IMPACT OF ILLNESS/FAMILY ILLNESS TRAJECTORY

Gretchel Carbonell, M.D

Community and family Medicine

Objectives:

 Know the importance of being aware of the impact of illness on the family
 Enumerate the different stages and describe the characteristics of each stage of family illness
trajectory

 Disease

o Primary biologic & psycho-physiologic disorder

 Illness
o Feeling, an experience of unhealthy which is entirely personal, interior to the person
o Deeply embedded in social, cultural and family context

WHY STUDY IMPACT OF ILLNESS

BIOPSYCHOSOCIAL approach to care

 Understand and respond adequately to suffering

 Provide empathy

HOLISTIC CARE

Stress, illness and the family are linked

 Stress frequently follows illness

 Family support protects from stress
 Illness has an effect on the family
 Family has an impact on illness
 Disease is embedded in a whole matrix of difficult family problems that contribute to
the disease process itself
o Poverty, poor nutritional habit, poor education, poor health habits etc.  poor
health outcomes

Illness affects the patient and the family

 Assessment of the impact of illness can help physician

o Plan interventions that can mobilize family
o Help the family to cope and adapt
o Lessen the burden brought about the disease
o Support the patient
Family Illness trajectory
 The natural history of an illness episode or the normal course of the psychosocial aspects of
sickness for the patient and family
 Allows to predict, anticipate and deal with the family’s response to illness
 Enable the physician to formulate specific therapeutic plans

Stages of Family Illness Trajectory

Stage I Onset of Illness

Stage II Reaction to diagnosis (Impact phase)

Stage III Major therapeutic efforts

Stage IV Adjustment to outcomes of disease

Stage V Adjustment to permanency of the outcome

Stage I Onset of Illness

 Prior to contact with medical care providers

 Health belief and previous experiences provide influence to meaning of illness
 Nature of onset may play on an important role on impact of illness on family

Nature of Illness Nature of Onset Impact to family

Acute/rapid illness/Accident Rapid, clear onset  Potential crisis when
resources are limited
 Anxiety
 No time to remain in
uncertainty
 No time to adjust or react
Chronic especially debilitating Gradual onset  Burden  Long term need for
resources
 Anxiety
 Drained
 Uncertain of meaning
of symptoms outcome
of treatment
 Denial seriousness of
illness and possible
complications

Responsibility of Physician:

 Physicians are not actively involved

 Explore routinely the explanatory model and fear that patients bring to the clinical set
up
 o Illness perception
o Awareness/understanding of what is happening
o Explore how the patient and family perceive the illness

EXPLANATORY MODELS OF ILLNESS (DISEASE TRAJECTORY)

 Sudden death – acute life threatening illness require family to act quickly
o It’s easier to deal with this type of illness if resources can support treatment
o Potential crisis if resources are limited

 Frailty- Chronic non progressive illness poses a burden in terms of furnishing resources for long
haul
o But since disease is stable it is not marked by many crisis situations
o
 o
 Chronic debilitating and terminal illness cause greatest degrees of anxiety because they drain
resources and leave the family uncertain as to the potential outcome of the treatment


 

Stage 2 – IMPACT PHASE REACTION TO DIAGNOSIS

 Initial contact with physician

 Reaction/impact depend on
o Understanding
o Awareness
o Perceptions
o Outcome
o Readiness/Preparedness

2 PLANE OR AREAS BY WHICH FAMILY AND PATIENT REACT AND ADJUST

EMOTIONAL PLANE COGNITIVE PLANE

Initial: denial, disbelief and anxiety Phase I: tension and confusion with probable
lack of capacity for problem solving
Strong emotional upheaval – anxiety, anger and Phase II – failure to diagnosis may lead to
depression exacerbation of tension and increase distress
 Resort to prayers
 Earn to capacity to problem-
solve
Accommodation Phase III – increased assessment and
 Patient and receptivity of family new approach for
 the family relieve of distress
learn to >doctor shopping
accommodate >willing and capable for active participation
and accept >realigning roles and expectation, learn new
the diagnosis skills and make adjustment
and can >Willing to accept responsibility
proceed to
therapeutic
management
(or palliative
management)

 Anticipate number of problems and help families to cope and adapt more through family
conferences, discussion with parents
 Specifically:
o Encourage to elucidate clearly to each other the nature of the illness
 Maintains openness
 Allows sharing and support
o Non-sharing and silence
 Limit openness and spontaneity
 Isolation and abandonment

Responsibility of Physician:

 Explore patient and family illness understanding  what they already know, what they want to
know, what they should know, (CEA)
 Assess likely effect/impact of the illness
 Assess capabilities to deal with stress
 Proper disclosure
 Interpret findings
 Disclose properly, with empathy and compassion
 Offer advise & encouragement
 Provide support & continuity of care
 Support family’s denial & inability to accept reality
 Plan realistically based on your assessment of prognosis and family capabilities
 Help understand some problems as well as benefits from support of family and friends

STAGE III – MAJOR THERAPEUTIC EFFORTS

 One of the most challenging & rewarding part of medical practice

 Physicians deal multiple variables:
o Works with wishes of patient/family, coordinate all aspects of therapy (specialists,
paramedical support, etc.)
 Period of great mobilization when the family pursues avenues for treatment or palliation
 Good support system and wealth of resources help the family go through this stage
 CRITICAL ISSUES IN CHOOSING THERAPEUTIC PLAN

1. Psychological state and preparedness of the patient and family

a. Belief system and trust
i. Physician should investigate for signs of non-compliance
b. Not emotionally equipped to undertake some form of therapy so other professional
help should be obtained
2. Responsibility of care – made clear and early in the treatment plan
a. Establish and define responsibilities of each party
b. Give realistic role to everyone
3. Cost of therapy  kept at reasonable level
a. Economics status
b. Economic impact of illness
4. Lifestyle and cultural characteristics of a family
5. Effects of hospitalization, surgery and other major therapeutic method
a. Emotionally and/or financially stressful for the patient’s family

Responsibility of Physician:

 Set appropriate goals of care/ treatment plan

 Offer options that are
o Effective, at a cost they can afford
o Acceptable to their belief system
 Remain open and work in harmony with the patient and family
 Deal with multiple variables  consider all factors when planning
 Coordinate all aspects of therapy
 View the patient and family as therapeutically  not merely as recipient of care
 Explore reactions to therapy
(elicit ECM about treatment)

STAGE IV ADJUSTMENT TO OUTCOMES OF DISEASE

 Return role of being sick to some form of recovery or adaptation

 Varies according to the type of outcome anticipated
o Non-fatal, possibly fatal, fatal
o Acute with complete resolution
o Chronic, debilitating, relapsing
 CHRONIC ILLNESS:
o Prolonged fear and anxiety leads to higher incidence of illness in other members of the
family
o Encourage ventilation of feelings, give reassurance and reinforcement of care
 TERMINAL ILLNESS:
o Highly emotional and potentially devastating
o Single most difficult time of the entire illness experience
o If family is functional – members are drawn closer together
o If family is dysfunctional –seed for future family discord and breakdown
STAGE IV EARLY ADJUSTMENT TO OUTCOME - RECOVERY

Responsibility of Physician:

 Deal with immediate effects of trauma

 Alleviate anxiety and assure adequate rest
 Psychological support can be given through understanding and repeated reassurance
 Assist patient & family in relating to health care system
 Aid patient & family in efficient & functional readjustment
 Provide quality care
o Home care is the best & most accepted & least demanding
 Preparation for death (early grief)

“Family is the support you will never have to pay for because come rain or shine, they will be there to
cheer you on with every of your life goals” - anonymous