673548

review-article2016
PMJ0010.1177/0269216316673548Palliative MedicineDuggleby et al.

Review Article

Palliative Medicine

A metasynthesis study of family 1­–15

© The Author(s) 2016
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DOI: 10.1177/0269216316673548

caring for community-dwelling persons pmj.sagepub.com

with advanced cancer at the end of life

Wendy Duggleby1, Jamie Tycholiz2, Lorraine Holtslander3,4,

Peter Hudson5,6,7, Cheryl Nekolaichuk8, Mehrnoush Mirhosseini8,
Jasneet Parmar9,10, Thane Chambers11, Angele Alook12 and Jennifer Swindle1

Abstract
Background: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a
person with advanced cancer.
Aims: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community,
(b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of
their transition experience.
Design: Sandelowski and Barroso’s methodology for synthesizing qualitative research included (a) a comprehensive search of
empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings.
Data sources: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative
studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced
cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English
in any country, and (d) studies published between 2004 and 2014.
Results: A total of 72 studies were included in the metasynthesis. Family caregivers experience a “life transition” whereby their
lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with
their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b)
reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient.
Conclusion: The findings provide a framework to guide the development of supportive programs and future research.

Keywords
Caregivers, transitions, palliative care, community-living, metasynthesis

What is already known about the topic?

•• Family caregivers provide the majority of care to persons at the end of life, with consequences to their own mental and
physical health.
•• Family caregivers perform a range of tasks that are very individualized and range from practical management of day-to-day
affairs and the coordination of appointments and care needs to more quasi-medical care interventions and assessments.

1Faculty of Nursing, University of Alberta, Edmonton, AB, Canada 9Department of Family Medicine, University of Alberta, Edmonton, AB,
2Strategic Planning and Policy Development, Alberta Health, Edmonton, Canada
AB, Canada 10Network of Excellence in Seniors’ Health and Wellness, Covenant
3College of Nursing, University of Saskatchewan, Saskatoon, SK, Canada Health, Knoxville, TN, USA
4University of the Witwatersrand, Johannesburg, South Africa 11University of Alberta Libraries, Edmonton, AB, Canada
5Centre for Palliative Care, St Vincent’s Hospital Melbourne, Fitzroy, 12Alberta Union of Provincial Employees, Edmonton, AB, Canada

VIC, Australia
6The University of Melbourne, Melbourne, VIC, Australia Corresponding author:
7Palliative Care, Queen’s University Belfast, Belfast, UK Wendy Duggleby, Faculty of Nursing, University of Alberta, ECHA 3rd
8Division of Palliative Care Medicine, Department of Oncology, floor, 11405-87th ave, Edmonton, AB T6G 1C9, Canada.
University of Alberta, Edmonton, AB, Canada Email: [email protected]
2 Palliative Medicine

•• Typically support services are designed within the context of health and social care programs with the aim of monitoring
outcomes for the care recipient. Caregivers themselves are not formally assessed for their health status, their social
supports, relationship to the care recipient, and other practical elements.

What this paper adds?

•• Family caregivers must “come to terms” with their situation before they are able to connect with information and resources.
•• If family caregivers are able to redefine their reality, then they are able to maintain their personhood, self-efficacy, hope,
and prepare for the next significant transition (i.e. the death of their care recipient).
•• Caregivers are supported through the life-altering transition experience by timely communication/information, support-
ive networks, and positive attitudes toward caregiving.

Implications for practice, theory, or policy

•• Programs and interventions should be designed to support caregivers to “redefine normal” to achieve positive out-
comes. This includes using the framework developed in this paper to evaluate programs and information that should
cover all areas included in the framework to help caregivers.
•• Priority should be given to identifying “disruptions” that may ultimately impact the caregivers’ ability to transition and
maintain their role as caregivers.

