabilities to be described from the perspective of an
individual's life circumstances and the impact these have on their experience (Bornman 2004).The focus on environmental and social factors fits
in with Pryor's (2002) description of the creation of a 'rehabilitative
milieu', by which she means an environment that enhances the process
and outcome of rehabilitation. To enable this environment to be created,
thought has to be given to the participants, the activities and the setting
in which they take place (Pryor 2002).
It is interesting to consider whether definitions of rehabilitation
reflect the cultures of different countries. For example, in some countries
rehabilitation may be seen as synonymous with physiotherapy. In my
experience, some professionals and individuals in the UK also hold this
view. The goal of promoting autonomy and independence may not be
congruent with the beliefs of individuals from different cultures. For
example, a study undertaken by Stopes-Roe & Cochrane (1989, cited in
Holland & Hogg 2001) comparing Asian people's attitudes to family
values with those of white people in the UK found that Asian people
valued conformity and self-direction less than the people in the UK.
This may not be congruent with the concepts of autonomy and independence. It is therefore essential that rehabilitation is focused on the
individual's needs and goals and that their values and beliefs are taken
into account. It cannot be assumed that all individuals or professionals
have the same views about rehabilitation. In order for professionals to
deliver culturally competent rehabilitation care (Patrinos & White 2001)
they need to:
Be aware of their own attitudes towards diversity and examine these
attitudes
Be sensitive to and respect differences
Be knowledgeable about different cultures to enable them to
interpret behaviours appropriately
Have cultural skills that enable them to respect and value culture - this
may include the use of appropriate touch and non-touch when
communicating and respecting the individual's need for physical space
Be able to communicate cross-culturally, which may mean the
involvement of interpreters or people in the community.

Chapter 1 Rehabilitation at a Macro and Micro level

Focusing on what is important to the individual and what their goals are
transcends all cultures.

TEAMWORK
Rehabilitation, because of its complex nature, cannot be achieved by one
professional group alone. Rehabilitation has become synonymous with
teamwork. A review of the literature on trends in rehabilitation policy
(Nocon & Baldwin 1998) highlighted the need for rehabilitation to be
centred on the most important aspects of an individual's life with the
involvement of service users. To enable this to be achieved rehabilitation
needs to involve a group of professionals all working with the same purpose of meeting the individual's goals. This process must involve the
individual and their family. The Kings Fund definition of rehabilitation:
'a process aiming to restore personal autonomy in those aspects of daily
living considered most relevant by patients or service users, and their
family carers' (Sinclair & Dickinson (1998/ p.1)) also highlights the need
for a multiprofessional approach to rehabilitation. This definition also
focuses on individual-centred care, emphasising what service users and
their carers, not the professionals, see as important.
The five main principles of individual-centred care can be identified
as being empowerment of individuals, enhancement of staff, multidisciplinary integrated pathways, multidisciplinary teamwork and restructuring and decentralisation of services (Hutchings et a12003). One could
argue that truly individual-centred care requires interdisciplinary teamwork in which there is not only a shared philosophy and collaboration
but also blurring of professional roles in order to meet the individual's
goals. This use of terminology brings into question the different terms
used when talking about rehabilitation. Terms such as multiprofessional,
interprofessional, transprofessional, multidisciplinary, interdisciplinary
and transdisciplinary are often used interchangeably. What is the difference between professional and disciplinary? Between multi- and inter-?
Table 1.2 gives some dictionary definitions.
'Multi-' implies that there are a number of different professional
groups working together, whereas 'inter-' implies that there are a number

Table 1.2 Definitions of


team types

Term

Definitions of Team Types (Oxford Paperback Dictionary 1998)

Professiona I

Someone who belongs to a profession, which is an occupation


that involves knowledge and trainig at an advanced level of
learning

Disciplinary

Of or for a discipline, which is described astraining that


produces a particular skill; or a branch of learning
or instruction

Multi-

Involving many

Inter-

Between or among

13

14

Section 1 REHABILITATION AND THE ICF


of different professionals working together towards a common purpose
and that there is some blurring of boundaries. 'Professional' can be taken
to mean the different professional groups whereas 'disciplinary' can be
taken to refer to the knowledge and skills underlying different professional roles. This is supported by Payne (2000), who distinguishes
between 'professional' and 'disciplinary' by suggesting that 'professional'
is concerned with the functions and activities associated with the different professional groups, whereas 'disciplinary' is concerned with the
knowledge and skills required for different professional roles.
Norrefalk (2003) takes on the challenge of trying to make sense of the
different terminology and identifies that:
A multidisciplinary team
Involves the efforts of individuals from a number of disciplines
Is used to describe a team consisting of many different professions
working in rehabilitation
In an interdisciplinary team
Members not only require the skills of their own disciplines but
also have the added responsibility of the group effort on behalf of
the activity or individual involved
The skills necessary for group interaction are required, and the
knowledge of how to transfer integrated group activities into
a result that is greater than the simple sum of the activities of each
individual discipline
The group activity is synergistic
In a transdisciplinary team
All borders are broken between the individual professionals. One
member of the team acts as a primary therapist, being supported by
the rest of the team. This primary therapist may be a health-eare
assistant with specific rehabilitation training (jackson & Davies 1995).
The terms 'discipline' and 'professional' can be identified as having more
or less the same meaning. Norrefalk (2003) makes the point that it is
important that rehabilitation professionals nationally and internationally
use the same terminology with the same meaning. He makes the suggestion that 'multiprofessional team' is used rather than 'multidisciplinary
team'. As the team consists of different professionals, this does perhaps
make sense. However, there can still be seen to be a difference between
'multi-' and 'inter-', with the interprofessional team truly working across
boundaries in order to meet the goals that are important to the individual
and have been identified by them. This fits in with the view of McGrath
& Davis (1992), who consider the distinction between multidisciplinary
and interdisciplinary to be their focus, with 'multidisciplinary' being
focused on the level of activity and 'interdisciplinary' focused on the level
of participation. It is the level of participation that enables goals to be
more realistic for the individual. In rehabilitation, professionals should be
working towards goals that are important to the individual.

Collaboration

Collaboration is the key to effective team working and can be described


as the process of working towards a common goal with shared planning

Chapter 1 Rehabilitation at a Macro and Micro level

and action. The team has joint responsibility for the outcome (Lindeke &
Block 1998). Interdisciplinary collaborative care differs from multidisciplinary collaborative care in that it involves joint decision making,
shared responsibility and shared authority (Lindeke & Block 1998). Professionals work together and cooperatively to achieve an agreed individual-centred goal. Transdisciplinary care takes this way of working
one step further in that there is a complete blurring of goals with one person being responsible for ensuring that the individual's needs are met
(Hutchings et al 2003). Although collaboration is the ultimate aim in
practice it is not always easy to achieve. Freeman et al (2000), as a result
of looking at case studies of six teams, identified that difficulties in developing collaborative practice can be identified at the levels of the organisation, the group and the individual. There are a number of concepts that
affect all these levels, which need to be taken into account for collaboration to occur. Figure 1.1 identifies concepts related to collaboration,
which are the basis for a taught module on collaboration at the School of
Health and Social Care, Oxford Brookes University.
Although team working is seen as being central to rehabilitation there
is little published evidence for its effectiveness (Embling 1995, Waters &
Luker 1996,Proctor-Childs et aI1998). There is evidence at a clinical level
from professionals who have changed from one approach to another that
it does have an effect on individuals (McGrath & Davis 1992). Using
a case study approach, Proctor-Childs et al (1998) explored the realities of
multi- and interdisciplinary teamwork. Although this was a small study
using only two case studies, both from a neurorehabilitation setting, the
findings support the work of McGrath & Davis (1992). Proctor-Childs

Figure 1.1 Concepts related


to collaboration

15

16

Section 1 REHABILITATION AND THE ICF


et al (1998) identified the following six outcomes that have the potential
to enhance an individual's progress:

Continuity: Professionals learned skills and knowledge from each


other, which they then carried over into their own practice

Consistency: Achieved because professionals identified how other

team members interpreted events - this resulted in them being able


to 'pick up' on individuals' views and act in a similar way to
colleagues
Reduction ofambiguity: The same messages were given to individuals
and their families because of joint working, joint discussion and joint
evaluation
Appropriate referrals: Professionals had a greater knowledge of each
other's roles so were able to refer appropriately to other members of
the team
Holistic information: A holistic picture of the individual was achieved
because of joint working - because of the perspectives of a number of
team members, decisions were made from a wider knowledge base
Problem solving: As discussion was focused around specific aspects of
individual care joint strategies were developed and appropriate
decisions made.

In order to achieve the above outcomes the team needs to be a close


working team, comfortable with each other, motivated by the same philosophy. Using the social identity approach to team building identified
by Hayes (2002) could help achieve this. This approach has three main
aims:
To motivate the team by creating a sense of unity and belonging.
This then enables them to cooperate together to achieve team goals,
which would need to be aimed at patients' goals
Strategies: Ensure the team is well defined and that there is cooperation
with others in the organisation; define the team's resources clearly;
set mutually agreed boundaries for the team
To create a climate of mutual understanding to enable team members
to be aware of each other's contribution and to see how individual
skills, abilities and tasks contribute to the team as a whole
Strategies: Establish clear lines of communication and different
strategies for communication; be clear what the team's aims and
objectives are; identify opportunities for informal communication,
e.g. social activities
To enable team members to feel proud of belonging to their team
and to recognise their contribution to the organisation
Strategies: Appraise each other's successes to each other and to the
larger organisation; recognise each other's skills and abilities;
provide training opportunities for individuals and for the whole
team; have official recognition from the wider organisation, which
could be in the form of rewards.
The implications of this approach to teams is that team building must be
a priority and must address:

Chapter 1 Rehabilitation at a Macro and Micro Level

Attitudes, values and beliefs: Team members exploring these in relation


to rehabilitation and to team working

Trust and respect: Setting ground rules within teams


Role: Team members having the opportunity to explore their
understanding of each other's roles

Contributions: Team members need to see how their contribution


affects not only the team but also the wider strategic picture.

Using such an approach to team building could help rehabilitation teams


truly achieve interdisciplinary working.

QUALITY OF LIFE
The ultimate aim of rehabilitation can be identified as maximising an
individual's quality of life. That is, the quality of life that is important
to the individual, not what professionals think it should be. Quality of
life is a difficult concept to define as it is personal to the individual.
What is important to one person will not have the same importance for
another person. In conducting a concept of analysis of quality of life,
Meeburg (1993) concluded that quality of life is an overall satisfaction
with life as determined by the individual whose quality of life is being
evaluated. Meeburg (1993) gives the example of a person living in
poverty who may be happy with their life as they have known nothing
else. However, a person outside those conditions would evaluate that
person's life as less than ideal. This example, however, doesn't take into
account people whose quality of life has changed as a result of circumstances beyond their control, e.g. illness, trauma, bereavement, financial
difficulties.
To understand the complexity of the concept of quality of life it is
helpful to consider its attributes or characteristics as identified by the
concept analysis conducted by McDaniel & Bach (1994).

Dynamic nature: Quality of life may change at various stages or ages in

an individual's life. It may also change from day to day. This is important
to consider in terms of rehabilitation, as an individual's quality of life
may be affected by a number of factors including the rehabilitation
process itself, lack of resources and the process of adaptation. These
effects may be short- or long-term.
Multiple dimensions: Quality of life is made up of a number of
dimensions, for example physical functioning, social interaction, family
and friends. The importance these dimensions have for individuals will
be different. This means that it is vital that the team identifies what is
important to the individual and what they see as a priority in terms of
the different dimensions of their quality of life.
Interaction: The interaction between the individual and their
environment may influence their quality of life. Environment can be
thought of as the rehabilitation environment, the home environment
and the community environment. Attitudes can also be considered as
part of the environment.

17

18

Section 1 REHABILITATION AND THE ICF

Congruence: Quality of life is affected by the difference between an

individual's hopes and expectations and their actual life. This can be
a major influence on the quality of life of people with chronic illness
and/or a disability, and is a factor that needs to be considered by
rehabilitation professionals.

These characteristics identify quality of life as more than an overall satisfaction with life. McDaniel & Bach's (1994) content analysis identified
quality of life as a dynamic, unique process that is influenced by the
dimensions of an individual's life. It is the product of the congruence or
lack of congruence between the individual's hopes and expectations and
their actual life conditions. It is interesting to consider whether different
populations see quality of life in a different way. Lau et al (2003), in
a study defining quality of life for elderly Chinese people who had had
a stroke, identified that there were similarities and differences in the
qualify of life components identified in the study. The study identified 36
components, which can be classified using the ICF categories (Table 1.3).
Some components can be listed under more than one category.
To obtain these components the following questions were asked in the
study:
What does it mean for you to have a good life?
What are your reasons for saying so?
Apart from [what was said], what other aspects do you feel are
important for you to have a good life?
How would you rate your own life? What are your reasons for
saying that your life is [very poor, poor, fair, good, very
good/excellent]? (Lau et al2003, p. 711)
Table 1.3 ICF categories and components of quality of life
Body Function
and Structures

Activities and Participation

Environmental Factors

Personal Factors

Limb function

Activity participation

Working capacity

Happiness

Bowel and bladder


function

Activities of daily living

Formal social support


Social integration

Dependence on
medication/treatment

Vision and hearing


Language ability

Dependence on
medication/treatment

Physical safety and security

Self-concept: body image

Cognition

Personal relationships

Housing

Self-concept: self-worth

Pain and discomfort

Sexuality

Finance

Energy and fatigue

Informal social support

Transport

Coping

Physical environment

Spirituality

Leisure

Life satisfaction
Sense of control

Sleep and rest


Opportunities for new
information and skills
Sense of acceptance
Source: With permission from Lau et al 2003

Negative feelings

Chapter 1 Rehabilitation at a Macro and Micro Level

Toassess what quality of life means for individuals, health-care professionals could use these questions more generally. In terms of the differences in
quality of life for Chinese and Western populations, Lau et al (2003) identified that the main differences were in the areas of 'eating/appetite', 'being
accepted/respected' and 'family', which Lau et al (2003) felt were due to
sociocultural factors.
Identifying quality of life as incongruence between the hopes and
expectations of individuals and their actual life conditions highlights the
need for rehabilitation health-care professionals to work with individuals
to narrow the gap between what they want and what is actually possible.
One way of doing this is to consider quality of life as being made up
of the roles we as individuals have in life. It is these roles that make up
our quality of life. Role theory can be used to explain the roles individuals assume during various situations (Chin 1998). It is these roles that
govern an individual's behaviour in a group and determine their relationships with other group members. The roles that individuals have can
be categorised as primary, secondary and tertiary (see Fig. 1.2).
Focusing on what is most relevant to the individual means that rehabilitation has to be concerned with that individual's quality of life. It is
necessary for the team to establish what is required to enable individuals to return to their former roles in life or to establish new ones in order
to achieve an acceptable quality of life. One way of doing this is to enable
the identification of life goals. In a literature review of 39 articles on life
goals and their influence on the rehabilitation process, Sivaraman Nair
(2003) concluded that:
Individuals strive either to attain or to avoid life goals
The participation in the rehabilitation programme maybe influenced
by life goals
It is not clear whether rehabilitation outcomes are improved by the
focus on life goals.
Although there is a need for further studies into the effect of life goals on
the rehabilitation process, life goals is one way of ensuring that the
Figure 1.2
roles

Categorisation of

19

20

Section 1 REHABILITATION AND THE ICF

rehabilitation programme is focused on what is important to the individual and their quality of life.
One concept to consider in terms of control is autonomy, which
implies a sense of control and can be seen as central to quality of life.
However, the choices they have and the resources available can limit
autonomy for individuals. This may highlight ethical issues, for example
the ethics of rehabilitation professionals enabling and encouraging individuals to take control and be autonomous when the resources required
for them to do so, in terms of facilities, equipment and financial support,
are not available. It may then be that professionals are setting individuals up to fail. A way of avoiding this is for rehabilitation professionals
and individuals to negotiate control and support, which would then
acknowledge the disempowered state of both individuals and rehabilitation providers (Clapton & Kendall 2002).
Wellness is an interesting concept to consider in relation to quality of
life. Wellness can be identified as a dynamic process that integrates
physical and psychosocial development, spirituality and the environment (Drayton Hargrove & Derstine 2001). Wellness can be achieved
without physical independence. Perhaps quality of life is about achieving a level of wellness that is appropriate for the individual and that is
identified by the individual. Putnam et al (2003) conducted a study to
explore how people living with long-term disabilities defined health and
wellness. The 99 adults in the study had a variety of disabilities including polio, cerebral palsy, multiple sclerosis, amputation and spinal cord
injury. Focus groups were used to explore health promotion practices,
barriers and opportunities to being healthy and well. The participants
defined health and wellness as being independent or self-determining;
being able to do what they wanted to do; having an emotional and physical state of well being; and being free from pain. The results highlighted
the fact that the state of being healthy and well is not solely dependent
on the individual but is associated with the cultural, social and physical
environment.

CONCLUSION
With the introduction of the NHS plan and the National Service Frameworks, the amount of rehabilitation work being carried out within the
National Health Service has increased, the focus being on an integrated
approach involving rehabilitation and social services.
Rehabilitation is a complex process, which needs to actively involve the
individual, their family and the team and commence at the acute stage. The
focus of rehabilitation needs to be on health, wellness and qualityof life. In
terms of quality of life,rehabilitation needs to focus on goals that are important to the individual. However, the concepts of autonomy and control need
to be taken into account. It is also important that health-care professionals
consider rehabilitation as a philosophy of care as well as a process.

Chapter 1 Rehabilitation at a Macro and Micro level

Teamwork isessential to rehabilitation; the team must workcollaboratively


with the individual towards the individual's goals. It is essential that rehabilitation professionals value and take into account the needs of individuals and understand their beliefs and values. More research is needed into
the effectiveness of interdisciplinary and multidisciplinary teamwork on
rehabilitation.

QUESTIONS FOR DISCUSSION


How do you ensure that rehabilitation is focused on the individual's
quality of life?
As a team, how do you see rehabilitation? Is it a process? A
philosophy? When does it begin?
How do others in your hospital or Trust see rehabilitation? Is there
a consistency in their views?
Do any aspects of the social identity approach apply to you as
a team?

References
Baker M, Fardell J, Jones B 1997 Disability and
rehabilitation: survey of education needs of health
and social services professionals. Disability and
Open Learning Project, London
Blackwell 1994 Blackwell's dictionary of nursing.
Blackwell Scientific Publications, Oxford
Bornman J 2004 The world health organisation's
terminology and classification: application to severe
disability. Disability and Rehabilitation 26:182-188
Cardol M, Dejong BA, Ward CD 2002 On autonomy
and participation in rehabilitation. Disability and
Rehabilitation 24:970-974
Chin PA 1998 Theoreticalbases for rehabilitation. In: Chin
PA, FinocchiaroD, Rosebrough A (eds) Rehabilitation
nursing practice. McGraw-Hill, New York
Clapton J, Kendall E 2002 Autonomy and participation
in rehabilitation: time for a new paradigm?
Disability and Rehabilitation 24:987-991
Department of Health 1999 Health Bill. HMSO,
Norwich
Department of Health 2000 The NHS Plan: a plan for
investment, a plan for reform. HMSO, Norwich
Department of Health 2001 National Service
Framework for Older People. HMSO, Norwich
Drayton Hargrove S, Derstine JB 2001 Definition and
philosophy of rehabilitation nursing: history and
scope including chronicity and disability. In:

Derstine JB, Drayton Hargrove S (eds)


Comprehensive rehabilitation nursing. WB
Saunders, Philadelphia
Embling S 1995 Exploring multidisciplinary teamwork.
British Journal of Therapy and Rehabilitation
2:142-144

Freeman M, Miller C, Ross N 2000 The impact of


individual philosophies of teamwork on multiprofessional practice and the implications for
education. Journal of Interprofessional Care 14:
237-247

Greenwood R, Barnes Mp, McMillan TM et al 1993


Neurological rehabilitation. Churchill Livingstone,
Edinburgh
Hayes N 2002 Managing teams: a strategy for success.
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Holland K, Hogg C 2001 Cultural awareness in
nursing and health care. Edward Arnold, London
Hutchings S, Hall J, Lovelady B 2003 Teamwork:
a guide to successful collaboration to health and
social care. Speechmark, Bicester
Jackson HF, Davies M 1995 A transdisciplinary
approach to brain injury rehabilitation. British
Journal of Therapy and Rehabilitation 2:65-70
Jackson MF 1984 Geriatric rehabilitation on an acute
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Lau ALD, McKenna K, Chan CCH et a12003 Defining


quality of life for Chinese elderly stroke survivors.
Disability and Rehabilitation 25:699-711
Lindeke LL, Block DE 1998 Maintaining professional
integrity in the midst of interdisciplinary
collaboration. Nursing Outlook 46: 213-217
McDaniel RW, Bach CA 1994 Quality of life: a concept
analysis. Rehabilitation Nursing Research
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McGrath J, Davis A 1992 Rehabilitation: where are we
going and how do we get there? Clinical
Rehabilitation 6:225-235
Meeburg GA 1993 Quality of life: a concept analysis.
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Nocon A, Baldwin S 1998Trends in rehabilitation policy:
a review of the literature. King's Fund, London
Norrefalk J 2003 How do we define multidisciplinary
rehabilitation? Journal of Rehabilitation Medicine
35:100-101
Oxford Paperback Dictionary 1998 The Oxford
paperback dictionary, 3rd edn. Oxford University
Press, Oxford
Patrinos OS, White N 2001 Culturally competent
rehabilitation care. In: Derstine JB, Drayton
Hargrove S (eds) Comprehensive rehabilitation
nursing. WB Saunders, Philadelphia
Payne M 2000 Teamwork in multiprofessional care.
Palgrave, Basingstoke
Proctor-Childs T, Freeman M, Miller C 1998 Visions of
teamwork: the realities of an interdisciplinary
approach. British Journal of Therapy and
Rehabilitation 5:616-618, 635
Pryor J 2000 Creating a rehabilitative milieu.
Rehabilitation Nursing 25: 141-144

Putnam M, Geenen 5, Powers L, et al 2003 Health and


wellness: people with disabilities discuss barriers
and facilitators to well being. Journal of
Rehabilitation 69: 37-45
Sinclair A, Dickinson E 1998 Effective practice in
rehabilitation: evidence from systematic reviews.
Kings Fund, London
Sivaraman Nair KP 2003 Life goals: the concept and its
relevance to rehabilitation. Clinical Rehabilitation
17:192-202.
Steiner WA, Ryser L, Huber E et a12002 Use of the ICF
model as a clinical problem-solving tool in physical
therapy and rehabilitation medicine. Physical
Therapy 82: 1098-1107
Stopes-Roe M, Cochrane R 1989 Traditionalism in the
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Waters KR 1986 The role of the nurse in rehabilitation.
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classification of functioning, disability and health.
World Health Organization, Geneva

23

Chapter 2

The International Classification


of Function and Health
Sally Davis, Sue Madden

INTRODUCTION
The World Health Organization (WHO) devised the International Classification of Functioning and Health (ICF) in 2001 as a reclassification of
the International Classification of Impairments, Disabilities and
Handicaps (ICIDH). The ICF is being used in rehabilitation centres to
structure the rehabilitation process. The aim of this chapter is to:
Explore the history of the ICF, its revisions and the rationale behind
them
Describe the classification and the theories that underpin it
Explore the uses of the ICF
Explore its relationship to rehabilitation - this will include the results
of a survey of rehabilitation professionals.
Relate the ICF to four different case studies.

THE INTERNATIONAL CLASSIFICATION OF IMPAIRMENT,


DISABILITY AND HANDICAP
Although the ICF has only recently emerged from the WHO (World
Health Organization 2001), it has in fact emerged from several alternative classifications, which can be traced back to the 1980s. The earliest
classification system from the WHO was the ICIDH, which was published in 1980 and is widely accepted to be the first system that
attempted to define and classify the impact chronic illness has upon an
individual's body. One of the main purposes of the ICIDH was to offer
an alternative classification system to the then well established International Classification for Diseases (ICD). The aim of the ICD was, and still
remains, to classify illnesses in terms of diagnoses and pathological
abnormalities and, while it remains a well accepted and useful tool used
by health-care professionals dealing with people with acute illnesses,
conditions that were more chronic in nature appeared, under the ICD
classification system, to have less relevance. As a result, the ICIDH was

24

Section 1 REHABILITATION AND THE ICF

developed to help standardise the way in which the impact of chronic


illness upon an individual was classified. When first published, the
lClDH was considered to be a useful tool across rehabilitation, medicine
and social welfare, primarily because it was the first classification system
that attempted to deal with the complex issues relating to the consequences of illness. The lCIDH has become key to UK policy and, since its
initial publication in 1980,has been used across a range of health-care initiatives, including health outcomes research, population surveys, coding
health information and vocational assessment and as an organisational
basis for social policy.

Impairment. disability
and handicap

In order to classify the impact chronic illness has upon an individual, the
lClDH presented three levels of classification:
Disease/ disorder ~ impairment ~ disability ~ handicap
lCD
lCIDH
lCIDH
lCIDH
Impairment, as the first classification within the lCIDH, was concerned
primarily with abnormalities of body structure, appearance and organ or
system function. As a result, impairment was defined as an abnormality or
disturbance of any cause that occurred within the body, which is then subsequently experienced by the body. Hence impairment was seen and
defined at the level of the body. The second level of classification, disability, is seen as a consequence of impairment and is considered in terms of
functional performance and activity by the individual. Hence, disability is
seen not to be at the level of the body, as is the case with impairment, but
is regarded as being at the level of the person. The final level of classification is handicap. Handicap is classified according to the impact the impairment and disability has upon the individual in terms of the person's
relationship with their environment. It was therefore argued that handicap
was concerned with and measured how a person with a disability was
able to interact and adapt to their surrounding environment. Impairment
as a classification was used as the basis of the lCIDH, which was divided
into nine chapters that focused upon the following impairments: intellectual; psychological; language; aural; ocular; visceral; skeletal; disfiguring;
generalised; sensory and other impairments. This reinforced the notion
that disability and handicap occurred as a consequence of an impairment.
The terms, definitions and relationships of impairment, disability and
handicap were developed by the authors of the lClDH as it was their
belief that these were more applicable to individuals with chronic illness,
and clinicians involved in their treatment, than the classification system
of diagnosis represented by the lCD. It was therefore argued that the
lCIDH was established to classify the illness not simply in terms of
a diagnosis but by the way in which the condition impacted upon an
individual's body. Nevertheless, as impairment was seen to emerge as
a result of disease/disorder within the body and the subsequent relationship between diagnosis, impairment, disability and handicap, when
the lCIDH was initially presented it was done so to support the classification of the lCD and was encouraged to be used with it. It was then
down to individual clinicians whether to use the lCD or the lCIDH, a
decision that should be influenced by their area of work.

Chapter 2 The International Classification of Function and Health

When the ICIDH was published, it was anticipated that it would be


used for a number of purposes. Among the functions of the ICIDH were
to help to identify the long-term impact that disease has upon individuals,
to identify the frequency at which particular health-care services are used
for certain conditions, and to help to organise medical notes on the basis
of the classifications used. A further function, and one that was central to
its development, was that, by standardising the way in which chronic illnesses were classified, it would make it possible to evaluate the effectiveness of health care within chronic conditions. It was also anticipated that,
by providing a universally accepted model that classified the impact of
disease upon an individual, the authors and the WHO hoped that the terminology and definitions of concepts would be standardised, thereby
making it more possible to compare data collected across countries.

Limitations of the ICIDH

As might be anticipated, creating an internationally accepted classifi


cation for the impact of chronic illness is, by its nature, problematic.
Although when the ICIDH was initially published in 1980 the authors
invited and anticipated criticism, the amount received was vast, which
ultimately led to revisions and the ICF, which was published in 2001. ln
order to understand the subsequent revisions and the emergence of the
ICF, it is important to consider why such revisions were necessary.
One of the major criticisms surrounding the ICIDH was the way in
which impairment, disability and handicap were defined. According to
the authors of the ICIDH, one of the original aims was to challenge the
medical model by moving the focus away from the diagnosis and pathological condition within a person's body and to look at the consequences
of that condition upon the body. The ICIDH wanted disability and handicap to be more of a focus within the health-care agenda and to have
more attention paid to how such conditions were impacting upon people, particularly in terms of the effect disability can have upon social
exclusion. In this sense, the authors argued that the ICIDH was the opposite of the medical model. However, critics of the ICIDH have argued the
contrary. The fact that impairment, disability and handicap are all determined by a disease or disorder within an individual's body clearly links
the ICIDH with the medical model, with many arguing that its very
foundations are in the medical model. As with the medical model, the
ICIDH and ICD function on the basis that clearly defined norms exist;
those outside such predefined norms are classified as having a disorder,
impairment, disability or handicap, or, as social commentators would
define it, as having some type of deviant behaviour away from normal
society.
A further argument supporting the notion that the ICIDH is an extension of the medical model is the definition of impairment, disability and
handicap. The definitions appear to emphasise the individual's role
within their disability, in the sense that, if the impairment impacts upon
what a person is able to achieve, then they are defined as having a disability. As a result, it is the individual who determines whether they are
disabled or not, with little attention paid as to how the environment may
impact upon the person's level of disability. Although the definition of

25

26

Section 1 REHABILITATION AND THE ICF


impairment attempts to address the role of the environment within the
disability, the emphasis remains with the individual, as it is defined by
how the individual interacts with and adapts to their environment.
Because of the focus placed upon the individual, the ICIDH appears to
support the notion that it is the individual's responsibility to adjust to the
disability and to find appropriate coping strategies that allow them to
function within their environment. A problem then emerges when trying
to use the ICIDH as evaluating the effectiveness of health-care interventions. Because social environments are not fully acknowledged within
the level of disability, and are limited within the level of impairment, it
is difficult to state whether a change that may occur in a disability and
handicap classification is due to the rehabilitation received from healthcare workers or to changes in the social environment of the individuals
with the disability. As a result, a key function of the ICIDH appears to be
undermined.
A further problem within the ICIDH was that it was developed with
no input from the disability movement group. One of the biggest criticisms of the classification from disability groups and others independent
of these is that the language used within the classification is negative,
particularly the term 'handicap'. A further problem with the ICIDH from
the perspective of the disability movement groups was the lack of
acknowledgement of the social model of disability within the classification. Frequently, disability movement groups argue, disability is a
socially constructed phenomenon imposed on people by society in
which the biggest challenge comes from their environment, both physically and mentally, and not from the individual's illness. If the environment was more accessible in a physical and mental sense, then a person
would immediately be less disabled and handicapped. Regardless of
how well a person may be able to cope with their impairment, the environment immediately limits a person's ability to function within society
as they may wish to.
Although most would suggest that the medical model and social
model of disability have a role to play within the construction of disability, the fact that the ICIDH was developed from the view of the medical
profession led to it being universally rejected by disability movement
groups. With such a large group rejecting the ICIDH, the long-term
future of the model was bought into serious question, which was in part
why revisions were made.

Revisions of the ICIDH

In 1992,it was agreed that the ICIDH needed to be revised in the light of

the criticisms that had been made. When the ICIDH was republished in
1993, the WHO agreed that the original version had not paid sufficient
attention to the role of the environment and that this need to be revised.
There was also some confusion as to the exact relationship between
impairment, disability and handicap; which also needed to be revised.
A further argument as to why the revision was appropriate arose from
developments in health care in terms of treatment and rehabilitation and
the wide range of people who were accessing such health-care provision.
As the number of people with long-term conditions increased, the need

Chapter 2 The International Classification of Function and Health

for a classification that incorporated the diversity of users needed to be


revisited. The WHO also argued that revisions were needed because the
ICIDH was being used in ways for which it had not been designed;
therefore, as the function of the ICIDH was expanding, these should be
incorporated within a new version.
Between spring 1996 and spring 1999, three new versions of the
ICIDH were produced. The alpha version was followed by beta-l in 1997
and beta-2 in 1999; these are collectively referred to as ICIDH-2. All the
revised versions aimed to provide a common language to describe functional states associated with frequently encountered health conditions.
The ICIDH-2 also aimed, by using neutral terminology, to improve communications between health-care workers, other sectors and people with
disabilities. It was also hoped that the ICIDH-2 would promote better
care and services that would focus on improving the participation in
society of people with disabilities.
Despite the revisions, a number of disability organisations in North
America continued to cite several key arguments against the ICIDH and
ICIDH-2. One of the continued arguments was the fact that disability
was defined in medical terms, whereby a disabled person is viewed as
not normal. In a sense, a person must enter into the sick role, access medical health-care services and follow health-care workers' advice.
Although the sick role may allow an individual to be excluded from
social obligation, the sick person also has to give up social rights and,
once they have entered the health-care world and are defined as being ill,
they will always remain so. However, many people with disabilities
argue that they are healthy and have no cause to access medical services.
Disability movement groups also remained concerned that a health-care
worker could define a person in terms of a disability and by doing so had
a degree of control over their life, particularly in terms of social rights,
while also making judgements on the quality of life an individual might
or might not enjoy.
Despite such criticism from the disability movement groups, the
authors of the ICIDH-2 do acknowledge that, while many people with
a disability lead healthy lives and medical intervention would have no
influence over the quality of those lives, it would also be a mistake to
ignore the effect that appropriate medical interventions can have on
other people's quality of life. Indeed, the authors argue that the most
urgently required care modalities for people with disabilities are medical
and rehabilitation care.

THE INTERNATIONAL CLASSIFICATION OF FUNCTIONING,


DISABILITY AND HEALTH
The ICF can be described as a component of health classification, rather
than a classification of the consequences of disease, as the ICIDH was. It
is intended to be universal, concerning all people irrespective of health
condition and age. The aim of the ICF is to classify health and healthrelated states by using categories within health and health related

27

28

Section 1 REHABILITATION AND THE ICF

domains. The ICF describes the situation of each person with different
health-related domains within the context of environmental and personal factors. It systematically groups health and health-related
domains. It provides a systematic coding scheme to code different health
and health-related states and permits the comparison of data between
health-care professionals and across countries. The WHO recommends
that users have training in how to use the classification.
The ICF consists of two parts covering functioning and disability and
contextual factors. Within each part there are two components, which
can be expressed in positive and negative terms. These components also
consist of various domains and constructs.
Human functioning in the ICF is identified as operating at three
levels:
Levell: at the level of the body or body part
Level 2: the whole person
Level 3: the whole person in a social context.
Disability exists when there is dysfunctioning at one or more of these
levels.
Functioning is the umbrella term used to cover positive aspects of
the ICF, i.e. body functions, structures, activities and participation,
whereas disability is used to cover the negative aspects - impairments,
activity and participation limitations. Disability is identified as being the
result of impaired interaction between individuals and the environment
(Bornman 2004).
The two parts of the ICF are Part 1: Functioning and Disability and
Part 2: Contextual Factors (Table 2.1). In the classification, each component of the ICF has different chapters covering different aspects of the
component. These chapters have codes allocated to them.
Table 2.1

Overview of the ICF


Part 1: Functioning and Disability

Components

Body function and structures

Domains

Constructs

Activities and participation

Part 2: Contextual Factors


Environmental factors

Personal factors

Body functions and structures Life areas (tasks, actions)

External influences of
functioning and
disability

Internal influences
on functioning and
disability

Change in body functions


(physiolog ica I)

Capacity: executing tasks


in a standard environment
Performance: Executing
tasks in the current
environment

Facilitating or
hindering impact of
features of the
physical, social and
attitudinal world

Impact of attributes
of the person

Positive aspect Functional and


structural integrity
Functioning

Activities
Participation

Facilitators

Not applicable

Negative aspect Impairment


Disability

Activity limitation
Participation restriction

Source: Reproduced from World Health Organization 2001 with permission of the World Health Organization; all rights reserved by the
Organization.

Chapter 2 The International Classification of Function and Health

Body functions.
structures and
impairments

Chapter titles: body


functions

Body functions: the physiological and psychological functions of


body systems and structures
Body structures: organs, limbs and their components: anatomical
parts of the body
Impairments: problems in body structure or function, e.g. weakness
in left arm, paralysis of lower limbs. Impairments can be temporary
or permanent; intermittent or continuous; progressive, regressive or
static. Impairments may result in other impairments; for example,
movement functions may be impaired by lack of muscle power. If an
individual has an impairment it doesn't necessarily mean that they
have a disease or are sick.
1.
2.
3.
4.
5.
6.
7.
8.

Chapter titles: body


structures

9.
10.
11.
12.
13.
14.
15.
16.

Activities and
participation.
limitations and
restrictions

Mental functions
Sensory functions and pain
Voice and speech functions
Functions of the cardiovascular, haematological, immunological
and respiratory systems
Functions of the digestive, metabolic and endocrine systems
Genitourinary and reproductive functions
Neuromusculoskeletal and movement-related functions
Functions of the skin and related structures
Structure of the nervous system
The eye, ear and related structures
Structures involved in voice and speech
Structure of the cardiovascular, immunological and respiratory
systems
Structures related to the digestive, metabolic and endocrine
systems
Structure related to genitourinary and reproductive systems
Structure related to movement
Skin and related structures

Activities: the execution of an action or task by an individual, e.g.


preparing a meal, getting dressed
Participation: the involvement of the individual in a life situation,
e.g. going shopping, socialising with friends
Activity limitations: the difficulties an individual may have in
performing activities, e.g. unable to wash, dress
Participation restrictions: the difficulties an individual may
experience in life situations, e.g. socialising, at work.
A single list covers a range of life areas for activities and participation.
Qualifiers are used in terms of performance and capacity to distinguish
between what an individual can do in their environment and what their
ability is in executing a task or an action.

Chapter titles: activity


and participation

1. Learning and applying knowledge


2. General tasks and demands
3. Communication

29

30

Section 1 REHABILITATION AND THE ICF

4.
5.
6.
7.
8.
9.

Contextual factors

Mobility
Self-care
Domestic life
Interpersonal interactions and relationships
Major life areas
Community, social and civic life.

Environmental factors make up the environment in which people live


and conduct their lives in terms of physical, social and attitudinal environment, e.g. social attitudes to disability, physical access to buildings
and services, integration into the community, opportunities for socialising. In the classification, environmental factors are focused on two levels:
Individual: referring to the immediate environment of the
individual, e.g. work, school, home - this includes contact with
others, e.g. family, peers, strangers
Societal: the formal and informal social structures, services and
systems that impact on the individual in the community or society this includes government agencies, transportation services and
regulations.
Body functions interact with environmental factors, e.g. interactions
between air quality and breathing, sounds and hearing.

Chapter titles:
environmental factors

Personal factors

1. Products and technology


2. Natural environment and human-made changes to environment
3. Support and relationships: people or animals that provide practical,
physical or emotional support
4. Attitudes: external to the individual, not their own attitudes.
Attitudes observable as a result of customs, practices, ideologies,
values, norms, religious beliefs
5. Services, systems and policies: public, private, voluntary services at
community, regional, national or international level.
Personal factors are the internal factors that have an impact on how an
individual is experiencing disability, e.g. gender, age, coping styles,
social background, education, profession, past and current experience.
This is the particular background of an individual, how they live their
life. It will consist of features that are not part of a health condition. Personal factors are not classified in the ICE No rationale is really given for
this except for difficulty of classifying them.
Disability and functioning are viewed as outcomes of interactions
between health conditions and contextual factors, which include environmental and personal factors. This is a shift in thinking away from the
medical model to the social model. The WHO describes the model the
ICF is based on as a biopsychosocial model, which is an integration of the
medical and social model. This acknowledges that disability is complex,
involving the body and the environment. For some individuals, disability will be entirely internal, while for others it will be external. This view
of the need for both the medical and social model is supported by

Chapter 2 The International Classification of Function and Health

Goodall (1995) in her suggestion of an interface model which accepts the


individual variations of a framework to underpin the Universal Declaration on the Human Genome and Human Rights (1997), which is that
everyone has a right to respect for their dignity and a right to be
respected for their uniqueness and diversity. The social model is not
a new idea; it has been around for many years being championed by people who are disabled as an alternative view to the medical model.
Although perhaps it has taken some time, the ICF does recognise the
effects of the social model. As Hurst (2003) says, it also provides a framework that can be developed.
Figure 2.1 represents the model of disability that the ICF is based on.
It reflects the interactions between the health condition and the ICF concepts. As can be seen, most of the interactions are two-way: for example,
an individual's health condition can affect their body functions and
structures, their activities and their participation. These may also in tum
affect their health condition. Also, body functions and structure, activities and participation may affect environmental and personal factors and
at the same time environmental and personal factors can affect an
individual's activities and participation.

THEORIES RELATED TO THE ICF


It is not explicit what if any theories underpin the ICE But it is useful to

consider the main theories used to underpin conceptual models and see
how they fit in with the ICE

Systems theory

Figure 2.1 Body functions,


structures and impairments
Source: Reproduced from World
Health Organization 2001 with
permission of the World Health
Organization; all rights
reserved by the Organization.

A system can be identified as components that interact with each other


within any particular period of time (Buckley 1967, cited in Hymovich
& Hagopian 1992). The individual can be identified as a system consisting of systems (e.g. circulatory, respiratory), interacting with other systems (e.g. family, environment). The ICF identifies systems in terms of

31

32

Section 1 REHABILITATION AND THE ICF

body structures, environmental and personal factors. Perhaps an intervention by health-care professionals might be to look at how these systems are interacting with each other and how this can be managed. For
example, if an individual is blind a change in their body structure may
affect how they interact with the environment. Existing models emphasising this theory are the Contingency Model of Long-Term Care
(Hymovich & Hagopian 1992), King's Open System Model (King 1981),
Neuman's Systems Model (Neuman 1982) and the Model of Human
Occupation (Kielhofner 2002).

Adaptation theory

Adaptation theories view change as being the interaction between the


person and the environment in terms of cause and effect. Adaptation theory helps us to understand what causes balance in the equilibrium and
what the effects are of a disturbed equilibrium (Leddy & Pepper 1989).
Roy's adaptation model (Roy 1984) identifies the set of processes that are
used by an individual to adapt to environmental stressors. This model
views the individual as being in constant interaction with a changing
environment. Adaptation is the process individuals go through in dealing with a stressor. Individuals use different coping mechanisms to adapt
to a stressor. How people cope is different for each individual and can be
seen as being individual to them. This links in with the rCF in terms of
personal factors. Factors such as age, gender, culture and lifestyle may
affect the way a person adapts to a stressor. Coping styles is also mentioned in the rCF,as a personal factor that needs to be taken into account.
The wayan individual deals with stressors may have an effect on the
outcome and on the intervention.

Motivational theory

One of the personal factors that can affect the rehabilitation process for
an individual is motivation. Motivational theory (Maslow 1968, cited in
Hoeman 1996)identifies that there are a number of factors that can influence an individual's motivation. Within the rCF motivation is identified
in terms of mental functions that produce the incentive to act; the conscious or unconscious driving force for action. It is categorised under
body functions. The rCF can help identify the factors that might affect an
individual's motivation, e.g, the environment, physical independence
and ability to participate in activities, personal factors.

Role theory

Roles can be identified as sets of expected behaviours or patterns (Chinn


1998).In different situations individuals will assume different roles. Role
theory can help explain the interactions and roles individuals and their
families assume when they are confronted with a stressor such as
disability or illness.
The effect on the individual if they are unable to resume valued roles
or if their roles change is an important element of rehabilitation and could
affect the way people adapt. This links in with the rCF to a degree in terms
of activities and participation, with the focus on interpersonal interactions
and relationships, engagement in education, work and employment, and
engagement in community and social life. However one of the areas
identified by WHO for further development is quality of life.

------------'-

Chapter 2 The International Classification of Function and Health

Self-care theory

Self-care theory identifies self-care actions as being activities that individuals perform to maintain health and well being (Orem 1985). Individuals act in a manner that will maximise their health, by learning and
performing activities that will support their health (Davis & O'Connor
2004). Personal self-care is essential for individuals to be able to develop
a sense of self-worth and independence.
It is in Orem's model of nursing (Orem 1985) that the concept of selfcare and self-care deficit theory has been developed and implemented by
nurses. Orem not only identifies self-care in her theory but also talks
about:
Self-care deficits, where individuals are unable to perform self care
due to limitation
Self-care agency, which is the individual's ability to perform self-care
and may be affected by factors such as motivation, age, skills and
knowledge
Therapeutic self-care demand, which includes the actions required
by the individual to maintain health
Other agencies - the ability of health-care professionals to provide
the care required by the individual.
In relation to the ICF, the codes allocated to the constructs enable healthcare professionals to assess an individual's level of self-care and also to
monitor that self-care. In terms of self-care being affected by other factors, the ICF also enables health-care professionals to consider these
factors in terms of the environment and personal factors.

USES OF THE ICF


The ICF is meant to cover the lifespan but has not been used extensively
in studies involving children. Ogonowski et al (2004) looked at the interrater reliability in assigning ICF codes to children with disabilities in the
USA.This was the first of a number of studies looking at how the ICF can
be used effectively with children with disabilities. The study involved 60
children with a range of developmental disabilities ranging in age from
9 months to 17.75 years. Researchers rating the six domains in the Activities and Participation component considered 40 codes. Three paediatric
functional assessment tools were used to assess the children and then it
was determined which of the 40 codes applied to each child, on the basis
of items from the assessment measures. The results of the study suggest
that it is feasible to use existing functional assessment tools to apply
some of the codes from the Activities and Participation components.
However the researchers were unable to achieve a level of agreement on
many of the codes. Ogonowski et al (2004) recommend the development
of alternative functional assessment tools.
It seems to be at the level of activity and participation that current
research is focusing. Parenboom & Chorus (2003), in a literature review,
investigated which existing survey instruments assessed participation.
They found nine instruments that measured participation to some
extent, but only two involved most of the items at participation level.

33

34

Section 1 REHABILITATION AND THE ICF

They concluded that more discussion was needed to distinguish


between activity and participation.
Jette et al (2003) conducted a survey of 150 adults aged 60 plus living
in the community in the USA to identify distinct concepts within physical functioning that fit in with the activity and participation levels. Physical functioning assessment instruments were used to collect data. Jette
et al (2003), along with Ogonowski et al (2004) and Parenboom and
Chorus (2003), highlight the need for further development of the ICF and
development of assessment tools that measure the specific constructs
within the ICE
A study describing the use of the ICIDH and the subsequent ICF by
nursing and allied health professionals in the Netherlands (Heerkens
et al 2003) concluded that the ICF was too general to be used to describe
the functioning of the individual at the level of detail needed by healthcare professionals. The authors cited as an example the fact that knowing
that an individual has a problem 'washing the whole body' does not help
the nurse or occupational therapist to know where the problem lies. Is it
not being able to handle the soap, being unable to reach all parts of the
body or not knowing the right order of actions involved?
In terms of intervention the ICF can be used to determine whether
a particular intervention programme has been effective at the levels of body
function and structure, activity and participation (Bornman 2004). The ICF
can help to emphasise the strengths of individuals with a disability by
focusing on their participation in a particular environment; it can assist
individuals to participate more extensively through interventions aimed at
enhancing their competence by removing barriers and increasing facilitators in the environment; it can provide an indication of the environmental
and personal factors that might hamper participation (Bornman 2004).

Relationship to
rehabilitation

Rehabilitation is a continuous process, which involves identifying problems and needs, and relating these problems to impaired body functions
and structures, the factors of the person and the environment. The
process also includes the management of rehabilitation interventions
(Stucki et al 2002). If the aim of rehabilitation is to maximise an individual's quality of life to what they want, then rehabilitation needs to focus
on more than impairment and disability. It has to take into account the
environment and the context that individual comes from. The ICF gives
rehabilitation professionals a framework to enable them to do this.
The focus on quality of life has to stem from the beginning of the rehabilitation process, which ideally should be during the acute stages. This
can be achieved by identifying goals for participation, involving the family and taking into account contextual factors (Rentsch et al 2003).
Although there are elements identified in the ICF that relate to quality of
life, quality of life itself is not considered (Wade & Halligan 2003). Wade
& Halligan (2003) suggest an expanded WHO ICF model of health and
illness that includes a description of quality of life. The expanded model
includes other concepts that have an effect on quality of life such as happiness and role satisfaction. Wade & Halligan (2003) identify the need for
the construct of free will to be added as a capacity.

Chapter 2 The International Classification of Function and Health

The ICF enables rehabilitation to move away from illness towards


health, making it a more positive process. Because of its focus on health,
the ICF can also enable rehabilitation professionals to adopt more of a
health promotion focus. The model in Figure 2.2 highlights how health
promotion and rehabilitation can work together. It is based on the results
from a study undertaken with rehabilitation nurses on their understanding of health and health promotion (Davis 1995). It can help rehabilitation
professionals identify the concepts more specifically.

Health promotion

Figure 2.2 Health promotion


model for nurses working in
neurologica I rehabilitation

Within the model health promotion and rehabilitation are concerned


with promoting wellness no matter what the individual's limitations in
activities and participation are. Wellness can be equated with wellbeing,
which is described in the ICF as encompassing all those aspects that
make up a 'good life'. This includes physical, social and mental aspects.
Domains of wellbeing are identified as being education, employment,
environment, etc.
In order to promote health promotion, rehabilitation professionals
need to address the following issues:

35

36

Section 1 REHABILITATION AND THE ICF


Social and physical environment: access to leisure facilities; people
with disabilities having the same access in the environment as
people without disabilities; access to adequate support services and
resources to enable individuals to return to their own environment;
support groups in the community for individuals and their families;
support for employers to enable individuals to return to work
Prevention: active enforcement of seat belt and drink/ driving laws;
stronger penalties for drink driving; screening for high blood
pressure; family planning advice; education on diet, alcohol, drugs,
smoking and accident prevention
Policy making: equal opportunities policies for people who are
disabled; policies related to alcohol and tobacco advertising; policies
related to new buildings.
These issues relate to the contextual factors in the ICE
Health education

The aim of health education within health promotion is to empower individuals by providing them with information and decision-making skills.
Health education activities include:
Promotion of independence: self-care activities; mobility;
collaborative goal planning; instructing the individual and their
family
Adaptation to lifestyle: counselling including sexual counselling;
psychological support; teaching new skills; managing stress
Health maintenance: nutrition, dental hygiene and physical exercise;
avoidance of toxic substances, e.g. smoking, drugs and alcohol;
management of epilepsy; monitoring blood pressure and blood glucose.
These issues relate more to the activity and participation factors in the ICE

Individuals

Within the model individuals are identified as being co-managers of


their rehabilitation programme with control over their own health. The
amount of control may vary with other factors, e.g. the environment,
other people's attitudes. This is in keeping with the contextual factors of
the ICE The family is recognised as being an important part of the individual's life if that is what the individual wants. The relationship
between the individual and the team is one of partnership.

REHABILITATION PROFESSIONALS AND THE ICF


The rehabilitation professional's role is one of informing and supporting
individuals to enable them to make decisions. This role involves interdisciplinary goal planning. The ICF can be used to ensure that individual-centred goal planning is a reality and that the team are focusing on
more than functioning, taking into account contextual factors as well.
It is perhaps easier to see how the ICF framework will be adopted as
a common language and will be used to guide assessments, goal planning, etc. than how the classification will be used, although the ICF does
provide health-care professionals with a coding system that, although it

Chapter 2 The International Classification of Function and Health

could be seen as time consuming to use, with development could be


used to guide assessment and interventions. Stucki et al (2002) make the
point that the success of the ICF as an agreed global language will
depend on its acceptance by rehabilitation practitioners. An unpublished
survey conducted in 2001 at an international conference for rehabilitation nurses gives some insight into the usage of the ICIDH framework
and practitioners' awareness of the ICF. Although mainly a nursing conference the participants consisted of other health-care professionals.

Results of survey

Unpublished survey, 2001: 108 questionnaires.


Five questions were asked, with space for comments. The results will be
discussed under each question:

Question 1. What area


of health-care practice
do you work in and what
country?

96 out of 108 participants responded to this question. The majority of


participants were from the UK, with participants from England, Scotland
and Wales. The main areas of people's work were neurological rehabilitation; stroke services and elderly rehabilitation. The questionnaire
didn't ask for the respondent's professional group. It can be assumed
that most of the respondents were nurses, with a small number of physiotherapists and occupational therapists (Table 2.2).

Table 2.2 Respondents' area


of health-care practice and
country

Area

Total no. Country

Neurological rehabilitation

29

England: 20; Australia: 7; Scotland: 7;


Ireland: 1

Stroke services

16

England: 12; Scotland: 4

Elderly rehabilitation

14

England: 7; Scotland: 5; Wales: 2

Rehabilitation medicine

England: 3; Wales: 4

Community rehabilitation

England: 6; Scotland: 1

Orthopaedic

England: 4

Lecturers

England: 3; Wales: 1 (learning disabilities)

Physical disability

England: 3

Private sector

England: 1; Scotland: 2

Day hospital

England: 1; Scotland: 1

Renal

England: 1

Back pain rehabilitation

England: 1

Amputee rehabilitation

England: 1

Multiple sclerosis

England: 1

Palliative care

England: 1

Rehabilitation administration

USA: 1

Notspecified

Isle of Man: 1

37

38

Section 1 REHABILITATION AND THE ICF

Question 2. Do you use


the ICIDH framework in
your clinical area? If so
how?

The answers were No = 94, Yes = 14.Of the 14 respondents who said they
did use the ICIDH in their clinical practice, 12 identified specifically the
following areas: Teaching (3), Audit(l), Planning patient goals (4), Identifying outcomes (2),Administration (1), Clinical practices (1).

Question 3. Are you


aware of the revision of
the ICIDH to the ICF?

91 respondents said No and 17 said Yes.

Question 4. Has this had


any impact on your
practice? If so how?

The answers were: No =40, Yes = 8, Not applicable =21, No answer =39.
Of the eight respondents who answered Yes, seven said that the revision
had impacted on their practice in the following areas:

Question 5. Do you think


it could make a difference to your practice? If
so how?
Comments on the ICF

Admission
Auditing teams' records
Outcomes' measurement and goal setting
Policy development
Teaching
Physiotherapists using it
Setting up rehabilitation services
Changing practice.

The responses were No =4, Yes =44, Unsure =36, Not applicable =1, No
answer = 23. 23 respondents identified ways in which the framework
could make a difference to their practice. These can be categorised as
listed in Table 2.3.
The following comments were made on the ICF:
'Keep it simple and user friendly'
'It looks similar to occupational therapy models'

Table 2.3 Areas where the

ICF framework might make a

difference to practice

Area

Possible Improvement

Assessment and outcomes

Assessment guidelines: outcome measurement

Audit

Evaluation of service; setting standards; guide to best


practice

Common language:
goal setting

To organise patient goals

Improving documentation

Enabling the team easier access to what is important


for the patient re: quality of life; better dissemination
of information to the team

Discharge

To pick up on social problems ratherthan focus on


function

Staff levels

In terms of patient dependence

Service planning

Describing the needs of client groups

Shift focus of team to


health and participation

Make the team less disease focused; clarify the disease


process; giving patients more independence and
self-esteem

Chapter 2 The International Classification of Function and Health

'Needs training time'


'Looks like a lengthy process'
'As with all models, it is the way it is applied to practice that makes
it workable'
'Fingers crossed it helps us really focus on what is important'.

Conclusions

----------

Although this was a small survey and specialised, in that it targeted


a certain group, some conclusions can be drawn from it that are useful to consider, particularly as the use of the ICF is currently under
study.
It is interesting that only 13% of the conference delegates used the
ICIDH in practice. One might have expected this percentage to be
higher in light of the literature advocating the use of the ICIDH in
rehabilitation (Post et al 1999, Gray & Hendershot 2000, Wade 2001,
de Kleijn-de Vrankrijker 2003). Only 15.7% were aware of the revision
of the ICIDH to the ICF, which maybe is not surprising as in 2001 the
revision was only just being publicised. In terms of practice, 7.4% said
that the ICF had had an impact on their practice in terms of admission,
auditing, outcomes' measurement, goal setting, policy development
and teaching. In terms of the difference it could make to practice,
40.7% thought it would make a difference. Interestingly 33.3% were
unsure and 12% didn't answer. This could indicate the need for supply
of information and knowledge about the ICF to health-care professionals to enable them to see how the ICF could be relevant to their
practice.
The areas identified by the respondents where the ICF might make
a difference equate with the views in the literature:
Assessment and outcomes (Cieza et al2002, Heerkens et al 2003)
Audit (Stucki et al 2002, Kearney & Pryor 2003)
Common language (Dahl 2002,Stucki et al 2002, de Kleijnde Vrankrijker 2003, Rentsch et a12003)
Documentation (Heerkens et al 2003, Kearney & Pryor 2003, Rentsch
et a12003)
Discharge (Rentsch et al 2003)
Staffing levels
Service planning (Crews & Campbell 2001, Dahl 2002, Stucki et al
2002, Hurst 2003)
Shift of focus (Hurst 2003).
The conclusions that can be drawn from the survey are that the ICF
could be very useful for rehabilitation, as it enables health-care professionals to focus on health and participation rather than on illness
and disability and provides them with a common language. The ICF
could enhance the rehabilitation process in terms of assessment, outcomes, discharge and service planning. However, the respondents did
identify the need for the ICF to be user-friendly and for it to be
a shorter process. The need for training to use the ICF relates to
Bornman's (2004) view, which categorises the ICF as a complex coding
system.

39

40

Section 1 REHABILITATION AND THE ICF

CASE STUDIES
The last section in this chapter will consider four case studies in relation
to the IeF in an attempt to relate the preceding discussion to practice.
These case studies will also be used throughout the book to demonstrate
different models and issues.

CASE STUDY JOEY


Joey is a 50-year-old single unemployed man who
lives with his partner on the tenth floor of an
apartment block. His partner, John, works as a selfemployed plumber. Joey has been unemployed for
the last 18 months. He has always enjoyed cooking
and now has decided to do all the cooking as it
makes him feel that he is contributing to the partnership and therefore increases hisself-esteem and
makes him less anxious and stressed. However, during his period of unemployment he has put on
4 stone. Joey has recently recovered from a heart
attack and is now back at home.

attack. His performance changed when he lost


hisjob, in that he was not as active as he had
been and was less motivated.
Since the heart attackJoey has not been able to
climb stairs and he and John have not resumed
their sexual relationship.

Environmental factors

There are changes in Joey's heart in terms of a weak


valve. The main change in body function is that
Joey is no longer able to undergo any major physical exertion, e.g. running for any length of time,
climbing a large number of stairs.

Joey and John have always had to put up with


the negative attitude of some of the tenants in
the apartment block. Since Joey's heart attack
this has worsened, with homophobic graffiti
being written on the walls.
Although there is a lift to the flat, this is occasionally not working, which in the past meant
that Joey had to walk up ten flights of stairs.
Following his heartattackJoey is afraid to leave
the flat in case the lift isn't working when he
gets back.

Activities and participation

Personal factors

Capacity

Joey has lost motivation since he became unemployed. He has found comfort in eating, which
has resulted in him putting on weight.
Joey is generally an anxious person. He worries
about what other people think of him. He is not
secure in his relationship with John. This has
worsened since he became unemployed and had
the heartattack. He feels that John doesn't find
him attractive and will look elsewhere.

Changes in body functions and structures

Before the heart attack Joey led generally


a sedentary lifestyle, going out only to go to the
shops. He had an active sexual relationship with
John. Since the heart attack, Joey's capacity has
only changed in terms of him not being able to
climb stairs or run.

Performance
Joey's actual performance since the heart attack
is not much different from before his heart

Chapter 2 The International Classification of Function and Health

CASE STUDY CHAN


Chan is a 42-year-old man who lives with his wife
and two children (aged 10and 8) in a semidetached house in a rural community. Following
a stroke involving the middle cerebral artery in the
non-dominant hemisphere, Chan has been referred
to the local rehabilitation unit. Chan has had raised
blood pressure for 3 years and has been attending
regular appointments with his GP but has not followed any advice given in relation to his lifestyle.
As a result of the stroke Chan has a left-sided
weakness of his left arm and leg.

Environmental factors

Chan has a change in the functions of his left arm


and leg. There has been a change in structure in
terms of a bleed into the brain.

Chan lives in a close community with supportive


neighbours and friends. Already they have been
supporting Chan's wife and the children.
Chan is the only driver in hisfamily and the car
is a necessary means of transport. There is a limited bus service.
In terms of his home environment, the toilet and
bathroom are upstairs, as is Chan's bedroom.
There are steps leading into the house and into
the back garden.
Chan's employers are not keen for him to return
to work as they are concerned that he will not be
able to fulfil his work role and that there may be
health and safety issues. They are also not open
to Chan returning to work in a part-time role.

Activities and participation

Personal factors

Capacity

Chan has been the main wage earner in hisfamily, with hiswife looking after the house and his
children. This is an important role for a man in
Chinese culture. Chan feels that he has lost the
respect of his wife and family because he is
unable to resume this role at present.
Chan's children are having difficulty relating to
him. Chan was always playing with his children
but because he is not able to resume that role at
present hefinds it difficult to relate to them.
Chan and his wife enjoyed a physical relationship
before his stroke. Since his stroke his wife is
afraid to touch him in case she hurts him and
Chan feels he is a lesser man and that hiswife
won't want him any more.
In the past, Chan and his wife always talked over
any problems and issues. This was their way of
coping. Since the stroke they have not really
talked about the situation and the future.

Changes in body functions and structure

Before the stroke Chan was independent in all


activities of daily living. Since the stroke, Chan
has the capacity to be independent in most
activities of daily living if hisclothes are
adapted, if his bed is at the right height and if he
showers rather than having a bath. Chan is able
to walk unaided with the help of a walking aid
but he needs assistance with stairs.

Performance
In terms of actual performance Chan is not able
to dress himself without assistance. He needs
help to get in and out of bed.
This difference between capacity and performance is due to Chan's lack of confidence in his
abilities. When Chan returns home the physical
environment may affect his performance.

41

42

Section 1 REHABILITATION AND THE ICF

CASE STUDY MYRTLE


Myrtle is a 75 year old West Indian woman who
lives in a nursing home. She was a health-care
assistant working nights for 40 years in a community hospital, retired at 65 and has six children and
12 grandchildren. Five years ago Myrtle's husband
died unexpectedly of a heart attack. Myrtle found it
hard to cope without him, despite the support of
her children. Two years ago Myrtle fell at home and
fractured her right neck of femur. She made a good
recovery from this; however, she and her family
agreed that it would be better if she moved to a
nursing home. They were particularly concerned
about Myrtle's poor eyesight and lapses of concentration, which had caused herfall at home. Since
being in the nursing home Myrtle has had a number
of falls, which have again been due to lapses of
concentration and poor eyesight. Myrtle does have
glasses but forgets to wear them. Two weeks ago
she fractured her left neck of femur and is now
back in the nursing home having physiotherapy.

Changes in body functions and structure


In terms of body functions there has been a change
in the function of Myrtle's left leg and in the functioning of her eyes, this is due to the change in
body structure in terms of her fracturing her left
femur. There may also be a change in the structure
of hereyes that is affecting their functioning.
Although not proven there may be some changes in
structure and function that may account for
Myrtle's lapses of concentration and poor memory.

Activities and participation


Capacity
Before she fractured her left neck of femur Myrtle was able to look after herself in terms of self
care. She joined in with the social activities of

the home. Since the fracture Myrtle is beginning


to walk with the physiotherapist. She does have
the capacity to wash and dress herself but she
needs help with putting on her lowergarments.
Myrtle is not able to bath on her own.

Performance
In terms of actual performance Myrtle will not
wash and dress herself. She continually asks for
assistance.
This difference between capacity and performance is due to Myrtle taking on the 'sick role',
not wanting to get out of bed or perform any
self-care activities for herself.
Myrtle's memory may also affect her performance
in that she is unable to remember what people
have told her.

Environmental factors
The physical environment of the nursing home has
in the past not caused any problems for Myrtle.
She is on the ground floor, sharing a room with
another female resident that has its own toilet and
shower. There is also a communal bathroom for
residents. However, since this latest fracture,
sharing a room has been causing distress both to
Myrtle and to herroom-mate. Myrtle calls for the
nurses constantly, either by call bell or byshouting
out.

Personal factors
Myrtle has always been a lady of 'strong character: She has been the strong one of the family,
taking control of family events, being 'advisor' to
herchildren.
Since her husband's death Myrtle has taken on
a more passive role, wanting to be told whatto do.

Chapter 2 The International Classification of Function and Health

CASE STUDY SHELLY


Shelly is 27 and works for a law firm in the city.
She graduated with a first class honours degree
from her university and is considered a 'high flyer'
in her field. Her family are living in Canada and she
travels to see them frequently. She has a wide circle
of friends and for the past year has been seeing
Jonathan, who works for the same firm. It was
while she was on a wintersports holiday in Europe
with Jonathan that she had a skiing accident, which
left her with spinal cord injuries. As a result of this
she has a spinal cord lesion at T10. After spending
some time in a European hospital while her condition was stabilised, she has now flown back to
a spinal injuries unit, where she has been receiving
rehabilitation. The team working with Shelly have
noticed her becoming more and more withdrawn
since her admission, and she has been talking to
them about how hopeless she feels and that she
wishes her life would end.

Changes in body functions and structure


In terms of structure Shelly has an injuryto her
spine, which has caused a change in the functions
of her legs. She is paralysed from the waist down.
There is also some change in bladder function,
which means that Shelly doesn't always know when
she needs to urinate.

Activities and participation


Capacity
Before the accident Shelly was independent in all
activities of daily living. Since the accident she

has the capacity to be independent in an electric


wheelchair, using a transferring board to move
from chair to bed. She is continent of urine generally but still has the occasional accident. She is
able to change herown clothes.

Performance
Shelley's actual performance is hindered by her
depression. She finds it hard to motivate herself
to be self-caring and also to take an interest in
her personal affairs. This has resulted in her
needing help in washing, dressing and transferring. When she is incontinent of urine it is generally because she doesn't have the motivation to
get to the toilet in good time.

Environmental factors
Shelly has not been able to return to her flat
because of problems with access. She wants staff
and herfamily to tell her what to do and she
relies on Jonathan to deal with her personal
affairs.

Personal factors
Shelly has always been a sociable person with
a wide circle of friends. She liked trying new
experiences and enjoyed being active, participating in different sports.
Shelly was ambitious in terms of herjob. She
liked challenges and needed to feel in control of
herlife.

Looking at the case studies it can be seen how using the ICF can help create a more complete picture of an individual, considering more than just
their disabilities. The identification of personal factors can enable professionals to see what the implications of these are for the individual's function in terms of physical and psychological. This is highlighted in the
case of Shelly in that it is the psychological aspects that are affecting her
physical function.
It is interesting that in all of the case studies there is a difference in the
activities and participation section between capacity and performance.
The reasons for this difference are also different in each case study. For
Myrtle, taking on the sick role may affect her actual performance. Her
reaction may also be because she does not want to be left on her own and

43

44

Section 1 REHABILITATION AND THE ICF


in fact her need is to have constant interaction with others. The focus on
capacity and performance in the ICF enables this to be recognised; however Wade & Halligan (2003) point out that the ICF doesn't consider how
much the individual's choice influences their performance or activities.
Chan's performance is affected by his confidence in his abilities, which
may also be affected by his environment. Shelly's performance is affected
by her lack of motivation, which can be seen as resulting from her
depression and feelings of hopelessness.
One of the limitations of the ICF is that it doesn't acknowledge that the
individual has a past and a future (Wade & Halligan 2003). All the case
studies highlight the influence of time on the individuals.

CONCLUSION
This ICF developed from the ICIDH to encompass changes in thinking about
the medical and social model of disability. This move from focusing on disability to focusing on what is important to the individual. considering contextual and personal factors, fits in with the aim of rehabilitation being to
optimise the individual's qualityof life.This chapter has considered the need
for the changes and discussed in more detail the various elements of the ICE
The survey that was carried out, although now a few years old, supports the
need for the ICF but also highlights the need for training for professionals to
use it.
The ICF is a useful tool for rehabilitation professionals because it provides
a common language and also ensures that they are truly taking a holistic
view of theclient. It could also assist in client-centred goal planning. The ICF
needs to continue to develop, as described in the literature, and more
research needs to be undertaken as to its usefulness in rehabilitation.

QUESTIONS FOR DISCUSSION


How can the ICF be used in your team to meet the aims of
rehabilitation for individuals?
How does the ICF fit in with other frameworks you use in practice?
If you already use the ICF in rehabilitation practice, have you
identified any limitations with it and if so how might these be
overcome?

References
Bornman J 2004The World Health Organisation's
terminology and classification: application to severe
disability. Disability and Rehabilitation 26:182-188
Buckley W 1967 sociology and modem systems theory.
Prentice-Hall, Englewood Cliffs, NJ

Chinn PA 1998 Theoretical bases for rehabilitation. In:


Chinn PA, Finocchiaro 0, Rosebrough A (eds) Rehabilitation nursing practice. McGraw-Hill, New York
Cieza A, Brockow T, Ewert T et al 2002 Linking healthstatus measurements to the international

Chapter 2 The International Classification of Function and Health

classification of functioning, disability and health.


Journal of Rehabilitation Medicine 34:205-210
Crews JE, Campbell VA2001 Health conditions,
activity limitations, and participation restrictions
among older people with visual impairments.
Journal of Visual Impairment and Blindness
August:453-467
Dahl TH 2002 International classification of
functioning, disability and health: an introduction
and discussion of its potential impact on
rehabilitation services and research. Journal of
Rehabilitation Medicine 34:201-204
Davis S 1995 An investigation into nurses'
understanding of health education and health
promotion with a neuro-rehabilitation setting.
Journal of Advanced Nursing 21:951-959
Davis S, O'Connor S 2004 Rehabilitation nursing:
foundations for practice, 4th edn. Bailliere Tindall,
Edinburgh
De Kleijn-de Vrankrijker MW 2003 The long way from
the International Classification of Impairments,
Disabilities and Handicaps (ICIDH) to the
International Classification of Functioning,
Disability and Health (ICF). Disability and
Rehabilitation 25:561-564
Goodall C 1995 Is disability any business of nurse
education? Nurse Education Today 15(5):323-327
Gray DB, Hendershot GE 2000 The ICIDH-2:
developments for a new era of outcomes research.
Archives of Physical Medicine and Rehabilitation
81(2):10-14
Heerkens Y, van der Brug Y, Ten Napel H et al 2003
Past and future use of the ICF (former IDlCH) by
nursing and allied health professionals. Disability
and Rehabilitation 25:620--627
Hoeman S 1996 Rehabilitation nursing: process and
application, 2nd edn. CV Mosby, St Louis
Hurst R 2003 The international disability rights
movement and the ICE Disability and
Rehabilitation 25:572-576
Hymovich DP, Hagopian GA 1992 Chronic illness in
children and adults: a psychological approach.
W B Saunders, Philadelphia
Jette AM, Haley SM, Kooyoomjian JT 2003 Are the ICF
activity and participation dimensions distinct?
Journal of Rehabilitation Medicine 35:145-149
Kearney PM, Pryor J 2003 The International
Classification of Functioning, Disability and Health
(ICF) and nursing. Journal of Advanced Nursing
46:162-170
Kielhofner G 2002 Model of human occupation, 3rd ed.
Lippincott Williams & Wilkins, Baltimore

King 1M1981 A theory for nursing: systems, concepts,


process. John Wiley, New York
Leddy S, Pepper IM 1989 Conceptual bases of
professional nursing. JB Lippincott, Philadelphia
Maslow AH 1968 Toward a psychology of being, 2nd
edn. Van Nostrand-Reinhold, Princeton, NJ
Neuman B 1982 The Neuman Systems Model:
applications to nursing education and practice.
Appleton-Century-Crofts, Norwalk, CT
Ogonowski JA, Kronk RA, Rice CN et al 2004 Interrater reliability in assigning ICF codes to children
with disabilities. Disability and Rehabilitation
26:353-361
Orem 0 1985 Nursing - concepts and practice, 3rd
edn. Prentice-Hall, London
Parenboom RIM, Chorus AMJ 2003 Measuring
participation according to the international
classification of functioning, disability and health
(ICF). Disability and Rehabilitation 25:577-587
Post MWM, deWitte LP,Schrijvers AJP 1999 Quality of
life and the ICIDH: towards an integrated
conceptual model for rehabilitation outcomes
research. Clinical Rehabilitation 13:5-15
Rentsch HP, Bucher P, Dommen-Nyffeler I et al 2003
The implementation of the international
classification of functioning, disability and health
(ICF) in daily practice of neurorehabilitation: an
interdisciplinary project at the Kantonsspital of
Lucerne, Switzerland. Disability and Rehabilitation
25: 411-421
Roy C 1984 An introduction to nursing: an adaptation
model, 2nd edn. Prentice Hall, Englewood Cliffs, NJ
Stucki G, Ewart T, Cieza A 2002 Value and application
of the ICF in rehabilitation medicine. Disability and
Rehabilitation 24:932-938
Universal Declaration on the Human Genome and
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english/law/ genome.htm
Wade Dr 2001 Social context as a focus for
rehabilitation. Clinical Rehabilitation 15:459-461
Wade DT, Halligan P 2003 New wine in old bottles: the
WHO ICF as an explanatory model of human
behaviour. Clinical Rehabilitation 17:349-354
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World Health Organization 2001 International
classification of functioning, disability and health.
World Health Organization, Geneva

45

Chapter

49

Models - terminology and usefulness


Kevin Reel. Sally Feaver

INTRODUCTION
The aims of this chapter are:
To explore and define the terms associated with conceptual models
To identifythe relationship between these concepts
To discuss the potential benefits of applying a model to guide practice
To consider the use of models from the perspective of an individual client.

This chapter will look at the terminology associated with conceptual


models, and the muddle that seems to characterise the writing on the
subject. This muddle stems in part from the differing definitions of concepts such as frames of reference, treatment approaches, theories and
models. There is divergence or disagreement arising within each individual profession (McKenna 1994, Pedretti & Early 2001); thus, when
bringing a team of different professionals together, it may seem an
insurmountable challenge to gain even a modicum of agreement
between them all. For the practitioner, frustration and a sense of professional isolation can result - but for the client, the effect could well be
more serious.
While attempting to clarify what we understand to be the relationship
between these concepts, we will also consider some of the potential benefits that accrue from the application of a conceptual model to guide
practice, both for the client and for the professional. In elaborating our
use of the terms it is likely that we will use some of them differently
from, even contradictorily to, other writers. While this is unfortunate, the
most important outcome is awareness of the different concepts and their
contribution to the case we wish to make in favour of the use of conceptual models. The semantic debate is most probably intractable; it is the
engagement in it that is important.

Shelly

----------'-

To put this discussion into context, let us consider briefly the situation of
Shelly who was introduced in Chapter 2. She has had a traumatic injury

50

Section 2 MODELS AND THEORIES

to her spine and is now on an unfamiliar journey through the maze that
is acute care followed by rehabilitation. Shelly's day is now filled by
many professionals involved in all aspects of her everyday life, from intimate aspects of her self-care through to her functioning as an individual
in her broader societal context. The challenge facing the team is to enable
Shelly to experience this intervention as cohesive, congruent and meaningful- and clearly progressing toward her short- and long-term goals.

THE RANGE OF KNOWLEDGE, THEORIES, AND IDEAS BEHIND


REHABILITATION WORK
We present here our attempt to define and relate the different terms and
concepts into a hierarchy of sorts but also to suggest that a linear hierarchical arrangement does not capture the full picture.
A wide range of terms are regularly used when discussing models and
practice in general:

Frames of reference
Domains
Treatment approaches
Paradigms
Perspectives
Models
Philosophies
Techniques.

The order in which they are listed is not intended to signify anything
here, merely to identify some of the terms we will be discussing. After
having discussed them, we will offer one view on their relationships to
each other.
But first, let's put the terms aside and return to Shelly.
In our interactions with Shelly a variety of ideas and information have
a bearing. Some of these have solid theoretical foundations; others are
less clear, perhaps only partly relevant or applicable, or perhaps implicit
and infrequently verbalised.
If we start at the end, we have a notion of where Shelly wants to get probably to a satisfying level of participation in her life roles. However
straightforward this may seem, this simple notion is informed by a complex array of 'concrete' factual knowledge (e.g, anatomy, physiology)
and less 'concrete/ but still rigorously derived knowledge (e.g. psychology/ sociology). This array influences the way we think about what outcomes are possible in the first instance, and then about how we work
with Shelly to achieve them. These make up the hard 'objective' science
behind what we do.
There is yet another realm of thought influencing our goals - a set of
beliefs or principles about things like the value of independence, the
right of the individual to be enabled to achieve that independence, and
even about the manner in which we do our work. This could be seen as
the more subtle 'subjective' underpinnings that inform our practice. In

Chapter 3 Models - Terminology and Usefulness

this realm are values (or philosophical principles) such as respect for
human dignity, self-actualisation and autonomy, equality of rights to
care and services and the importance of client-centred practice. More
recent additions to this realm, at least explicitly so, are values such as
continuing professional development, evidence-based practice and
reflective practice. An example of an emergent value is the notion of governance - a constant striving for the best and most efficient practice in
client care and research.
These core philosophical beliefs are brought to every interaction with
clients, in any context. They are not specific to particular clients or particular contexts. Indeed, if they are questioned in a particular situation,
this is a philosophical!ethical challenge - for example providing rehabilitation to someone injured while committing a violent crime. Such
a case can give rise to a conflict between the principles supporting equitable access to care and the idea that someone injured through no 'fault'
of their own might warrant a higher priority if care must be rationed in
anyway.
The solid underpinnings are sometimes shared between professions,
sometimes specific to them. For example, principles of the structure and
function of connective tissue will inform the care and treatment of
Shelly's now paralysed lower limbs for all staff working with her, but the
principles of joint mobilisations might only be employed by the physiotherapist. The same is true for the other ideas. While all care professionals might be aware of the relevance of social networks to Shelly's
achievement of her goals, it might be that the domain of one profession's
practice brings more specific elements of this realm of knowledge to their
work with her.
A profession-specific philosophy would be subscribed to by all practitioners within a particular discipline, but again this would underpin
practice with all clients across all settings, for example 'clients' right to be
treated with dignity' - largely a tacit assumption, unspoken, unasserted
but thoroughly internalised. So embedded might this principle be that its
existence is made apparent only when one suffers an affront to this
assumption. For example, our reaction to the news stories of former Eastern Block hospitals where people were treated with little dignity - using
caged beds to restrain patients - throws such fundamental philosophical
assumptions into clear relief (Goldsmith 2004).
In profession-specific ways, certain philosophies underpin certain
fields - for example, while all would consider functional ability to be
a priority, this focus is the hallmark of occupational therapy, where
Shelly's individual ability to carry out the functions and occupations
important to her would be the thrust of any intervention.
Against the backdrop of these philosophical assumptions, and in
keeping with the most up-to-date knowledge base of relevant subjects,
we then use one or more organised 'clusters' of information to make
individual decisions about interventions with particular clients. These
'clusters' are commonly called frames of reference or treatment
approaches (and sometimes referred to as models, although not the conceptual models we will discuss later). Examples of such 'clusters' are

51

52

Section 2 MODELS AND THEORIES

developmental, biopsychosocial, cognitive, behavioural, musculoskeletal. Each of these is associated with an amalgamation of information
about how and why things work the way they do. This amalgamation is
a contained one - defining a certain approach or perspective that should
only be taken to illuminate part of Shelly's whole story. We would not
consider it good practice to consider Shelly's mind in isolation from her
body, or vice versa. This would be patently simplistic. Such a simplistic
view was the hallmark of a divided or dualist approach - seeing the
mind and body as separate entities and therefore dealt with separately.
This led to what is called reductionism, where one viewed the challenges
(at least in physical medicine) as damaged bits that required only the
appropriate intervention. While this is frequently described as the medical model, we would suggest this to be a misnomer for a number of reasons. Firstly, there are plenty of practitioners other than medical ones
who could be deemed to employ a reductionist perspective. Secondly,
there are plenty of medical practitioners who find such an approach to
medicine wholly inadequate. And thirdly, it is not really a 'model' in the
sense we understand the term. It more closely resembles a perspective on
disease or disability, or perhaps a paradigm. It evolved from an ethos in
the scientific world suggesting that pretty much everything could be
clearly studied and understood, and then manipulated to some degree
(albeit within certain boundaries). Time and experience have proved that
this approach or perspective is insufficient for most interventions in
cases of complex health and social care (Barbour 1995, Longino & Murphy
1995,Medical Research Council 2000).
So we choose the relevant approaches or frames of reference according to
the client and their situation - the nature of which challenges and affects the
goals they set for their rehabilitation. From that point we then choose the
individual techniques we use to achieve those goals, given the other factors.
If we consider Shelly again, we start from a philosophical standpoint
that sees her as an autonomous individual with a right to the necessary
available assistance to achieve her goals in rehabilitation. We then consider the relevant areas of knowledge useful to the work of achieving
those goals. As we take a holistic approach, that range of knowledge is
wide and varied. We then consider the principles for treatment arising
from that knowledge - the approaches we might use. These may be
influenced by a particular frame of reference, or a number of them. At
that point, we choose the appropriate techniques suggested by those
approaches or frames of reference.

TERMS DEFINED
Having considered them contextually, we now return to our list of terms
to explore some more formal explanations and definitions.

Philosophical
assumptions

Different professional groups will have philosophical beliefs that focus


attention on particular aspects of problem resolution. In its broadest
sense, Craig (1983) defined philosophy as:

Chapter 3 Models - Terminology and Usefulness

the studywhich reveals to us themeaning ofexistence, thenature ofreality andourplace in it. A philosophy is a creed, a setof beliefs to live by;
it provides a purpose encompassing and overriding the minor and trivial concerns of the everyday, or if not, it communicates a state of mind
from within which the ultimate purposelessness of life becomes
endurable.
Where professionals are thinking about the fundamental underpinnings
of how and why they do what they do, philosophy is focused more precisely,although it retains its somewhat profound nature. Craig suggested
that the philosophical assumptions of a profession are the basic beliefs
shared by its members. So professional philosophy is the system of
beliefs and values unique to each profession, which provides its members with a sense of identity and exerts control over theory and practice.
It helps locate the domains of concern for that profession - irrespective
of the particular practice context. An example of an occupational therapy
belief is that occupation is a central aspect of the human experience. In
any setting, the occupational therapist would work in a way that recognises this belief.
It is arguable that all practitioners hold a set of core beliefs that derive
from a variety of sources, one of which is their sense of how the work
they do 'fits' into the grand scheme of things. Many practitioners might
find it a challenge to identify these underpinnings, but that does not
diminish their importance. Indeed, it is these quiet assumptions that
keep the project of health care continuing day after day. These central
convictions generally carry strong notions about people and how they
'tick', and how one helps them 'tick' best.
Shared philosophy

The following are some of the philosophical assumptions that are common to many professions.
Basic assumptions such as the duty of care, respect
for client autonomy and just distribution of resources are inherent in
each profession's code of practice or standards of conduct. While they
may be described in a slightly different fashion, they are based on similar principles that are largely shared across all of health care. Although
significantly different at first glance, the values underpinning the Four
Principles (Gillon 1986,Beauchamp & Childress 2001) are closely aligned
with those behind the Ethical Grid (Seedhouse 1998), although the
approaches to organising them are different. Fundamental assumptions
such as the client's right to be treated with respect and dignity - become
apparent in their universality when offended. With few exceptions, most
health-care professionals in developed Western countries react with similar outrage when confronted by images of 'care' that run contrary to
those core values and beliefs that underpin their work. The reports of
hospitals in former Eastern block countries using cages and heavy sedation to manage individuals with mental health problems is an example
of an affront to shared fundamental convictions about dignity and
respect for persons and the sensitive nature of any decision to curtail
autonomy.

Health-care ethics

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Section 2 MODELS AND THEORIES

Client-centred practice Health care that is tailored to the individual as

far as possible, approached as a partnership where appropriate and


focusing on the goals of the client themselves has become the standard
conception of intervention in contemporary settings.
An important point in the context of the professional debate about
terms and models is that, from the client's perspective, professional terminology is largely irrelevant, probably just nonsensical semantics.
Shelly has experienced an assault on her life's unfolding narrative; she
has had a traumatic derailment. What Shelly experiences are day-to-day
difficulties and hopes that these will improve. She may well experience
a sense of integrated care from many professionals when the team's
work is coordinated under an overarching model. The particularly complex nature of the rehabilitation context makes this most important, the
benefits more pronounced. Thus it is essential that the client is spared
our debates and disagreements. These must be addressed as constructively as possible outside the client's sphere, leaving only the experience
of a cohesive team effort toward realising Shelly's goals.