Background
Research studies have clearly established the significant con- persons at the end of life.3,24–26 The findings from these
tributions family caregivers make to end-of-life care, the studies suggest caregivers experienced disruptions in their
negative consequences associated with caring, and their need environment, roles and relationships, and physical and
for support.1–3 Family caregivers were broadly defined as mental health that result in feelings of uncertainty and dis-
family and friends who provide unpaid ongoing assistance to tress.3,24–26 Two of these four studies focused on the transi-
a person at the end of life. With recognition of the impor- tion to end-of-life caregiving,25,26 one on transitions when
tance of caregiving to cancer patients, there has been a sig- the person they were caring for was receiving palliative
nificant growth in research in this area.3,4 Several systematic care24 and one through all stages of caregiving including
reviews of qualitative and quantitative research studies of bereavement.3 Although these studies provide an initial
family caregivers of persons at the end of life have been pub- understanding of transitions of family caregivers of per-
lished.1,2,5–23 Of these, eight synthesized the findings from sons with advanced cancer, more knowledge is needed
qualitative studies and focused on reviews focused on qual- about this complex experience to determine the most
ity of life,23 information needs,11,15 distress,13 experience of effective ways to support these caregivers.
caregiving,2,18 existential concerns,19 and unmet needs.21 Metasynthesis is a method that has been used suc-
Even though caregivers of persons at the end of life experi- cessfully to extend our knowledge in a complex area.
ence multiple, concurrent transitions that impact their physi- This method brings together qualitative exploratory
cal and mental health,3,24–26 none have focused specifically studies to enhance their contribution to the development
on describing the transitions experienced by caregivers of of more formalized knowledge.31 Metasynthesis of qual-
persons at the end of life living in the home. itative exploratory studies results in conceptual frame-
Transitions are significant life events that require a new works that can guide future studies and development of
situation or circumstance to be incorporated into a person’s programs.32 A metasynthesis study of the transition
life.27,28 There are several theories of transitions in the litera- experience of caregivers of persons at the end of life
ture.28–30 Common concepts shared by these theories are that would synthesize the qualitative data on transitions
transitions are a psychosocial process through which per- embedded within the qualitative experience. By synthe-
sons deal with significant changes (developmental, organi- sizing these qualitative findings, we can honor the voices
zational, or situational). They also suggest that individuals of caregivers and develop a transitions conceptual
can deal with the challenges associated with transitions framework that reflects their needs and wants.33
when they receive support.28 Finding the best way to sup-
port family caregivers of persons at the end of life living in
Aims
the home as they experience transitions would inform pro-
grams and interventions. The aims of this metasynthesis study were to (a) explore
We are aware of only four published studies that have the transition experience of family caregivers caring for
focused on the transition experience of caregivers of persons with advanced cancer receiving palliative/hospice
Duggleby et al. 3

care and living in the community, (b) describe potential Search outcomes
triggers for transitions, (c) identify what influences this
experience, and (d) develop a conceptual framework of Figure 1 outlines the results of the search. Literature
their transition experience. searches yielded 15,472 results, of which 6575 were
duplicates. Based on the review of titles and abstracts,
8709 articles were excluded because they did not meet the
Design inclusion criteria. A total of 219 full text articles were
A metasynthesis of qualitative research studies on family downloaded and screened to determine inclusion. Of
caregivers of persons with advanced cancer living in the these, 147 were excluded based on inclusion criteria.
community was completed using the procedures outlined Ultimately, 72 full text articles (Table 1) were included in
by Sandelowski and Barroso.34 The procedural steps were the metasynthesis.
as follows: (a) comprehensive search, (b) appraising
reports of qualitative studies, (c) classification of studies, Quality appraisal
and d) synthesis of the findings. Qualitative studies were evaluated for their quality using
the Critical Appraisal Skills Program (CASP). CASP is a
Data sources tool that provides a standardized mechanism for apprais-
ing qualitative studies using metasynthesis,103 where a
The research team met with an experienced librarian to higher CASP score indicates higher study quality (maxi-
determine the search terms. The librarian then searched mum score is 24). Studies were not excluded based on the
MEDLINE, Embase, PsycINFO, CINAHL, and Web of CASP score, but the scores were used to describe the qual-
Science using key search terms and subject headings for ity of the studies. The mean CASP score was 18.67 (stand-
caregivers, carers, family, friends, significant other, ter- ard deviation (SD) = 2.49) with a range of 13–23.
minal illness, palliative, and end of life. A qualitative and
mixed-methods (combined quantitative and qualitative)
study filter was also used to exclude other types of study Data abstraction and synthesis
design from the search. Depending on the database and The studies reviewed used a variety of qualitative
controlled vocabularies available, each search was modi- approaches. Grounded theory was used most frequently
fied using a combination of subject headings/key words (18/72 = 25%) followed by phenomenology (17/72) and
as appropriate for each database. The search was initially thematic analysis (11/72). Ten utilized a descriptive qual-
completed including all diseases, but because of the large itative approach, eight content analysis, three narrative
volume of studies retrieved, the team decided to focus on inquiry, three ethnography, and two mixed methods. If no
those caring for persons with advanced cancer. In addi- information was provided regarding the qualitative
tion the research team had identified published research approach used, studies were classified as descriptive
articles for potential inclusion in the metasynthesis (other studies.
sources). Using Sandelowski and Barroso’s34 classification sys-
Titles and abstracts were then examined to determine tem, study methodologies were categorized based on the
whether the articles met the inclusion criteria. Inclusion actual analytical work performed rather than what was
criteria for the studies were as follows: (a) published quali- stated by the authors in the articles. Of these 72 articles, 36
tative studies (and mixed-method designs) of the caregiv- (50%) were classified as Thematic Survey, 22 (30.6%)
ing experience of family caregivers of community-living were Conceptual/Thematic Description, and 14 (19.4%)
persons with advanced cancer at the end of life, (b) partici- were Interpretive Explanation. Topical Surveys would
pants (caregivers and care recipients) of 18 years of age have been excluded as suggested by Sandelowski and
and above, (c) studies published in English in any country, Barroso, and none of the studies were categorized as such.
and (d) studies published between 2004 and 2014. Family The reported findings from the articles were entered
caregivers were broadly defined as family and friends who into NVivo 10 software for qualitative analysis. Synthesis
provide unpaid ongoing assistance to a person at the end of of the findings occurred by reading the findings as a whole,
life. End of life was defined broadly and included those as well as team discussion to identify concepts using taxo-
receiving hospice/palliative care. nomic analysis. The purpose of the taxonomic analysis
Excluded were abstracts, metasyntheses, and second- was to identify significant underlying concepts and con-
ary analysis. Also excluded were findings involving for- ceptual relationships. Using constant comparative analysis
mal caregivers (i.e. healthcare professionals) and relationships among the interpreted concepts were identi-
bereaved caregivers. Bereaved caregivers were excluded fied. The final stage was reciprocal translation. In this
as the focus of this study was on the experience of family stage of analysis, a concept to integrate the metasynthesis
caregivers who were actively caring for a person with findings was imported from the literature (in this case,
advanced cancer in the community. “Life Transition”).30
4 Palliative Medicine