Developmental/lifelong context The timeline of Shelly's life is long and

continuous - the health-care workers need to understand and appreciate


the entirety of it, not simply the current episode they encounter at the
point of their involvement. For Shelly, the developmental context now
includes the process of rehabilitation and adaptation. Shelly'S life narrative has been unexpectedly redirected but the need to see the entirety of
it remains.

Profession-specific
philosophy

Within each profession, these notions take specific angles. Writing from
an occupational therapy perspective, we see occupation (defined in
a particular way) as the focus when engaging with Shelly. Other disciplines might hold their own 'primary' philosophy in addition to the
shared ones.

Shared knowledge base


(and subsequent theory)

There is shared professional knowledge that is used by all health-care


professionals, which provides theoretical perspectives on intervening to
assist clients with meeting the challenges they face. Biomedical sciences,
psychology and sociology are all part of the shared knowledge base that
is not profession-specific but used by all health- and social-care professionals. A common understanding of human physiology leads us to
develop certain expectations for Shelly'S progress in terms of her physical rehabilitation. However, the same knowledge base can be organised
differently, in keeping with the focus of the profession. Nursing may
adopt a homeostasis perspective; physiotherapy might be more concerned with motor control, strength and range of motion, while occupational therapy might use the same information to guide approaches to
energy conservation and work simplification in activities of daily living.
In adopting such perspectives for professional roles, knowledge is
arranged into theoretical systems or frameworks, which give rise to
intervention. A theoretical framework consists of a description of a set
of phenomena, an explanation of how and under what circumstances

Chapter 3 Models - Terminology and Usefulness

they occur and a demonstration of how they relate to each other. A theory is not 'reality' per se but a structure invented to guide, control or
shape it in order to achieve some particular purpose. Theories are constructed out of available knowledge - not as an intellectual exercise but
for a purpose. As the purpose varies, so too does the structural complexity of the theory. A good theory will fulfil the purpose for which it
was developed. Sociological theory may provide some understanding
of Shelly's health/illness beliefs and how she may engage with her
recovery.
Other examples of theories used in conceptual models include theories of human development, learning theory, theories of occupation and
general systems theory.

Frames of reference

Compatible theories can be organised into frames of reference. A frame


of reference, as defined here, consists of a group of compatible theories
that can be applied within a particular field of practice. This means that
any profession may use a variety of frames of reference.
Frames of reference are clusters of theories selected or developed by
different professionals out of the need to support the philosophical
beliefs that are the core of the profession. Theories that are not compatible with professional beliefs are not adopted. The theories that are identified as making up the professional body of knowledge arise from and
support the philosophical assumptions of the individual profession. For
example, behavioural frames of reference may not be part of the frame
of reference used by art therapists. Each of the professions uses frames of
reference to achieve their unique goals for rehabilitation.
Frames of reference give principles on which to base specific intervention. Frames of reference are aimed at specific problems and professionals choose from a number of appropriate frames of reference.
Examples of frames of reference commonly used in mainstream health
and social care settings are biomechanical, psychodynamic, neurodevelopmental, educational, behavioural and rehabilitation.

Selecting frames of
reference

Hurff (1985) suggested that the choice of a particular frame of reference


is influenced by the challenges faced by the client, the philosophical
assumptions of the institutional!organisational context and the experience and bias of the therapist.
Frames of reference are selected using clinical reasoning skills; the criteria for selection include the nature of the condition, the context of the
treatment setting and the particular specialism of the health professional.
They are part of the shared knowledge between professional groups.
Rehabilitation is a good example of a shared frame of reference. All professionals working in a rehabilitation context would be expected to share
an understanding of the common underlying principles and base their
intervention (interdisciplinary or profession-specific) on these principles.
One of these principles might be the idea that some recovery will occur
but residual problems will remain; thus, intervention options need to
include modification of the environment, adaptation of the tasks and
compensation for unrecoverable capacities.

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Section 2 MODELS AND THEORIES


Frames of reference do not always mix well; indeed some would seem
to be incompatible. For example, when a person is working to improve
their mobility, a neurodevelopmental or normal movement frame of reference may lead to an approach that prefers gait analysis and retraining.
A rehabilitation frame of reference might favour the introduction of
a walking aid in order to enable the client to achieve functional walking
and participation sooner, rather than more 'normal' walking later.

Techniques

The frames of reference give rise to treatment approaches and subsequent


intervention techniques. These may be shared or specific. Examples of
techniques that are often profession-specific are stoma care, catheter care,
respiratory aspiration, wheelchair assessment and pressure care.

Paradigms versus models

One of the sources of confusion in this literature is simply the different terms used for the same concepts and none more so than the term
'model'. Mosey (1981) used the 'model' to refer to the internal structure and content of the profession as a whole, i.e. the typical way in
which a profession perceives itself and its relationship to the context
in which it operates. Fawcett (2003) paraphrases the rejection of a nursing model as 'they are contributing to the extinction of the discipline
of nursing'.
However, Creek (1990) referred to this overview of the structure, content and purpose of a profession as the profession's paradigm. The term
'paradigm' was originally used by Kuhn (1962) to refer to 'coherent traditions of scientific research' and was adopted by Kielhofner & Burke
(1977) to refer to 'a dynamic model of bodies of knowledge that demonstrates how they develop, exist, and guide the efforts of professionals'.
For many nurses and therapists, 'paradigm' has come to mean the profession's world view. The importance of this discussion is simply to
understand the way in which new material starts to influence the way in
which professions adopt new concepts. Much has been written about the
manner in which new paradigms are rejected or accepted. This seems to
take place in such a way that a measured transition is not apparent, but
rather there is a complete rejection of the old and a total acceptance of the
new. Sometimes there is resistance and oscillation between the two, but
it often seems like an all-ot-nothing decision for the individual practitioner or theorist. Eventually, where the new paradigm is sound, the tide
of opinion in the profession in general might turn. This is a useful concept as it helps us understand how commonly accepted views change
personally and professionally.
So far, we have given a brief outline of two sets of knowledge. One is
often implicit, the underlying 'softer' type - paradigms and philosophies. The other is that which derives from the 'hard' science pursuits biology, anatomy, physiology and even psychology and sociology - the
frames of reference, treatment approaches and intervention techniques.
The latter is sometimes internalised, but it is often concrete and
observable - it guides what we do with Shelly; 'why' in the science sense,
'how' in the practical sense. The former we carry with us and manifest in
a more subtle internalised fashion for the most part - it guides 'why' in

Chapter 3 Models - Terminology and Usefulness

the existential sense and, in some respects, 'how' in the interpersonal


sense.
So where is the model connection? Firstly, there is a distinction to
make. Here we refer to models as 'conceptual models'. It is often the case
that writers use the term model to refer to treatment models (meaning
frames of reference sometimes, and treatment approaches at other times).
This is, in part, where some of the muddle around understanding models
creeps in. So here, 'model' is meant to be understood as conceptual
model.

Remembering the broader


contexts - part of our
paradigms

In exploring these debates, it is important to remember that the discussion is clearly limited by our particular contexts - practice that is largely
happening in affluent Western societies. This context is one that affords
the luxury of devoting time and energy to these debates and the development of theoretical constructs within a climate of client-centred practice, enablement and a rights-based approach to civil society. Other
factors such as clinical governance and the 'consumer identity,' increasingly encouraged among the public, have their impact as well, as does
the market (or pseudo-market) economy in which health care has been
set for many years now in many developed countries.

Conceptual models

What is a conceptual model? In general language a model is an organising tool designed to assist in categorising ideas and structuring
approaches to help people to make sense of complex phenomena.
Fawcett (2003) sees a conceptual model as made up of concepts
(words describing mental images) and propositions (statements expressing the relations between concepts). A conceptual model therefore is
defined as a set of concepts and the statements that explain their interrelation in a Simplified fashion.

The rise of conceptual


models throughout health
care

Therapy and nursing in the UK have always been primarily practical disciplines. They have historically tended to show more interest in extending their practical skills and techniques than in developing professional
theory. This skills focus is not something to be derided - it is essentially
a reflection of the client-centred 'hands on' nature of the work.
At the same time, there is a drive towards health-care practice becoming increasingly evidence based. Many areas of practice involving rehabilitation are, however, far from exact sciences and there is a wide range
of knowledge upon which interventions are based. Some of this is
shared, some of it is profession-specific. Each of these professions uses
the relevant knowledge base to inform their practice. Each has their own
role and function to play in the programme of interventions offered to
the client.
Over the past decades, however, there has been increasing interest in
the use of conceptual models for practice. This interest has taken the
form of critiquing existing models, adapting them and developing
entirely new models.
Contributing to this in the last two decades in the UK has been the
move from professional training into higher education degree level

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Section 2 MODELS AND THEORIES

qualification, which has fuelled a plethora of articles and debates within


the nursing arena - one of which is the use of nursing models - as the profession responds to the technological change in health care. Practitioners
are increasingly asked to produce, identify and/or make use of evidence in
order to justify their practice. Although an overall aim of enhancing practice is evident, again this tension between practice and theory sparked
debate about the extent to which this endeavour is genuinely aimed at
improving client care, or fundamentally concerned with advancing professional status. This tension is a healthy one, keeping the two valid aims in
view at all times. The relationship between theory and practice must be a
dynamic and interactive one - neither being sustainable without the other.

Why bother with a model


when working with
Shelly?

Kielhofner (1992) suggested that a model'elevates clinical practice from


a simple application of techniques to a professional process of conceptual
problem solving, planning and action'. While this 'elevation' of our work
is something that should be sought after by professionals in order to
maintain an appreciation of the complexity of their work, it is also of
great benefit to the client. This benefit takes the form of not just a successful outcome for their rehabilitation but also a successful, more
rewarding collaborative process along that path. In health care generally
there is an increasing emphasis on interprofessional working - this has
become a priority and is now extending to the development of interprofessional education for health-care workers at all levels, both pre- and
postqualifying.
Rehabilitation is one of the areas of practice in which there are many
different professionals working with people with problems affecting all
areas of their lives. In this context of complex challenges and equally
complex interventions, the importance of effective interprofessional
working is clear. Jackson & Davies (1995) describe a further plane of team
working - the transdisciplinary team. However, the extent to which even
interprofessional or interdisciplinary working is currently being
achieved is uncertain. More commonly, good multidisciplinary working
might be the norm.
Reforms of the last decades in undergraduate education of health-care
professionals have helped progress this aim. However, the reality
remains one in which individual professional statutory bodies dictate
their own curriculum benchmarks and continue to define the parameters
of their profession's practice domains and knowledge base.

The model muddle

This book is clearly premised on the idea that models of practice are useful tools in the delivery of health care to clients like Shelly. There is
potential for conceptual models to guide and improve the development
and application of practice skills, but also potential to make professional
roles and identities clearer to all - clients, colleagues and stakeholders.
As the development of, and even more the use of, conceptual models is
still in many respects a nascent endeavour, there remains confusion and
disagreement about what is meant by a model and what its functions
might be for these practical professions. Further confusion arises when

Chapter 3 Models - Terminology and Usefulness

considering the relationship between models and other constructs such


as frameworks, approaches, theories, concepts and perspectives.
The lexicon for debating these issues is not usually held in common
within any individual profession; the confusion is made more complex
by a context such as rehabilitation where numerous professions are
working together with each client.
While these debates have until more recently been conducted mainly
in the academic domain, the care they are meant to frame and guide is
implemented in practice and experienced at client level. Thus it is essential that the client is not on the receiving end of this confusion (and sometimes outright disagreement) and particularly important that they are
not in any way a pawn in the quest for professional autonomy and the
securing of a place within the academic hierarchy that has become a pervasive part of health-care education and provision during the last
decade.
However, while the terms may not be shared or defined in the same
way, many of the concepts and sensibilities behind them are recognisable
to all. To all, that is, except one member of the team - the client. Thus it
is paramount that we attempt to understand the value of coordinating
our work and making explicit the means by which we aim to achieve our
collective ends. Many team members working within a single conceptual
model could help with this challenge; at the very least, we need to have
an understanding of one another's models and attempt to harmonise the
terminology we use with each other and with clients like Shelly. The
interactions with Shelly need also to be jargon-wary - using common jargon that is readily explicable might be useful, while avoiding jargon that
is either complex or unnecessarily 'professionalises' the discussion of
rehabilitation.

Components of a good
model for practice

Theorists also seem to agree on what should be included in a good model


for practice. A good model identifies what is believed about the nature of
people and participation, the way that elements of that nature enable function or lead to dysfunction and non-participation, and how one moves
from a situation of dysfunction to one of fuller participation. For example,
a behavioural model would be based on the belief that human behaviour
is the observable output of the integrated function of the central nervous
system. This model will be underpinned by theories of human development, the conditions required for that development to take place and the
difficulties that arise from problems or inadequacies in either.
Fawcett (2003) asserts that the credibility of the conceptual model
requires evidence of its social utility, social congruence and social significance - i.e. is it right for the time? Does it reflect the most current understanding of the relevant structures and their interactions? Does it capture
the role(s) of the professional(s) involved?

Critique of models

The influence of the research agenda has given all health-care professionals the tools with which to test, examine and critically appraise. This
needs to be extended to models, otherwise they will become closed

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Section 2 MODELS AND THEORIES

ideologic systems. This has similarities with paradigms, where it is


understood that paradigm shift only occurs after oscillation between the
ideas, with considered rejection or acceptance over time.
Some models are designed for generic use with clients with a wide
range of problems, others for a narrow area of specialism. Models
designed for a narrow area of specialism will have a specific theoretical background and be chosen because that is congruent with the
problems identified, e.g. a model designed for health promotion will
have a theory relating to health beliefs and an educational process
based on and appropriate for those for whom health promotion is
required.
The model muddle is evident in part because different professions
and different authors in the same professions do not hold similar views
on the definition of the concepts, and use different terms for the same
concepts. Put simply, a model can be either a 'conceptual model' that
defines a professional domain of concern or it can describe a narrow
focus of specialism. That narrow focus is also referred to as a frame of
reference. Equally the conceptual model defined by a profession is
sometimes referred to as a 'professional paradigm'. In our view, there
are two common 'levels' of models and it is important to clarify which
level is being described. We prefer to reserve the term model for 'conceptual models', such as the Roper Logan & Tierney (1990) model,
which attempts to define the nursing domain of concern. This is similar to the Model of Human Occupation (Kielhofner 2002), which
describes a domain of concern specific to occupational therapy as
opposed to being specific to individual client- or practice-context
needs.
This does not mean that, by implication, models are not clientcentred. There is an argument that using a model to define practice
ensures a client focus, as opposed to a focus on meeting the needs of the
institution/local health-care provider, i.e, a focus on discharge and bed
access.
Another argument against models is the well rehearsed argument
about the novice-to-expert continuum, where it is postulated that as
expertise grows so the need grows for structured guiding frameworks to
be useful and more intuitive styles of practice emerge (Creek & Feaver
1993 a, b). Is this not really an internalised framework?
Interestingly it appeared that the 'nursing process' may be a good
example of a model that was originally designed to define a domain of
concern for nursing, was reduced to a 'simplistic process' and began then
to constrain and misrepresent the true spirit of the original idea. Similarly the Model of Human Occupation (Kielhofner 2002) was often criticised as being a simplistic diagram - failing to fully represent the
important conceptual framework that the author originally intended.
The true failing here is to take the simplistic diagram as the full elaboration of the model. In most cases, the diagram is simply a one-dimensional
representation of the relationships between concepts. There is always
extensive documentation detailing the full meaning behind them.

Chapter 3 Models - Terminology and Usefulness

CONCLUSION
Rehabilitation and medicine are not exact sciences - conceptual models can
give order to particular perspectives on the relevant bodies of knowledge.
These perspectives can be large or small, shared or profession-specific. Their
use, however, does help ensure that Shelly will benefit from a wide body of
knowledge and experience from a range of health-care professionals. Paradoxically, the rapid development of high-tech health care and the rise in
expectations of clients has meant that we often find ourselves struggling
with thetensions between increasing services and increasing scarcity. When
the inevitable tensions arise between the needs of the health-or social-care
institution/organisation (often dominated by discharge and cost-cutting,
best value and evidence-based efficiency) and those of the team and client
(the highest-quality care tailored to the individual's needs), the overarching
influence of a conceptual model or models to frame practice can help to
retain the client focus.
If we return to the general notion of those more concrete 'objective' and
subtle 'subjective' arrays of information underpinning practice, these tensions can become manifest as we carry out the priority work: interventions
to sortthe care and discharge. These interventions are informed directly by
that more objective body of knowledge - frames of reference, treatment
approaches and techniques. But we may have a strong sense that there are
other aspects of the situation to which these more subjective underpinnings
draw our attention. This could simply be a wish to take a more holistic
approach than our work context allows, or a sense that the care is not as
client-centred as we might like.
In such circumstances, a conceptual model can help us remain in touch
with these underpinnings while getting on with the interventions - a virtual
link or touchstone to the values we hold about the work we do, even if they
cannot be acted upon.
Working together with Shelly can be assisted by a model enabling professionals to identifytheir shared beliefs, knowledge base and principles of
intervention while at the same time retaining a clear sense of those that are
profession-specific. The sum total should be a focus on assisting Shelly to
achieve the fullest participation in herlife's new narrative.

QUESTIONS FOR PRACTICE


1. Is there a model in use in your context? Is it explicit or implicit?
2. Do you recognise this as a conceptual model or a treatment model?
3. In your multiprofessional team, to what extent would you consider
philosophies to be shared? at variance?

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References
Barbour A 1995 Caring for patients: a critique of the
medical model. University Press, Stanford CA
Beauchamp TL, Childress IF 2001 Principles of
biomedical ethics, 5th ed. Oxford University Press,
Oxford
Craig EJ 1983 Philosophy and philosophies.
Philosophy 55:189-201
Creek J (Ed) 1990 Occupational therapy and mental
health, principles, skills and practice. Churchill
Livingstone, Edinburgh
Creek J, Feaver S 1993a Models for practice in
occupational therapy: Part 1. Defining terms. British
Journal of Occupational Therapy 56:4-6
Creek J, Feaver S 1993b Models for practice in
occupational therapy: Part 2. What use are they?
British Journal of Occupational Therapy 56:59-62
Fawcett J 2003a Conceptual models of nursing:
international in scope and substance? The case of
the Roy Adaptation Model. Nursing Science
Quarterly 16:315-318
Fawcett J 2003b On bed baths and conceptual models
of nursing. Journal of Advanced Nursing
44:229-230
Gillon R 1986 Philosophical medical ethics. John Wiley,
Chichester
Goldsmith R 2004 Czech man's week in a cage.
Crossing Continents. BBC Radio 4, 8 July. Notes
available on line from http://www.bbc.co.uk
Hurff JM 1985 Visualisation: a decisions making tool
for assessment and treatment planning. In:
Cromwell FS (Ed) Occupational therapy in health
care 1:2,5,12Haworth Press, New York
Jackson H, Davies M 1995A transdisciplinary
approach to brain injury rehabilitation. British
Journal of Therapy and Rehabilitation 2:65-70

Kielhofner G 1992 Conceptual foundations of


occupational therapy. FA Davis, Philadelphia
Kielhofner G 2002 Model of human occupation, 3rd ed.
Lippincott Williams & Wilkins, Baltimore
Kielhofner G, Burke JP 1977 Occupational therapy
after 60 years: an account of changing identity and
knowledge. American Journal of Occupational
Therapy 31(10) 675-89
Kuhn TS 1962 The structure of scientific revolutions.
International Encyclopaedia of Unified Science 2(2).
University of Chicago Press, Chicago
Longino CF, Murphy JW 1995 The old age challenge to
the biomedical model: paradigm strain and health
policy. Baywood, Amityville, NY
McKenna HI' 1994 Nursing theories and quality of
care. Avery, Aldershot
Medical Research Council 2000 A framework for
development and evaluation of RCTs for complex
interventions to improve health. Medical Research
Council, London. Available on line at: http://www.
mrc.ac.uk/pdf-mrc_cpr.pdf
Mosey AC (1981)Occupational therapy: configuration
of a profession. Raven Press, New York
Pedretti LW, Early MB 2001 Occupational performance
and models of practice for physical dysfunction. In:
Pedretti LW, Early MB 2001 Occupational therapy:
practice skills for physical dysfunction. Mosby,
St Louis, p 3-11
Roper N, Logan W, Tierney A 1990 The elements of
nursing. Churchill Livingstone, Edinburgh
Seedhouse D 1998 Ethics: the heart of healthcare, 2nd
ed. John Wiley, Chichester

Chapter

65

The Canadian Model of Occupational


Performance
Mary Kavanagh

INTRODUCTION
The aims of this chapter are:
To give an overview of the Canadian Model of Occupational Performance (CMOP)
To look at the history of the development of the model
To examine how the model is used in practice
To discuss the theoretical perspectives underpinning the model
To examine how the model is used in rehabilitation and its relationship to the International Classification of Functioning, Disability and
Health
To explore how the use of the model may promote or hinder interprofessional working.

As set out above, this chapter aims to give the reader an introduction to
a specific model of practice used by occupational therapists, namely the
Canadian Model of Occupational Performance (CMOP) (Townsend
1997), which was originally developed in Canada and is now used in
many other countries. The case study of Shelly, outlined in Chapter 2,
will be used here to illustrate the use of the model in practice.

CASE STUDY SHELLY


Shelly is 27 and works for a law firm in the city. She
graduated with a first class honours degree from her
university and is considered a 'high flyer' in herfield.
Her family are living in Canada and she travels to see
them frequently. She has a wide circle of friends and
for the past year has been seeing Jonathan, who
works for the same firm. It was while she was on
a winter sports holiday in Europe with Jonathan that
she had a skiing accident, which left her with spinal

cord injuries. As a result of this she has a spinal cord


lesion at
After spending some time in a European hospital while her condition was stabilised, she
has now flown back to a spinal injuries unit, where
she has been receiving rehabilitation. The team working with Shelly has noticed herbecoming more and
more withdrawn since heradmission, and she has
been talking to them about how hopeless she feels
and that she wishes herlife would end.

no.

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Section 3 MODElS IN PRACTICE


At this point it would be helpful to give a definition of 'occupational performance' to clarify what the term means. As outlined by Townsend
(1997) occupational performance 'refers to the ability to choose, organise
and satisfactorily perform meaningful occupations that are culturally
defined and age appropriate for looking after one's self, enjoying life and
contributing to the social and economic fabric of the community' (p. 30).
This is seen by Law et al (1995) as taking place over the person's lifespan and as a dynamic and flowing relationship between the person, the
occupations they engage with and the environment in which they carry
out these occupations.

HISTORICAL BACKGROUND TO THE MODEL


The model was first introduced in the 1980s,when a Canadian task force,
supported by funding from the Canadian Association of Occupational
Therapists and the Department of National Health and Welfare, developed what was then called the 'Model of Occupational Performance'. It
was first presented to the general occupational therapy world in 1982
and, following various revisions, was renamed the Canadian Model of
Occupational Performance in 1997. The initial drivers behind the development of this model were a concern from both inside and outside the
profession regarding quality assurance in occupational therapy services
(Townsend et aI1990). Concurrently in the USA, the American Occupational Therapy Association generated a series of task forces and committees whose brief was to develop policy statements about generic areas of
concern for the profession, including the development of an occupational therapy model that would reflect the domain of occupational performance. Although a slightly different model from the Canadian Model
was developed as a result of this work, nonetheless it can be seen that the
drivers were there to make the concept of occupational performance central to the work of occupational therapists (Chapparo & Ranka 1997).
Both models ultimately drew on earlier work on the Human Occupations Model by Reed & Sanderson (1984), which focused on the interaction between the person, their occupations and the environment in
which these were carried out.
As stated above, various changes have been made to the Canadian
Model since its first appearance, particularly to the range of environmental factors impacting on the individual: for example, political, economic and legal environments were added in 1993. As occupational
therapy practice evolves, so too does the Model, hence the third revision
in 1997, which placed at the heart of the model the concept of 'spirituality' (appreciation of the uniqueness of the individual), in order to ensure
that the person the therapist is working with remains the focus of occupational therapy intervention. It also re-emphasised the dynamic and
interdependent action between all the elements of the model, which are
explained more fully below.
The Canadian Occupational Performance Measure (Law et aI1994a,b),
which is used as part of the assessment of occupational performance, is
also a development of the work of the task force that worked on the

Chapter 4 The Canadian Model of Occuptional Performance

Canadian Model, since it was identified that there was no outcome measure to gauge improvement from start to finish of occupational therapy
intervention in the areas of self-care, productivity and leisure that occupational therapy focused on (Law et al 1990, Pollock 1993). Since its
inception it has been used in a variety of clinical settings and a number
of different countries (Waters 1995, Mew & Fossey 1996, Trombly et al
1998, Bodiam 1999, Healy & Rigby 1999, Norris 1999, Tryssenaar
et a11999, Wressle et a11999, Sewell & Singh 2001, Chesworth et al 2002,
Gilbertson & Langhorne 2000, Clarke 2003). It is considered a valid and
reliable outcome measure for occupational therapists using the Canadian
Model as their guiding framework (Law et a11990, Bosch 1995, Toomey
et a11995, McColl et a12000).

DESCRIPTION OF THE MODEL AND ITS APPLICATION


TO THE CASE OF SHELLY
Overall the model looks specifically at the interaction and interrelationship between the person, their environment, and the occupations performed
by that person during their lifetime. It takes the perspective that these
three aspects are dynamic and therefore the interplay between them is
crucial to the extent to which the person is able to engage in all three
independently (Townsend 1997).
For example, prior to her accident, Shelly as a person was living independently and able to engage in a whole range of occupations, including
self-care, socialising, working and sports. Her environment consisted of a
variety of settings: the law firm, her flat,holiday destinations, places of entertainment, basically the whole community setting. Following her injury,
Shelly'senvironment currently consists of the hospital in which she is receiving treatment, and her occupations are limited to attempting basic self-eare.
The Canadian Model proposes a framework for the occupational therapist to work with Shelly from four basic aspects: spirituality, which
occupies the centre space at the heart of the model, and what are called
the physical, cognitive and affective components.

Spirituality
------~---

From the perspective of the Canadian Model the term 'spirituality' refers
to the uniqueness of every individual a team will work with, regardless
of the similarity of their disabilities (Townsend 1997). It therefore prevents the team from focusing purely on the disability rather than on the
person who has the disability, therefore relying as much on interactive
reasoning as on diagnostic reasoning (Fleming 1991). In acknowledging
the person's uniqueness, the therapist is appreciating 'their intrinsic
value, [and] respecting their beliefs, values and goals, regardless of
ability, age, or other characteristics' (Townsend 1997, p. 42).
The model therefore places the person at the heart of the intervention
process (Fig. 4.1) and defines the need to fully engage in partnership
with the individual to see what occupations are meaningful to them,
therefore not making assumptions about what is relevant or not to the
person, and certainly not being prescriptive about what they might or
might not enjoy and get pleasure out of (Townsend 1997).

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Section 3 MODELS IN PRACTICE

Figure 4.1 The Canadian


Model of Occupational Performance (with permission from
Townsend 1997)

CASE STUDY SHELLY (CONTINUED)


Shelly's parents took herto church regularly when
she was a child but Shelly does not consider herself
to have any particular religious beliefsystem. She
values the individuality of people and tries to treat
others with respect. She supports charities such as
Oxfam and the Worldwide Fund for Nature, and
loves salsa dancing and the theatre and cinema.
Considered a charismatic person with a wide circle
of friends, she throws herself into activities with a

The physical, cognitive,


and affective
components

passion. Shelly sees herself as 'always living life to


the full', whether travelling, working or meeting up
with Jonathan or herfriends and family. In terms of
herfuture work and life, Shelly hopes that her relationship with Jonathan will ultimately lead to marriage, and wants children. In the meantime she
values herjob very highly and wants to travel as
much as she can, particularly to Australia and New
Zealand.

In using the term 'components', the model is referring to the different

aspects of function that the person needs in order to engage in occupation.


These are grouped into three: physical, the 'doing', or the motor, sensory,
and sensory motor functions; cognitive, the 'thinking' domain, involving
both intellectual as well as cognitive functions, including memory, comprehension and reasoning; and affective, or the 'feeling' domain, which
looks at intrapersonal and interpersonal emotional functions (Townsend
1997). Although these are distinguished here, it is nonetheless important to
consider them as interdependent components (Payne & Isaacs 1991), for
example when carrying out a task such as dressing, which requires a range
of physical function such as fine finger movement, figure ground discrimination, affective function such as desire to engage in the task and cognitive function such as understanding of why the task needs doing and
memory of how to put clothes on in the correct sequence.

Chapter 4 The Canadian Model of Occuptional Performance

CASE STUDY SHELLY (CONTINUED)

Physical component (function)


Shelly has a spinal cord lesion at the level of no,
which means that her respiration is unaffected,
and she has no movement in her lower extremities. She has the potential to be independent in
regulating her bladder and bowel movements and
to be able to transfer herself independently. She
also should be able to resume driving in a car
with adapted hand controls (Pedretti Et Early
2001).

Cognitive component (function)


Shelly has only a hazy memory of the accident
that led to her injury. She remembers another
skier shouting at her to move out of the way, but
after that it's a blank. She has been told, and
appears to understand, that she has a spinal cord
injury and the implications of this. At the moment

The occupation

she finds it difficult to concentrate for long periods as she is easily fatigued, and she is taking
analgesics to help control her pain (she sustained
some injuries to her arm and face as a result of
the accident).

Affective component (function)


Shelly isvery low in mood, to the pointthat she has
been diagnosed with clinical depression. She is worried about herjob, and whether herfirm will continue
to employ hernowthat she has had so much time off
work and is disabled as a result of the accident. Her
mother Julia has flown over from Canada to be with
her, but Shelly is finding it hard to talk to her, as she
cries every time she tries to talk about how she is
feeling. Most of all she is afraid that Jonathan will no
longer want her as she is now disabled, and that she
may not be able to conceive a child.

The concept of occupation is divided up into the three performance areas


of self-care, leisure and productivity. Each performance area is subsequently divided into three subsets to enable therapists to make sure that
they cover the broadest range of occupations that an individual might be
involved in doing. For example, self-care is divided into: personal care,
which includes getting washed and dressed, personal hygiene and eating; functional mobility, which includes transfers, indoor and out; and
community management, which includes accessing transportation,
shopping and managing finances. Leisure is divided into: quiet recreation, which includes hobbies, crafts and reading; active recreation, such
as sports, outings and travel; and socialisation - visiting, parties, phone
calls, correspondence. The final area is productivity, which is divided
into: work, both paid and unpaid, including all that is involved in finding and keeping a job, also volunteer work; household management,
such as cleaning, cooking, and washing; and finally play / school, which
consists of play skills and homework (Townsend 1997). In an initial interview, these are the areas that the therapist would concentrate on to get
an idea of which specific performance areas the person is having difficulty with and where they need most input in order to maintain or
increase their independence. This will be further expanded on in the section dealing with the use of the Canadian Occupational Performance
Measure (Law et aI1994a).
As with the section on performance components or functions, the
three performance areas are not mutually exclusive, as individuals may
need to achieve independence in one area, such as self-care (dressing),
before they can engage in productivity or leisure tasks (attending a job

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Section 3 MODElS IN PRACTICE

interview, dancing). Some activities may also potentially fall into several
performance areas, depending on the focus of the task. Cooking, for
example, may be classed by the person as a productivity task when it
involves feeding a family out of necessity, but may equally be a leisure
task when done for pleasure, e.g. making a birthday cake. The choice of
which performance area to attribute the task to is up to the individual,
not the therapist.
CASE STUDY SHELLY (CONTINUED)
Shelly's occupations currently revolve around basic
self-care: dressing her lower body independently;
using the toilet and shower on the ward independently; being able to manoeuvre her wheelchair
indoors and out; and being able to transfer into/out

The environment

of a car without help. Through the use of the Canadian Occupational Performance Measure she was
able to identify other areas involving productivity
and leisure tasks that she set as goals for herself
(see below).

Encircling performance areas and performance components and also


intersected by them is the environment, which, as the context in which
occupation occurs, can impact positively or negatively on the person's
ability to carry out necessary tasks of daily living. It is divided up into a
range of categories to encompass the attributes an environment consists
of. The physical environment contains built surroundings such as houses,
car parks, office blocks, transportation (planes, trains, buses, cars). The
environment also includes natural environmental surroundings, such as the
weather, and parks, fields, rivers and mountains. There is the institutional
environment, with its legislation, funding arrangements, accessibility and
employment support. Into this context is also placed the cultural environment, which includes the ethnic, ceremonial and routine practices of particular groups of individuals; and finally the social environment, which
focuses on social groupings based on common interests and patterns of
relationships that individuals have (Townsend 1997).

CASE STUDY SHELLY (CONTINUED)

Physical environment
Shelly appreciates that at present the physical environment in which she is living [i.e, the hospital) is the
one in which she will first need to learn to be independent, and therefore focuses on learning how to
manoeuvre herwheelchair through doors and become
more adept at transfers. It is also important to her to
be independent in terms of transport, and she asks
her mother to help her arrange for her car to be specially adapted for a wheelchair user. The challenge of
outside the hospital will also face her when she has

to consider how accessible her law firm's building and


facilities will be, not to mention her flat in the city.

Natural environment
The difficulty of negotiating grass in her wheelchair
as opposed to a flat hospital floor brings home to
Shelly how much she needs to plan a lot of activities she has previously carried out automatically.
She finds that she gets cold more quickly than
usual because of not having as much mobilityas
she used to.

Chapter 4 The Canadian Model of Occuptional Performance

CASE STUDY SHELLY (CONTINUED)


Institutional environment
Through the social worker in the hospital Shelly
becomes aware of how much her life has changed
now she has become, in society's eyes, a 'person
with a disability', She is given Disability Living
Allowance forms to fill in, and looks into getting a
wheelchair user's badge for hercar. When she is
more able to, she starts negotiations with her
employers to find out what support she might need
should she return to work and the extent of her
employers' responsibility towards her under the Disability Discrimination Act 1994,

Social environment
Shelly comes to value the support of her parents,
although initially she did not want to see them,
Jonathan or her old friends while she was getting
used to being in a wheelchair. She wants to present a more independent Shelly to them, as opposed
to someone who is always asking for their help.

Cultural environment
Shelly feels very estranged from her normal culture
of parties, work and being with Jonathan, and feels
very isolated from her normal environment.

So, all the above, that is, the person, the occupation and the environment,
provide the arena in which occupational performance takes place. At this
point, the part that chronology plays must also be recognised. Some
occupational performance may be discarded at particular points of a person's life when the occupation is no longer needed or wanted, e.g. being
fed by a parent when young. The process does not stay static but is constantly changing and developing as the needs and demands of the person, the environment and the occupation change. So too will ageing,
disability, and environmental change impact upon the extent to which a
person can engage in occupational performance over a certain period of
time (Townsend 1997).

APPLICATION OF THE OCCUPATIONAL THERAPY PROCESS


MODEL
The structure of the Canadian Model, with its emphasis on the person,
the environment and occupation, provides an overarching framework
that then needs to be applied in the practice situation. Most occupational
therapy processes work along the principles of assessment, planning of
intervention and evaluation of interventions (Creek 2002), and the Canadian Model is no different. The occupational therapy process model
(Fig. 4.2, Box 4.1) developed by Fearing (1993) and Fearing et al (1997) is
used as part of the Canadian Model to engage the person in these three
basic principles. Some of the key features of this particular process are
that it reflects occupational therapy values and beliefs, is action orientated, and evaluates client outcomes using an appropriate outcome
measure, appropriate to diverse environments (Fearing et aI1997).

Stage 1: Naming,
validating and
prioritising occupational
performance issues

At this point the occupational therapist meets with the person to look at
specific areas of self-care, productivity and leisure identified by the individual as ones they need some help with. It must be said at this point that
this assessment process is designed to run alongside others that are being

71

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Section 3 MODELS IN PRACTICE

Figure 4.2 The Occupational


Performance Process Model
(with permission from
Townsend 1997; adapted from
Fearing et al 1997)

carried out by other members of the multidisciplinary team and that


information gathered at this point from the whole team is crucial to the
implementation of a holistic and needs-led plan for intervention.
Originally Fearing et al (1997) described the above meeting as one in
which to identify 'problem areas' for the person, but the term was deliberately changed to 'issues', a word that was viewed as being emotionally
less laden and also respecting the fact that many individuals regard their
inability to perform certain activities as less of a problem than a nuisance.
The process talks about 'naming, validating and prioritising' issues
(Townsend 1997). By this is meant that the therapist asks specific questions to determine precisely what areas of daily living skills the person is

Box 4.1

The OT Process Model

The OT process model follows seven stages:


Stage 1: Naming, validating and prioritising occupational performance issues
. Stage 2: Selecting theoretical approaches
Stage 3: Identifying occupational performance components and environmental
conditions
Stage 4: Identifying strengths and resources
Stage 5: Negotiating targeted outcomes and developing action plans
Stage 6: Implementing plans through occupation
Stage 7: Evaluating occupational performance outcomes

Chapter 4 The Canadian Model of Occuptional Performance

having some difficulty with, and uses specific listening and feedback
skills to determine what the main areas are that need assistance. So for
example, a statement that begins with, 'I'm struggling with getting
dressed' might through careful questioning be rephrased as, 'I have trouble doing up my buttons because of my arthritis', and therefore the therapist is able to home in on the precise nature of the difficulty. Validation
means that the therapist acknowledges the person's statement of their
difficulties and how important the activity is to them. Finally, by prioritising, if many areas are highlighted as important, the therapist can find
out which are the most important areas to start working on. Various
methods of eliciting this information are suggested, from semistructured interviews to home visits, as well as the use of the Canadian
Occupational Performance Measure (COPM; Law et aI1994a).
The COPM categorises the specific occupational performance areas
into self-care, productivity and leisure, and, as above, through focused
questioning, the therapist can elicit issues that the person wishes to work
on (naming) and ask the person to score the importance of these particular tasks out of a score of 1-10, 1 being least important and 10 being the
most important (validating). After this, in steps 3 and 4 of the measure,
the person is asked to choose the five most important areas to work on
first (prioritising). In these five areas, the person is asked to rate their perspective of their current performance out of 10, 1 being unable to
perform the activity and 10 being independent in its performance. They
are also asked to rate their level of satisfaction with their current performance of the activity. The COPM is designed as an outcome measure,
so that following intervention the initial score may be revisited and it can
be seen if there is a difference in scores. This will be developed further,
with reference to Shelly, in stage 7.

CASE STUDY SHELLY (CONTINUED)


Shelly's prioritising of her five tasks, and hercurrent
performance and satisfaction scores, produced the
following:
1. I want to be independent in using the toilet
and shower on the ward (Performance 3;
Satisfaction 1)
2. I want to be independent in dressing my lower
half (Performance 4; Satisfaction 2)

Stage 2: Selecting
theoretical approaches

3. I want to be independent in getting around in


mywheelchair, both on the ward and in the car
park (Performance 3; Satisfaction 1)
4. I want to go out to the cinema with Jonathan
(Performance 1; Satisfaction 1)
5. I want to talk to my boss about coming back to
work (Performance 1; Satisfaction 1).

With the information provided from stage 1, at this point the therapist
needs to look at which theoretical approaches would be the most effective in working with the person. This is influenced by a number of factors: the therapist's knowledge and experience of various interventions,
their clinical reasoning skills, their use of supervision, and knowledge of
evidence-based practice (Townsend 1997). A number of theoretical

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Section 3 MODElS IN PRACTICE

approaches or frames of reference may be employed, ranging from


health promotion to psychosocial, biomechanical, rehabilitative and educational, depending on the areas identified (Hagedorn 2000).

CASE STUDY SHELLY (CONTINUED)


The occupational therapist has been working on the
unit for some time and is experienced in working
with individuals with spinal cord injuries. She uses
the biomechanical frame of reference to determine
what physical function Shelly has, given her lesion
at no. She uses a learning frame of reference, l.e.
an educative approach, to help Shelly with problem-solving, the best and most effective way to
achieve safe transfers and manoeuvre her wheelchair, and adopt dressing techniques.
The compensatory frame of reference is also
used, as some skills and function have been perma-

Stage 3: Identifying
occupational
performance
components and
environmental
conditions

nently lost, and the therapist therefore helps Shelly


develop new techniques and 'trick movements'
while transferring, to compensate for lost function.
Using a rehabilitative approach, she also provides
Shelly with equipment such as a transfer board to
enable herto access hercar, and explores with
Shelly what equipment she would find useful in her
flat to help her be as independent as possible. Guiding her whole approach to Shelly is the therapist's
use of the humanistic frame of reference, which
places the emphasis on Shelly determining her priorities as to how intervention will proceed.

Having identified the performance issues, at this point the therapist


needs to talk to the person about what aspects of their physical, cognitive and affective domains are affecting their ability to carry out self-care,
leisure and productivity tasks. This may encompass anything from
fatigue, poor figure-ground discrimination and memory, to depression,
low self-esteem and lack of motivation.

CASE STUDY SHELLY (CONTINUED)


The main factors affecting Shelly are fatigue, pain and
her struggle to adjust emotionally to her accident,
aside from adjusting to the loss of physical function.
She finds her lack of bladder and bowel control particularly embarrassing and, in her eyes, 'demeaning' and

Stage 4: Identifying
strengths and resources

finds it very hard to ask for help. She often has nightmares about the accident, and feels that her mood
goes 'up and down: She asks to see a counsellor on
the unit, and also talks particularly to another patient,
Lorraine, who has sustained a similar injury.

It is important at this point to look at what strengths and resources the

person has that may aid the achievement of specific goals already
identified. This links in with appreciating the uniqueness of each person and the fact that, although the disability may be similar to
another's, each person may have very different resources to help
them cope.

Chapter 4 The Canadian Model of Occuptional Performance

CASE STUDY SHELLY (CONTINUED)


In her counselling sessions and also her work
with the psychologist on the ward, as well as
with the occupational therapist, Shelly is able to
look at her strengths and resources and names
these as:
The closeness of herfamily and Jonathan before
the accident

Her close circle of friends, who are still in contact with her
The support of heremployers, who wish herto
return to work
Her own determination to get well
Her stubbornness at not accepting defeat
Her academic and intellectual abilities.

Stage 5: Negotiating
targeted outcomes and
developing action plans

CASE STUDY SHELLY (CONTINUED)


The occupational therapist works with Shelly to
draw up a programme initially focusing on
Shelly's goals for independently transferring, and
washing and dressing. They set aside time for

Stage 6: Implementing
plans through
occupation

From all the information gathered from the previous stages, this is where
goals can be identified and outcomes set (five) with those plans then
being implemented through set targets (six).

CASE STUDY SHELLY (CONTINUED)


Through use of the rehabilitative frame of reference, the therapist works with Shelly daily at the
start to give her practice in the above areas until
she is able to carry them out first with minimal
help and finally independently. She also works with

Stage 7: Evaluating
occupational
performance outcomes

daily practice, in conjunction with interventions


by other members of the team, including the
physiotherapist and counsellor, as well as the
nursing staff.

the physiotherapists on the unit to build up her


upper limb strength so that she becomes more confident and able to manoeuvre her wheelchair, which
leads heron to her next goal of going out with
Jonathan to the cinema in hiscar.

At an agreed date, and again making reference to the COPM, the therapist and the individual together evaluate how the performance issues
identified at the start of the intervention have gone up to this point,
using the performance and satisfaction rating scale that was originally
referred to. If there is no longer an issue with the areas, five new areas
from the original list are identified, and if there are outstanding issues
still, a re-evaluation of the process continues until all outstanding
issues are resolved.

75

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Section 3 MODELS IN PRACTICE

CASE STUDY SHELLY (CONTINUED)


At the agreed date, Shelly and the occupational
therapist go through the original goals that Shelly
setand look at hercurrent levels of performance
and satisfaction. She scores them as follows:
Independence in toilet and shower. (Performance
now 9; Satisfaction 9)
Independence in dressing lower half (Performance now 10; Satisfaction 10)
Independence in using wheelchair (Performance
now 8; Satisfaction 9)
Cinema with Jonathan (Performance 10; Satisfaction 7 - mainly due to accessibility issues in the
cinema, rather than to issues to do with being
with Jonathan).

Shelly has put off speaking to her employers


about returning to work as she wants to be in a
position where she feels more independent and able
to speak from a position where she can be clear
about any specific help she may need. Shelly feels
that she still needs practice with using her wheelchair, particularly out in public, where she finds
kerbs and crossing roads a problem, but feels that
she has achieved her goals in the other areas, and
therefore chooses four other goals to work on,
including getting to herfriend's wedding, which is
only a month away. She also plans to speak to her
employers to fulfil heroutstanding goal from the
start of her work with the occupational therapist.

THEORETICAL PERSPECTIVES UNDERPINNING THE MODEL


The Canadian Model, as with the Model of Human Occupation (Kielhofner 2002, and Adaptation through Occupation (Reed & Sanderson
1992) are encompassed by the occupational behaviour frame of reference. The focus of the frame of reference supports the development of a
balanced range of occupations in a person's life. The focus on occupation
as a therapeutic intervention is not new and dates back to the ancient
world (Digby 1985), far preceding even the inception of occupational
therapy as a profession, as it emerged early in the 20th century. The
founders of occupational therapy recognised the health-enhancing
effects of carrying out meaningful activities that had purpose for the
individual (Peloquin 1991a, b).
As a relatively 'young' profession compared to medicine and nursing,
occupational therapy also originally drew on a variety of sources of
knowledge, from diverse fields such as psychology, sociology, architecture, anatomy, medicine and psychiatry. This created a rich and diverse
pool of knowledge for therapists to draw upon (Creek 2002). During its
evolutionary period, therefore, the main emphasis for occupational therapy was on what Hagedorn (2000) termed the 'development of practice',
concentrating on the 'what' rather than the 'why' of practice. In the 1980s
and 1990s, the profession concentrated much more on developing the
rationale for occupational therapy and dwelling on the unique perspective it gives to the purpose of occupation. During that period no fewer
than ten models were developed that looked specifically at the interaction between the person, their occupation and the environment (these
will be discussed further below).
The main emphasis of the Canadian Model is on the importance of
occupation, the uniqueness of the individual and the importance of
engaging the individual in determining their own interventions. These

Chapter 4 The Canadian Model of Occuptional Performance

will be examined in tum to explore which theoretical perspectives are


involved.
The Canadians developed a particular perspective on occupational
performance, defining it initially as the therapeutic use of activity in a
client-centred framework (Canadian Association of Occupational Therapists 1983). Further beliefs were set out by Townsend in 1997, namely
that occupation needs to be seen as a determinant of health, having therapeutic effectiveness, subject to change over a lifetime and, most importantly, giving meaning to life. This philosophy is also shared by other
authors (Christiansen & Baum 1997,Wilcock 1998, Kielhofner 2002) and
the emerging field of occupational science. Occupational science puts the
nature of human occupation and occupational performance at the heart
of its academic enquiry (Zemke & Clark 1996) and has been defined as
'the study of the human as an occupational being, including the need for
and capacity to engage in and orchestrate daily occupations over the
lifespan' (Yerxa et aI1989). So, while complementary to the development
of occupational therapy theory, there are nonetheless similarities in what
is being said in the context of occupational engagement, or performance,
to the Canadian Model. Occupational science also emphasises the value
of activity in gaining a sense of identity, the value of learning by doing,
and the state of 'flow' that can be achieved by engaging in fulfilling activities (Csikszentmihalyi 1992),which occupational therapists have always
recognised (Wright 2004).

The uniqueness of the


individual and the need
for client-centred
practice

The Canadian Model holds that individuals are unique human beings,
with intrinsic dignity and worth, able to make choices and with the capacity for self-determination. It also believes that all individuals have the
potential to change and have diverse abilities (Townsend et aI1990). This
participation in activity also contributes to shaping the person's own
sense of self (Christiansen 1999). It therefore is inevitable that, once the
individual is recognised as capable of making choices, etc., they should be
engaged as partners in the decision-making process, with the focus on
client-centred practice. The concept of client-centred practice was a constant theme in the development of the Model, taking its basis from the
work of Carl Rogers, who first referred to the term in 1939 in a seminal
work entitled The Clinical Treatment of the Problem Child. It is rooted in
humanistic psychology and has influential theorists, besides Rogers
(1986), Frankl (1992), Kelly (1955) and Maslow & Abraham (1987), who
placed emphasis on the essentially positive nature of every individual,
needing to be valued for themselves. In that way they considered that the
individual would respond to this 'positive regard' and be in a position to
take control of his or her life. The humanistic view places emphasis on the
need for authenticity, honesty and non-judgement (Rogers 1986). Clientcentred practice within occupational therapy therefore embraces respect
for, and partnership with, all individuals involved in receiving intervention (Townsend 1997) and recognises the strengths that those individuals
bring with them, the need they have for choices, and the benefits of collaboration between the person and the individual in planning and implementing goals (Law et a11995,Sumsion 1999).

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Section 3 MODELS IN PRACTICE

SIMILARITIES TO OTHER MODELS


As stated earlier, the period of the 1980s and 1990s saw the development
of models whose emphasis was on the person's ability to perform competently their occupations within a physical and social environment
(Polatajko 1992, Reed & Sanderson 1992, Stewart 1992, Chapparo &
Ranka 1997, Christiansen & Baum 1997, Schkade & Schultz 1997, Hagedorn 2000, Kielhofner 2002).
Hagedorn (2002) terms these the 'occupational performance models'
(p.129) and the 'Person-Environment-Occupational Performance (PEOP)
models' (ibid). All of them have as common values and beliefs similarities with the Canadian Model, in that they view as central the value of
occupation as contributing to wellbeing; the uniqueness of the individual; and the person's experience and contribution as vital to the intervention process.
In terms of non-occupational-therapy models, there are some similarities with nursing models, which, while addressing the interaction
between the person and their environment, do not specifically talk about
occupational performance. However, terms such as adaptation (Roy
1984), self-care (Orem 1985) and activities of daily living (Roper et al
1990) are key concepts for the most common nursing models used in the
UK. As well as this, the Illness Constellation Model (Morse & Johnson
1991),which is explored in more detail in Chapter 5, focuses on the experience of wellness, wellbeing and the experience of illness for the individual.

RELATIONSHIP TO REHABILITATION
Occupational therapists have been involved in the process of rehabilitation since their foundation (Creek 2002). The Canadian Model could be
considered to work best in areas where therapists have not only the time
to build up relationships with the people they are working with, but also
the time to work on specific goals. Since the structure of rehabilitation
teams consists of clinicians who have a desire to work with individuals
over a set period of time to achieve certain outcomes, the Model and the
Measure, as already demonstrated above, facilitate this process entirely.
Two important tasks identified as being central to the rehabilitation
process are the identification of problem areas and goal setting (Wade &
de long 2000) and the use of the COPM strives to do precisely this.
The emphasis placed by Whiteneck (1994) on the individual receiving
treatment being at the heart of the rehabilitation process equally has its
echo in the person-centred approach that the Canadian Model, and particularly the COPM, has in enabling the person themselves to identify
the areas they perceive as a problem and from that point to participate in
identifying with the clinician a strategy for addressing those problem
areas. This statement is also backed up by some of the literature already
mentioned (Wressle et a11999, 2001, 2003) and shows that not only does
the person participate in goal-setting but that through this process selfesteem and motivation increase, as well as quality of life. This process

Chapter 4 The Canadian Model of Occuptional Performance

too relies on a team approach rather than an individual approach, which


a rehabilitation setting provides an excellent opportunity for.

Interprofessional
working

The research that has taken place concerning the Canadian Model has
tended to focus on the use of the COPM and its efficacy as an outcome
measure (Law et al 1990, Bosch 1995, Toomey et al 1995, McColl et al
2000). There appears to be little research to date which specifically
addresses the use of the Measure as an interprofessional team tool. Fedden et al (1999) implemented the Measure in a community setting for
the older person and found that using the Measure enabled them to
have a clearer sense of focused communication with the rest of the multidisciplinary team. Their report, however, did not include feedback on
how the team perceived the use of the Measure. Wressle et al's study
(2003) was conducted in a day-treatment setting in Sweden, the client
group having rheumatoid arthritis. Although this involved a relatively
small group of clinicians, including occupational therapists, physiotherapists, nurses, social workers and physicians, the overall evaluation by the team of the COPM had some positive results. These
included: improved participation from the client perspective, as it
specifically involved the latter in the planning of interventions that
were specifically meaningful to them. This finding is also supported by
an earlier study by Wressle (2002), which looked at the improvement in
client participation in the rehabilitation process using the COPM. The
other members of the team were also challenged by taking the focus
away from function to looking at activity; and finally the team felt that
their conferences were affected positively by the structure of the
reports that the occupational therapists gave from the results of the
COPM, as they clarified the needs of the clients and kept the focus on
rehabilitation.

Barriers to
interprofessional
working

Wressle's (2003) study did highlight some interesting issues about potential barriers to interprofessional working. Although as is stated above,
the team were challenged by the emphasis on engagement in activity
rather than concentrating on function, which was constraining for team
members working primarily from a medical model of care. Here it has to
be acknowledged that the Canadian Model is not designed to supersede
diagnostic tests or any other interventions that a team would need to
carry out. One of the reports from the team was that if they were to do
the COPM themselves they would put a different emphasis on questions
that they asked of the clients, depending on the perspective they were
coming from. This would make sense for them, but in essence would not
be true to the purpose of the COPM, with its clear emphasis on
performance rather than function.

Similarities and
comparisons with the
ICF

The International Classification of Functioning, Disability and Health


(World Health Organization 2001) has already been covered in some
detail in Chapter 2 of this book, so this section proposes only to give a
general overview of the former and examine any similarities and
differences to the Canadian Model.

79

80

Section 3 MODELS IN PRACTICE

The Canadian Model, as with the ICF, is applicable to any individual


irrespective of health condition and age. Both also look at the context in
which the individual lives and operates, i.e, the environment, in all its
forms, and both look at the personal factors, which can enable or disable
the person in terms of how able they are to be independent in functioning. The three levels of human functioning as described by the ICF (the
level of the body; the whole person; the whole person in a social context)
find their counterparts almost completely at the level of the physical performance components; the person; and the environment, as outlined in
the Canadian Model.
The aspects of functioning and disability within the ICF, particularly
body function and structure, again find a relationship with the physical
component section of the Canadian Model. There is a closer relationship between the two when it comes to the Activities and Participation
section of the ICF and the Canadian Model. The ICF's categories cover
learning, communication, mobility, self-care, domestic life, social activities, civic and community life, all of which are incorporated by the performance areas of Self-care, Productivity and Leisure within the
Canadian Model.
There is also within the contextual factors of the ICF, which include
technology, the natural environment, the social environment and service environment, the same spread of potential environmental influences
on the person's functioning that are present in the Canadian Model.
And the area of attitudes observable as a result of customs, practices,
values, norms and religious beliefs, finds itself a link not only to the
aspects of culture covered in the Environment section of the Model, but
also the area of Spirituality which is at the heart of the latter. As the
author of Chapter 2 has acknowledged, there are some personal factors,
such as age, gender, coping styles and previous experience, that are not
covered by the ICF but would be in the Canadian Model, particularly in
using sections of the occupational therapy process model, already discussed above, that take into account the uniqueness of the individual
and therefore the person's strengths and needs and coping strategies
(stage 4).
As with the Canadian Model, the ICF is designed as a conceptual
framework rather than a process. As with the occupational therapy
process model, which actions the Canadian Model into a working document, the same needs to happen with the ICF in terms of its application
to a person, as illustrated in Chapter 2 of this book.
Seeing Shelly from the perspective of the ICF again expands from the
case study into how a person could be seen from a perspective of how
she functions, how the environment impacts on her and her social
relationships.
One of the fundamental areas not addressed in the ICF but core to the
Canadian Model is that the individual dictates what they wish to do
through the use of the assessment tool of the COPM, which is the starting point of intervention. Another is the influence of the person's age on
determining activities, with the Canadian Model being quite explicit
about the individual's activities changing over their lifespan and

Chapter 4 The Canadian Model of Occuptional Performance

therefore any COPM assessment needs to be reviewed regularly to


ensure that it is current to the person's wishes.

CONCLUSION
This chapter has considered the use of the Canadian Model in relation to
rehabilitation and interprofessional working. There issome research to show
that occupational therapists are finding that the use of the Canadian Model
and the Performance Measure give them a clearer sense of their role within
the interdisciplinary team, as already has been mentioned above (Wressle
et al 2003). However there has been little research into the use of the Canadian Model as a rehabilitation tool that the whole team may use, so some
of the questions for practice mightinclude:

QUESTIONS FOR PRACTICE


Is the Canadian Model a useful model to use within an
interdisciplinary team?
What would be the disadvantages and advantages for the
interdisciplinary team in using the COPM as an assessment tool?
Where does the Canadian Model fit in the area of rehabilitation?
What is fundamental about the model that fits it to the rehabilitation
setting and where do other occupational therapy models fit in this
particular environment?

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Chapter 4 The Canadian Model of Occuptional Performance

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Wressle E, Eeg-Olofsson AM; Marcusson J, Henriksson


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evolving discipline FA Davis,. Philadelphia

83

Chapter

85

The Illness Constellation Model


Sally Davis

INTRODUCTION
Rehabilitation is a complex process because there are different variables
that contribute to it. One of these is what the experience means for that
individual. How are they dealing with their illness? It doesn't matter
whether the illness is a long-term chronic condition or more acute. It
may also be classified as trauma rather than illness. In order for healthcare professionals to respond appropriately it is important for them to
understand how different individuals might see and deal with their illness. One model that helps understand this experience is the Illness
Constellation Model, which was developed, by Morse Et Johnson (1991)
in response to the need for a more comprehensive framework that might
help to explain how individuals view illness and behave towards it. The
aim of this chapter is to:
Describe the model and its development
Explore its relationship to rehabilitation and the implications for
interprofessional working
Discuss it in relationship to other models
Discuss it in relationship to the International Classification of Functioning and Health
Relate the model to case studies.

THE MODEL
Morse & Johnson (1991) developed the Illness Constellation Model using
five grounded theory studies, which looked at the experience of chronic
illness for different individuals. These studies covered the experience of:

Adjusting to a heart attack


Women having a hysterectomy
Individuals with schizophrenia leaving the psychiatric hospital
Mothers' involvement in their adolescent
Husbands during their wives' chemotherapy.

86

Section 3 MODELS IN PRACTICE

Although these are very different experiences of illness Morse & Johnson
(1991) were able to identify similarities between the stages that individuals go through during their experience of chronic illness. The studies
focused very much on what the experience of chronic illness was like for
that individual and their significant others.
Morse & Johnson (1991) point out that illness is generally conceptualised in terms of the individual's experience of symptoms, which is synonymous with the medical model, or in terms of their ability to cope with
the illness, which can be identified as an adaptation or coping model.
Both these views of illness are limited and take no real account of the
actual experience of being ill, for the individual and their significant others. In practice the relationships between the individual undergoing
rehabilitation and their family undergo many phases, in which at times
either the individual or the family is compensating in response to the illness/incident. The individual goes through stages of feeling ill and
wanting to relinquish control to the realisation that things may not
improve and that they need to begin to accept this and internalise it to
enable them to get on with their life.
The Illness Constellation Model (Morse & Johnson 1991)identifies this
and describes four main stages that the individual and others go through
(Table5.1). The first two stages of uncertainty and disruption are characterised by the individual losing control, whereas stages 3 and 4 are about
the individual regaining control. For 'relevant others' this progression is
almost reversed, with the first two stages being where they are perhaps
taking more control and then relinquishing that in stages 3 and 4.
It is useful to consider the stages in relation to the Trajectory of Illness
Framework identified by Corbin & Strauss (1991), which describes the
experience of chronic illness. The Trajectory of Illness Framework was
developed using a grounded theory approach looking at the experience
of dying. It has been applied to different types of chronic illness: cardiac
illness (Hawthorne 1991), cancer (Dorsett 1992), multiple sclerosis
(Miller 1993), diabetes (Walker 1992) and stroke rehabilitation (Burton
2000). It has also been used to look at elderly patients with chronic illness
(Robinson et al 1993). The Trajectory of Illness framework consists of
eight stages: pre-trajectory, trajectory, crisis, acute, stable, unstable,
downward and dying. Table 5.2 shows a comparison of these stages with
the stages in the Illness Constellation Model.
One of the things the Trajectory of Illness Framework makes explicit,
which the Illness Constellation Model does not, is that the phases may
not all be positive. It takes into account that challenges individuals may
face may cause them to deteriorate. It implies more of a cyclical ongoing
process, whereas the Illness Constellation Model identifies stages an
individual will go through. The Illness Constellation Model implies that
there is an end; however, for some individuals this end may not be
reached. This view is supported by Jarrett (2000) who identified a model
of coping that highlights the transitional process of living with a chronic
illness. Jarrett's model incorporates elements of the Illness Constellation
Model and elements of the Trajectory of Illness Framework and makes
explicit the fact that adaptation, adjustment and mastery are not

Chapter 5 The Illness Constellation Model

Table 5.1 The stages of the


Illness Constellation Model

Stage

Self/Sick Person

Significant Others

1. Uncertainty

Suspecting: Signs of illness;


feeling unwell/unsettled

Suspecting: Becoming aware


something serious is
happening

Reading thebody: Is this


normal?

Monitoring: for symptoms

Being overwhelmed: physically


and emotionally

Becoming overwhelmed: by
worryand concern; the illness
is a reality

Relinquishing control:
Choices and decisions are
made by others

Accepting responsibility: They


feel a need to help in any way

Distancing oneself: Things


seem unreal

Being vigilant: Waiting to see


if they are needed

Making sense: Coming to terms


with what the illness means

Committed to thestruggle:
Using all their efforts

Preserving self: Begin to


assert themselves to reclaim
control

Buffering: Protecting the


individual from worry and
concern

Renegotiating roles and


responsibilities: Accepting
and relinquishing

Renegotiating roles and


responsibilities: Accepting and
relinquishing

Setting goals: in order to feel


they are making progress

Monitoring activities: to
ensure that the individual isn't
overdoing it

Seeking reassurance: to help


that sense of uncertainty

Supporting: giving praise and


encouragement

Taking charge: Relationships


gradually return to resemble
former patterns

Making it through: Continue


to beconcerned aboutthe
future

Seeking closure: Resolving


what has happened to them

Seeking closure: Putting the


illness behind them

2. Disruption

3. Striving to

regain self

4. Regaining
wellness

Source: With permission from Morse Et Johnson 1991.

definitive endpoints in the process of chronic illness. They are ways in


which individuals move in the transition process and do not have to be
achieved in order for an individual to be considered well.
The Illness Constellation Model can be considered in terms of a cyclical process where individuals may move through each stage, may
remain in one stage or may go back through the stages. An individual
may remain in stage 3 but feel they have adapted to their illness. It could
be said that the Illness Constellation Model is more of a model of wellness than illness, with stage 4 being focused on regaining wellness.

87

88

Section 3 MODELS IN PRACTICE

Table 5.2 Comparison of


the stage of the Trajectory of
Illness Framework and the
Illness Constellation Model

Trajectory of Illness Framework

Illness Constellation Model

Pre-trajectory: Occurs before the


onset of symptoms

Stage': Where the individual is suspecting


that something is wrong

Trajectory onset: Signs and symptoms


appear

Signs and symptoms would appear in


Stage 2

Crisis phase: The signs and symptoms


pose a threat to the individual's
physical, social or psychological
integrity

Stage 2: Where the individual is


experiencing disruption and relinquishing
control

Acute phase: Active intervention is


required

Active intervention could occur at Stages 2


and 3; in Stages 3 and 4 the individual is
beginning to take control

Stable phase: Intervention is effective


and a period of stability has been
reached

Stage 3: The individual is making sense of


what is happening - this could be seen as
a period of stability

Unstable phase: The individual may


experience challenges to their
recovery, which may require them
to reappraise the situation

Stage 3: The individual may need to


renegotiate roles and responsibilities and
set and renegotiate goals; if the individual
is unable to respond to the challenges they
may go back to stage 2

Downward phase: The individual is


not able to respond to the challenges
and their condition may deteriorate

Stage 2: The individual will go back to


the disruption stage where they are
relinquishing control

Dying: the time leading up to death

This is not explicitly mentioned in the illness Constellation Model. It could be associated with Stage 2; however, at this point
the individual mayfeel at peace with
themselves and feel they are seeking closure, as identified in stage 4.This may be
the same for significantothers

REHABILITATION
The Illness Constellation Model fits in with the aims of rehabilitation,
which can be seen as maximising an individual's quality of life and
focusing on wellness. This fits in with the Health Promotion Model
(Davis 1995) discussed in Chapter 2, which highlights the link between
rehabilitation and health promotion, the focus of both being on wellness.
The Illness Constellation Model, with its focus on control, fits in with the
notion of autonomy for the individual that is highlighted in the Kings
Fund definition of rehabilitation (Sinclair & Dickinson 1998), which
describes rehabilitation as a process aimed at restoring personal autonomy. One way for individuals to regain personal autonomy is for them
to set their own goals, which is the focus of stage 3 of the Illness Constellation Model. The stages of rehabilitation as identified in Chapter 1
can be linked to the Illness Constellation Model (Table 5.3).

Chapter 5 The Illness Constellation Model

Table 5.3 Stages of


rehabilitation and the stages
in the Illness Constellation
Model

Stage of Rehabilitation

Stage In the Illness Constellation Model

Stage 1: Initial critical stage goal is to maintain life

and

Stage 2: The individual is relinquishing control


de~nding

on health-care professionals

Stage 2: Regaining some physical


function - goal will depend on
needs; maybe to maintain a safe,
comfortable environment

Stage 3: The individual is beginning to make


sense of what is happening; maybe focusing on
regaining some physical function

Stage 3: More active programme


of rehabilitation - goal is
concerned with the individual's
quality of life

Stage 3: The individual is renegotiating roles


and responsibilities and setting goals, taking
a much more active role

Stage 4: Individual reached full


potential - focus is onthem liVing
with their disabilities and
maintaining their quality of life

Stage 4: The individual is feeling confident


with theIrabilities, relationships are returning
to theirformer state, theyare able to seek
some closure

In terms of rehabilitation it is useful to consider each stage of the Illness Constellation Model and to discuss the related concepts. Each stage
will be related to the stories of Chan and Myrtle, the case studies detailed
in Chapter 2. An issue to consider that is particularly pertinent in rehabilitation where there is a close relationship with the team is that 'others'
could be considered as being the multi or interdisciplinary team.

Stage 1: Uncertainty

At this stage the individual is beginning to suspect something is wrong


but may not be able to identify what it is. Their family may be suspecting that something is not right and may be extremely concerned and
worried. Rehabilitation would probably not begin at this stage, as the
individual may not be in the health-care system. However, health promotion is an important aspect to consider at this stage as it can prepare
individuals to recognise the signs that something may be wrong. For
example having read leaflets on breast examination and consequently
carrying it out would then enable a woman to read the signs that something is not right. In order for individuals to know what is 'normal' with
regards to their body they may need education and knowledge. This
may come in the form of leaflets, media, discussion with others, journals
and books.

CASE STUDY CHAN


Chan (42, had a stroke) did not feel right in himself before the stroke. He felt generally unwell.
Chan had been given advice about his high blood
pressure but did not follow it. He did know that he
was at risk of having a stroke. Chan's wife had
been worried for some time about Chan's blood

pressure and had been urging him to follow the


doctor's advice. Although Chan had not been his
usual self, she had put it down to overwork and
tiredness. Chan's children had sensed that something wasn't right with their dad and tended to
avoid him.

89

90

Section 3 MODELS IN PRACTICE

CASE STUDY MYRTLE


Myrtle (75, fractured left neck of femur) did not
have any idea that this was about to happen.
Myrtle had become more anxious since fracturing
her right neck of femur and was worried about the
number of falls she had had. This was also a concern for her family, in particular Cassie (her eldest

Stage 2: Disruption

daughter, who visited often and was close to her


mother), who had repeatedly tried to get Myrtle to
wear herspectacles. The staff in the nursing home
had also been concerned at Myrtle's poor eyesight
and lapses of concentration. They had tried where
possible to ensure that Myrtle was not left alone.

At this stage the individual has become ill and needs to relinquish control to others, which will more than likely be health-care professionals.
For the individual things may seem unreal and there may be a sense that
things are happening to someone else. Significant others may want to
help in any way they can so that they don't feel useless. Morse & Johnson (1991) and McGonigal (1998) identify stages 3 and 4 as being stages
of rehabilitation. However, if rehabilitation is to be thought of as beginning from the moment of onset of illness or trauma, then this would
include stage 2, as shown in Table 5.3.
Paterson & Stewart (2002) conducted a small study to describe how
adults with traumatic brain injury perceived their social interactions
and relationships. Three categories were identified: diminished concentration, disrupted feelings and emotions, and redefining self.
Although only a small sample of six participants was used the results
support the levels of the Illness Constellation Model. In the category of
disrupted feelings and emotions, participants described changes in
feelings and emotions that were a result of having reduced control over
anger and frustration. This was accompanied by loss of motivation.
This category supports stage 2 of the Illness Constellation Model,
where individuals feel that they have no control and that their life has
been disrupted.

CASE STUDY CHAN


At this stage, Chan was semiconscious for a few
days; he was unable to communicate and relied on
health-care professionals to take control. When
Chan regained consciousness he still required a lot
of help and felt out of control. Health-care professionals took control to ensure that Chan was not in
any danger and to prevent complications. Chan's
wife wanted to look after Chan at this stage and

spent a lot of time by hisside. She felt frustrated


that she wasn't able to care for him fully. The
health-care professionals supported her at this
stage by giving her information and talking through
what was happening to Chan. They also put her in
touch with the Stroke Association, who were able
to put her in touch with someone locally whose
husband had also had a stroke.

Chapter 5 The Illness Constellation Model

CASE STUDY MYRTLE


Immediately following her fall, Myrtle was in a lot
of pain and was happy for the doctors to take control. She quickly had a hip operation and was quite
unwell for a few days following it. The team took
control at this stage and their focus was to ensure
that Myrtle did not suffer from any complications
and that she had adequate pain control. Myrtle's
eldest daughter, Cassie, was able to visit Myrtle
every day. The rest of Myrtle's family were not able
to visit but they rang regularly. Cassie felt that at
times the nurses in the ward did not take much
notice of Myrtle. This feeling resulted in Cassie

Stage 3: Striving to
regain self

being angry with the nurses. One of the reasons for


this feeling was that Cassie felt helpless at not
being able to do anything for her mother and felt
guilty that Myrtle had fallen. She had been trying
unsuccessfully to get Myrtle to wear herspectacles
and felt that if she had succeeded Myrtle would not
have fallen. She also felt that her brothers and sisters blamed herfor Myrtle's fall. Cassie was unable
to share these feelings with the health-care professionals. At this stage Cassie might have benefited
from one-to-one support from a member of the
team.

At this stage the individual is beginning to come to terms with the consequences of the illness or disability. There is a need at this stage for individuals to begin to take back some control, which can affect their
own self-concept and confidence. The second category of Paterson &
Stewart's study (2002) was 'redefining of self': participants described how
perceptions of themselves as individuals had been affected by changes in
their social interactions and relationships with family and friends. This
category fits in with stage 3, in which the individual is striving to make
sense of what is happening and is renegotiating roles. Fundamental to
rehabilitation is the need for individuals to set their own goals and to participate as fully as possible in their care. This means that individuals need
to have some control over the rehabilitation process. In stage 3 individuals are beginning to take back this control. Burks (1999), in the development of a nursing practice model for chronic illness, identifies
self-management as being a key concept in relation to rehabilitation. This
is in terms of the individual's role in decision-making and goal setting.
Developing a sense of self can also be seen as a spiritual journey
(Nosek & Hughes 2001). Self is related to self-concept and self-esteem. In
terms of 'others' in the Illness Constellation Model, therapeutic use of
self is important to health-care practitioners, who use themselves in
a therapeutic way. Pizzi & Briggs (2004) identify the importance of
health-care practitioners developing an awareness of themselves. This
means health-care practitioners seeing the personal consequences of illness for the individual, responding to individuals in an understanding
and empathetic way and establishing a two-way relationship. This view
is supported by Hwu (1995) in a study exploring the impact of chronic
illness on 177 patients in China. The study concluded that it is important
for health-care professionals to understand the experience of chronic illness for the individual and to understand how individuals respond to it.
The need for a holistic assessment, discharge planning and follow-up of
patients was highlighted.

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Section 3 MODELS IN PRACTICE

,r

~,;. : resumeChhis role a~ a husband and fahthller. At thiS h


~ stage
an is facing a number 0 f c a enges, wh"IC
~ he is finding difficult to deal with. He could
,~I progress on to stage 4 or he could go back to stage 2.
~ The support he gets at this point is essential.
Chan's wife is trying to protect Chan as much as
possible from the challenges that have arisen as

a result of his stroke. These challenges include the


possibility of Chan not returning to work, not being
able to drive and the home environment being
unsuitable. The relationship between Chan and his
wife since the stroke has been strained, which has
been difficult for them both as one of their
strengths as a couple was that they supported each
other, discussed everything and made decisions
together. For Chan this loss has felt like a bereavement. He doesn't believe that his wife feels the same
as before, when in fact she does. For Chan to get
through this stage he and his wife need to resume
their relationship, both physically and psychologically. The team could help facilitate this by helping
Chan and his wife identify goals towards this. This
may include Chan and his wife spending some time
together and maybe having time at home.

Myrtle has not wanted to take control: she has


been happy for the doctors and health-care professionals to make decisions for her. This fits in with
Myrtle's behaviour since living in the nursing home,
where she has mainly had an external locus of control, particularly where professionals are concerned.
She has always felt happy to relinquish control and
follow instructions. The team have tried to enable
her to identify goals that are important to her. Myrtle's
family have regular discussions about Myrtle and
feel that the team should be pushing Myrtle
towards being independent in aspects of physical
care. Cassie, as the spokesperson for the family, has
had talks with the team about this. The team have
identified how Myrtle is and feel that encouraging

her too much would result in her not wanting to do


anything but lie in bed. They are therefore identifying small goals for Myrtle to achieve. They have
tried to explain this to Cassie but Cassie believes
they should be doing more and has the attitude
that they need to be cruel to be kind.
Myrtle is really still in stage 2, whereas her family and the health-care professionals are at stage 3.
In terms of self, Myrtle has gained a lot of her
strength from the Church. This is the same for her
family, who all hold deeply religious beliefs. To some
degree Myrtle feels that God will look after her.
Cassie, although believing strongly in God, realises
that Myrtle needs to make some effort if she is to
regain some independence and control.

Chan has been making sense of what it will mean


, to him to have had a stroke. He has been speaking
to members of the rehabilitation team about the
consequences of his stroke. Chan has been feeling
angry at what has happened to him and has found
it difficult to come to terms with the stroke. Chan
has lost confidence in his abilities but has begun to
identify goals with the team. He has not been able
to discuss issues with his wife: he feels he will lose
face with his wife and the community if he cannot

Stage 4: Regaining
wellness

At this stage the individual is beginning to take charge of their life to


regain wellness. Wellness in the literature is described as encompassing
spirituality, physical health, social engagement and environment. Wellness can be considered to be a multilevel phenomenon that encompasses
the person, the community and the social and physical environment
(Putnam et al 2003). Putnam et al (2003) conducted a study to explore
how people living with long-term disabilities conceptualise health and

Chapter 5 The Illness Constellation Model

wellness. 99 adults between the ages of 22 and 82 were included in the


study, with long-term disabilities including multiple sclerosis, cerebral
palsy and spinal cord injury. The participants identified the following
characteristics of health and wellness:
Being able to function at a level that enables them to do what they
want to do
6 Being self-determining or independent
'" Having an emotional state of wellbeing as well as physical wellbeing
Having no pain.

!I'

For the majority of participants being able to perform necessary or


desired daily activities was an important measure of health and wellness.
As a result of the study Putnam et al (2003) identified that interventions to promote health and wellness could take place at different levels:

.. Individual level: the development of coping strategies, interacting


with peer groups, staying active, contributing to society, setting
personal goals and challenges
il Community level: interacting socially with friends and family, feeling
valued by friends and family and others in the community
Health-care professionals: being respectful and informed and concerned
with the total person
Systems level: accessible environment and accessible accommodation.
Mastery is a feature of stage 4. Morse & Johnson (1991) talk about it as
individuals trusting their abilities. It is about being in control and having skills. It can be seen as being related to self-efficacy, identified by
Bandura (1997) as being the ability of individuals to adapt to a stressful
situation as illness or a new disability by reorganising cognitive, social
and behavioural skills to adapt to the situation. Hampton (2004), in a
study of 127 participants exploring wellbeing among people with spinal
cord injuries, found that there was a strong correlation between self-efficacy and perceived social support to subjective wellbeing. The study
concluded that, in order to increase an individual's wellbeing, rehabilitation must incorporate training programmes that enhance self-efficacy
and social support. Self-efficacy was found to be related to an individual's level of confidence. Airlie et al (2001) developed a self-efficacy scale
for people with multiple sclerosis. The scale which can be used by professionals to measure an individual's level of self-efficacy, covers questions on the amount of control individuals feel they have and what
affects that control. It also focuses on the way individuals cope.

, CASE STUDY CHAN


Chan is now at home with his family. He has
adapted to his situation to a degree. He has learned
new skills to enable him to be independent and he is
able to negotiate the stairs in his house. He has
been given some equipment to enable him to bath

independently. With the support of a clinical psychologist, Chan and his wife have begun to talk
about the implications of the stroke. They are still
both seeing the psychologist on an outpatient basis.
While in the unit they were also able to talk to

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94

Section 3 MODELS IN PRACTICE

a nurse about the sexual side of their relationship.


She was able to give them some written information
and talk this through with them. As a result of this
support Chan has felt more confident and feels he is
beginning to resume his role as a husband. There are
still issues around Chan returning to work, which are
a result of his employers' views. Chan wants to
return to work; this is to him an important element

of him as a man. The community occupational therapist is discussing the issues with Chan's employers
and it looks as if they will find a part-time role for
him. Chan and his wife have been supported by their
neighbours and friends. There is a strong sense of
community where they live. It could be said that
Chan has developed self-efficacy by reorganising his
skills and behaviour to adapt to the situation.

,CASE STUDY MYRTLE


Myrtle is now back in the nursing home. She has
recovered from her hip operation and is functioning
physically as she was before the fall; however, she
is much more anxious and constantly calls for the
nurses. There are still issues with her not wearing
her spectacles and being forgetful. Myrtle has
maybe accepted that this is a normal state for her
and feels that in terms of control she has as much
as she wants. It could be argued whether Myrtle is
at stage 4 in terms of regaining mastery. Perhaps
she has regained well ness in terms of being at the
level she was before. It could be said that Myrtle
has almost skipped stage 3, as she only regained

a limited amount of control, which could be seen as


her way of coping with events. This would fit in
with Myrtle's previous coping style. Cassie has
resumed her routine of visiting Myrtle three or four
times a week in the nursing home. Cassie feels she
has a huge weight on her shoulders as she is constantly in fear of Myrtle falling again. She feels she
is not able to relinquish control, so remains at
stage 3, in which she tries to protect Myrtle and
monitors what Myrtle is doing. The rest of Myrtle's
family are in constant contact with Cassie about
Myrtle, which is stressful for Cassie. Cassie is not
able to seek any kind of closure to the event.

.LOCUS
. OF CONTROL

As control is a feature of the Illness Constellation Model it is useful to


consider the concept of locus of control. The relevance of this is highlighted in the story of Myrtle. The theory of locus of control (King 1984)
refers to how much an individual thinks their actions affect events that
happen generally to them. Two main types of locus of control are identified:

Internalloeus: Individuals believe that they are able to make a difference and that they have control over what happens to them
$
Externalloeus: Individuals believe that others control their lives and
that they are unable to make a difference.
There is little research on the implications of locus of control for rehabilitation and the effect it may have on rehabilitation outcomes. Norman &
Norman (1991) looked at the relationship of individuals' health locus of
control beliefs to progress in rehabilitation and found that participants
who believed in internal locus of control progressed in rehabilitation
more than those who believed in external locus of control. There were 93
participants in the study but it is not explicit what their chronic illness or

Chapter 5 The Illness Constellation Model

disability was. Younger et al (1995) looked at the relationship between locus


of control and cardiac rehabilitation to mastery of illness-related stress. The
sample consisted of 111 individuals who were in hospital with coronary
artery disease. The results showed some correlation of internal locus of control to growth and total mastery and some correlation to change.
It could be said that individuals generally tend to be more of one type
than the other; however, we all dip in and out of internal and external
locus depending on events that happen to us. In terms of chronic illness
and disability an individual with a generally internal locus may take on
an external locus, thereby relinquishing control when they are acutely ill in relation to the Illness Constellation Model, in stage 2. It is important
for professionals to recognise where individuals are in terms of their
locus of control as this can have an effect on how they adapt to their illness. This is evident with Myrtle, where the team are working in accordance with her locus of control and by doing that they are able to help
Myrtle to achieve some small goals. Applying the Illness Constellation
Model, someone with a mostly internal locus may go through the stages
more quickly than someone with an external locus. Someone with an
external locus may not achieve level 4, where the focus is on taking
charge and attaining mastery. This point of view is supported by
Younger et al (1995). This focus on control is emphasised in the National
Service Frameworks for older people (Department of Health 2001) and
the forthcoming National Service Framework on long-term conditions.
In order for individuals to regain control, rehabilitation professionals
need to move away from thinking in terms of the disease process - a feature of the medical model (Morse & Johnson 1991) - to more of a problem solving approach in terms of the individual and their environment.
Rehabilitation professionals need to rethink strategies that enable
individuals to question their own potential and take responsibility for
improving their own health (McGonigal 1998). However, it is important
that these strategies take into account an individual's locus of control.
Table 5.4 relates rehabilitation strategies to the levels of the Illness
Constellation Model.

COPING
The Illness Constellation Model is really about the way individuals
adapt to and cope with their changed circumstances. The way people
adapt and cope depends on how they see the situation and the resources
they have to cope with and adapt to it. Coping is the process individuals
go through to manage external or internal demands that they identify as
being too much for them to resolve. They feel they do not have the physical or psychological resources (Lazarus & Folkman 1984). In their model
of coping, Lazarus & Folkman (1984) identify that individuals appraise
the situation in the following ways:

", Primary appraisal: The stressor is appraised in terms of the harm or


loss it may cause and in terms of future threats and the degree of
challenge it causes. For example, Chan saw the stroke as affecting his

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Section 3 MODELS IN PRACTICE

Table 5.4 Stages of the


Illness Constellation Model
and rehabilitation strategies

Stage of Illness
Constellation Model

Goal of Rehabilitation

Strategies

Stage 1: Uncertainty

Prevention of illness

Displaying and providing


information

Raising people's awareness

Screening for potential problems (e.g. blood pressure,


glucose monitoring) and
abnormalities

Prevention of complications

Monitoring individual's physical state

Maintaining life and safe


environment

Supporting significantothers
Supporting the individual

Stage 3: Striving to

For individual to take


control regain self

Assessment of individual's
strengths, weaknesses, health
beliefs
Setting realistic goals
Promoting empowerment
Assessment of environment
Focus on relationships

Stage 4: Regaining

For individuals to remain at


their optimum state of
wellness

Support in the community


Assertiveness training
Counselling
Financial support
Monitoring access
Promoting social interaction

Stage 2: Disruption

wellness

whole life, causing him losses in terms of independence, work and in


his relationship with his wife. It gave him a lot of challenges to face
Secondary appraisal: The coping resources and options an individual
has are appraised. Chan usually coped with events by discussing
them with his wife. Chan has identified that there is a difficulty with
his relationship with his wife, which has affected the way he copes.
These levels of appraisal relate to stage 3 of the Illness Constellation
Model.
Other elements identified by Lazarus & Folkman (1984) that relate to
the model are:
to

Coping responses and strategies: Information seeking, direct action,

turning to others. For Chan and his wife this involves seeking
information and receiving support from the team in particular the
clinical psychologist
Coping tasks: Reducing harmful environmental conditions,
maintaining a positive self-image, continuing satisfying relationships.
Chan was able to achieve a positive self-image by identifying and
achieving goals and seeking support. He and his wife also worked at
resuming their relationship. Having some adaptations to his home
also helped him cope with the situation

Chapter 5 The Illness Constellation Model

It

Coping outcomes: Psychological outcomes, resuming usual activities,


physiological changes. Chan achieved outcomes in terms of his
psychological and emotional state. He was able to resume most of his
usual activities. In terms of physiological changes he achieved a level
of physical independence.

Other factors that affect the wayan individual copes are their personality, other life stressors, social support, money, time and usual coping
styles (Lazarus & Folkman 1984). For Chan there were issues around
money. When discharged home he had a lot of social support in terms of
family, friends and neighbours.

RELATIONSHIP TO THE INTERNATIONAL CLASSIFICATION


OF FUNCTIONING, DISABILITY AND HEALTH

In terms of the ICF the Illness Constellation Model relates mostly to Part 1:

Functioning and Disability and Part 2: Contextual Factors. The changes


an individual has in terms of their body functions and structures will
affect the way they perform in activities, which in turn may affect the
way they deal with the situation. For example, the loss of function in
Chan's left arm and leg has decreased his level of independence, which
he has found difficult to deal with. At stage 3 this has caused him challenges, which have prevented him moving on to stage 4 at a quicker
pace. One of the issues the ICF emphasises that could affect the stages
people go through in the Illness Constellation Model is the difference
there may be between the capacity an individual has in terms of activities and their actual performance. For example, Myrtle does have the
capacity to wash and dress herself but she continually asks for assistance. She has taken on a role of dependence rather than independence.
This would suggest that there are issues in terms of control for Myrtle,
which may account for the difficulty in her moving through stage 3 and
on to stage 4.
Environmental factors, as identified in the ICF,may also have an effect
on the stages of the Illness Constellation Model. There may be external
influences that will affect the wayan individual deals with their illness
and how they move through the stages in the Illness Constellation
Model. For example, there is an issue for Chan in terms of his employers'
attitude towards him returning to work. This could be a difficult challenge for him to cope with and as a result he could revert back to stage
2, in which he wants others to make decisions for him. In the early stages
of his stroke Chan wasn't able to return to his house because of the access
difficulties due to the steps. This factor may have hindered his progression from stage 2 to stage 3. Within the section on environmental factors
in the ICF is a chapter on support and relationships.
Perhaps one of the most important areas that the ICF can help with in
terms of individuals moving through the stages of the Illness Constellation Model is in the recognition of personal factors. How an individual
deals with their illness or disability is perhaps dependent mostly on
them as a person, on the type of personality they have. In the ICF,

97

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Section 3 MODELS IN PRACTICE

personal factors are described as the particular background of the individual and may include gender, race, age, lifestyle, coping styles, character, etc. The way both Chan and Myrtle deal with their illness is
influenced by personal factors: being Chinese, Chan's culture makes it
difficult for him to accept the change of role that might occur as a result
of his stroke. Myrtle has always been a determined woman and can be
quite obstinate about things. This side of her personality occasionally
comes through when she becomes determined that she won't do as rehabilitation professionals ask. This determination and obstinacy is also
evident in her daughter Cassie.

CONCLUSION
The Illness Constellation Model enables rehabilitation professionals to focus
on health and wellness rather than illness. It gives professionals a framework with which to consider the illness experience for individuals and the
consequences of the different stages for rehabilitation. The Illness Constellation Model considers the experience not only for individuals but also for
their significant others. This category could also be used to include the
health-care team. The Illness Constellation Model could be used to complement the ICF in addressing the concept of control and mastery for individuals. These are two areas that are not explicit in the ICF.

QUESTIONS FOR DISCUSSION

- - - - - - - - - - - - - - - - - - _...
"'........,,---'~~~~-'(~jo;-""

'" What factors affect the illness experience for individuals in your
practice area?
How do the stages in the Illness Constellation Model apply to your
practice area?
@ What strategies do you use as a team to enable individuals to reach
stage 4 of the model?

References
Airlie J, Baker GA, Smith SJ 2001 Measuring the
impact of multiple sclerosis on psychosocial
functioning: the development of a new self-efficacy
scale. Clinical Rehabilitation 15:259-265
Bandura A 1997 Social learning theory. Prentice-Hall,
Englewood Cliffs, NJ
Burks KJ 1999 A nursing practice model for chronic
illness. Rehabilitation Nursing 24: 197-200
Burton CR 2000 Re-thinking stroke rehabilitation: the
Corbin and Strauss chronic illness trajectory
framework. Journal of Advanced Nursing 32: 59~02
Corbin JM, Strauss A 1991 A nursing model for chronic
illness management based upon the trajectory

framework. Scholarly Inquiry for Nursing Practice


5:155-174
Davis SM 1995 An investigation into nurses'
understanding of health education and health
promotion within a neuro-rehabilitation setting.
Journal of Advanced Nursing 21:951-959
Department of Health 2001 National service
framework for older people. HMSO, Norwich
Dorsett OS 1992 The trajectory of cancer recovery. In:
Woog P (I'd) The chronic illness trajectory
framework. Springer, New York
Hampton NZ 2004 Subjective well-being among
people with spinal cord injuries: the role of

Chapter 5 The Illness Constellation Model

self-efficacy, perceived social support, and


perceived health. Rehabilitation Counselling
Bulletin 48:31-37
Hawthorne MH 1991 Using the trajectory framework:
reconceptualising cardiac illness. Scholarly Inquiry
for Nursing Practice 5:185-195
Hwu YJ1995 The impact of chronic illness on patients.
Rehabilitation Nursing 20:221-225
Jarrett L 2000 Living with chronic illness: a transitional
model of coping. British Journal of Rehabilitation
7:40-44
King J 1984Your health in your hands. Nursing Times
80(44):51-52
Lazarus RS, Folkman S 1984 Stress, appraisal and
coping. Springer, New York
McGonigal GC 1998 Empowering health in chronic
illness: a conceptual model. British Journal of
Therapy and Rehabilitation 5:591-595
Miller CM 1993 Trajectory and empowerment theory
applied to care of patients with multiple sclerosis.
Journal of Neuroscience Nursing 25:343-348
Morse JM and Johnson JL 1991 The illness experience:
dimensions of suffering. Sage Publications,
Newbury Park, CA
Norman EJ, Norman VL 1991 Relationship of patient's
health locus of control beliefs to progress in
rehabilitation. Journal of Rehabilitation 57:27-30
Nosek MA, Hughes RB 2001 Psychospiritual aspects of
sense of self in women with physical disabilities.
Journal of Rehabilitation 67:20-25

Paterson J, Stewart J 2002 Adults with acquired brain


injury: perceptions of their social world.
Rehabilitation Nursing 27:13-18
Pizzi MA, Briggs R 2004 Occupational and physical
therapy in hospice: the facilitation of meaning,
quality of life and well-being. Topics in Geriatric
Rehabilitation 20:120-130
Putnam M, Geenan S, Powers L 2003 Health and
wellness: people with disabilities discuss barriers
and facilitators to well being. Journal of
Rehabilitation 69:37-45
Robinson LA, Bevil C, Arcangelo V et al1993
Operationalising the Corbin and Strauss trajectory
model for elderly clients with chronic illness.
Scholarly Inquiry for Nursing Practice 7:253-268
Sinclair A, Dickinson E 1998 Effective practice in
rehabilitation: evidence from systematic reviews.
KingsFund,London
Walker EA 1992 Shaping the course of a marathon:
using the trajectory framework for diabetes
mellitus. In Woog P (ed) The chronic illness
trajectory framework. Springer, New York
World Health Organization 2001 International
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health locus of control and cardiac rehabilitation to
mastery of illness-related stress. Journal of
Advanced Nursing 22:194-299

99

Chapter

101

From PLISSIT to Ex-PLISSIT


Sally Davis, Bridget Taylor

INTRODUCTION
The PLiSSIT model has been used across a wide range of different client
groups to consider clients' sexuality and sexual health-care needs. This
chapter will explore the use of the PLiSSIT model and will suggest an
extended model: Ex-PLISSIT. The aims of this chapter are to:
Consider the development of the PLISSIT model and its uses
Explore the limitations of the PLiSSIT model and describe the
Ex-PLISSIT model
Relate the Ex-PLISSIT model to the International Classification of
Functioning, Disability and Health and to rehabilitation
Apply the Ex-PLISSIT model to rehabilitation using a case study
Share examples from practice of the use of the PLiSSIT model
Identify a training programme to prepare rehabilitation professionals
in the use of the Ex-PLISSIT model.

THE PLiSSIT MODEL


PLI55IT is a model that was developed by Annon (1976), an American
psychosexual therapist. It was designed to assist health-care practitioners in their interventions with clients on issues of sexuality. The acronym
PLI55IT signifies the four levels of intervention: Permission (P), limited
information (LI), specific suggestion (55) and intensive therapy (IT). As
the level of intervention increases, greater knowledge, training and skills
are required (5eidl et al1991).

Levell: Permission for the client to express concerns regarding


sexuality
Level 2: Limited Information provided
Level 3: Specific Suggestions made
Level 4: Intensive Therapy given.

102

Section 3 MODELS IN PRACTICE


According to Annon (1976), most people experiencing sexual problems
can resolve them if they are given permission to be sexual, to desire sexual activity and to discuss sexuality, and if they receive limited information about sexual matters and specific suggestions about ways to address
sexual problems. Annon (1976) suggests that few people need intensive
therapy to resolve their sexual problems.
Practitioners are not expected to be able to function at all levels in all
situations (Annon 1976). It is important that practitioners recognise their
own strengths and limitations and, where necessary, refer clients on to
others who are more able to address an individual client's needs. In this
way, practitioners are encouraged to work within the limits of their own
comfort zone and competence.
The PLISSIT model is advocated by many authors and proposed as an
appropriate framework on which practitioners can base their interventions with clients. It has been recommended for use in pregnancy
(Alteneder & Hartzell 1997), following myocardial infarction (Seidl et al
1991) and spinal cord injury (Goddard 1988, Hodge 1995), as well as for
clients undergoing haemodialysis (Gender 1999). The PLISSIT model is
also promoted for use with individuals who have gynaecological conditions (jolley 2002) as well as cancer (Smith 1989, Smith & Babaian 1992),
multiple sclerosis (Nolan & Nolan 1998) and Hodgkin's disease (Cooley
et aI1986).
The PLISSIT model is used widely and has been adopted by organisations such as the Royal College of Nursing (RCN) and the British Association of Sex and Relationship Therapists (BASRT). The literature shows
extensive promotion of the PLISSIT model for use by nurses (Herson
et al 1999, Royal College of Nursing 2000) and occupational therapists
(Asrael 1985, McAlonan 1996). The model is by no means exclusive to
these professions, for it has benefit for all health- and social-care professionals.
Asrael (1985, p. 3) asserts that 'every occupational therapist who is
willing to regard the client as a human being has the skills and knowledge necessary to achieve the goals of the first two levels'. These skills
are not unique to occupational therapists: 'anyone in the helping professions, regardless of job title, can provide some level of sexuality information' (Herson et al 1999, p. 149). Indeed, all practitioners who
proclaim a holistic approach to care should address issues of sexuality
and sexual health.
Before discussing the model in more depth and proposing an extension of the model, we will first clarify the terms 'sexuality' and 'sexual
health'. The relevance of this model for all practitioners involved with
rehabilitation will be considered in more detail as this chapter unfolds.

Sexuality and sexual


health defined

It is a frequent misconception that sexuality is merely the expression of


a physiological drive, resulting in sexual activity (Northcott & Chard

2000). While sexual behaviour is an element of sexuality, it is only one


aspect. Sexuality is multifaceted (Hodge 1995), involving more than just
the biological and physiological components of sexual behaviour and
reproduction; it encompasses psychological and sociological aspects of

Chapter 6 From PLiSSIT to Ex-PLISSIT

how an individual relates to themselves and the world at large. The psychological aspects include a person's self-concept, self-esteem and body
image, while sociological aspects include any religious and cultural
factors and social roles (Meyer-Ruppel 1999).
Shope (1975, p. 3) suggests that sexuality involves, 'the total characteristics of an individual- social, personal and emotional- that are manifest in his or her relationships with others'. This is expressed in how we
dress, how we feel about ourselves, our relationships and how we
communicate with those around us (Medlar & Medlar 1990).
A similar definition is proposed by the Royal College of Nursing (2000,
p. i), which defines sexuality as: 'an individual's self-concept, shaped by
their personality and expressed as sexual feelings, attitudes, beliefs and
behaviours, expressed through a heterosexual, homosexual, bisexual or
transsexual orientation'. The need to identify differing sexual orientations
within this definition is an explicit demonstration of inclusivity, the need
for which results from the heterosexism that pervades our society.
Emphasising the all-pervading nature of sexuality, Stuart & Sundeen
(1979) write, 'Sexuality is an integral part of the whole person. Human
beings are sexual in every way, all the time. To a large extent human sexuality determines who we are. It is an integral factor in the uniqueness of
every person.' This notion of sexuality is supported by Couldrick (1998,
p. 493),who states that 'sexuality is an integral part of being human'.
Sexuality is a dynamic concept and is unique to each individual. An
individual's sexuality changes in response to maturational, physiological, social and psychological events. Similarly, a medical diagnosis or
admission to hospital will impinge on an individual's self-concept, selfesteem and social relationships. This in tum will affect their sexuality.
Recognising an individual's sexuality is an essential aspect of holistic
care. The reason for taking sexuality into account in health care is to
promote sexual health.
The World Health Organization (1975) defines sexual health as 'an
integration of somatic, emotional, intellectual and social aspects of sexual being, in ways that are positive, enriching, and that enhance personality, communication and love'.
The Royal College of Nursing (2000/ p. i) definition of sexual health is
not dissimilar: 'the physical, emotional, psychological, social and cultural well being of a person's sexual identity, and the capacity and freedom to enjoy and express sexuality without exploitation, oppression,
physical or emotional harm'.
Sexual health, therefore, is the freedom to express one's sexuality. Just
as health is a matter of perception, where each person defines health differently, sexual health is also subjective. To one person, sexual health
might mean freedom from infection; to another, sexual health is about
feeling comfortable and secure within a relationship. To someone else,
sexual health involves control of fertility; in terms either of preventing
unplanned pregnancies or of becoming a parent. Each individual's
notion of sexual health also changes over time. Sexuality and sexual
health, therefore, are individual to each person and are deeply integrated
in everyone's persona, clients and professionals alike.

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The relevance
of sexuality and sexual
health for rehabilitation

Laflin (1996a) argues that the role of practitioners working in rehabilitation is to maximise each client's potential, despite any physical or emotional impairment. Indeed, 'if sexual behaviour is integral to a person's
lifestyle, then part of rehabilitation is enabling the patient to adapt sexually' (Laflin 1996a, p. 367). Shell & Miller (1999, p. 53) are in agreement,
stating that if the practitioner neglects to consider sexuality and sexual
health as part of treatment and rehabilitation, this might result in the
patient feeling 'less than human'. Other authors agree with this assertion,
arguing that sexual health is a right (Wilson & McAndrew 2000) and that
sexual adjustment is of major importance to individuals recovering from
traumatic injury, disease or chronic illness (Miller 1984,Trombly 1989).
Many conditions can have an adverse effect on body image and selfworth, and have the potential to affect sexuality and sexual function.
These include, but are not limited to, spinal cord injury, stroke, head
injury, amputation, stomas, human immunodeficiency virus (HIV) infection, cancer, cardiac conditions, neurological conditions and even
pregnancy.
The Royal College of Nursing (2000, p. 2) describes sexuality and sexual health as 'an appropriate and legitimate area of nursing activity' and
does not restrict this assertion to any specific speciality. Similarly, Summerville & McKenna (1998, p. 275) state that 'sexuality education and
counselling fall within the realms of legitimate occupational therapy'.
Physiotherapists have a major role in the total rehabilitation process, and
this is considered to incorporate sexual rehabilitation (Evans et al 1976,
Summerville & McKenna 1998). Addressing issues relating to sexuality
and sexual health are not exclusive to these three professional groups.
While opinions vary in the literature as to the person best suited to
address sexuality and sexual health needs, it is clear that the literature
advocates a multidisciplinary approach (Evans et al 1976, Lemon 1993,
Royal College of Nursing 2000).
Pearson et al (1996, p. 79), attempting to provide guidance on this
important aspect of health, suggest that 'those aspects of sexuality relevant to the current need for nursing are explored'. The problem is,
who decides what is relevant? The practitioner does not make decisions
about what is relevant on behalf of the client in other aspects of rehabilitation. It is only through discussion and working in partnership
with the client that goals are established and action plans formulated.
The same should be true for issues relating to sexuality and sexual
health.
Research studies show that clients do not voice their concerns about
sexuality and sexual health because they feel vulnerable, shy and
ashamed to ask (McAlonan 1996) and would prefer the professional to
raise the subject first (Waterhouse 1996). In view of this, it becomes the
responsibility of the practitioner to initiate discussion. Any lack of
enquiry by the client should not be interpreted as a lack of concern about
sexuality and sexual health (McAlonan 1996, Herson et al 1999, Shell &
Miller 1999).The following sections provide guidance on how the practitioner can introduce the subject of sexuality and sexual health, and how
the PLISSIT model can be used in practice.

Chapter 6 From PLiSSIT to Ex-PLISSIT

Permission

----------

There is some confusion in both the literature and clinical practice about
the meaning of 'Permission' in the PLISSIT model. Some practitioners
interpret this as seeking permission or consent from the client to discuss
sexuality and sexual health issues. However, Annon (1976) was clear that
Permission is an activity undertaken by the professional. To prevent confusion, it may be easier to use the term 'Permission-giving' to denote this
first level of intervention.
Further confusion arises where authors define Permission as merely
'telling people that their thoughts, feelings and behaviours are normal' (Seidl et al1991, p. 262) or 'giving [the client] permission to be sexual' (Herson et al1999 p. 149).This is illustrated in the following extract:
'When Mrs Brown, who recently became paralysed, confides to her nurse
that she still has sexual feelings, her nurse assures her that it is perfectly
normal to continue to have sexual feelings, just like everyone else' (Herson et al1999, p. 149).
In this example, the nurse has indicated to the client that there is nothing abnormal about her feelings. Through normalising sexuality, the
nurse gives Permission for Mrs Brown to have sexual feelings. However,
Mrs Brown is not necessarily given the opportunity to talk further about
her sexuality. Permission-giving involves more than normalising sexuality, it also involves giving clients Permission to grieve for any loss (Summerville & McKenna 1998) and to discuss problems and concerns related
to sexuality and sexual health (Royal College of Nursing 2000).
Practitioners need not be concerned that they have insufficient knowledge to function at this level. Irwin (2000, p.364) stresses that 'often
patients will not expect the nurse to have the 'answer' to their problems
.. what a patient may require is the therapeutic space in which he or she
can try to understand his or her feelings'. This involves creating an environment in which the client is able to voice any concerns or problems
relating to their sexuality and sexual health. Privacy, dignity and safety
are essential elements. Practitioners also need good listening skills and to
be self-aware in order that they respect the values, beliefs and behaviour
of clients.
When discussing sexual matters with clients, Bor & Watts (1993, p.659)
provide clear guidance:

Be purposeful
Don't make assumptions
Don't stereotype
Ask questions
Don't judge people
Use the client's own words and language
Remain professional
Address relationships
Ask when you don't understand a term or activity
Address confidentiality, secrecy and privacy.

Pope (1997) recommends that sexual issues should be discussed in a


'matter of fact, non-judgmental way.' He argues that even a simple question such as 'Are you married?' indicates an assumption that all people

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ACTIVITY
How might you ask
about next of kin in an
inclusive way?
How might you ascertain
whether an individual is
sexually active?
How might you ascertain
the gender of an
individual's sexual
partner?

are heterosexually orientated, since marriage per se is currently almost


exclusively restricted by law to male-female couples. By adopting inclusive language, and recognising that sexuality and sexual health are relevant to everyone, practitioners should give Permission to clients to be
sexual beings and to voice any questions, concerns or issues that they
might have.
A frequent concern of health-care practitioners is the issue of timing.
When is the right time to raise issues of sexuality and sexual health?
Should it be done on admission, or is sexuality likely to be the last thing
on the person's mind? Should it be discussed when planning for
discharge, or left until after the individual has returned home?
A small-scale qualitative study by McAlonan (1996) explored the
client's perspective on sexual rehabilitation services following spinal
cord injury. Some individuals did think about the effects of their injury
on relationships, sexual activity and fertility soon after their injury.
However, all participants felt that they were not ready to address this
aspect of rehabilitation immediately, 'but wanted to know that the information would be there when they were ready' (McAlonan 1996, p. 830).
One approach to Permission-giving involves asking cue questions so
that individuals have the opportunity to raise any concerns they may
have.
'People with cancer often have concerns or questions about how this
will affect their sex life. Is there anything you'd like to ask me?'
'How has your incontinence affected the way you feel about
yourself?' 'Has it affected the way you feel about yourself as a
man/woman?'
'How is your relationship with your partner?' 'Has your condition
affected your relationship in any way?' 'Would you like to talk about
this?'
When asking questions such as these, the practitioner indicates to the
client that sexuality is an important and appropriate topic for discussion.
The practitioner also confirms that it is normal and appropriate to be sexual, to desire sexual activity and to discuss sexuality.
By giving the client Permission to discuss sexual issues, they are also
given the opportunity to decline. It is important, therefore, that the
practitioner is not intrusive and recognises any reluctance on the
client's part. A word of caution is needed here, as there is a danger that
the practitioner might interpret embarrassment and shyness as the
client not wishing to talk about sexual matters. Any reluctance that is
detected can be clarified with the question, 'Would you like to talk
about this?'
If the client does not wish to discuss sexuality or sexual health, it is
important to give them Permission to raise these issues at a later date.
'If you have any questions or concerns about sexuality later, do say
and I'll do my best to help.'

In this way, the door is left open; clients are able to remain in control and
make timely choices that best suit their needs.

Chapter 6 From PLiSSIT to Ex-PLISSIT

Friedman (1997) argues that Permission-giving should not be a one-off


occurrence, as the importance of sexual issues to a client will vary in
response to events such as after a home visit or before discharge. Therefore it is important that practitioners reiterate the Permission previously
given in order to emphasise that the door remains open.
The aspects of Permission-giving that have been discussed so far all
relate to the individual practitioner. However, White (2002, p. 249)
extends this notion when she refers to creating a 'climate of Permission',
which can occur at three key levels: the individual practitioner level, the
level of systems of care delivery and the organisational level.

Establishing a climate
of Permission at the
organisational level

At the organisational level, White (2002) advocates sensitivity in recognising the need for private space, both for discussions between practitioners and clients and for clients to express their sexuality. Sherman
(1999) cites an example that illustrates the importance of privacy in
residential settings:

The Masons are in their 70s and, up to the time Mr Mason was admitted
tothe nursing home, they enjoyed a satisfactory sex life. Then heshared a
room with three others and when Mrs Mason visited they walked together
or sat beside his bed. Visitors were embarrassed when they came upon
them ina passionate embrace. Moving Mr Mason into a single room gave
them opportunities to be together undisturbed. Both were noticeably less
stressed andhis advances tofemale staffbecame rare.
Sherman 1999, p. 99
Further organisational factors discussed by White (2002) that influence Permission-giving include the organisational culture. This influences the availability of resources such as leaflets that promote sexual
health, as well as reinforcing positive attitudes among staff.
A qualitative study conducted by Hitchcock & Wilson (1992) examined the factors influencing lesbian women to decide whether or not to
disclose their sexual orientation to health-care providers, and their experiences as a consequence. Generating a theoretical understanding of the
data, they suggest that individuals attempt to cope with the decision of
whether or not to disclose their sexual orientation to a health-care professional through a process of 'personal risking'. This involves maintaining a psychologically safe environment as free as possible from reprisals
and rejection.
The process of personal risking consists of two phases, the anticipatory and interactional phases. During the anticipatory phase, the risk of
self-disclosure is considered using both imaginative and cognitive strategies. The individual considers the recommendations of friends and the
particular health-care environment, and imagines the consequences of
'coming-out' to that health-care provider. In the interactional stage there
is constant monitoring of the health-care provider's responses, again
making use of both cognitive and emotional interpretation.
Understanding this process of personal risking is important for practitioners to identify ways to provide an environment in which it is
safe for gay men, lesbian women and bisexuals to disclose their sexual

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identity. There is a need for visible evidence of a tolerant environment
before individuals feel confident (Friedli 1989).Organisational strategies
that give Permission in these circumstances include the provision of gay
and lesbian literature and a space for sexual identity on forms, where so
often the assumption is heterosexual.
This process of personal risking is not only of relevance to sexual identity. Before individuals disclose any sensitive information relating to sexuality or sexual health to practitioners, they are likely to weigh up the
risks, based on both cognitive and emotional assessment. Individuals are
more likely to feel safe and confident discussing sexual issues if the environment contains visible acknowledgement of individuals as sexual
beings and acknowledges the need for privacy.

Establishing a climate
of permission in systems
of care delivery

It is important that systems of care delivery recognise and take into


account factors that might impact on sexuality or sexual expression
(White 2002). Permission-giving that takes place at the level of systems
of care delivery includes recognising the need for flexibility and building
this into packages of care. White (2002) gives the example of organising
personal care at a time that suits the patient if there are particular times
of day when sexual activity is easier or less tiring. Similarly, ensuring the
provision of a care package that includes personal care if a man's partner
finds that his feelings (e.g. when providing bowel care) intrude on their
sexual relationship.
The development of assessment documentation that includes sexuality and sexual health as a core component is a useful system to facilitate
Permission-giving. This inclusion enables practitioners to raise the topic
of sexuality with clients as an integral aspect of their care (White 2002).
It is, however, short-sighted to believe that, because sexuality is included
in an assessment format, this aspect of care will be adequately addressed.
Completed assessments that state 'likes to wear perfume' or 'married
with one child' under this section are likely to indicate discomfort on the
part of the practitioner and that this aspect of the assessment has not
been adequately discussed with the client, if at all.
Continuity of staff is another element of care delivery at the systems
level that may influence whether sexuality and sexual health issues are
addressed. White (2002) recognises that care systems that promote continuity of staff, such as key worker or primary nursing systems, may
strengthen relationships between practitioners and clients and may
therefore be more conducive to clients disclosing or discussing sensitive
issues. However, she also acknowledges that if a practitioner does not
have the knowledge or skills to address these issues, or feels uncomfortable doing so, then the opportunities available to any clients in their care
will be limited. White (2002) argues that staff must also be given Permission to discuss any discomfort or deficit in knowledge or skills with their
line manager or in supervision.

Limited information

Providing information on sexuality and sexual health are important


aspects of health care. 'Limited Information' refers to non-expert information (Royal College of Nursing 2000). However, in order to dispel

Chapter 6 From PUSSIT to Ex-PUSSIT

myths and misconceptions about sexuality (McAlonan 1996), the practitioner does require sufficient knowledge about the impact of the condition, the medication prescribed and clinical intervention upon sexual
wellbeing (White 2002). Limited Information may be given verbally, or in
the form of a leaflet. It may also be given on an individual basis, to
couples, or as part of a group process.
Both Hodge (1995) and Summerville & McKenna (1998) emphasise the
element of Permission when giving Limited Information, advocating
that the practitioner continue to convey Permission while providing
information. It is therefore important not to restrict the open lines of
communication that have begun at the Permission-giving level. This
would happen if a leaflet were merely given to the client to read. A more
helpful approach would be:
ACTIVITY
For your own area of
practice, identify the
following:
What is the effect of
the condition or
treatment on sexuality
and sexual health?
How mightyou share
this information with a
clientto normalise their
experience?
What client-information
literature is available
that addresses some of
these issues?
How might you respond
to a question that you
don't have the
knowledge to answer?

Specific suggestions

'There is a leaflet produced by the Stroke Association that talks about


having sex after a stroke. Would you like to have a look at it? Then if
you have any questions I would be happy to answer them.'
Using this approach, the practitioner can return to the topic at a later
date:
'How helpful was the leaflet I gave you in answering questions
about sexuality?'
'Was there anything that surprised you?'
'Do you have any further questions or concerns?'
A further example is a client who asks whether having an indwelling
catheter will mean she can't have sex. The practitioner who responds
appropriately would normalise the client's concern by stating that this
is a frequent concern of people with catheters and provide information
on how to manage the external devices at times of intimacy. Conveying information in this way responds to an individual's particular
concern.
The Limited Information provided here differs from the next level of
Specific Suggestion, as the Practitioner has not ascertained the client's
current preferred sexual practices or identified her specific goals. Hence
the general information that was provided was limited.
To operate at the level of Specific Suggestions, the practitioner requires
additional knowledge and skill (Royal College of Nursing 2000). The
practitioner needs to take a sexual history and identify not only the problems but also the aspirations and expectations of the client (Seidl et al
1991). This level is based upon a problem-solving approach to address an
individual's particular problem (Spica 1989).
Examples of Specific Suggestions include conception advice and the
use of lubrication, sexual aids, contraception and alternative positions
for sexual activity. The practitioner who has ascertained a client's concerns about sexual intercourse, for example, may provide advice on comfortable positions for sex for someone who has leg spasm as a
consequence of multiple sclerosis, or is recovering from a stroke. This
discussion may take place with or without the partner being present.

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It is important to note that Specific Suggestions do not relate solely to


sexual behaviour. As with all the levels of PLISSIT, all aspects of sexuality and sexual health are addressed. A client who says she is frightened
that her partner will no longer find her attractive (since her surgery) may
also be referring to her own sense of loss. The practitioner will need to
assess how the woman herself perceives femininity and attractiveness,
and how she displays this (perhaps through clothes, perfume, make-up,
her hairstyle, etc.). Specific Suggestions will include discussion of those
aspects that have meaning to this particular client and may result in
referral for specialist intervention if the client is depressed as a result of
this change in body image.

Intensive therapy

The most advanced level of PLISSITrequires specialist intervention as it


involves complex interpersonal and psychological issues (Royal College
of Nursing 2000). Laflin (1996b) and Herson et al (1999) recognise that
specialist intervention is not only required to address relational or psychosexual issues but may also be required to address physical needs.
Hence clients may require referral to a urologist or gynaecologist or may
require relationship or psychosexual therapy.
Specific discussion of Intensive Therapy is beyond the scope of this
chapter. It is important, however, that all practitioners are aware of
sources of Intensive Therapy and are able to refer clients on. A selection
of useful contact details is listed at the end of the chapter.

Limitations of PliSSIT

The linear format of the PLISSIT model implies a progression from one
level to the next and does not recognise that a practitioner might need to
return to previously addressed levels. This could result in practitioners
feeling that they have addressed sexuality and sexual health once they
have provided Limited Information. For example, when a practitioner
informs a client who has joint or back pain that taking analgesia before
any sexual activity would ensure optimum relief (Peate 2004) and might
increase sexual participation (Laflin 1996b), the practitioner is implicitly
indicating their own acceptance of sexual activity. This in itself is beneficial, as it gives the client Permission to be sexual and desire sexual activity. The client may be sufficiently reassured by this to feel able to voice
their concerns. However, this is not a guarantee - the client may be
uncertain whether it is appropriate to talk to this particular practitioner
about their specific concerns. Unless practitioners give individuals Permission to talk about sexuality or sexual health and discuss their concerns, clients will remain uncertain. Implicit Permission-giving is
inadequate, as individuals who feel embarrassed discussing sensitive
issues will remain uncertain about the appropriateness of voicing their
concerns. Permission-giving needs to be both explicit and unambiguous.
There is a further limitation of the PLISSIT model that is due to its linear format. Once practitioners have asked clients if they have any concerns
or questions about how their condition will impact on their sexuality and
sexual health, and given Permission to raise these concerns at any time, it
would be easy to 'tick the box' and not return to sexual health issues
again unless the client raises them. The danger here is that practitioners

Chapter 6 From PLiSSIT to Ex-PLISSIT

might feel that, since they have given Permission once, the client will be
able to raise any further issues or concerns as they arise. This can result
in the assumption that a lack of enquiry by the client indicates a lack of
concern about sexuality and sexual health.
The PLISSIT model implies a one-way interaction in which the client
is a passive recipient of a practitioner's interventions. While this was not
Annon's (1976) intention, the practitioner may believe that they have
given a client Permission and given Limited Information, yet without
providing clients with an opportunity to engage in discussion and
review the usefulness and appropriateness of the information given, this
intervention is ineffective in meeting an individual's needs.

THE EX-PLISSIT MODEL


The Ex-PLISSIT model that is proposed here is an extension of the original PLISSIT model. White (2002) suggests that the four levels of intervention in the PLISSIT model are interconnected, although provides no
further detail. The Ex-PLISSIT model develops this idea of interconnection further and consists of stages that can occur in any order (Fig. 6.1).
Given the attention we have paid so far to the level of Permission, it is
perhaps unsurprising that each petal in the Ex-PLISSIT model has

Figure 6.1 The Ex-PLISSIT


model promotes a comprehensive learning cycle of reflection
and review, challenging
assumptions in order to
develop knowledge and
self-awareness

Ex-PLISSIT
(Extended PLiSSIT Model)

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Section 3 MODElS IN PRACTICE

ACTIVITY
Mr Khan is in a cardiac
unit, recovering from a
heart attack. His named
nurse has been discussing
discharge arrangements
and giving advice about
exercise.
The nurse gives him
Permission to discuss issues
relating to sexual health by
saying, 'Do you have any
questions or concerns
about sexual activity when
you go home?'
Mr Khan appears
relieved and says 'Will it
do any harm?'
The nurse provides a
leaflet that provides
information and
reassurance about sexual
activity following
myocardial infarction and
feels pleased that she has
overcome her
embarrassment and
identified a problem that
was quick and easy to
address.
However:
Is the client satisfied
with the response?
Has the leaflet
answered all his
questions?
What are the range of
issues and concerns
that this client might
potentially have?
How mightthese be
ascertained?

Permission-giving at its core. All interventions should begin with Permission, so each stage of Limited Information, Specific Suggestions and Intensive Therapy is underpinned by Permission-giving. It is important that
practitioners maintain open lines of communication at all times so that
clients feels able to raise any questions or concerns that they might have.
Unless the Permission-giving level is addressed first, the information
that is given will be general and will not address the specific needs or
concerns of the individual. For example, if the Limited Information given
to a woman receiving radiotherapy focused on vaginal dryness, it would
not meet the needs of a woman who regularly practised anal intercourse.
The information that is given needs to be of relevance to the individual
and the practitioner cannot assume that individuals will feel able to disclose all their issues and concerns at once. It is essential, therefore, that
practitioners provide information that is inclusive and not restricted to
assumptions made about the client's sexual preferences.
As stated previously, it is insufficient to provide a client with Limited
Information without also providing an opportunity to review the usefulness and appropriateness of the information given. Meyer-Ruppel (1999)
stresses that practitioners should not assume that once the topic has been
discussed sexuality has been addressed and the issue is ended, for sexuality is a dynamic concept and issues will change in response to changes
in physical, social and psychological circumstances. Integral within each
stage of the Ex-PLISSIT model, therefore, are the principles of reflection
and evaluation (review). These are made explicit at each stage.
In the example given, providing a client with a leaflet that contains information about sexual intercourse following a heart attack will not address
concerns about a whole range of other issues such as masturbation, oral sex
and current difficulties in maintaining an erection, to name but a few.
It is essential that practitioners reflect on their interactions and review
the effectiveness of their interventions with clients. This process of
review incorporates further Permission-giving as the client is given further opportunities to voice any issues that they might have. This can be
done in the following way:
'How helpful was the leaflet I gave you in answering your questions
about sexuality?'
'Was there anything that surprised you?'
'Do you have any further questions or concerns?'
This notion of on-going Permission-giving is not entirely new. MeyerRuppel (1999) encourages nurses working in gynae-oncology to consider
questions about sexual health as routine, so that they are integral within
the reassessment phase of each subsequent appointment. She does not
refer to this questioning as Permission-giving as such, but it inevitably is.
Research indicates that practitioners believe that sexual rehabilitation
is an essential aspect of rehabilitation; however, only a minority feel comfortable in discussing and addressing sexual issues (Ducharme & Gill
1990,Katz & Aloni 1999, Haboubi & Lincoln 2003). This conflict between
practitioners' ideology and practice is indicative of the discomfort that
many feel in discussing sexuality and sexual health.

Chapter 6 From PlISSIT to Ex-PlISSIT

ACTIVITY
Identify other ways in which
you can give clients
Permission to raise the topic
of sexuality and sexual
health at a later date.

Herson et al (1999, p. 149) argue that the most important quality a


practitioner needs in addressing sexual health issues is 'personal comfort
regarding sexuality and disability'. Hodge (1995) suggests that Permission also involves giving the practitioner Permission to refer the client on
to another professional. This recognition that individual practitioners are
not required to function at all levels is a strength of PLISSIT, ensuring
that practitioners operate within their own level of comfort. However,
unless reflection and review are undertaken, which enhance knowledge,
challenge assumptions and increase self-awareness, practitioners will
not progress or develop. These elements of reflection and review are
integral to the Ex-PLISSIT model, ensuring ongoing learning and development.
Reflection and self-awareness are key components of effective interactions with clients. To achieve a level of personal comfort, Laflin (1996b)
encourages practitioners to examine their own attitudes and beliefs in
order to be able to provide sexual information in a non-judgemental way.
Research undertaken with individuals who have a spinal cord injury
identified qualities of health-care practitioners that influenced their own
receptiveness, confidence, the amount of disclosure and level of satisfaction with sexuality information received during rehabilitation (McAlonan 1996). One participant described his experience with a nurse
practitioner: '[She] was very good ... easy to talk to ... [with her], it's no
big deal, it's part of life, same as bowel care, bladder care, something you
have to deal with '(McAlonan 1996,p. 829).
Approachability, empathy, willingness to listen and an adequate comfort level are the qualities described by McAlonan (1996) as essential.
In the PLISSIT model, Summerville & McKenna (1998,p. 278) indicate
that Intensive Therapy is provided 'when intervention via the lower
three levels has not been effective'. The Ex-PLISSIT model indicates that
Intensive Therapy may be offered at any stage. For example, a client may
be given Permission to discuss sexuality through the provision of limited Information:
'Are you aware that impotence is a side effect of these tablets?'
The client may respond by stating that he has been impotent for some
time, even before he began taking these tablets. If he wishes to address
this problem, it would be appropriate to refer him for further assessment
without first passing through the stage of Specific Suggestions.
Similarly, if having given the client Permission, the practitioner is
challenged with something they feel completely unable to deal with,
then it should be possible for them to suggest referral to Intensive Therapy without passing through the other stages first.

Applications for use

While the PLISSIT model was originally developed to address issues


in relation to sexuality and sexual health, there is no reason why it
cannot be used for other aspects of health and social care provision.
Similarly, we would advocate using the Ex-PLISSIT model when
addressing other sensitive areas such as issues of loss and adaptation
in rehabilitation.

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REHABILITATION
This section will consider in more detail the implications of the Ex-PLISSIT model for rehabilitation practitioners. As already discussed, the
PLISSIT model has been used extensively in the literature and in practice
to address the sexuality and sexual health needs of clients. Although
there is possibly a use for it in dealing with other sensitive areas, there is
a real issue with clients' sexuality and sexual health-care needs not being
addressed adequately in rehabilitation. This section will therefore discuss the use of the Ex-PLISSIT model in addressing a client's sexuality
and sexual health needs in rehabilitation.
When thinking about terminology it is useful to consider whether
there is a more encompassing term that can be used when considering a
client's sexuality and sexual health needs in rehabilitation. In 2004, a
working party at the regional brain injury unit at Northwick Park Hospital considered clients' sexuality and sexual health-care needs and
agreed on the term 'sexual wellbeing' as being conducive to the concept
of rehabilitation. Wellbeing can be identified as encompassing all those
domains that make up a 'good life'. These include physical, mental and
social aspects (World Health Organization 2001). Wellbeing can also be
about how one is feeling and can be equated to a high level of selfesteem.
When considering health promotion and rehabilitation, Davis (1999)
identifies that clients going through the rehabilitation process generally
have low self-esteem because of their loss of control of their lives and
that ultimately rehabilitation should therefore be aiming to increase
their level of control and ultimately their level of wellbeing. Being more
specific in using the term 'sexual wellbeing' may help to ensure that sexuality and sexual health care are addressed explicitly, at the same time
putting it in the context of wellbeing generally for each individual. Sexual wellbeing fits in well with the notion of rehabilitation being concerned with the totality of the person with the ultimate aim of
maximising an individual's quality of life. For this section of the chapter the term sexual wellbeing will be used to encompass sexuality and
sexual health-care needs for clients going through the rehabilitation
process.

ICF or International
Classification
of Functioning.
Disability and Health

The link between the Ex-PLISSIT model and the ICF is that Ex-PLISSIT
as an intervention model is an ideal framework to address some of the
more sensitive areas that are identified in the ICF (World Health Organization 2001). Sexual wellbeing, which has been the focus of the PLISSIT
model in the literature, is acknowledged in the ICF in terms of contextual
factors as well as functioning and disability. The ICF identifies different
categories that relate to sexual wellbeing (Box6.1).
One of the strengths of the ICF is its comprehensive inclusion of a
number of areas that contribute to an individual's wellbeing. In including the above categories it has acknowledged the integral part sexuality
and sexual health play for an individual. It considers issues of sexual
wellbeing in terms of:

Chapter 6 From PLiSSIT to Ex-PLISSIT

Box 6.1

ICF Categories Related to Sexual Wellbeing

Body Functions

Chapter 1: Mental function; Chapter 6: Genitourinary


and reproductive functions.
b1801: 'Body Image: Specific mental functions related to
the representation and awareness of one's own body' (p. 61)
b6400: 'Functions of sexual arousal phase: functions of
sexual interest and excitement' (p. 90)
b6401: 'Functions of sexual preparatory phase:
functions of engaging in sexual intercourse' (p. 90)
b6402: 'Functions of orgasmic phase: functions of
reaching orgasm' (p. 90)
b6403; 'Functions of sexual resolution phase: functions
of satisfaction after orgasm and accompanying relaxation'
(p.91)
Activities and Participation

Chapter 7: Interpersonal interactions and relationships


d7100: 'Respect and warmth in relationships: showing and
responding to consideration and esteem, in a contextually
and socially appropriate manner' (p. 159)
d7105: 'Physical contact in relationships: making and
responding to bodily contact with others, in a

contextually and socially appropriate manner' (p. 159)


d7702: 'Sexual relationships: creating and maintaining a
relationship of a sexual nature, with a spouse or other
partner' (p. 163)
Environmental Factors

Chapter 4: Attitudes
e450: 'Individual attitudes of health professionals: general
or specific opinions and beliefs of health care professionals
about the person or about other matters (e.g. social,
political and economic issues) that influence individual
behaviour and actions' (p. 191)
e465: 'Social norms, practice and ideologies: customs,
practices, rules and abstract systems of values and
normative beliefs (e.g. ideologies, normative world views
and moral philosophies) that arise within social contexts
and that affect or create societal and individual practices
and behaviours, such associal norms of moral and religious
behaviour or etiquette; religious doctrine and resulting
norms and practices; norms governing rituals or social
gatherings' (p. 191)

Body image: the way individuals feel about their body and the

awareness they have of their own body. The ICF doesn't categorise
self-image or self-concept
Physical functions related to the sexual act: The phases of the act are
highlighted, from arousal to resolution. Categorising physical functions
in this way can perhaps help clients and rehabilitation professionals feel
more comfortable in acknowledging that the sexual act is a legitimate
function
Interpersonal interactions and relationships: The ICF categorises a
number of different personal interactions in different contexts that
include formal relationships, informal social relationships, family
relationships and intimate relationships. This highlights the
importance of relationships in a variety of contexts for an individual's
wellbeing
Attitudes: As already mentioned earlier on in this chapter, attitudes,
values and beliefs all play an important part in the way clients' sexual
wellbeing needs are met by health-care professionals. The ICF
categorises attitudes in terms of individuals, friends, acquaintances,
health-care professionals, personal care providers and personal
assistants. It also identifies the importance of social norms and practices.
The ICF in its identification of categories that relate to an individual's
sexual wellbeing could be used to structure rehabilitation professionals'

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Section 3 MODElS IN PRACTICE

interventions at the different stages in the Ex-PLISSIT model. The ICF


categories could be used as cues for rehabilitation professionals to ensure
that they are considering an individual's sexual wellbeing. For example,
the different categories around relationships could be used as a guide to
ensure that these are considered. These may need to be considered at all
stages.
The ICF categories could be used to develop an assessment tool that
could be used at each stage. Using the ICF and the Ex-PLISSIT model
to complement each other could enable the rehabilitation team to identify categories they need to consider in relation to a client's sexual
wellbeing. Team members could then identify the stage of the ExPLISSIT model they feel comfortable with rather than thinking that
they need individually to address all categories. Using both models
together could help promote a team approach rather than the team
considering clients' sexual wellbeing to be the province of one professional group.
The Ex-PLISSIT model identifies that, although the process needs to
start at the Permission-giving stage, Intensive Therapy can be offered at
any stage. The model embeds the whole process within a learning cycle
of reflection and review that highlights the need for the team to reflect
and review as a team as well as individually.

The role of the team

Interprofessional working is fundamental in rehabilitation whether the


team approach is multi-disciplinary or inter-disciplinary. The focus
needs to be on goals the clients have themselves identified as being
important to them. As already highlighted it is important that addressing clients' sexual wellbeing is seen as the role of the whole team. The ExPLISSIT model with its focus on levels of intervention can be used to
help the team identify how they can best work together. In this section a
case study identified initially in chapter two will be used to illustrate
how this might work in practice.

CASE STUDY JOEY


Joey is a 50 year old single unemployed man who
lives with his partner, John. Joey is in hospital
recovering from a heart attack. Before the heart
attack Joey led generally a sedentary lifestyle, going
out only to go to the shops. His relationship with
John was strong and they had an active sexual relationship. The team are now preparing for Joey to be
discharged. Joey is very anxious about this and worried about his relationship with John. He feels that
John doesn't find him attractive any more.
The team have been discussing Joey's discharge
plans and have identified hisanxiety about going
home. One of the nurses has noticed that Joey is

quite abrupt with John and won't let him touch


him. The team discuss whether there may be some
issues for Joey in terms of his relationship with
John. Some of the team express their anxieties at
having to discuss this with John and question
whether it is their role. There is some general discussion, facilitated by Mary, the clinical specialist
nurse, who does address sexual wellbeing with
clients. This leads to the team reflecting on their
role and results in them agreeing that Joey needs to
feel that he can discuss his anxieties in terms of his
relationship with John. He needs 'Permission' to do
this. There is some discussion about whether this

Chapter 6 From PLiSSIT to Ex-PLISSIT

should include John, but it is felt that Joey needs to


have the opportunity to discuss his concerns first.
Involving John at this stage without Joey's consent
could cause irreparable damage. Some members
feel that Mary should address this with Joey, but
Mary feels that, although she knows Joey, she has
had limited contact with him. Sheila, the occupational therapist, has already organised a meeting
with Joey to discuss his home situation in light of
his discharge. She feels comfortable about raising
the issue of sexuality with Joey.
In this meeting, which is held in a private office,
Sheila asks Joey if he has any concerns over his
relationship with John when he goes home. Joey
then begins to talk about his feelings of unattractiveness and the fact that John won't physically
touch him. Sheila is able to use cue questions and
prompts to encourage Joey to discuss hisfeelings.
As the meeting progresses she is also able to ask
Joey specifically about sexual activity with John. At
this pointJoey feels comfortable with expressing
his worries about this side of his and John's relationship. Sheila is able to reassure Joey that what
he is feeling is a normal reaction to his heart
attack.
However, Sheila recognises that Joey would benefit from more explicit Information and Specific
Suggestions about sexual activity after a heart
attack. She feels that she doesn't have the knowledge to deal with this aspect, so she asks Joey if he
would feel comfortable talking about these issues
with Mary, who has more experience in this area.
Sheila offers to sit in with Joey if he wants. Joey
agrees to this.

In order to increase Joey's self-esteem, Sheila also


negotiates with him some activities in hisoccupational therapy sessions that involve him socialising
with other people. Sheila suggests to Joey that he
might like to have clothes brought in from home,
which he could wear on the ward, and that she could
arrange for him to have hishaircut if he wants that.
Sheila also suggests that Joey might like to have
some quiet time with John before discharge bygoing
out from the ward with John.
At the meeting with Mary and Sheila, Mary is
able to give Joey some Specific Suggestions about
resuming sexual activity after the heart attack. She
also gives Joey a leafletthat reinforces what she
has said. Mary suggests that Joey might like to
show the leafletto John and that she will be happy
to talk to both of them. Joey agrees to this and asks
if Sheila will tell John about their meeting and the
subsequent meeting with Mary. Sheila agrees to do
this with Joey present. Sheila fells that it will be
useful to feed back generally to the team and she
gets consent from Joey to do this.
At the nextteam meeting the team reflects on
whether theycould have given Joey Permission earlier to discuss his concerns. Sheila's experience with
Joey enables herand the team to reflect on how
they address clients' sexual wellbeing. They realise
that, although they do have leaflets on display they
don't prompt clients to read them or follow them
up with discussion. The team also identifies that in
the past they have perhaps tended to rely on Mary
to address clients' sexual wellbeing, whereas she
may not always be the appropriate person for the
initial meeting.

It is useful to consider the case study of Joey in terms of the stages of


the Ex-PLISSIT model and how they occurred.

Stage 1: Permissiongiving

In the above example, the different stages can clearly be seen. If the nurse
had not picked up on Joey's anxiety and discussed it at a team meeting
then Joey could have been discharged without discussing his anxieties.
The fact that the team had regular team meetings and obviously felt comfortable with each other enabled members of the team to express their
anxieties without feeling they were being judged. This is also Permission-giving for the team and is vital if the team are to reflect, evaluate
and develop self-awareness. Sheila identified the stage she felt

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Section 3 MODELS IN PRACTICE


comfortable with and perhaps the reason she felt comfortable to address
the issues with Joey was because she saw it as a natural element of discharge planning. The way Sheila brought in the topic gave Joey Permission to discuss it. Joey was also able to see that it was important to
discuss in terms of going home. Because Sheila discussed the subject in
relation to going home it was discussed in context.
Stage 2: Limited
Information

Limited Information was given to Joey verbally when Sheila explained


what could be expected following a heart attack. Sheila was going to give
Joey a leaflet to read but, because of Joey's anxieties, she felt that it might
increase them. On reflection, Sheila decided that it would be more useful
for Joey to talk to Mary and for Mary to give him written information. As
Joey was discussing his sexual wellbeing with Sheila, she was constantly
giving him Permission to discuss more intimate issues, i.e. his sexual
activity.

Stage 3: Specific
Suggestions

Sheila made Specific Suggestions regarding Joey's feelings of unattractiveness. Sheila recognised that Joey's main anxiety was about John not
wanting him any more and not finding him attractive. By suggesting
opportunities for increased social interactions and suggesting ways for
Joey to feel more comfortable with his image, e.g. wearing his own
clothes, having his hair cut, Sheila anticipated that these might help to
increase joey's confidence in himself.
During the meeting with Mary, Mary took a sexual history from Joey
that was based on the categories in the ICE This meant that she covered
sexual functions, relationships and attitudes. This enabled her to identify
Joey's current sexual practices, his aspirations and expectations. By
doing this she was able to identify what the problems were for Joey. As
a result of this Mary gave Joey Specific Suggestions based on the current
literature on sexual activity after a heart attack. For example, anal intercourse can have an impact on coronary health in the recovery period due
to stimulation of the vagus nerve, which may cause chest pain (McCann
1989, cited in Crumlish 2004). Mary suggested to Joey that, even though
it would be safer not to have anal sexual intercourse while he was recovering, he could still participate in other sexual activities. Mary was also
able to reduce Joey's anxieties about positions for sexual activity, as he
had heard that it was better after a heart attack to sit on a chair for sexual intercourse. Mary was able to reassure him that evidence had now
shown that this is not the case (Crumlish 2004).Any position was fine as
long as it was comfortable for him and John.

Stage 2: Limited
Information

Mary gave Joey a leaflet, which could be seen as giving Limited Information, but she used it to reinforce her Specific Suggestions. Mary also
used the leaflet as a way for Joey to involve John in the discussion.

Stage 1: Permissiongiving

Again during stage 3, when Mary gave information and Specific Suggestions she was giving Joey Permission to ask quite intimate questions.
The leaflet can also be seen as a way for Joey to give John Permission to
discuss his concerns.

Chapter 6 From PLiSSIT to Ex-PLISSIT

Stage 3: Specific
Suggestions

In the subsequent meeting with Joey and John, Mary repeated the specific advice and Specific Suggestions she had already talked to Joey
about.

Stage 4: Intensive
Therapy

One of the actions that might come out of the meeting with Joey, John
and Mary is for Mary to make Joey and John aware that there is more
intensive counselling available if they would like it. Joey might find
counselling useful in terms of his relationship with John or in terms of
his own feelings about feeling unattractive. This referral may not be
made until Joey has been home for a while, as the issue may not become
evident until then. Mary or Sheila could continue to act as a link after
Joey goes home.

Learning cycle

In terms of the learning cycle, which is a vital element of the Ex-PLISSIT


model, it is apparent that Sheila reflected on the information she was getting from Joey and that it was this reflection that directed her actions. The
team were able to challenge and discuss their own assumptions at that
first team meeting and also to reflect on and evaluate their subsequent
interactions with Joey. As a result, they identified some actions that they
could take in terms of creating Permission for clients. If sexual wellbeing
for clients is to be an integral element of rehabilitation then it is vital that
this learning cycle takes place.
The example of Joey illustrates the importance of the whole team
being involved in meeting a client's sexual wellbeing. Mary used the ICF
to assess Joey's sexual wellbeing; however, the team could also use the
categories to enable them to consider clients' sexual wellbeing more consistently. The above example also highlights how the level of Permission
is an integral element of each stage.

Issues to consider

There are a number of specific issues that arise from the case study that
need to be considered when using the Ex-PLISSIT model in relation to
rehabilitation. These are also supported by research studies considering
the sexual wellbeing of different client groups. Table 6.1 gives a brief
overview of some of these studies. Although these studies are all limited
in terms of their generalisability - for example, they use small numbers
of participants - they do come up with similar findings and implications
for using the Ex-PLISSIT model.

Privacy

Mayers & Heller (2003) make the point that the degree of privacy may
dictate the level clients can progress to. Sheila and Mary considered carefully where their meetings should take place and they planned them so
that they wouldn't be disturbed. Privacy is an issue for all stages of the
Ex-PLISSIT model.

Gender

One issue to consider at all stages is the importance the client places on
their gender role. Guttman and Napier-Klemic (1995) found that men
may feel inadequate if they are unable to resume their role as a man. This
wasn't an issue raised explicitly by Joey but it is perhaps important for
rehabilitation professionals to consider that this may be an issue. It may

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Section 3 MODELS IN PRACTICE

Table 6.1

Research studies and their link to the Ex-PLISSIT model

Sample and Aim

Findings

links to Ex-PLISSIT

Guttman Et Napier-Klemic 1995The experience of head injury on the impairment of gender identity and gender role
Two males and two females. Aim: to
examine the disruption of gender
identity and gender role as a result of
traumatic brain injury

The men relied more heavily


on traditional gender-specific
activities before and after
injuryto define themselves as
a man; they expressed feelings
of inadequacy if they were
unable to resume these
activities

Highlights the importance of considering


how individuals see themselves in terms of
their gender. This may have implications for
who individuals will feel comfortable with in
terms of discussing their sexual wellbeing

Mayers Et Heller 2003 Sexuality and the late-stage Huntington's disease patient
Four males and five females in a
residential care home. Aim: to identify
any sexual issues and individuals'
perceptions of their ultimate and
sexual relationships

Caregivers need to recognise


that patients are sexual beings
with sexual needs, fantasies and
wishes byproviding: privacy;
sexually orientated videos or
reading materials; romance
novels or films; the means
for individuals to stimulate
themselves

Supports the need for privacy which is a


prerequisite for all levels. The degree of
privacy in a care home situation may dictate
the level patients can progress to. Supports
the use of providing sexually related material
and sexual aids which relates to stage 3

Westgren Et Levi 1999 Sexuality after injury: interviews with women after traumatic spinal cord injury
Eight women. Aim: to illuminate the
women's sexual experiences. Explored:
first sexual contact after injury;
communication with partner before
and after injury; sexual activityafter
injury

Strong influence of pre-injury


sexual behaviour on post-injury
adaptation. A positive outlook
and good communication
skills were linked to a favourable
rehabilitation outcome

Supported the need for psychological support


and practical advice afterdischarge. This
highlights the need for stage 3, where
practical advice would be given, and
stage 4, where more specialist support is
required

Mona et al 2000 Sexual expression following spinal cord injury


109 men and 86 women. Aim: to
explore sexual adjustment through
cognitive adaptation theory

Rehabilitation professionals can


provide better treatment
planning and interventions if
they have a deeper
understanding of the
psychological variables
associated with positive
adjustment

Treatment suggestions included giving


patients permission to talk about sexuality;
normalising the experience for patients;
giving information; referring patients on.
These all relate to all stages in Ex-PLISSIT

Edmans 1998 An investigation of stroke patients resuming sexual activity


Six males, sixfemales, nine partners.
Aim: to identify whether they had
been able to resume theirsexual
activity and what information
they would find useful

Lack of interest/motivation,
physical difficulties and
difficulties in arousal identified
as the main problems faced
bythe participants in relation
to rehabilitation

Highlights the importance of the stages of


Permission-giving and Limited Information.
The participants wanted information when
they started to spend time at home at
weekends and before discharge

Chapter 6 From PLISSIT to Ex-PLISSIT

Findings

Sample and Aim

Links to Ex-PLISSIT

Taleporos a McCabe 2002 The impact of sexual esteem. body esteem. and sexual satisfaction on psychological wellbeing in people with physical disability
A comparison of 748 participants with
a physical disability and 448 without.
Aim: to compare sexual well-being
with psychological well being

Sexual esteem, body esteem,


and sexual satisfaction are
strong predictors of self-esteem
and depression for people
with a physical disability.
Body esteem more associated
with women and sexual
esteem with men

Identifies the need for the identification of


strategies to improve the body esteem and
sexual wellbeing of people with physical
disabilities

also be an issue for women, in terms of not being able to resume their
role as a partner/ mother.

Normalising the
experience

Mona et al (2000) talk about normalising the experience for patients.


Sheila did this with Joey by reassuring him that what he was feeling was
a normal reaction following a heart attack. It is important for clients to
see that problems they may have regarding their sexual wellbeing are
not abnormal and that other clients have similar issues. This needs to
happen in stage 1, as it is a way of creating Permission for clients to discuss their sexual wellbeing.

Providing sexual aids

Mayers & Heller (2003) talk about using sexually-related videos and
reading material as well as sexual aids. Giving practical suggestions is
also supported by Westgren & Levi (1999). This reinforces stage 3, giving
SpecificSuggestions, a stage that not all rehabilitation professionals may
feel comfortable with. Sheila identified that she didn't feel comfortable at
stage 3 because of her lack of knowledge, which is why she involved
Mary. In rehabilitation, the provision of aids of daily living is a key feature for some clients; perhaps this should include the provision of sexual
aids, if that is identified as a need for a client's sexual wellbeing.

Context

In Edmans' (1998) study, participants wanted information when they

started to spend time at home. Joey felt comfortable discussing issues


with Sheila because he could see how it related to him being discharged.
This highlights the importance of discussing clients' sexual wellbeing in
context and that is why it is vital that it is a team endeavour. Examples
of this are:
Nurses discussing sexual activity when discussing continence with a
client
Physiotherapists discussing positions for sex when discussing
sleeping positions
Occupational therapists discussing body image when talking about
washing and dressing

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Section 3 MODELS IN PRACTICE


Doctors and nurses discussing the effects of medication on a client's
sexual wellbeing - although this can be seen as a stage 2
intervention, as it is giving information, it may also open the way for
more in-depth discussion that not all professionals would feel
comfortable with
The team discussing sleeping arrangements when conducting a
home visit and exploring the effects of this on a client's relationship.
This may result in suggestions of exploring alternative methods of
achieving sexual satisfaction.
It can make it more difficult for the rehabilitation professional and the
client if it feels like a special time has been arranged to discuss sexual
issues, although this may be appropriate if it is an agreed arrangement
from a previous meeting. Discussing sexual wellbeing in context will
have an effect on the level of comfortableness for the client and the rehabilitation professional and can be seen as contributing to stage 1:
Permission-giving.

Developing strategies

Taleporos & McCabe (2002) identify the importance of health-care professionals developing strategies to improve clients' body image and
self-esteem. This was a major issue for Joey in that he felt unattractive
and insecure. Sheila was able to identify strategies that would
help him.
The studies in Table 6.1 and the case study of Joey reinforce the stages
of Ex-PLISSIT and the need for reflection and review. They also highlight
the importance of using an interprofessional approach to address clients'
sexual wellbeing. None of the studies indicated that this was the role of
a specific professional group.

Examples from practice

The following two accounts are examples of how the PLISSIT model is
being used in rehabilitation settings.

Example 1: Sexual
wellbeing policy and
guidelines

This policy was developed in 2004 by J. Johnson, J. Thrilling, J. Gregory


and F. Gawn in the Regional Rehabilitation Unit at Northwick Park Hospital in response to the rehabilitation professionals wanting to improve
practice with regards to clients' sexual wellbeing. A working party was
formed, and agreed on the term 'sexual wellbeing' for reasons discussed
earlier in this chapter. The unit's policy covers:
The unit's philosophy that sexual wellbeing is an important aspect of
rehabilitation. It includes subscribing to the PLISSIT model to guide
the level of staff involvement and, as a result, provide a framework
for staff education at various stages
Confidentiality, including disclosure of information and breaching
confidentiality
Abuse: within the unit's philosophy, sexual abuse is defined as
involvement in sexual activities which an individual does not want or
has not consented to or cannot understand or is unable to consent to
Approaches to sexual wellbeing in the unit. The policy identifies two
main approaches depending on whether sexual behaviour needs to

Chapter 6 From PUSSIT to Ex-PUSSIT

be rehabilitated or is an unwelcome/inappropriate consequence of


brain injury. The PLISSIT model is used to guide these approaches
Various resources, including a list of Regional Rehabilitation Unit
staff able to work at PLISSIT stages 2 and 3, as well as more specialist
referrals at stage 4 within and outside the Trust.
The policy identifies flow charts to guide responses at stages 1 and 2
(Figs 6.2, 6.3). These flow charts give inexperienced members of the team
guidance on how to operate at stages 1 and 2. They help ensure some
consistency among the team and, as well as giving all patients Permission to raise sexual wellbeing issues in rehabilitation, they give staff Permission to identify the stage they feel happy and confident with.
Using the Ex-PLISSIT model would add in the element of reflection
and self-awareness for staff. Although the flow charts implicitly incorporate reflection and review at each stage as the rehabilitation professional has to go through these processes in order to make a decision
about the next stage.

Example 2: Relationship
and Sexual Issues
Questionnaire

Figure 6.2 Sexually related


enquiries: guidance for a
response at level 1 of PUSSIT
(from Northwick Park Regional
Rehabilitation Unit Philosophy,
2004)

A working party was formed in 2004at the Oxford Centre for Enablement,
Oxford, in response to nurses' anxieties about addressing issues of sexuality and sexual health with clients. As a result of the working party two
questionnaires were developed by S Hunt and J Parra to give the team

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Section 3 MODELS IN PRACTICE

Figure 6.3 Sexually related


enquiries: guidance for a
response at level 2 of PLiSSIT
(from Northwick Park Regional
Rehabilitation Unit Philosophy,
2004)

Chapter 6 From PLiSSIT to Ex-PLISSIT

Permission to address clients' sexual wellbeing: one for clients with partners and one for clients without partners (Boxes 6.2, 6.3). The questionnaire is usually completed 2-3 weeks after the client's admission, when
they are asked to consider their life goals. In the unit, life goals are used to
enable client-centred goal planning. The questionnaire is usually facilitated by a trained nurse or a health-eare assistant, depending on the relationship between the client and the nurse. One of the issues for the unit is
that dealing with clients' sexual wellbeing is generally seen by the team as
the nurse's role. The team includes a psychosexual doctor whom clients
can be referred to. The team have also developed a booklet about Sexual
Health and Relationships, which is used to give clients Permission to discuss
issues.
Both these examples from practice show how developing different
strategies and tools can help with the implementation of the Ex-PLISSIT
model.

Using the Ex-PLISSIT


model to develop a
training programme

It is important that all of the team feel prepared to operate at stages 1 and
2. The team then need to identify those professionals who feel comfortable with stage 3. This highlights the need for training at each stage. The
Ex-PLISSIT model can be used to structure a training programme to the
rehabilitation team at each stage:

Stage 1: Permission-giving

Re-visiting communication skills: paraphrasing; listening; picking


up on cues; transactional analysis
Looking at the use of language
Identifying some core cue questions that can be used with the
team's client group

Box 6.2 Relationship and Sexual Issues Questionnaire: patients without a partner

Source: Oxford Centre for Enablement (2004)

Box 6.3 Relationship and Sexual Issues Questionnaire: patients with a partner

Source: Oxford Centre for Enablement (2004)

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Section 3 MODELS IN PRACTICE

Using exercises to enable the team to consider their own attitudes,


values and beliefs.
Stage 2: Limited Information
How to use written information
Looking at the type of written information available for the
specific client group
Identifying the types of Limited Information that may be
appropriate to give at this level for the particular client group
Stage 3: Specific Suggestions. At this level more specific knowledge
will be needed regarding the following areas:
Sexual assessment
Normal sexual function
Sexual dysfunction
Sexual positions
Incontinence and sexual activity
The use of sexual aids.
Stage 4: Intensive Therapy. Although clients are referred on at this level
it is still important that rehabilitation professionals know what this
level entails so that they can refer on knowledgeably. It might be
useful for specialists to talk to the team about their role.
At each stage enabling staff to reflect on practice and on their own feelings is important. It may be useful to re-introduce a reflective framework
(Johns & Freshwater 1998), which can be used to promote the learning
cycle that is key to the Ex-PLISSIT model. The learning cycle can also be
used by the team consistently to reflect on and review the sexual wellbeing of specific clients and issues that may arise.

CONCLUSION
This chapter has critically discussed the use of the PLiSSIT model and its limitations. In light of this, an extended model Ex-PLISSIT, was outlined and
discussed in relation to rehabilitation. This chapter has focused on the use
of PLiSSIT and Ex-PLISSIT in addressing clients' sexual wellbeing, although
it could also be used to address othersensitive issues.
There are obvious links between the Ex-PLISSIT model and the leF, and
indeed using these two frameworks together can help rehabilitation professionals identify how as a team they can address clients' sexual wellbeing.
The case study of Joey identified how Ex-PLISSIT could be used in practice
by the whole team and highlighted the fact that the stages of Ex-PLISSIT
are not necessarily followed in order and that Permission-giving is integral
to each stage. The examples from practice gave an idea of the kinds of strategy that can be developed to assist in implementing Ex-PLISSIT. Training is
essential if rehabilitation professionals are to use it effectively in practice
and the suggested training programme shows how Ex-PLISSIT can also help
to determine the content of such a programme.

Chapter 6 From PUSSIT to Ex-PUSSIT

QUESTIONS FOR PRACTICE


How as a team do you address clients' sexual wellbeing?
How could you use the Ex-PLISSIT model as a team?
Using the Ex-PLISSIT model, identify the training needs you need as
a team to address each stage
How might you use the ICF and Ex-PLISSIT together?

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Hodge A 1995 Addressing issue of sexuality with
spinal cord injured persons. Orthopaedic Nursing
14(3):21-24
Johns C, Freshwater D 1998Transforming nursing
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Irwin R 2000 Treatments for patients with sexual
problems. Professional Nurse 15:360-364
Jolley S 2002 Taking a sexual history: the role of the
nurse. Nursing Times 98(18):39-41
Katz S, Aloni R 1999 Sexual dysfunctions of persons
after traumatic brain injury: perceptions of
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Research 22:45-53
Laflin M 1996a Sexuality and the elderly. In: Lewis C
(ed) Ageing: the health care challenge. FA Davis,
Philadelphia
Laflin M 1996b Promoting the sexual health of geriatric
patients. Topics in Geriatric Rehabilitation
11(4):43-54

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Lemon M 1993 Sexual counselling and spinal cord


injury. Sexuality and Disability 11:73-97.
McAlonan S 1996 Improving sexual rehabilitation
services: the client's perspective. American Journal
of Occupational Therapy 50:826-834
McCann M E 1989 Sexual healing after a heart attack.
American Journal of Nursing 89: 1131-1138
Mayers K S, Heller J A 2003 Sexuality and the late
stage Huntington's disease patient. Sexuality and
Disability 21:91-105
Medlar T, Medlar J 1990 Nursing management of
sexuality issues. Journal of Head Trauma
Rehabilitation 5:46-61
Meyer-Ruppel A 1999 Incorporating sexuality and the
PLISSIT model into your clinical practice. Journal of
Gynecologic Oncology Nursing 9:29-31
Miller W 1984An occupational therapist as a sexual
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injuries. Canadian Journal of Occupational Therapy
51:172-175
Mona L R, Krause J S, Norris F H et al 2000 Sexual
expression following spinal cord injury.
NeuroRehabilitation 15: 121-131
Nolan M, Nolan J 1998 Rehabilitation in multiple
sclerosis: the potential nursing contribution. British
Journal of Therapy and Rehabilitation 5:370-375
Northcott R, Chard G 2000 Sexual aspects of
rehabilitation: the client's perspective. British
Journal of Occupational Therapy 63:412-418
Pearson A, Vaughan B, Fitzgerald M 1996 Nursing
models for practice, 2nd edn. ButterworthHeinemann,Oxford
Peate I 2004 Sexuality and sexual health promotion for
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13:188-193
Pope M 1997 Sexual issues for older lesbians and gays.
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sexuality. Orthopaedic Nursing 18:53-64

Sherman B 1999 Sex, intimacy and aged care. Jessica


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classification of functioning, disability and health.
World Health Organization, Geneva

Useful contacts
British Association for Sexual & Relationship Therapy
(BASRT)
PO Box 13686

London SW20 9ZH


Tel.: 02085432707
E-mail: [email protected]

Chapter 6 From PliSSIT to Ex-PLISSIT

British Menopause Society


4-6 Eton Place
Marlow
Bucks SL7 2QA
Tel.: 01628 890199
FPA (Formerly the Family Planning Association)
(Information & advice on contraception. SexWare
catalogue of sexual aids)
2-12 Pentonville Rd
London Nl 9FP
Tel.: 020 7837 5432
Helpline: 0845 310 1334
Website: http://www.fpa.org.uk
The Gender Trust
(Offers support to people who are transsexual, gender
dysphoric or transgenderist)
PO Box 3192
Brighton BNl 3WR
Tel.:01273 234024
Helpline: 07000 790 347
Website: http://www.gendertrust.org.uk
Institute of Psychosexual Medicine
11 Chandos St
Cavendish Square
London WIG 9DR
Tel.:020 7580 0631
Website: http://www.ipm.org.uk
London Lesbian & Gay Switchboard
PO Box 7324
London Nl 9QS

Tel.: 020 7837 6768


Helpline: 020 7837 7324
Website: http://www.llgs.org.uk
MIND
15-19 Broadway
Stratford
London E15 4BQ
Tel.: 0845 766 0163
Website: http://www.mind.org.uk
RELATE
(Provider of relationship counselling & sex therapy)
11 Little Church St
Rugby CV21 3AW
Tel.: 01788 565675
Website: http://www.relate.org.uk
Sexual Dysfunction Association
Windmill Place Business Centre
2-4 Windmill Lane
Southall
Middlesex UB2 47J
Helpline: 0870 7743571
Website: http://www.sda.uk.net
Sh! Women's Erotic Emporium
57 Hoxton Square
LondonNl
Tel.: 020 7613 5458
Website: http://www.sh-womenstore.com

129

Chapter

131

Health Promotion Models


Mary Gottwald

INTRODUCTION
'Health for all' has been on the World Health Organization's agenda for
a number of years (Alma Ata Declaration 1978, cited in Katz et al 2002)
and is now seen as a challenge for the 21st century. In the UK a number
of government policies have been published to facilitate 'health for all',
for example Saving Lives: Our Healthier Nation (Department of Health
1999), The NHS Plan (Department of Health 2000) and National Service
Frameworks such as those for Mental Health (Department of Health
1999b), Coronary Heart Disease (Department of Health 2000b) and Older
People (Department of Health 2001) and, lastly, Healthy People 2010,
which aims to promote action and reduce disability (Donatelle 2004).
It is not surprising therefore that the subject of health promotion is
topical and relevant to health and social care practitioners working
within rehabilitation. The aims of this chapter are:
To define what is meant by 'health promotion'
To discuss the relationship between health promotion, rehabilitation
and the International Classification of Functioning, Disability and
Health (World Health Organization 2001)
Three models used within health promotion will be outlined and their
relationship to rehabilitation discussed, with two case scenarios being
used to illustrate the application of each model
The final section will highlight how models can promote interprofessional working but also lead to barriers to interprofessional working.

CASE STUDY JOEY


Joey is a 50-year-old single unemployed man who
lives with his partner on the tenth floor of an
apartment block. His partner. John, works as a selfemployed plumber. Joey has been unemployed for
the last 18 months. He has always enjoyed cooking

and now has decided to do all the cookmg as It


makes him feel that he is contributing to the partnership and therefore increases hisself-esteem and
makes him less anxious and stressed. However, during his period of unemployment he has put on

132

Section 3 MODELS IN PRACTICE

4 stone. He has lost motivation to continue with his


other hobbies and leads a sedentary lifestyle.
Joey has recently had a heart attack and has
been referred to the cardiac rehabilitation pro-

CASE STUDY CHAN


Chan is a 42-year-old man who lives with his wife
and two children (aged 10and B) in a semidetached house in a rural community. Following
a stroke involving the middle cerebral artery in the
non-dominant hemisphere, Chan has been referred
to the local rehabilitation unit. Chan has had raised
blood pressure for 3 years and has been attending
regular appointments with his GP but has not followed any advice given in relation to his lifestyle.
He reveals to the nurse who is taking his social
and medical history that he has smoked 30 cigarettes a day since he was 20, mainly when he is at
work but also in the evening to help him relax. The
rest of his family are healthy but his youngest child

gramme. He has not related his heart attack to his


increase in weight.

has asthma. His job as an accountant is stressful


and involves working long hours, which means that
he has limited time to spend with his family and
friends.
The nurse decides to discuss his smoking. Chan
remarks that he would like to stop and says he has
done so once before for 3 months but he has
started again and now he is disheartened and has
a low opinion of himself due to feeling he has
failed hisfamily, in particular his daughter who has
asthma. Chan has a change in the functions of his
left arm and leg. There has been a change in structure in terms of a bleed into the brain.

DEFINING HEALTH PROMOTION


The World Health Organization became an advocate of health promotion
over twenty years ago (Thibeault & Hebert 1997)- this was partly due to
the recognition of the increase in medical costs and loss of productivity
due to unhealthy behaviours (Anderson et al1999, Thibeault & Hebert
1997). The World Health Organization defines health promotion as:

The process ofenabling people to increase control over and improve their
health. To reach a state ofcomplete physical, mental andsocial well being
an individual orgroup must be able to identify and realise aspirations to
satisfy needs and to change and cope with theenvironment.
It is important to note that this definition does not equal 'health educa-

tion'. In the past, health education and health promotion are terms that
have been used interchangeably. However, health education is a term
'used to describe working with people to give them the knowledge to
improve their own health and working towards individual attitude and
change' (Ewles & Simnett 2003, p. 24).
Health education is only one aspect of health promotion and tends to
focus on the individual, who is held responsible for their behaviour.
Health education ignores the wider determinants of health; for example,
it ignores the fact that it is not always possible for individuals to make
healthy choices. Individuals may not give up smoking because their parents and friends smoke or because smoking relieves the stress caused by

Chapter 7 Health Promotion Models

not having a job/having a pressurised job/having children who behave


badly - in other words due to social pressures.
Health promotion is much wider than health education and includes
a variety of activities with responsibility being held collectively by society. Those working within rehabilitation can include health promotion
activities within their roles and effectively promote health on either
a one-to-one basis or a group basis. It must also be remembered that, following government initiatives, whole populations can also be targeted
(Ewles & Simnett 2003, Bennett & Murphy 1997).
Activities include preventative health services, for example, screening for
disease and immunisation. Health education programmes include highlighting the dangers of smoking or excessive alcohol intake, the benefits of
a healthy diet or the benefits of taking exercise. Community-based work will
involve health and social care professionals assisting communities to take
collective action in order to identify and meet their own health needs.
Public health policy ensures that having good health is not solely the individual's responsibility but also the responsibility of the government and
local and national health departments. Environmental health policies ensure
that the focus is on improving amenities such as safe water, including fluoride in water to reduce tooth decay, or reducing air pollution. Organisational development might involve an organisation such as a hospital
ensuring that its policies promote the health of all employees by having
healthy menus in the canteen. The final activity suggested involves Economic and regulatory activities, which could relate to policy such as raising
taxes on alcohol to reduce alcoholism (Ewles & Simnett 2003, p. 28).
Although the above activities demonstrate the breadth of health promotion work, not all these aspects will be part of each health promoter's
role.

HEALTH PROMOTION AND REHABILITATION


One question health- and social-care professionals who work within rehabilitation can ask themselves is: How does health promotion fit within
their remit? Barnes & Ward (2000) define rehabilitation as 'an active and
dynamic process by which a disabled person is helped to acquire knowledge and skills in order to maximise physical, psychological and social
function; it is a process that maximises functional ability' (p. 4).
By comparing this to the definition provided by the World Health
Organization, similarities can be seen. For example, both health promotion and rehabilitation are concerned with developing skills and changing the social environment in order to improve health and functional
ability. Both rehabilitation and health promotion focus on all aspects that
are pertinent to the person. It is evident, therefore, that those health and
social care practitioners who work within rehabilitation could include
some of the health promotion activities identified by Ewles & Simnett
(2003) within their current roles. Practitioners would aim to empower
the clients they work with to achieve behavioural change - this being
the main aim of health promotion work.

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Section 3 MODElS IN PRACTICE

The International Classification of Functioning, Disability and Health


(World Health Organization 2001) provides a scientific basis for understanding and studying health and can also be used as part of the framework to identify the focus of interventions, which in turn will facilitate
necessary behavioural changes within the health promotion aspects of
a person's rehabilitation programme.

CASE STUDY JOEY


Impairment
Anxiety
Stress
Reduced self-esteem

Activity Limitations
Difficulties with instrumental
activities of daily living

Participation Restriction
Unable to carry out domestic tasks
Unable to participate in leisure
activities

CASE STUDY CHAN


Impairment
High muscle tone
Reduced sensation
Abnormal reflex activity
Reduced voluntary
movements
Stress

Activity Limitations
Difficulty with activities of
daily living
Difficulty with fine hand
coordination tasks
Difficulties with work tasks

Participation Restriction
Unable to carry out roles related to
job
Unable to participate in family
activities

If part of the rehabilitation focus is on developing Joey and Chan's selfesteem and self-efficacy and reducing anxiety and stress levels, then this
should facilitate behavioural changes in relation to healthier eating and
reduction/cessation of smoking, i.e. the health promotion component of
their rehabilitation programmes. If behavioural changes are successful
then the likelihood of further heart attacks or strokes is diminished.

MODELS OF HEALTH PROMOTION


There are a number of models that could be used within health promotion, however, for the purpose of this chapter three models will be outlined and then their relationship to rehabilitation discussed. These
models are: the Stages of Change Model (Prochaska & Di Clemente
1982), Beattie's model (1991, cited in Naidoo & Wills 2000) and the
Health Action Model (Tones 1987, cited in Tones & Tilford 2001). Examples of other models that would work equally well within rehabilitation
are the Health Belief Model (Hochbaum 1958, cited in Tones & Green
2004), the Theory of Reasoned Action (Fishbein & Ajzen 1975, cited in
Naidoo & Wills 2000) and the Health Promotion Model (Pender et al
2002).A case study will be used to illustrate how each model can be used
within rehabilitation.

Chapter 7 Health Promotion Models

Models are used within health promotion work as they provide health
and social care practitioners with a clear framework that first of all helps
them to understand multifaceted situations, then aids their decisionmaking and enables them to plan effective intervention with their clients.
They are a way of linking ideas together as well as showing the relationship between theory and practice (Ewles & Sirnnett 2003, Naidoo & Wills
1998,2000). Evidence has indicated that models are open to criticism; for
example, Anderson et al (1999) highlight issues from research carried out
applying the Stages of Change Model proposed by Prochaska &
Di Clemente (1982). Although evidence suggests the Stages of Change
Model can reliably and validly be used by clinicians, no strategies are
suggested that will help the health and social care practititioner to move
their client from one stage to the next.
By being aware of a number of models that can be used to promote
health within rehabilitation programmes, health and social care practitioners can choose the most appropriate model to use as the framework
for intervention. Choice of model may also depend on the client's culture, socioeconomic status and personal values and beliefs. However, it
is suggested that these models could be used within a variety of rehabilitation settings, e.g. within mental health and physical disability services.
The first model chosen is what is known as a descriptive model and
the latter two are analytical models. 'Descriptive models identify the
diversity of existing practice but make no judgements about which kind
of practice is preferable. Analytical models are explicit about the values
underpinning practice and often prioritise certain kinds of practice over
others' (Naidoo & Wills 2001, p. 292).

STAGES OF CHANGE MODEL (PROCHASKA El: 01 CLEMENTE


1982)
This model can be used to enable health and social care professionals
working within rehabilitation and their clients to work alongside each
other. Evidence suggests that this model can be used widely. For example, it has been used with people who have addictive behaviours such as
smoking and alcoholism (Prochaska et al 1992, Otake & Shimai 2001,
Mendel & Hipkins 2002), with those with mental health issues and
co-occurring disorders (Finnell 2003) and those who have a chronic illness, for example asthma or diabetes (Cassidy 1999,Natarajan et a12002,
Vallis et al 2003). Hilton et al (1999) have used the model to promote
behavioural change in those at risk of coronary heart disease.
Prochaska & Di Clemente (1982) described this process model both as
a linear and circular model and maintained that individuals go through
a number of stages in order to change their behaviour. In the linear
model, the clients that health and social care professionals work with
would progress from one stage to the next before successfully achieving
improved health behaviours. The linear model does not allow for
relapses (Anderson et aI1999).

135

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Section 3 MODELS IN PRACTICE

However, Prochaska & Di Clemente recognise the difficulties attaining successful behavioural change and stressed that some individuals
may need to go through the process more than once - hence the cyclical
model. According to Prochaska & Di Clemente, those who want to give
up smoking need to go round the cycle on average three times before
succeeding. Some may go around the cycle a number of times and then
make the decision that they will continue to smoke as they 'do not like
continued failure ... and try to resume the life of a satisfied smoker'
(p. 284). In this case, the person's autonomy must be respected.
There are five stages to this model (Fig. 7.1):
1.
2.
3.
4.
5.

Pre-contemplation stage
Contemplation stage
Commitment stage
Action stage/Maintenance
Relapse.

Readers should note that literature uses different terminologies for the
third stage. Prochaska & DiClemente (1982) use 'determination', Prochaska et al (1992) and Anderson et al (1999) use 'preparation' and Ewles
& Simnett (2003) 'commitment'.
During the first three stages health and social care practitioners work
alongside clients, preparing them for change. Motivation is the key to
successful behavioural change, so once clients believe that their expectations will be met and that change can take place, they will 'commit'
themselves to the health promotion programme.
Motivational interviewing may be a useful technique to include as
part of the rehabilitation and health promotion programme, and has
been used with those who have mental health disorders, diabetes and
HIV, as it is thought to increase insight and compliance with interventions (Rusch & Corrigan 2002). Motivational interviewing 'allows the
person to explore and discover the advantages and disadvantages of
their behaviours for themselves' (Rusch & Corrigan 2002, p. 28). Realistic goals also need to be determined and a caring relationship that
includes trust is essential between practitioners and clients (Prochaska &
Di Clemente 1982). If goals set are SMART (specific, measurable, achievable, realistic and with a timescale) and if goals are set by the practitioner and client together, then it can make achievement of goals
more successful.
First, it is important to note that some individuals may decide not to
change even though they have been given information about the benefits
of, for instance, giving up smoking, losing weight, drinking less alcohol.
They may also make the decision that they are unable to change.
Second, individuals may decide to exit at any stage of this model and
some individuals may remain in one stage for some time; for example,
those with obsessive-compulsive disorder may remain in the 'contemplation stage', as they are continually seeking information in the hope
that their issues will suddenly be resolved without them having to go
through the 'action stage' (Prochaska & Di Clemente 1982).

Chapter 7 Health Promotion Models

Figure 7.1

The Stages of Change Model (Prochaska

a Di Clemente 1982) (Adapted from Ewles a Simnett 2003, p. 274)

137

138

Section 3 MODElS IN PRACTICE

CASE STUDY JOEY


Pre-contemplation stage
Someone who denies that there is a problem, or is
not aware of the consequences and does not recognise that there is a need to change their health
related behaviour, will not progress beyond this
stage until they make the decision that they want
to change their behaviour (Prochaska Et Di
Clemente 1982, Ewles Et Simnett 2003). At this
point, the individual may only see the 'costs' to
them and cannot see any benefits from changing
their behaviour (Rusch Et Corrigan 2002).
Joey has identified that he has been stressed and
anxious; therefore, initially, rehabilitation could
focus on coping strategies to reduce his stress and
anxiety (Anderson et al 1999).
In the pre-contemplation stage, health education,
as part of the rehabilitation programme, is also
appropriate. Information and advice may be given
to raise Joey's awareness about the risks related to
his health related behaviour. This information will
enable Joey to make a decision as to whether to
continue with his present diet and sedentary
lifestyle. At this stage it would not be helpful to tell
Joey to eat a more healthy diet and lose weight.
A~vice given could be general, for example, letting
him know that there is help available from a dietitian. Giving the person the opportunity to go away
and reflect on the advice is essential. However,
assumptions should not be made that, just because
Joey has been given appropriate information, this
will not necessarily lead to weight reduction - all
other factors need to be considered. It is for this
reason that the issues behind Joey's stress and anxiety need to be considered (McDougall 2001).
Activities that would motivate Joey to change his
unhealthy lifestyle, l.e, lose weight, could also be
included in the rehabilitation programme.
Contemplation stage
Having attended the cardiac rehabilitation programme Joey is now more aware of the risks related
to his unhealthy behaviour and may be thinking
about changing. However, although he may begin to
see the benefits of changing his behaviour, he still
feels that the costs outweigh the benefits (Rusch Et
Corrigan 2002).

Increasing Joey's self-empowerment is important


and therefore advice can be more specific - healthy
versus non-healthy diets; the effects of an
unhealthy diet on the heart. Sessions on healthy
eating could be included in the cardiac rehabilitation programme. By including these sessions in the
rehabilitation programme Joey would not be the
main focus of the session, as this information would
also be appropriate for other group participants.
Health and social care professionals must not
assume that, just because Joey is aware of the risks
related to his behaviour, i.e, the consequences, he
will be able to select the best strategies to achieve
weight loss.
Commitment stage
Once Joey has been provided with accurate information and has been made aware of alternative
choices, strategies to help with decision-making
can be given. Joey can make the decision to change
and then can be referred to a dietitian, who would
help him plan a specific diet. It is only at this point
that Joey will be able to see that the benefits of
changing his behaviour are greater than the costs
(Rusch Et Corrigan 2002).
Action stage/Maintenance stages
As part of his rehabilitation programme, Joey begins
to change his diet and monitor his weight; in other
words, he begins to practise new behaviours.
Behaviour change strategies are still needed and
c.ontinuing advice and support about changing routines could be helpful.
At this point Joey may exit the cycle. However, as
previously mentioned, this is not a simple process
and may take 6 months or more (Rusch Et Corrigan
2002). If a further life event occurs that increases
his anxiety and stress levels and once again lowers
his self-esteem, Joey may return to his previous
unhealthy eating habits and thus the relapse stage
may be entered. Unless Joey finds employment he
may revert back to his 'comfort eating: It is important that this is not seen as failure but as a normal
part of the process. It is essential for encouragement
to continue, which will empower Joey to make the
decision to enter the contemplation stage again.

Chapter 7 Health Promotion Models

CASE STUDY CHAN


Anderson et al (1999) state that the model that has
been used most frequently with people who smoke
is the Stages of Change Model. According to Prochaska Et Di Clemente (1982), individuals remain in
each stage for different periods of time. It is important for health and social care practitioners not to
make assumptions and to be aware of varying timeframes. The individual needs to feel ready to move
on to the nextstage and should not move on just
because the practitioner deems them to be ready. If
they do not want to move on then it must not be
assumed that they are being resistive to change.
According to Prochaska Et Di Clemente (1982),
Anderson et al (1999) and McDougall (2001), smokers may remain in the contemplation stage for 2
weeks or any time up to 1 year. They may remain in
the commitment stage for between 2 hours and 2
months, while the maintenance/action stage may
take longer and last between 6 and 12 months. The
first 3-6 months are the most difficult and a time
when relapse may occur. The next 6-12 months are
less difficult but strategies need to be continued to
ensure successful behavioural change in relation to
giving up smoking.
Chan has successfully stopped smoking before
and therefore at the time of hisvisit to the rehabilitation unit he is in the relapse stage of the Stages
of Change Model. As he has been successful before,
health promotion advice could begin byascertaining what strategies worked for Chan before and
what made him start smoking again. Health and
social care practitioners could begin to help Chan

identifythe cause of his stress and identify how


strong Chan's commitment was the first time he
decided to give up smoking. They also need to consider Chan's levels of self-efficacy. The more able
Chan believes himself to be in dealing with the
internal and external pressures to smoke, the more
likely he is to succeed this time with giving up
smoking.
As Chan has remarked that he would like to stop
smoking again (contemplation stage), practitioners
could begin with offering advice to help him stop
smoking again (commitment stage). He could be
offered support as an individual at an outpatient's
clinic. if this was appropriate, or in a 'stop smoking'
group, which runs in his local health centre. Support from familyand friends is essential and consideration needs to be given to the issue that friends
may smoke and therefore add more pressure. Finally
what is important this time around the cycle is that
Chan needs to value the consequences of his
behavioural change.
One of the criticisms of using this model with
Chan is that the focus is on 'giving up smoking'. The
model does not really focus on the reasons why
Chan has started smoking again, for example, his
stressful job that involves working long hours and
therefore gives him limited time for socialising with
his familyand friends. However, these factors could
be taken into account as part of his rehabilitation
programme following hisstroke. We can therefore
see howthis health promotion model can be used
within Chan's rehabilitation programme.

BEATTIE'S MODEL (1991)


There appears to be limited research published in relation to Beattie's
model but it is still deemed to be useful for helping practitioners analyse
current strategies used within the rehabilitation team. It could help the
team to make changes that promote client-centred practice and encourages the team to increase their self-awareness and question their own
values and assumptions. This would enable the team to change from
using a very top-down approach to a more bottom-up approach. Having
said this, each quadrant is valuable.
This model gives the health and social care practitioner a choice of two
modes of intervention and four approaches to choose from to help them

139

140

Section 3 MODELS IN PRACTICE

plan and organise their health promotion activities with either the
individual or the community. Each quadrant suggests different
approaches and a variety of health promotion activities that could be carried out as part of a rehabilitation programme (Naidoo & Wills 1998,
2000, 2001, Kerr 2002) (Fig. 7.2).
The authoritative mode of intervention is considered to be a top-down
approach, i.e. the person/community is 'told what to do' and are
encouraged to change their behaviours to those suggested by health and
social care professionals, whereas the negotiated mode is seen as a bottom-up approach where the person/community identify their own
health needs and then professionals work with them to agree what the
best course of action is.
One issue for practitioners to consider is the mode of intervention currently used within practice. If the top-down approach has been the main
mode of intervention then practitioners could use this model to analyse
their practice. The model may highlight a need for potential change,
which may result in practitioners using the bottom-up, more clientcentred mode of intervention.

Figure 7.2 Beattie's model


(Adapted with permission from
Naidoo Et Wills 2001, p. 295)

Chapter 7 Health Promotion Models

CASE STUDY JOEY


First of all the rehabilitation team would need to
select which quadrant is pertinent. If clients have
no idea that there is a need to change their healthrelated behaviours, initially the authoritative/individual quadrant may be used. Then once the client
is aware and decides to change their health-related
behaviours, the negotiated/individual quadrant may
be identified as being the most appropriate.
Mode of intervention - authoritative/focus of
intervention - the individual
In this quadrant the focus is on the individual to
change their behaviour. The professionals lead the
interventions; for example, the dietitian may provide Joey with information on losing weight following hiscardiac arrest - the advice is deemed to be
important by the dietitian rather than Joey. Other
health and social care practitioners would identify
to Joey that his participation in an exercise programme as part of the cardiac rehabilitation
programme would be important.
Mode of intervention - negotiated/focus of intervention - the individual
Following his heart attack Joey makes the decision
to go on a diet. In this mode, he leads the intervention. Joey decides that he wants to discuss his diet
and initiates the sessions with a member of staff
from the cardiac rehabilitation programme, who
then acts as the facilitator. If Joey asks for information on healthier eating, then the practitioner can
provide him with this.
Losing weight may add to Joey's levels of stress
and anxiety and therefore he may also ask for support while he is on his diet, i.e. counselling. At the
same time, if the rehabilitation team are working
with Joey to improve his self-esteem and self-efficacy, he is more likely to feel empowered to follow
the dietitians advice.
Mode of intervention - authoritative/focus of
intervention - the community
In this quadrant professionals aim to protect the
community by improving the community's health.

They may, for example, work with community members and campaign to improve food-labelling regulations, lead legislative action and lobby the
government to make changes.
Community initiatives that foster local weightmanagement support groups and develop healthrelated services such as cardiac care support groups
could also be developed. Following the National
Service Framework for coronary care, the agenda
for these initiatives is primarily authoritative, as the
government and not the community has identified
the agenda. However, the focus is on improving the
health of the community, of which Joey is a
member.
In order for Joey to understand the food labels,
and therefore which foods are healthier, the rehabilitation team may revert to the first quadrant discussed above and provide information on content
and nutritional value of food that would help Joey
to make choices that will help him to lose weight.
Mode of intervention - negotiated / focus of
intervention - the community
Community development seeks to empower the
community to meet their own needs, for example,
Joey may identify that the community in which he
lives has a need for more fresh fruit and vegetables
to be sold at the local community shop. Health professionals from the cardiac rehabilitation programme and community members may liaise with
local authority councillors who in turn may enhance
the community's skills and empower them to be
able to negotiate with the owner of the shop. This
would also make it easier for Joey to walk to the
local shop and buy more healthy food.
The cardiac rehabilitation group could be encouraged to plan healthier menus together, thus taking
some of the responsibility from the individual. As
an individual, Joey could then make an informed
choice and decide to cook healthier meals for
himself and his partner.

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THE HEALTH ACTION MODEL (TONES 1987)


This model (Fig. 7.3) initially presented by Tones in the 1970s (Tones &
Green 2004)initially appears complex and does not look at whether people are ready to change, like Prochaska and Di Clemente's 'Stages of
Change Model'. However, it is useful in that it can be used to analyse
whether a health promotion activity is likely to have any impact on the
person's intentions, leading them to change their behaviour.
First, this model focuses on three belief systems - the normative
(social pressures), motivation and belief system (Fig. 7.3). These systems
influence whether an individual is likely to change their health related
behaviour. For example, if the social environment is not suitable or if the
individual does not have the necessary knowledge and skills, then
the individual may not be able to change their behaviour.
Second, this model emphasises the importance of personality dimension (self-sentiment and self-concept) on behavioural intention. It presumes that a person with high self-esteem, an internal locus of control
and a positive self-concept will be more likely to perform positive healthrelated behaviours. On the other hand, a person with low self-esteem
and an external locus of control may feel that they are not able to perform
positive health-related behaviours for reasons beyond their control
(Tones & Tilford 2001, Katz et al 2002, Ewles & Simnett 2003).
The model therefore emphasises the importance of empowerment and
facilitation of positive health behaviours through the development of a
Figure 7.3 The Health Action
Model (Reproduced with the
permission of Nelson Thomes
ltd from Health Promotion:
Effectiveness, efficiency and
equity, ISBN 0 7487 4527 0 Keith Tones and Sylvia Tilford
(Tones Et Tilford 2001). first
published in 1990)

Chapter 7 Health Promotion Models

person's self-esteem, self-concept and 'life skills'. Health and social care
professionals can work with the individual, and/ or at a national/local
level, to address the basic environmental determinants of health (Ewles
& Simnett 2003, p. 272). They also have a responsibility to work with the
individual to identify their values and beliefs and the particulars that
lead to negative health-related behaviours in order to ensure that individuals routinely include healthy behavioural activities within their
lifestyles (Tones & Green 2004).
As with the Stages of Change Model, it can be seen that, even though
the model can be used as a framework within rehabilitation, relapses
may occur. In this instance it is important for the rehabilitation professional to re-evaluate how the three belief systems can be used and to continue to work with individuals to develop their knowledge, skills,
self-concept and self-sentiment further so that they can feel empowered
to make behavioural changes that become part of their daily routine.

CASE STUDY JOEY


If the health and social care professional uses this
model, then part of the rehabilitation programme
would include developing Joey's assertiveness skills
and would include activities to develop his selfesteem. The latter part of the programme could
include work rehabilitation in order to develop his
skills further. If this led to paid employment or voluntary work then it is likely his self-esteem would

be improved and therefore Joey would value himself


more. He would then hopefully be able to maintain
a healthy weight, reducing the likelihood of a further heart attack. However, if Joey is unsuccessful
in finding employment and if local policy does not
encourage healthy eating choices then it is less
likelythat Joey will achieve behavioural changes.

CASE STUDY CHAN


Chan has identified that he wants to give up smoking and spend more time with hisfamily. Alongside
his rehabilitation programme, he has been attending the local support group, which is facilitated by
a health and social care professional. The focus of
this model would differ from that of Prochaska Et Oi
Clemente's model. Here the professional works
alongside Chan and other members of the group to
develop their knowledge of the harmful effects of
smoking. The professional would aim to improve
Chan's self-esteem, and skills in assertiveness can
also be taught, which would enable Chan to review
his roles at work, thus reducing the pressure of long
working hours. In other words, the reasons behind

Chan's smoking are explored, in the beliefthat


dealing with these problems would enable Chan to
give up smoking permanently.
The Health Action Model stresses the importance
of Chan's self-concept in facilitating change. The
model also suggests that working with others (the
support group) can help and emphasises that barriers can prevent change - the pressures of working
long hours may have led to Chan feeling stressed
and hissubsequent continuation of unhealthy
related behaviours. The model does not simply focus
on Chan's behavioural intention but considers the
wider implications, knowledge and skills needed to
achieve the desired healthy behaviour.

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HEALTH PROMOTION MODELS AND INTER-PROFESSIONAL


WORKING
In today's client-centred practice arena it is essential for health and social
care practitioners working in public and private sector organizations to

collaborate and work together with each other as well as their clients.
Practitioners are governed by a number of government policies and
directives and therefore, through collaboration, those working in different agencies and services can ensure that practice is more clearly coordinated, which in turn can only improve the seamless service, quality and
continuity of care provided for clients and carers (Barr 1997, ProctorChilds et al1998, Payne 2000).
By working together and using a health promotion model as one of
the frameworks for practice, interprofessional teams will be able to plan,
monitor and evaluate their practice more easily and will be working
'with rather than alongside each other' (Proctor-Childs et al1998, p. 616),
and therefore any potential conflict can be avoided. The models
described could encourage practitioners to reflect on practice, examine
their values and beliefs and possibly change from using top-down
approaches to bottom-up approaches, enabling a greater sense of client
empowerment and client-led service.
Models of health promotion can unify practice but do not prevent different professionals from carrying out discipline-specific interventions.
Models can ensure that each professional is guided by activities in each
stage of the Stages of Change Model or each quadrant of Beattie's Model.
On the other hand, confusion and conflict could occur between team
members and/or between health and social care professionals and
clients if there is no agreement on the best approach to intervention. For
instance, clients may wish to continue their unhealthy behaviours
(smoking, excessive eating), whereas professionals could deem that
these behaviours should change in order to prevent further strokes or
heart attacks. In this case, professionals can support each other and their
clients who decide to revert back to unhealthy related behaviours, while
continuing with other rehabilitation services offered.
In interprofessional working it is essential to identify goals that are
responsive to both the client and their carers. If there is no consensus on
which health promotion model to use, goals set may be unclear for both
the professional and client and therefore a breakdown in communication
and collaboration could occur (Mariano 1992, Lindeke & Block 1998).
It is therefore essential for the rehabilitation team to select the most
appropriate health promotion model to use within their programmes.

CONCLUSION
Three models used within health promotion work have been outlined;
however, it is important for health and social care professionals working
within rehabilitation to keep an open mind. These models can help practitioners to plan their rehabilitation programmes but do not have to
be used prescriptively and perhaps thought can be given to using a

Chapter 7 Health Promotion Models

mixture of models at the same time, or perhaps one model might initially
be used as the framework and then, as clients achieve their goals / change
their goals, the professional can use another model as the framework.
It is also essential to keep in mind clients' views about causes and prevention of ill health and, as mentioned in the Health Action Model, the
extent to which clients feel they can change their lives; their sociocultural and religious beliefs; whether they want to change - and, as discussed
in the Stages of Change Model, whether the benefits outweigh the disadvantages.
Lastly, as well as remembering the individual factors (empowering
clients, developing skills, enhancing self-esteem), it is important to
remember the environmental and social factors - if the latter two do not
facilitate the most healthy choices then it will be difficult to achieve
behavioural changes resulting in improved health.

QUESTIONS FOR DISCUSSION


How do you decide which health promotion model to use?
How do you decide whether to use one health promotion model or a
mixture of models?
As a team, how will the client's views about causes and prevention
of ill health be considered?
How will you ensure that the individual, environmental and social
factors will be considered for each person referred to you for
rehabilitation?

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Beattie A 1991 knowledge and control in health
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Chapter

147

The Kawa (River) Model:

Client centred rehabilitation in cultural context


Michael K. Iwama

INTRODUCTION
Culture in rehabilitation is often regarded as an individual client matter
rather than a fundamental, central and pervasive element of rehabilitation philosophy, theory and practice. Contemporary approaches in rehabilitation are heavily influenced by Western cultural contexts from
which they were developed, and hence may not be as appropriate for
clients and professionals situated outside mainstream Western cultural
norms. The aim of this chapter is to illuminate the cultural aspects of
rehabilitation theory through an occupational therapy conceptual model
developed outside the Western world.
The Kawa/River model is presented with the aims of:
Demonstrating the relationship between cultural context and the
structure and concepts of conceptual models in rehabilitation
Challenging rehabilitation professionals to examine the cultural
boundaries of their own approaches
Discussing the implications of cultural relevance to client-centred
rehabilitation practice.

The International Classification of Functioning, Disability and Health


(ICF;World Health Organization 2001)represents an important development toward acknowledging the wider social complexities and contexts
associated with people's health and health related states. In rehabilitation theory and practice, matters of disability that were once conceptualised predominantly from a medical-pathology perspective, are now
appreciated more broadly. In the new ICF framework social and environmental factors are accorded greater emphasis, leading to a more
inclusive and less pathology- and impairment-centred view of health
and disability. The framework has continued to advance rehabilitation
toward more holistic, bio-psycho-social perspectives (World Health
Organization 2001, p. 9) and shows promise in bringing client-centred

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Section 3 MODELS IN PRACTICE

care in practice much closer to realisation. A universal framework like


the ICF may equitably classify individuals' states of health and disability
and guide rehabilitation toward a more consistent and potentially better
quality of rehabilitative care.
Though the ICF continues to show promise in bringing about a more
universal and systematic approach to classifying and thus shaping
approaches to issues of disability and health, there are gaps appearing in
the interim. Arguably one of the larger challenges to the utility of the ICF
or any universal classification system based on Western health practices
and norms is 'culture' and the diverse ways in which individuals and
communities view and experience their worlds and construct their particular understandings of health and disability. The universality (World
Health Organization 2001, p. 14) purported in authoritative classification
systems and their aims to systematically explain and guide matters of
health and disability for all can potentially fall short of adequately
explaining the rehabilitative health needs of individuals and societies
who find themselves situated on and outside the margins of its categories. In other words, from a cultural perspective, the varying social
experiences in varying contexts of health and disability, and alternate
perspectives of health that transcend the individual level, may require
some flexibility and accommodation in our current theoretical frameworks. Consideration of alternate culturally relevant theory and knowledge systems might be helpful in augmenting or complementing the ICF
framework.
Most contemporary conceptual models of rehabilitation have been
raised out of Western social and cultural contexts and reflect the characteristics and features germane to Western interpretations and views of
reality. This includes health and, in the field of rehabilitation, what is
worth doing and what constitutes a state of wellness to which rehabilitation professionals endeavour to restore their clients. In particular, most
contemporary models in rehabilitation construe the individual to be central to and agent in a surrounding but distinctly separate social, physical,
economic and political environment. For those who do not abide in this
particular 'normal' experience of daily Western life nor fit neatly into the
categories set forth by a particular health model, current theory and
practices may be inadequate and even exclusive in some instances. For
example, the practice of locating disability in the individual constructing
it as a personal tragedy rather than a societal one, with the mandate to
enhance independence and autonomy, may be poorly comprehended
and even maladaptive for those who view the world and situate matters
of wellbeing in a less rational, more naturalistic and social collective oriented way.
Western ideologies and influences, which have shaped theoretical and
epistemological discourse and practices in rehabilitation over the past
decades, are being recognised increasingly within a wider and more
diverse global context. This is becoming clearer as rehabilitation professionals increasingly encounter challenges in carrying out their therapeutic mandates with people from differing and varied cultural origins.
There may be a tendency to situate the problem of incongruence on the

Chapter 8 The Kawa (River) Model

client, often construing the problem to be one of compromised communication or client 'noncompliance', rather than the cultural norms and
imperatives embedded in the rehabilitation programme's philosophy
and mandate. Rehabilitation professionals may need to examine the tacit
philosophy and mandates of their own professions to determine how
they resonate and agree with their clients' cultural values and norms
around health and wellbeing. Cultural competence in rehabilitative care
should go beyond merely understanding and being sensitive to the cultural features of the client. Cultural competence should also include an
understanding of the cultural nature of one's own health profession
(Iwama 2003). Rehabilitation mandates and the classification systems
they employ may need to be scrutinised and thoughtfully considered
from the client perspective as health professionals and policy makers
endeavour to guide and manage the care of populations.
If we allow a broader definition of culture that transcends race and
ethnicity and recognise it as shared experiences giving rise to common
meanings and understandings of phenomena and objects around us,
then we can begin to appreciate that each of our health disciplines that
make up an interdisciplinary approach possesses its own culturally and
contextually bound ideology, structure, content and approaches. In this
way, rehabilitation professions, such as medicine or occupational therapy, can be also viewed as having a particular culture. Each possesses, in
their worlds, a shared specialised language, tacit rules of conduct in carrying out its activities, established social practices that follow a pattern
that help to identify its members from other professionals, and certain
institutional conditions of knowledge production (Smith 2000) that help
to unify its discourse. Critical examination of the theory of most health
professions will reveal that their existing conceptual models are culturally situated and that their specificity can often, despite best intentions,
unwittingly exclude both clients and therapists who abide in differing
cultural contexts that sit outside of a standard or universally viewed
norm.
Recognising the challenges that culture presents to the discourse on
rehabilitation theory and universal classification systems lends some
support to the need for culturally relevant models. New models may
need to stray from any tendency to impose explanatory frameworks of
health on to populations out of cultural context. If rehabilitation is to
achieve its aims of minimising the effects of disability and enabling people to resume better health states in a proper cultural context, not only
might the forms of practice need to undergo change but also the theoretical frameworks and knowledge systems that drive and inform them.
In this chapter, such a new model originating from an East Asian occupational therapy setting is introduced. What is presented here is not necessarily a new, competing model of rehabilitation practice but rather an
example of how cultural views of reality and wellbeing are tied to and
expressed in theoretical material constructed in a particular context. The
Kawa Model shows a culturally specific way in which disability and
healthy states are considered in a particular dynamic between people
and the contexts in which they live. Such a strikingly different conceptual

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model not only portrays how certain non-Western people can view matters of wellbeing and disability but may aid Western rehabilitation professionals to view the cultural features and biases within their own
conceptual frameworks and classification systems. A conceptual model
based on differing ontology supported by Eastern ways of knowing
offers an alternate perch from which to view and make sense of our conventional approaches founded and refined in explanations of Western
social experience.
Ultimately, the models and theoretical frameworks employed by
rehabilitation professionals to make sense of their clients' worlds of
health and disability and to guide effective and meaningful interventions, should resonate with their clients' views and explanations of
the same.

BEYOND INDIVIDUALISM AND SELF-DETERMINISM:


EMERGING REHABILITATION IMPERATIVES
Self in relation
to environs: a context
for health and wellbeing

Culture can be appreciated at the core of most contemporary conceptual


models of rehabilitation and is particularly observable in how the 'self'
is socially constructed and situated in relation to the surrounding environment (context). The interpretations and meanings we derive through
what we do in the world may vary according to how this dualism is
regarded and understood. The self, in Western social depictions, as evident in current occupational therapy conceptual models such as the
Model of Human Occupation (Kielhofner 2002) and the Canadian Model
of Occupational Performance (Canadian Association of Occupational
Therapists 2003), construe the self as being not only centrally and focally
situated in the centre of the universe but also understood to be rationally
separate and superior in power and status to the environment and
nature. Wellbeing is constructed to be contingent on the extent to which
the self can act on and demonstrate its ability to control one's perceived
circumstances located in the environment. Failure or compromise in controlling the environment is construed in such terms as dysfunction and
disability. These terms are often pejorative because the self is seen to be
falling short of the norm - to be competent, effective and in control. In
these world views, dependency can often represent an undesirable state.
Dependency is often connoted with disability.
With this particular self-agency comes a sense of entitlement to doing
in the present (here and now) that extends temporally into the future
(hence a propensity to set goals). It is not uncommon in many Western
experiences for people to strive to control their immediate circumstances
and to set future objectives in an attempt to control their own destinies.
It should come as little surprise, then, to see that independence, autonomy, egalitarianism and self-determinism are celebrated ideals that point
to a common world view and value pattern shared between mainstream
rehabilitation ideology and the broader Western social contexts that
raised them (Iwama 2004).

Chapter B The Kawa (River) Model

One distinct feature commonly seen in East Asian and Aboriginal


world views is that the 'self' is not central nor unilaterally empowered
but rather construed to be just one of many parts of an inseparable whole
(Bellah 1991, Gustafson 1993). In this view of reality, one does not need
to occupy nor wrest control of anything because, in an integrated view of
self and nature, one is already there among others. Health and disability
states are also not imagined nor believed to be an individual-centred
matter. Life circumstances are dependent on a broader whole, determined by a constellation of factors and elements located both within and
outside the physically defined body. The self is decentralised and not
accorded exclusive privilege to exercise stewardship or unilateral control
over one's environment or circumstances. Hence, conceptual models of
rehabilitation that are based on a tacit understanding of a central individual separate from a discrete environment may not adequately explain
experiences of disability, health and rehabilitation for many who are situated outside mainstream Western social norms.

Self in relation to time:


implications for
rehabilitation

Where and how selfis imagined to be situated in relation to the environment also has a bearing on how views of life and the world are temporally
constructed. In Eastern philosophies and in many Aboriginal narratives,
where self is often not experienced as situated in a central, privileged position of reference, one's temporal orientation tends to coincide with the sensation of being situated in the present, or here-and-now. A state of wellness
is reached when all elements in a frame, including the self, co-exist in
harmony. Disruption of this harmony hampers the collective synergy or
life-flow/ energy. 'Enhancing or restoring harmony' supplants selfdeterminism and unilateral control as the primary purpose for occupational therapy and rehabilitation in many non-Western contexts. This
partially explains why rehabilitation care recipients and therapists situated
outside Western social experience find the core meanings and philosophical reasons behind their rehabilitation treatments difficult at times to
understand and to reconcile to their own realities. The theory and philosophy is perplexing and does not resonate with their own cultural values
and imperatives around wellbeing. In the worst cases, rehabilitative therapies as they are understood in the Western world can appear incongruous and asynchronous with local people's ideas of wellbeing and health.
Not surprisingly then, in these non-Western settings, rehabilitative
approaches such as occupational therapy have been reduced to a more
mechanical and medical definition, and are largely understood and delivered in pathology- or medical illness-focused, recipe-style, interventions
within the contexts of the culture and practices of Western biomedicine.
Owing to the cultural context-bound nature of existing rehabilitation
theory, conceptual models founded on alternative cultural world views are
crucially required but unfortunately have been largely absent until now.

THE KAWA MODEL


Origins

The Kawa Model was raised from an Asian occupational therapy practice
context through a process of qualitative research that took place in the

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late 1990s. Frustrated and discouraged by trying to understand and


apply imported occupational therapy and rehabilitation theory into their
own practices, a group of Japanese occupational therapists decided to
develop their own conceptual model of practice with the help of a Japanese-Canadian occupational therapist-social scientist.
Particularly troubling to these rehabilitation clinicians in Japan were
the rugged-individual-oriented values and social imperatives imbedded
in imported theories, which were difficult to adapt to their own familiar
form of social collectivism. The imported Western ideas were intriguing
at first but all too frequently conflicted with their own value patterns and
social norms around matters of health and wellness in day-to-day experience. The future-oriented, rational explanations of individual agency,
seen in the rehabilitation goals for client autonomy and independence,
were practically impossible for - even offensive to - the local clientele,
which for generations had adhered to a more integrated, naturalistic,
socially interdependent view of reality. Having no existing models that
were culturally relevant to Eastern world views to adapt or use as a base
for an alternative approach, these Japanese occupational therapists proceeded to explore alternative ways to reconcile theory with their practice
realities.
They first attempted to make better translations of the original concepts of existing occupational therapy models ,but ultimately this was
not enough as they began to understand that there were substantial differences in the social and cultural contexts supporting the meanings of
the concepts and principles contained in these models. If the (Western)
meanings and merits of autonomy, self determinism, rugged American
individualism, etc., could not be adequately grasped and imagined from
the (Eastern) experience and vantage of hierarchically structured collectivism, the validity and utility of these theories and the very idea of occupational therapy itself were threatened.
Without theoretical material that made sense to the average Japanese
person's world of everyday experience and meaning, Japanese occupational therapy was on the brink of a professional crisis. An absence of
understandable and culturally meaningful occupational therapy theory
over the span of three decades had resulted in a practice that had become
increasingly reliant on biomechanical and medical-pathology-centred
models. Japanese occupational therapists felt discouraged and disillusioned by what amounted to a profession defined by impairment-centred techniques and assessments. Professional identity and morale were
lagging as occupational therapists had difficulty articulating their roles
on their interdisciplinary rehabilitation teams.
The group set about examining the basis of their practice and began to
work toward developing an alternative model of occupational therapy to
better inform their rehabilitation practice. In the process, they were led
through an exercise of discussing their culturally situated views of what
was essential to their lives, including their sense of wellness and their
definitions and understanding of illness, health and disability. They were
challenged to articulate what they and their clients lived for, what was
essential to life and fulfilment, in order to redefine occupation and

Chapter 8 The Kawa (River) Model


realign the purpose of occupational therapy to matters of essential
importance to the Japanese person's life and world.
The research initially led to a cumbersome representation of their
model along conventional, linear box and arrow structures (Fig. 8.1). At
that early stage, it became readily apparent that there were fundamental
differences in how self and environment were imagined and lived. For a
model to purposely explain self and context, the central placement of a
distinctly defined self adjacent to a separate but distinct environment,
commonly seen in conventional (Western) models, was non-existent.
Further consideration revealed comprehension of self and environment
or context that was more diffuse and inseparably integrated by the
Japanese than by their Western counterparts.
Consistent with a world view that imagined self and the world and all
of its elements as integrated parts of an all-encompassing whole, phenomena as complex as wellbeing and disability could not be adequately
described and explained by linear diagrams that connected rationally
defined categories through logical principles. This Eastern perspective of
wellness and disability states could not be readily contained in and
explained by boxes/categories set in a logical sequence in a rational formula or continuum.
In this initial diagram, what was effectively captured was the interconnectedness of all elements and phenomena in the frame of life experience; that states of wellbeing and disability are neither internally (in the
body) nor externally (in the environment) isolated. The self and environment were inextricably connected in a manner in which a change in one
component would effect a change in the greater whole. Observers who
wonder why there is a Japanese social tendency to conform to group
norms, or to not be the metaphorical nail that stands up (needing to be
hammered down) are encouraged to consider this particular world view,
in which balance and harmony are founded on the integration of all parts
of a dynamic whole.

Figure 8.1 Initial attemptat


a Japanese model of occupational therapy.

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Although this framework effectively represented the East Asian conceptualisation of a diffuse self, unified, interdependent with and inseparable from other elements in the environment, the form of this
representation still was not considered an adequate portrayal of Eastern
views of life. During a subsequent session, the research participants
decided to employ a metaphor of nature (a river, or kawa in Japanese) to
better explain the dynamic and fluid nature of the model. The use of such
a metaphor contrasted dramatically with the familiar mechanical and
'system' metaphors frequently employed in the construction of Western
conceptual models.

Structure and
components of the
Kawa Model

Figure 8.2 Life is like a river,


flowing from birth to end of
life.

The complex dynamic that characterises an Eastern perspective of harmony in life experience between self and context might be best explained
through a familiar metaphor (Lakoff et al 1980) of nature. Life is a complex, profound journey that flows through time and space, like a river
(Fig. 8.2). An optimal state of wellbeing in one's life, or river, can be
metaphorically portrayed by an image of strong, deep, unimpeded flow.
Aspects of the environment and phenomenal circumstances, like certain
structures found in a river, can influence and affect that flow. Rocks (life
circumstances), walls and bottom (environment), driftwood (assets and
liabilities) are all inseparable parts of a river that determine its boundaries, shape, flow rate and overall quality (Fig. 8.3). Occupational therapy's purpose, then, in concert with an interdisciplinary rehabilitation
mandate, is to enable and enhance life flow by enhancing harmony
(between all elements that form the overall context).

Chapter 8 The Kawa (River) Model

Figure 8.3 At any given


point along its continuum,
a cross-section of the river
can be considered, to
understand life's condition
from the client's vantage
point. The quality of water
flow is affected by the river
walls and bottom, rocks
and driftwood. Whenever
there is a need to enhance
life flow, there is a need
for occupational therapy.

Water (mizu)

MizlI - Japanese for 'water', metaphorically represents the subject's life

energy or life flow. Fluid, pure, spirit, filling, cleansing and renewing, are
only some of the meanings and functions commonly associated with this
natural element. Just as people's lives are bounded and shaped by their
surroundings, people and circumstances, the water flowing as a river
touches the rocks, sides and banks and all other elements that form its
context. Water envelopes, defines and affects these other elements of the
river in a similar way to which the same elements affect the water's volume, shape and flow rate.
When life energy or the water flow weakens, the client - whether
individually or collectively defined - can be described as unwell, or in
a state of disharmony. When it stops flowing altogether, as when the
river releases into a vast ocean, end of life is reached.
Just as water is fluid and adopts its form from its container, people in
many collectively oriented societies often interpret the social as a shaper
of individual self. Sharing a view of the cosmos that embeds the self inextricably within the environment, collectively oriented people tend to
place enormous value on the self embedded in relationships. There is
greater value in 'belonging' and 'interdependence' than in unilateral
agency and in individual determinism (Nakane 1970, Doi 1973, Lebra
1976). In such experience, the interdependent self is deeply influenced
and even determined by the surrounding social context, at a given time
and place, in a similar way to that in which water in a river, at any given
point, varies in form, flow direction, rate volume and clarity. The 'driving force' of one's life is interconnected with others sharing the same
social frame or ba (Nakane 1970), in a similar way in which water is seen
to touch, connect and relate all elements of a river that have varying
effect upon its form and flow.
With so much focused on the independent and agent self, there may
be a tendency to overlook or underestimate the importance that place
and context plays in determining the form, functions and meanings of

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human occupation. From the vantage of the Kawa Model, a subject's state
of wellbeing coincides with life-flow. Occupational therapy's and rehabilitation's overall purpose in this context is to enhance life flow, regardless of whether it is interpreted at the level of the individual, institution,
organisation, community or society. Just as there are constellations of
inter-related factors/structures in a river that affect its flow, a rich combination of internal and external circumstances and structures in
a client's life context inextricably determine his or her life flow.

River side-walls and river


bottom (kawa
no soku-heki and kawa
no zoko)

The river's sides and bottom, referred to in the Japanese lexicon respectively as kawa no soku-heki and kawa no zoko, are the structures/concepts
from the river metaphor that represent the client's environment. These
are perhaps the most important determinants of a person's life flow in
a collectivist social context because of the primacy accorded to the environmental context in determining the construction of self, experience of
being and subsequent meanings of personal action. In the Kawa Model,
the river walls and sides represent the subject's social context - mainly
those people who share a direct relationship with the subject. Depending
upon which social frame is perceived as being most important in a given
instance and place, the river sides and bottom can represent family members, workmates, friends in a recreational club, classmates, etc. In certain
non-Western societies, such as that of Japan, social relationships are
regarded to be the central determinant (Nakane1970) of individual and
collective life flow.
Aspects of the surrounding social frame on the subject can affect the
overall flow (volume and rate) of the kawa. Harmonious relationships
can enable and complement life flow. Increased flow can have an agent
effect upon difficult circumstances and problems as the force of water
displaces rocks in the channel and even creates new courses through
which to flow. Conversely, a decrease in flow volume can exert a compounding, negative effect on the other elements that take up space in the
channel (Fig. 8.4). If there are obstructions (rocks and driftwood) in
the watercourse when the river walls and bottom are thick and constricting, the flow of the river is especially compromised. As can readily
be imagined, the rocks in this river can directly butt up against the river
walls and bottom, compounding and creating larger impediments to the
river's usual flow. When applying the Kawa Model in collectivistoriented populations, these components and the perceptions of their
importance are paramount.
Like all other elements of the river, these concepts are always interpreted in relation to the whole, taking into consideration all other elements
of the subject's context and their interrelations/interdependencies.

Rocks {iwa}

lwa (Japanese for large rocks or crags) represent discrete circumstances


that are considered to be impediments to one's life flow. They are life circumstances perceived by the client to be problematic and difficult to
remove. Every rock, like every life circumstance, has a unique size, density, shape, colour and texture. Most rivers, like people's lives, have such
rocks or impediments, of varying quality and number. Large rocks, by

Chapter 8 The Kawa (River) Model

Figure 8.4 The shape and


status of the water, or life flow,
is determined by the compounding interplay of rocks
(problems), driftwood
(assets/liabilities) and the river
walls and floor (environment).
Rocks increase in size, shape
and number, situated along
a dynamic, enclosing environment, trapping driftwood, Life
flow is compromised, indicating
a need for occupational therapy.

themselves or in combination with other rocks, jammed directly or indirectly against the river walls and sides (environment) can profoundly
impede and obstruct flow. The client's rocks may have been there since
the beginning, as with congenital conditions. They may appear instantaneously, as in sudden illness or injury, and even be transient.
The impeding effect of rocks can be compounded when they are situated against the river's sides and walls (environment). A person's bodily
impairment becomes disabling when interfaced with the environment.
For example, the functional difficulties associated with a neurological
condition can change according to the environmental context. A (physically) barrier-free environment can decrease one's disability, as can
a social and/ or political/ organisational environment that is accepting of
people with disabling conditions. Once the client's perceived rocks are
known (including their relative size and situation), the therapist can help
to identify potential areas of intervention and strategies to enable better
life flow. The broader contextual definition of disabling circumstances
necessarily brings into play the client's surrounding environment.
Although often limited to narrow, medically oriented interventions in
hospital institutions, occupational therapy intervention can therefore
include treatment strategies that expand beyond the traditional patient
to his or her social network and even to policies and social structures of
the surrounding institution or society that ultimately playa part in setting the disabling context.
The concepts and the contextual application of the Kawa Model are, by
natural design, flexible and adaptable. Each client's unique river takes its
important concepts and configuration from the situation of the subject,
in a given time and place. The definitions of problems and circumstances
are broad - as broad and diverse as the rehabilitation clients' worlds of
meanings. In tum, this particular conceptualisation of people and their
circumstances foreshadows the broad outlook and scope of occupational
therapy interventions when set in particular cultural contexts.

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The subject, be it an individual or a collective, ideally determines specific rocks, their number, magnitude, quality and situation in the river.
As with all other elements of the model, if the client is unable to express
their own river, family members or a community of people connected
with the issues may lend assistance and perspective.

Driftwood (ryuboku)

Ryuboku is Japanese for 'driftwood' and, in the context of the Kawa

Space between
obstructions (sukima);
the promise of
occupational therapy

In the Kawa Model, spaces are the points through which the client's life
energy (water) evidently flows, and these spaces represent 'occupation',
in an East Asian perspective. When the metaphor of a river depicting the
client's life flow becomes clearer, attention turns to the sukima (spaces
between the rocks, driftwood, and river walls and bottom). These
spaces are as important to comprehend in the client's context as are the
other elements of the river when determining how to apply and direct
occupational therapy and rehabilitation. For example, a space between
a functional impairment such as arthritis (an iwa/rock) and a social
group or person (in the river sides and walls) may represent a certain
social role, such as parent, company worker, friend, etc.
Water naturally coursing through these spaces can work to erode
the rocks and river walls and bottom and over time transform them
into larger conduits for life flow (Fig. 8.5). This effect reflects the latent
healing potential that each subject naturally holds within their self and
in the inseparable context. Thus occupational therapy in this perspective retains its hallmark of purposeful activity and working with the
client's abilities and assets. It also directs occupational therapy intervention toward all elements (in this case; a medically defined problem,

Model, represents the subject's personal attributes and resources, such as


values (e.g. honesty, thrift), character (e.g. optimism, stubbornness), personality (e.g. reserved, outgoing), special skill (e.g. carpentry, public
speaking), immaterial assets (e.g. friends, siblings) and material assets
(e.g. wealth, special equipment), which can positively or negatively
affect the subject's circumstance and life flow.
Like driftwood, they are transient in nature and carry a certain quality of fate or serendipity. They can appear to be inconsequential in some
instances and significantly obstructive in others - particularly when they
settle in among rocks and the river-sides and walls. On the other hand,
they can collide with the same structures to nudge obstructions out of the
way. A client's religious faith and sense of determination can be positive
factors in persevering to erode or move rocks out of the way. For example, receiving a monetary gift or donation to acquire specialised assistive
equipment can be the piece of driftwood that collides against existing
flow impediments and opens a greater channel for one's life to flow more
strongly.
Driftwood is a part of everyone's river and often includes those intangible components possessed by each unique rehabilitation client. Effective therapists pay particular attention to these components of a client's
or community's assets and circumstances and consider their real or
potential effect on the client's situation.

Chapter 8 The Kawa (River) Model

Figure 8.5 Sukima/spaces:

potential focal points for occupational therapy. Intervention


can be multifaceted and
include breaking or eroding
away the (medical) problem,
limiting personal liabilities
and/or maximising personal
assets, as well as intervening
on elements of the greater
environment (including the
social and physical). Focusing
water on these objects to erode
or move them is metaphorical
of the client using their own
abilities or 'life force:

various aspects and levels of environment) in the context (see inner


image, Fig. 8.5).
Spaces, then, represent important foci for occupational therapy and
the broader rehabilitation effort. They occur throughout the context of
the self and environs; between the rocks, walls and bottom, and driftwood. Spaces subsume the environment as part of the greater context of
the problem and expands the scope of intervention to naturally integrate
what, in the Western sense, would have been treated separately through
the dualism of internal (pertaining to self and personal attributes) and
external (environment constructed as separate and outside of the self).
Spaces are potential channels for the client's flow, allowing client and
therapist to determine multiple points and levels of intervention
(Fig. 8.5). In this way, each problem or enabling opportunity is bounded
by and appreciated in a broader context.
Rather than attempting to reduce a person's problems to discrete
issues, isolated out of their particular contexts (i.e, focusing only on
rocks), similar to the rational processes in which client problems are identified and discretely named/diagnosed in conventional Western health
practice, the Kawa Model framework compels the occupational therapist
and rehabilitation professional to view and treat issues within a holistic
framework, seeking to appreciate the clients' identified issues within their
integrated, inseparable contexts. Occupation is therefore regarded in
wholes - to include the meaning of the activity to self and community
to which the individual inseparably belongs, and not just in terms of
biomechanical components, or individual pathology and function.
Phenomena and life circumstances rarely occur in isolation. By changing one aspect of the client's world, all other aspects of their river change.
The river's spaces represent opportunities to problem-solve and focus
intervention on positive opportunities, which may have little direct
relation to the person's medically defined condition.

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By using this model, occupational therapists, in partnership with their


clients, are directed to stem further obstruction of life energy / flow and look
for every opportunity in the broader context to enhance it (Figs 8.6, 8.7).

Harmony: the essence


of human occupation
and a reconceptualisation
of rehabilitation

Figure 8.6 Occupational


therapy helps to identify spaces
where water (life force) can
still flow and focuses water
through the spaces, over rocks
(problems/obstacles), driftwood
(resources; liabilities and
assets) and floor/sides (environmental context), eroding
the surfaces and thus increasing life flow.

Figure 8.7 The power of


occupational therapy: increased
life flow. All obstacles may not
have been completely eliminated; some may even have
remained unchanged. however,
life flows more strongly,
despite life's obstacles and
challenges.

What has been described is the underlying ontology of the Kawa framework. The kawa model's central point of reference is not the individual
but rather harmony - a state of individual or collective being in which
the subject, be it self or community, is in balance with the context that it
is a part of. Here, the essence of such harmony is conceptualised as 'life
energy' or 'life flow'. Occupational therapy's purpose, in concert with
the mandate of rehabilitation, is to help the client and community

Chapter 8 The Kawa (River) Model

enhance and balance this flow. In this balance, there is co-existence,


a synergy between elements that affirm interdependence. How can one
come to terms with one's circumstances? How can harmony between the
elements, of which one is merely a part, be realised? How and in what
way can occupational therapists and their interdisciplinary partners
assist this construction of wellbeing?

EMPLOYMENT OF THE KAWA METAPHOR


IN REHABILITATION PRACTICE
The Kawa Model represents a novel addition to conventional occupational therapy conceptual model development in a number of ways. To
begin with, the Kawa Model is explicitly described as a culturally situated
product, having been raised out of an Asian social context. The model is
also peculiar in regard to its structure, diverging from conventional scientific, rational form, taking the shape of a common metaphor of nature.
For many, the river is a familiar metaphor for 'life'. This construct of
life as a fluid continuum situated in nature is congruent with certain
Eastern philosophical and ethical systems such as Buddhism (particularly Mahayana and Zen), Confucianism and Taoism. Similarities and
congruities as well as differences in interpretations of the river metaphor
are bound to exist and will therefore be applicable in one form or another
for some and inappropriate for others. Like people's experiences of wellness and disability, there is no one standard explanation or norm. In
cases where the model cannot be adequately adapted to suit the client's
construction of his or her state of wellbeing, or when the river metaphor
holds less explanatory power in the client's context, the model should be
placed aside for a more fitting alternative. Therefore, all universal
assumptions and proprietary interpretations of the model and its applicability are dismissed, permitting and encouraging occupational therapists to alter and adapt the model in conceptual and structural ways to
match the specific social and cultural contexts of their diverse clients.
Although the Kawa Model may appear to favour Japanese cultural
contexts, it should not be viewed as culturally exclusive. The utility and
safety of this model for varying populations depends on the river
metaphor's familiarity and relevance to its subjects. The Kawa Model has
been introduced to groups of practitioners in a variety of cultural settings
spanning three continents (Okuda et al 2000, Hibino et al 2002, Iwama
et al 2002, Fujimoto et al 2003, Iwama & Fujimoto 2003), with encouraging results. Occupational therapists should view the Kawa Model as
a tool to better understand and appreciate their clients' complex occupational circumstances.
While the benefits of the Kawa Model as an effective tool within occupational therapy are being explored, there is already some evidence
pointing to its interprofessional utility. The power of the river metaphor
is familiar not only to many rehabilitation clients but also to members of
the interdisciplinary rehabilitation care team. As each team member carries his or her own unique professional perspective of the client's issues

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and expertise in helping to ameliorate identified problems, assistance is
sometimes needed to connect each professional vantage and intervention to the client's whole context. Given the highly specialised and complex meanings of concepts in the language of each health-care
profession, a common metaphor that is understandable across health disciplines (and to the client) is potentially useful. How does a physiotherapist understand how their complex cranial-sacral treatment
intervention integrates with what the occupational therapist calls occupational performance, and how does it all fit into the overall context of
the client's return to participation in normal life situations?
Employing a simple metaphor like the Kawa to communicate how
each professional's intervention fits into the client's life situation and
rehabilitation plan can be very useful. The Kawa Model can potentially
tie each rehabilitation professional's mandate into the larger context of
the client's care plan in a client-centred way. Nishihama et al (2002)
found, in their prospective study of three cases where the Kawa Model
was used to discuss and coordinate rehabilitation client issues across
health disciplines, that the river metaphor demonstrated promise as both
a communication and a coordinating tool. Nishihama et al found that not
only did non-occupational-therapists appreciate (some reportedly for the
very first time) occupational therapy's scope of practice and mandate in
these cases, but that the clarification of each profession's role in enhancing the client's 'life flow' resulted in better coordination and service
delivery to the client. Although further studies are warranted to determine whether the use of the Kawa Model results in better rehabilitation
outcomes, the potential use of such models to serve as a common language in explicating the complexities of comprehensive rehabilitation
care to both client and the rehabilitation team should not be overlooked.

A client-centred
perspective and practice

To be truly client-centred, the client's views of their realities and circumstances should not be forced to comply with someone else's manufactured framework of rigid concepts and principles. The therapist using
the Kawa Model recognises, first, the uniqueness of each subject's situation/context. The structure and meanings of the river metaphor take
shape according to the subject's views of their circumstances in a particular cultural context. Rehabilitation professionals may overlook the culturallimitations of conventional client-centred approaches. They should
be aware that client-centred approaches are often shaped and delivered
through an individualist ideology that tacitly advances the ideals of
individual autonomy and self efficacy that is considered normal in Western cultural experience.
Therefore, one uses the Kawa metaphor to derive concepts that are
meaningful and germane to the client's perspective of life and wellbeing.
As the client's unique concepts and issues are determined, the therapist
goes about selecting tools/instruments and methods that will effectively
gather pertinent information. These chosen instruments should also be
culturally safe and non-exploitative. Equipped with the Kawa framework, the occupational therapist does not become dependent on a particular measurement tool or procedure to inform them what their

Chapter 8 The Kawa (River) Model

CASE STUDY SHELLY


Shelly is 27 and works for a law firm in the city. She graduated with a first class honours degree from her
university and is considered a 'high flyer' in her field. Her family are living in Canada and she travels to see
them frequently. She has a wide circle of friends and for the past year has been seeing Jonathan, who works
for the same firm. It was while she was on a winter sports holiday in Europe with Jonathan that she had
a skiing accident, which left her with spinal cord injuries. As a result of this she has a spinal cord lesion at
After spending some time in a European hospital while her condition was stabilised, she has now flown
back to a spinal injuries unit, where she has been receiving rehabilitation. The team working with Shelly
have noticed her becoming more and more withdrawn since her admission, and she has been talking to them
about how hopeless she feels and that she wishes her life would end.

no.

Using the river metaphor as a framework to understand more profoundly the contextual nature of Shelly's
difficulties and challenges from her perspective, we begin to appreciate the multifaceted and complex
dimensions of her experience of life in the present, which will have a profound bearing on her rehabilitation.

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For example, we find that Shelly is consumed by the full impact of her condition on her life and future.
The vibrant and hopeful life she led has been betrayed by this sudden, unforeseeable spinal cord injury and
its overwhelming consequences. While the health team are hard at work stabilising her injury, determining
the extent of her impairment and exploring ways to restore as much functional performance as possible,
Shelly sees her life as she knew and wanted it completely erased, leaving her with a sense of fear, diminished self-esteem and worth, and pessimism about her future life.
Her life energy (water) has been robbed from her; her river increasingly impeded by a host of interrelated,
compounding barriers. Privately, she thinks to herself: 'Will I ever walk again? Who will employ a person in
my condition? Good-bye Jonathan, good-bye to marriage, to children, the lot. How will I live? Will my
friends ... who will want me for a friend? How will I manage from day to day? I'm finished:
Shelly's river (life-force) is flowing weakly. The impedance to flow is due to a complex connection of numerous factors (physical, social, political, medical) that are interconnected.

Using the river framework to explicate the complex context of Shelly's circumstances, the occupational
therapist, together with the team, begins to identify those channels where Shelly's life (water) continues to
flow. These channels are bounded by her perceived problems and challenges (rocks) residual abilities and liabilities (driftwood) and aspects of her physical and social environment (river floor and sides). Intervention,
like Shelly's circumstances, is multifaceted, involving a combination of foci and approaches and the full .
participation of the interdisciplinary team. Rocks, in the immediate time frame, might be eroded through
activities of daily living training and education about her condition. The social. psychological and spiritual
consequences of her spinal cord injury emerge fully from Shelly's river narrative and deserve primary

Chapter 8 The Kawa (River) Model

attention. Profound issues of sexuality and future potential/loss might be approached through psychological
counselling and social work interventions. Walls and bottom might be expanded by family and client discussions to facilitate greater understanding and support for Shelly. Counselling involving Shelly and Jonathan
may be an option.
Special equipment and modifications to Shelly's home environment might be targeted to enable greater
ability. As the river contents and structure expand, the channels become wider and Shelly's life-force is liberated to flow more strongly and fully. The essence of occupational therapy is to enhance life flow. In this way,
occupational therapy is comprehensive, integrated with other rehabilitation services, contextual and clientcentred. As more information emerges about the characteristics of Shelly's river, the intervention becomes
more profound and focused.

This is merely a simplified case vignette to demonstrate the use of the river metaphor. Practitioners
around the world are beginning to find that the model is useful in applications beyond the individual: to
collectives, communities and organisations.

interventions ought to be. Rather, the therapist is challenged and guided


toward understanding the clients' occupational and rehabilitative issues
in their proper context to gain a clearer sense of what needs to be measured and studied further, and why. The instruments and tools are chosen
judiciously according to the requirements of the client's case, in proper
context, set in harmony with the overall rehabilitation mandate.

DISCUSSION
Clients participating in rehabilitation treatment are rarely socially and
culturally homogeneous. Each client brings a unique configuration of
personal attributes coupled with a unique set of contextual conditions.

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Consequently, the formula for wellness and the structure and experience
of disability are just as unique and specific to each client's case. What is
considered to be disabling in one context may be less or more so in
another. Universally applicable theoretical precepts that carry social
imperatives, such as autonomy and independence, or classification systems that reduce the complexities of human experience to rational categories, have their own advantages and disadvantages. On the one hand,
they may help rehabilitation professionals to standardise matters of wellness and disability and help to ensure a better level of care across a broad
international spectrum. However, on the other hand, these classifications
may also lead to disadvantaging those who fall toward the margins or
even outside of a classification framework's normal categories. As rehabilitation practice continues its foray into new cultural frontiers, the
diversity of contexts in which people define what is important and of
value in daily life in relation to their states of wellbeing will only continue to broaden. Beyond race and ethnicity, conditions of poverty, limited access to technology, a global economy, diversity in health policy,
continuation of population migration and deprivation of meaningful
participation in society, to name but a few, represent some real-world
contexts for the lives of millions of people. These increasingly familiar
contexts will challenge the meaning and efficacy of occupational therapy
and the meaning of rehabilitation in this era. Can the ICF adequately
meet these diverse social and cultural conditions?
Culture in the broader sense in which it has been presented in this
chapter may very well be the next hurdle for the ICF to work its way
through. Already, we are seeing the need for alterations to the framework
to accommodate the varying 'cultural' conditions experienced by children (Simeonsson et aI2003). Will advocates for people representing various collective experiences in matters of health and disability also
petition for a more useful and equitable variant of the universal classification framework? Time will tell. In the meantime, models like the Kawa
are offered to help comprehend the particular and culturally specific features of people's disability experiences - particularly for those clients
whose life contexts fall outside the explanatory powers of models
emerged from mainstream Western social contexts.
The Japanese occupational therapists who raised the Kawa Model
from their day-to-day practice seek to remind their international colleagues of the primacy and importance of nature as context, and how
its laws need to be more fundamentally apparent in our epistemology,
theory and practice in rehabilitation. The rhythms and cycles of nature
continue to prevail and have yet to yield to mankind's attempts to transcend and subjugate them. In the Eastern perspective of humanity integrated in nature, occupational therapy may be appreciated less as an
empowerment or enablement of the individual's dominion over nature
and circumstance, but as an empowerment of bringing individuals' life
forces into harmony and better flow with nature and its circumstances.
As long as there is a need for harmony between self and context, there
is then a need for culturally relevant rehabilitation and occupational
therapy.

Chapter 8 The Kawa (River) Model

Along with the acknowledgement of the primacy of nature in human


experience, the Kawa Model also serves as a prototype for a new way of
regarding and employing theoretical material in our rehabilitation professions. In this postmodem era of recognising cultural relativity, variation in world-views and interpretations of life, the notion of one rigid
explanation of function and wellbeing will be increasingly difficult to
retain. The same difficulty applies to occupational therapists and the
meanings of their concept of occupation in a broader sense as it relates to
meaningful activity in daily life. The notion of a universal explanation
for occupation would potentially limit occupational therapy's cultural
relevance and meaning to a narrower exclusive scope of practice. The
same might also apply to other rehabilitation professional groups and
their respective interests.
Occupational therapy and rehabilitation, in an ideal sense, should be as
unique as its clients - changing its form and approach according to the
clients' diverse circumstances and meanings of wellbeing. To move closer
to that ideal, conceptual models and theory in rehabilitation should be
better informed and drawn, at least in part, from diverse social landscapes and profound contents of the therapist-client practice context.

QUESTIONS FOR DISCUSSION


In what ways is culture expressed in your professional practice?
What are some of the cultural features imbedded in the structure and
content in familiar rehabilitation theory and models?
To what extent is culture taken into account in client-centred
approaches in rehabilitation?
Using the river metaphor outlined in this chapter, construct your
own river diagram to depict your current state of being. How might
you adapt elements of your river to enhance your 'life flow'?

References
Bellah R 1991 Beyond belief: essays on religion in
a post traditional world. Harper & Row, New York
Canadian Association of Occupational Therapists
2003 Enabling occupation: an occupational
therapy perspective, 2nd edn. CAOT Publications,
Toronto
Doi T 1973The anatomy of dependence. Kodansha
International, Tokyo
Fujimoto H., Yoshimura N, Iwama M 2003 The Kawa
(River) Model workshop - addressing diversity of
culture in occupational therapy. 3rd Asia Pacific
Occupational Therapy Congress, Singapore
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Hibino K, Tanaka M, Iwama M et al 2002Applying


a new model of Japanese occupational therapy to
a client case of depression. 13th International
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Therapists, Stockholm
Iwama M 2003 The issue is ... toward culturally
relevant epistemologies in occupational therapy.
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Iwama M 2004 Situated meaning: an issue of culture,
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Iwama M Fujimoto H 2003 How does your river flow?


Using a culturally relevant model of occupational
therapy to break through occupational barriers.
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Iwama M, Hatsutori T, Okuda M 2002 Emerging
a culturally and clinically relevant conceptual
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Kielhofner GA 2002 Model of human occupation:
theory and application, 3rd edn. Williams &
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Lakoff G, Johnson M 1980 Metaphors we live by.
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Lebra S 1976Japanese patterns of behavior. University
of Hawaii Press, Honolulu
Nakane C 1970Tate shakai no ningen kankei [Human
relations in a vertical society]. Kodansha, Tokyo

Nishihama M, Koushima H, Iwama M 2002 Explaining


occupational therapy to health teams; benefits of
a culturally relevant model. Poster. 13th
International Congress of the World Federation of
Occupational Therapists, Stockholm
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model of occupational therapy; One; the 'river
model' raised from the clinical setting. Journal of
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Classification of Functioning, Disability and Health.
WHO,Geneva

Chapter

169

The Way Forward


Sally Davis

INTRODUCTION
The aim of this book has been to consider the use of different types of
model in rehabilitation and to identify how they can promote interprofessional working. Perhaps one of the key developments over the last
2 years that is significant to rehabilitation is the revision of the International Classification of Impairments, Disability and Handicaps (World
Health Organization 1980). This has resulted in the ICF: International
Classification of Functioning, Disability and Health (World Health Organization 2002). There is a need for further development of the ICF and
further consideration as to how it can be used in practice. Hopefully this
book will have taken the discussion forward as to how the ICF can be
used in rehabilitation and how it links in with other models looking at
concepts related to rehabilitation. The aim of this chapter is to:
Summarise the main points of the book
Identify areas for future development and research
Identify implications for interprofessional training.

REHABILITATION
One of the issues about rehabilitation is that it is extremely complex, with
a number of concepts impacting on it such as multi- or interdisciplinary
team working, adaptation, health promotion, goal planning, clientcentredness, quality of life, advocacy, empowerment, enablement, independence, occupation. Using one model to guide practice will not pick
up on this complexity. The ICF has value in that it provides rehabilitation
professionals with a structure to consider aspects of the individual in
context, for example body systems, body functions, functional outcomes,
personal factors, environmental factors (Spencer et aI2002). However, it
is limited in that it doesn't take into account the total experience for the
individual (Wade & Halligan 2003). Maybe one of the issues is that the
ICF is a classification rather than a conceptual model. Therefore using

170

Section 3 MODElS IN PRACTICE

the ICF in conjunction with other models can assist rehabilitation professionals to really be holistic practitioners. In my experience there are
areas related to individuals' quality of life that rehabilitation professionals do not address well, for example sexual wellbeing, spirituality, culture and health promotion. Using a combination of models can give
rehabilitation professionals tools and guidance on how to assess and
manage all aspects that will affect an individual's quality of life.
Uniprofessional models are used consistently among the professions;
however, there is little evidence of these models being considered in an
interprofessional way. The way forward perhaps is for us to really consider how models can be used to promote interprofessional working and
used to really address the issues for individuals as they go through the
rehabilitation process. If rehabilitation is to be meaningful for the individual then it is important that professionals are able to recognise what
this means and to consider the concepts that may affect this process. The
ICF goes some way in helping professionals consider not only physical
functioning but also contextual factors in terms of the environment and
attitudes. There is also recognition of personal factors, although it is not
clear what these are. Using other models in conjunction with the ICF can
perhaps highlight what these may be, for example:

The Canadian Model (Ch. 4) considers the impact of occupation on the


individual and what personal factors affect it. It highlights the relationship between the person, environment and occupations they have
and have had. It also identifies spirituality as being that which makes
individuals unique
The Illness Constellation Model (Ch. 5) considers where the individual is
in terms of taking control and seeking closure and where their significant others are in the process. It helps identify what factors personal
to the individual and their family may be impeding or assisting this
process, for example locus of control, coping strategies, roles. It can
also help focus on what motivates the individual and their significant
others
The Ex-PLISSIT Model (Ch. 6) helps identify personal issues for the
individual related to their sexual wellbeing. It also considers the level
of comfortableness for professionals in addressing sensitive issues
Health Promotion Models (Ch. 7) focus on why individuals behave in
certain ways, taking into account their values, sociocultural and religious beliefs. The concepts of empowerment and advocacy are key
The Kawa (River) Model (Ch. 8) considers disability and health states in
a particular dynamic way relating individuals to the cultural context
in which they live. Appreciating the individual's experience from their
perspective enables personal factors to be identified in the context of
their impact for that individual.
One of the difficulties with models is that there is a view that they need
to be followed prescriptively. If models are to assist professionals in their
practice then they need to be appropriate to that practice, which may
mean adapting them or using a combination of models. To consider
which models are suited to different practice settings needs to start with

Chapter 9 The Way Forward

the team considering what their philosophy of practice is. What are their
beliefs around the individual (client), their significant others, the healthcare professional, the environment, rehabilitation? How do these all
interact with each other? It is these elements that most models are developed around. So it makes sense for the team to start from that point and
then to consider which models fit their philosophy. Considering the
question in this way can help the team consider from the outset how they
can use the models to promote interprofessional working. This has been
the rationale for this book in the models chosen. Not only have they been
chosen to reflect different types of model but they have also been chosen
because they reflect my beliefs about rehabilitation - that rehabilitation:

Should be focused on quality of life for the individual


Needs to be delivered using a multi- or interdisciplinary approach
Must include individual-centred goal planning
Needs to be focused on the individual's experience
Needs to consider the context the individual is in, which includes the
cultural and environmental context
Should commence from the acute stage.

Focusing on these beliefs can help rehabilitation professionals move the


focus away from illness and disability to health and wellness. This challenge needs to be embraced, and using a variety of models to consider
different aspects related to health and wellness can assist rehabilitation
professionals in doing this. The ICF perhaps is a move towards this,
although, as the literature highlights (Wade & Halligan 2003), it needs
more development and thought, particularly in how it addresses the concepts of quality of life, motivation and the influence of time on an individual's readiness to participate in the rehabilitation process.
This notion of models not being prescriptive leads on to the consideration of how they may be used in different ways. The PLISSIT model is
a good example of this, being used almost exclusively to consider individuals' sexuality and sexual health-care needs. Yet it could be used just
as well in the areas of loss and adaptation and spirituality, both areas that
rehabilitation professionals may have difficulty in addressing. The extension of the PLISSIT model into the Ex-PLISSIT model is perhaps a good
illustration of how existing models can be used and then developed by
practitioners as a result of evaluation of their use. This identifies the
importance of evaluating the models and adapting them accordingly.
This may be in response to the changes in delivery of rehabilitation, for
example, the move towards community rehabilitation and intermediate
care in the UK.

FUTURE DEVELOPMENT AND RESEARCH


As already stated, there is a need for further development of the ICF,and
already research into the different domains is being conducted
(Heerkens et al 2003, Jette et al 2003, Parenboom & Chorus 2003,
Ogonowski et a12004). This research also needs to address the use of the

171

172

Section 3 MODELS IN PRACTICE

ICF with different diagnostic groups, for example, individuals with


chronic illness, mental illness and acute illness. There is also a need for
further research into interprofessional working in rehabilitation. Interdisciplinary teamwork is identified in the literature as the way forward;
however, there is little research to support its effectiveness. It would be
good to see research into how models can promote interprofessional
working. This would include the use of models seen as uniprofessional,
for example, nursing, occupational therapy models. Perhaps the time has
come to move away from promoting uniprofessional models to considering their use for the whole team. Perhaps the focus should be on how
they can assist the rehabilitation team in meeting the individual's goals
and focus on their quality of life.

IMPLICATIONS FOR INTERPROFESSIONAL TRAINING


Uniprofessional models are considered in the education of health-care
professionals but maybe the focus now needs to be on how models can
promote interprofessional working. In educating rehabilitation professionals, perhaps the place to start is to consider what rehabilitation is
and the concepts it consists of. In my experience of developing and
delivering a Baccalaureate and Masters programme in Rehabilitation
(Box 9.1), I have learnt that rehabilitation professionals do not necessarily consider the theories underpinning it. The rehabilitation module
I deliver as part of both programmes has been evaluated well by rehabilitation professionals from different professional groups as enabling
them to critically discuss rehabilitation concepts in relation to their own
practice and to apply models and theories to their practice. The learning
outcomes and content of the module could be seen as a framework for
promoting interprofessional working in rehabilitation, with models as
a key feature.

CONCLUSION
To enable rehabilitation to be truly focused on the individual, rehabilitation
professionals need to understand the complexity of rehabilitation and know
what toolsare available to help them do this. There are already a number of
models available that help explain different concepts related to rehabilitation and are developed to guide practice. Rehabilitation professionals need
to be creative in how they apply these models and identify how they relate
to their own philosophy of rehabilitation. The ICF is a useful tool for use in
rehabilitation and examples are needed of how it is used in practice. There
is also a need for further research into some of the concepts that underpin
the rehabilitation process, for example interdisciplinary teamwork, quality
of life, adaptation.

Chapter 9 The Way Forward

Learning outcomes
On completion of this module students will be able to:
Critically discuss the implications of rehabilitation definitions, models and theoretical frameworks to practice
Reflect on and critically discuss their own role in rehabilitation
Reflect on and debate interprofessional working taking into account different types of team organisation and the
roles of different disciplines
Critically discuss the psycho-social effects of acute and chronic illness for the individual and their familyand identify
implications for the rehabilitation process taking into account cultural and diversity issues
Critically discuss the evaluation of the effectiveness of rehabilitation
Develop skills of critical appraisal and apply to rehabilitation research
Content
The individual's experience of theprocess: Factors that affect role development, acute versus long-term rehabilitation,
illness versus well ness, where does the individual stop being treated and start being rehabilitated, development and
change of roles from acute care to rehabilitation
What isrehabilitation: Definitions of rehabilitation: conducting a concept analysis to identifyits attributes.
Rehabilitation as a process and philosophy. The stages of rehabilitation
Models andtheories: Examining theoretical frameworks, e.g. systems theory, adaptation theory, motivational theory,
and their relationship to rehabilitation. Critically discussing the ICF in relation to rehabilitation and its relationship to
other models
Assessment in rehabilitation: The role of assessment in rehabilitation. Critically discussing differentassessment tools
and their relevance to rehabilitation practice. Assessment in relation to the ICF and othermodels
The role af health promotion in rehabilitation: Perceptions of health. Health promotion and the use of health
promotion models. The relationship of empowerment to health promotion and rehabilitation
Working in a team: Multidisciplinary, interdisciplinary and transdisciplinary approaches. Advantages and
disadvantages of each approach in relation to rehabilitation practice. Goal planning in the light of teamwork
and rehabilitation
.
Psychosocial effects: Adaptation, coping. Using role-play and then applying that to the Illness Constellation Model.
The professional's role in addressing individual's sexual wellbeing using the Ex-PLISSIT model
Evaluation of rehabilitation: Quality of life in relation to the effectiveness of rehabilitation.

References
Heerkens Y, van der Brug Y, Ten Napel H et al 2003
Past and future use of the lCF (former ImCH) by
nursing and allied health professionals. Disability
and Rehabilitation 25:620-627
Jette AM, Haley SM, Kooyoomjian JT 2003Are the
rCF activity and participation dimensions distinct?
Journal of Rehabilitation Medicine 35:145-149
Ogonowski JA, Kronk RA, Rice CN et al2004 Interrater reliability in assigning ICF codes to children
with disabilities. Disability and Rehabilitation
26:353-361
Orem D 1985 Nursing - concepts and practice, 3rd
edn. Prentice-Hall, London
Parenboom RJM, Chorus AMJ 2003 Measuring
participation according to the international

classification of functioning, disability and health


(ICF). Disability and Rehabilitation 25:577-587
Spencer J, Hersch G, Shelton M et al2002 Functional
outcomes and daily life activities of AfricanAmerican elders after hospitalisation. American
Journal of Occupational Therapy 56:149-159
Wade DT, Halligan P 2003 New wine in old bottles: the
WHO lCF as an explanatory model of human
behaviour. Clinical Rehabilitation 17:349-354
World Health Organization 1980 The international
classification of impairments, disabilities and
handicaps. World Health Organization, Geneva
World Health Organization 2001 International
classification of functioning, disability and health.
World Health Organization, Geneva

173

175

Subject Index

Notes

Page numbers in italics indicate figures and tables. Page numbers in bold indicate major discussions/sections.
In order to save space in the index, the following abbreviations have been used:
CMOP -Canadian Model of Occupational Performance;
ICF -International Classification of Functioning, Disability and Health;
ICIDH -International Classification of Impairment, Disability and Handicap;
OPPM -Occupational Performance Process Model.

A
access issues 36, 51
accident prevention 36
activities of daily living 78
adaptation theory 32, 78, 86
Adaptation through Occupation 76
advocacy 9
aims seegoals (of rehabilitation)
alcoholism 135
American Occupational Therapy
Association 66
arthritis 79
asthma 135
Audit Commission 4
autonomy 9, 13,51,88
philosophical assumptions 53,166
quality of life assessment 20

B
Beattie's Model 139-141, 140,144
biopsychosocial perspectives 147
see also International Classification
of Functioning, Disability and
Health (ICF); Kawa (River)
Model
brain injury (traumatic) 90
seealso neurological rehabilitation
budgets 3-4, 6

c
Canadian Association of Occupational
Therapists 66
Canadian Model of Occupational
Performance (CMOP) xii,65-83,
150
applications 78-81
spinal cord injuries 65, 67-71
seealso Occupational
Performance Process Model
(OPPM)
components 67-71, 68
environment 66, 70-71
occupation 69-70
physical, cognitive and affective
68
historical background 66-67
ICF comparisons 79-81
theoretical perspectives 76-77, 170
Canadian Occupational Performance
Measure (COPM) 66-67, 69
categories 73
efficacy 78--79
seealsoOccupational Performance
Process Model (OPPM)
cancer patients 86
sexual rehabilitation 102, 106, 112
seealso PLISSIT model
capacity 40-44
cardiac rehabilitation 40, 86

models, use of
Ex-PLISSIT 116-122
health promotion 131-132, 138,
141, 143
catheter care 56, 109
cerebral palsy 93
children, ICF functional assessment 33
chronic illness 85-86, 91, 95
seealso Illness Constellation Model
classification systems 148
advantages/ disadvantages 166

seealsospecific systems

client-centred practice 51, 60,162-165


philosophical assumptions 54, 77,
147-149
principles 13
seealsoKawa (River) Model
clinical governance 51, 57

TheClinical Treatment of the Problem


Child77

collaboration 14-17
seealsoprofessional teams
communication 7, 15
Contingency Model of Long-Term
Care 32
continuing professional development
51
coping strategies/styles 32,74,86
Illness Constellation Model 95-97,

96

cultural influences 12-13, 147-151, 166


seealso Kawa (River) Model

176

Subject Index

o
decentralisation (of services) 13
definitions
disability see disability
handicap 25-26
health 20
health promotion 132-133
impairment 25-26
interdisciplinary working 13
models see models
multidisciplinary working 13
occupational performance 66
rehabilitation 8-9, 133
cultural variation 12-13
Kings Fund 9, 13,88
theories 54-55
sexual health 102-103
transdisciplinary working 14
wellness 20, 35,148
cultural variation 151
see also Kawa (River) Model
diabetes 86, 135, 136
disability
definitions
cultural variation 15Q....151
medical model 25-26, 27, 3Q....31,
52
social model 26, 3Q....31
ICIDH classification 24-25
sexual health research 121
social construction of 26,148
disability movement groups 26-27
disciplinary teams 13, 13-14
dualist approach 52

E
elderly rehabilitation 42
chronic illness 86
models, use of, Illness Constellation
Model 90,91,92,94
research 37, 37-39
empowerment 9, 11-12
Health Action Model 142
individual-centred care 13
environment, conceptualisation
CMOP 66, 7Q....71
ICF 30, 34, 40-44
Illness Constellation Model 97
Kawa (River) Model 157
environmental health policy 133
equal opportunities policies 36, 51
Ethical Grid 53
ethical issues 20, 51, 53
ethnic minorities 12-13
evidence-based practice 51, 57, 58
Ex-PLISSITmodel xii, 111,111-122
applications 113-122, 171

cardiac rehabilitation 116-122


interdisciplinary working
116-119,122
training programme
development 125-126
focus 170
ICF, link with 114-116
intervention levels 111-113, 117-119
research studies 12Q....121
seealso PLISSIT model

F
families 36
Four Principles 53
functional assessment 33-34
funding issues 3-4, 6

G
general systems theory 55
goals (of rehabilitation) lQ....13, 34, 91
ICF categories 9, 9
governance 51, 57

H
haemodialysis patients 102
handicap
definition 25-26
ICIDH classification 24-25
head injuries 120
seealso neurological rehabilitation
health
definitions 20
determinants 77
Health Action Model 134, 142, 142-143
Health Belief Model 134
Health Bill (1999) 6
health education 36,132-133
health promotion 131-134,170
definition 132-133
Health Promotion Model 134
health promotion models xi, 35-36,
134-144
Beattie's 139-141, 140,144
congruence 60, 148-149
focus 170
Health Action 134, 142, 142-143
Health Belief 134
interdisciplinary working 144, 144
neurological rehabilitation 35, 35
Stages of Change 135-139,137,144
Theory of Reasoned Action 134
seealso Illness Constellation Model

Healthy People 131

heart attack, sexual rehabilitation 102,


112,116-117

see also PLISSITmodel


history (of rehabilitation) 3-4
HIV 136
holistic perspectives 16, 52
chronic illness 91
ICF 170
Occupational Performance Process
Model 72
sexuality /sexual health 102
see also Kawa (River) Model
Human Occupations Model 66
Huntington's disease 120

ICD (International Classification for


Diseases) 23
ICF seeInternational Classification of
Functioning, Disability and
Health (ICF)
ICIDH see International Classification
of Impairment, Disability and
Handicap (ICIDH)
ICIDH-227
Illness Constellation Model xii, 78,
85-99
applications 89-94, 95-98
coping strategies/styles 95-97, 96
focus 170
ICF relationship 97-98
locus of control 94-95
stages 86-94, 87, 89, 96
Trajectory of Illness Framework,
comparisons 86-87, 88
impairment
definition 25-26
ICIDH classification 24-25
individual-centred care see clientcentred practice
interdisciplinary working 6-7, 13-15,
58, 17Q....171
definition 13
Ex-PLISSITmodel 116-119, 122
health promotion models and 144
Kau~(River)Model 161-162
research 172
International Classification for
Diseases (lCD) 23
International Classification of
Functioning, Disability and
Health (ICF) 23-45
aims xi, 27-28
applications 33-36, 40-44,134
functional assessment 33-34
professionals' surveys 36-39, 37,
38
sexual health assessment 116,
119
categories 9,9,27-31,28,80
sexual health 114-116,115

Subject Index

International Classification of
Functioning, Disability and
Health (ICF) (Continued)
CMOP comparisons 79-81
Ex-PLISSITmodel, link with
114-116,115
history 23-27
Illness Constellation Model
relationship 97-98
limitations 169-170, 171
perspective 12, 31, 147
rationale 31, 80, 147-148
research and development
171-172
theories related to 31-33
value of 169,171
International Classification of
Impairment, Disability and
Handicap (lCIDH) 9, 12,23-27
aims 23-24
applications 25, 34, 37, 39
levels 24
limitations 25-26
revisions 26-27
interprofessional working see
interdisciplinary working

K
Kawa (River) Model xii, 147-168

applications 157, 161-165,


163-165
interdisciplinary working
161-162
origins 151-154, 153
perspective 160, 160-161, 170
structure and components 154,
154-160,155,157,159
Kings Fund, rehabilitation definition
9,13,88
King's Open System Model 32
knowledge base 54-55

L
language use 12, 26
learning theory 55
leisure 36, 69-70
life goals 19-20
locus of control, Illness Constellation
Model 94-95

M
medical model (of disability) 25-26, 27,
30-31,52
mental health disorders 135, 136
mind-body dualism 52

Model of Human Occupation 32, 60,


76,150
'Model of Occupational Performance'
seeCanadian Model of
Occupational Performance
(CMOP)
models 57-61, 147-151
components 59
definitions 52-57
confusion associated 49, 57,
58-60
health promotion see health
promotion models
interdisciplinary working
170-171
nursing 58, 78
problems associated 170-171
research and development 59-60,
172
Ex-PLISSIT 120-121
terminology 49-57
frames of reference 49, 52, 55-56,
60
jargon 59
paradigms 56-57, 60
philosophical assumptions
52-55
range used 50-52
see also theories (of rehabilitation);

specific models

motivational theory 32
multidisciplinary working 6-7, 13-15,
58, 104
definition 13
multiple sclerosis 86, 93
sexual rehabilitation 102,
109
seealso PLISSIT model
myocardial infarction, sexual
rehabilitation 102,112,116-117
see also PLISSIT model

N
National Service Framework for
Coronary Heart Disease
131
National Service Framework for
Mental Health 131
National Service Framework for Older
People 5-7, 95, 131
Neuman's Systems Model 32
neurological rehabilitation 90
health promotion models
35,35
Kawa (FUver) Model 157
professionals' surveys 37, 37-39
NHS Plan 3, 5, 131
nursing
knowledge base 54
models 33, 58, 78

nursing homes, patient privacy issues


107

o
obsessive-compulsive disorder 136
occupational performance 40-44
definition 66
models 78

seealso specific models

Occupational Performance Process


Model (OPPM)
application, spinal cord injuries
71-76
evaluation 75-76
stages 71-76,72
occupational therapy 51, 53, 121
knowledge base 54
occupational therapy process model
see Occupational Performance
Process Model (OPPM)
Orem's model of nursing 33
Oxford Centre for Enablement 123

p
paradigms 56-57
'professional' 60
PEOP (Person-EnvironmentOccupational Performance)
models 78
Person-Environment-Occupational
Performance (PEOP) models
78
PESTLE 15
philosophy (of rehabilitation) 10,51,
52-55,166
client-centred practice 54, 77,
147-149
cultural variation 147-151
physiotherapy 12, 162
knowledge base 54
sexuality /sexual health role 104,
121
PLISSIT model xii, 101-111
applications 101-102, 113, 122-125,
171
Relationship and Sexual Issues
Questionnaire 123,123-125,124,
125
intervention levels 101, 105-110,
123,124
limitations 110-111
seealso Ex-PUSSIT model
policy seesocial policy context
power issues 8, 9
pressure care 56
problem solving 16
'professional paradigm' 60

177

178

Subject Index

professional teams 13-14


definition 13
interdisciplinary see
interdisciplinary working
multidisciplinary 6-7,13-15,58,
104
transdisciplinary 13, 14, 15,58
professional training 57-58,125-126,
172,173
psychosexual therapy 110

Q
quality of life 17-21, 170
assessment 34
autonomy 20
role theory 19, 19-20
as ICF component 18, 18
rehabilitation goals 11

R
reductionism 52
referrals 16
reflective practice 51
'rehab cycle' 8
rehabilitation services, decentralisation
13
'rehabilitative milieu' 12
Relationship and Sexual Issues
Questionnaire, PLISSITmodel
123,123-125,124,125
relationship therapy 110
research and development
elderly rehabilitation 37, 37-39
ICFl71-172
interdisciplinary working 172
models 59-60, 172
Ex-PLISSIT 120-121
sexual health 121
residential care 107
respiratory aspiration 56
rheumatoid arthritis 79
Rogers, Carl 77
role theory 32
quality of life assessment 19, 19-20
Royal College of Nursing, sexual
health definition 103

s
SavingLives: Our Healthier Nation
131
self-actualisation 51
self-care 33, 69-70, 78
self-efficacy 93-94
Sexual Health and Relationships 125
sexuality / sexual health
assessment 116,119

Relationship and Sexual Issues


Questionnaire 123, 123-125, 124,
125
definitions 102-103
ICF categories 114-116, 115
research 121
sexual rehabilitation 102-104, 121
cancer patients 102, 106, 112
see also PLISSlT model
contact details 128-129
Ex-PLISSlTmodel see Ex-PLISSlT
model
PLISSITmodel seePLISSlT model
policy / guidelines 122-123
spinal cord injuries 102, 104, 113,
120
stroke patients 109, 120
training programme development
125-126
sick role 27, 42
smoking cessation, health promotion
models 132, 143
Stages of Change 135, 136, 139
social construction (of disability) 26,
148
social model (of disability) 26, 30-31
social policy context 3-7, 36
seealso National Service
Framework for Older People
social support 93
sociological theory 55
spinal cord injury 43, 93
models, use of
CMOP 65, 67-71
Kawa (River) Model 163-165
OPPM71-76
sexual rehabilitation 102, 104, 113,
120
'spirituality' concept 170
in CMOP 66, 67, 68, 80
stages (of rehabilitation) 10-13,88
Illness Constellation Model see
Illness Constellation Model
Occupational Performance Process
Model seeOccupational
Performance Process Model
(OPPM)
Stages of Change Model 135-139, 137,

144

stoma care 56
Stroke Association 90
stroke rehabilitation 41
models, use of 86
Illness Constellation Model 89,
90,92-94,95-98
professionals' surveys 37, 37-39
quality of life components 18, 18
rehabilitation goals 9, 9
sexuality/sexual health 109, 120
support groups/services, access issues
36
systems theory 31-32

T
teamwork see professional teams
theories (of rehabilitation) 31-33, 78, 86
adaptation 32, 78, 86
definition 54-55
motivational 32
sociological 55
underpinning CMOP 76-77,170
see also models; specific theories
Theory of Reasoned Action 134
training 57-58, 125-126, 172, 173
Trajectory of Illness Framework,
Illness Constellation Model,
comparisons 86-87, 88
transdisciplinary working 13, 14, 15, 58
traumatic brain injury 90
see also neurological rehabilitation
treatment approaches see models

u
Universal Declaration on the Human
Genome and Human Rights 31

w
wellness
definitions 20, 35, 148
cultural variation 151
see also Kawa (River) Model
Illness Constellation Model 87
92-94
r
wheelchair assessment 56
whole-systems working 6-7
World Health Organization (WHO)
health promotion definition 132
ICF see International Classification
of Functioning, Disability and
Health (ICF)
ICIDH seeInternational
Classification of Impairment,
Disability and Handicap
(ICIDH)
sexual health definition 103

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