Figure 1.  PRISMA flow chart search results.

PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Descriptive validity for this metasynthesis was main- 70.6%) compared to males (n = 359; 22.9%), and infor-
tained in a variety of ways. First, a comprehensive search mation on the remaining few were not reported. The
for literature was completed with team discussion and majority of the studies were conducted in the USA (22/72;
decisions on search terms and inclusion criteria. Appraisals 30%), Canada (17/72; 23.6%), and the UK (16/72;
and assigned CASP scores of all included studies were 22.2%), with the remainder from Sweden (9/72; 12.5%),
then completed by two members of the team. An audit trail Australia (5/72; 6.9%), Demark (1/72), Brazil (1/72), and
of search results and decisions was kept. Switzerland (1/72).

Results Caregiving: a life transition

The 72 articles included a total of 1565 caregivers of Caregivers of persons with advanced cancer living in the
which 767 were spouses (49%), 332 adult children (21%), community experience multiple, concurrent transitions that
134 siblings (8%), 107 other relatives (6 %), 52 parents result in a disruption of their reality3,24–26 Caregivers
(3%), 25 friends (1%), and 5 grandchildren (0.3%); the described their transition experiences as a “ hurricane,”68
relationship for the remaining 344 (22%) was not stated. “chaos,”51 and “ turmoil”81 (p. 328). As one caregiver stated,
The mean age of the caregivers was 58.57 (SD = 6.46; This cancer has been a total disruption of my life (p. 325).63
range 44.9–73.8) years and of care recipients 70.58 (SD Several of the studies reported findings of “loss of nor-
= 7.96) years. Most caregivers were females (n = 1105; mal.”3,49,63,71,77–80 This suggests that caregivers of persons
Table 1.  Articles included in metasynthesis.
Source Objective Methodology Data collection method CASP total Finding classification

Alexander35 (Australia) The purpose of this study was to investigate the lived experience of MW from the Hermeneutic phenomenology. Unstructured, open-ended 18 Thematic Survey
perspectives of those living it Thematic analysis interviews. Narrative interviews
Anngela-Cole and Busch36 This study addressed the relationship among stress, anticipatory mourning, and cultural A qualitative phenomenological Focus-group interviews 20 Conceptual/Thematic
Duggleby et al.

(USA) beliefs, practices, and values among family caregivers from independent and interdependent approach. Thematic analysis Description
cultural groups, among caregivers to older adult family members with cancer
Arber et al.37 (UK) The purpose of this qualitative study was to examine the support needs of carers of those Grounded theory Semi-structured interviews. 20 Thematic Survey
with a primary malignant brain tumor Open-ended questions
Arber and Venn38 (UK) The aim of this article was to (a) provide subjective understandings of the ways that carers Thematic analysis In-depth, semi-structured 18 Conceptual/Thematic
manage the night-time, and the nature of sleep disruptions from caregiving and (b) assess interviews Description
the appropriateness of Bianchera and Arber’s (2007) typology of night-time caregiving
Benzar et al.39 (USA) The aim of this study was to identify the range of healthcare experiences of family Qualitative description Semi-structured interviews 14 Thematic Survey
caregivers and patients who received PCTs after they left the hospital and to understand
how PCTs might best prepare patients and caregivers for the post-hospital experience
Benzein and Saveman40 The objective was to describe couples’ experiences of participating in nurse-initiated Content analysis Semi-structured interviews 20 Conceptual/Thematic
(Sweden) health-promoting conversations about hope and suffering during home-based palliative care Description
Bialon and Coke41 (USA) The purpose of this qualitative study was to explore factors impacting caregiver burden Phenomenological method Face-to-face interviews 19 Thematic Survey
and to explore possible solutions for family caregivers of terminally ill patients
Braun et al.42 (USA) The objectives of this study were to describe the self-reported experience of African Content analysis Focus-group interviews 20 Thematic Survey
American, Caucasian, and Hispanic surrogate decision-makers of seriously ill patients and
to examine the relationship of race, ethnicity, and culture to that experience
Cagle and Kovacs43 (USA) This study examined the perceptions of preparedness and support of informal caregivers of Quantitative and qualitative Written narrative responses to 18 Thematic Survey
hospice oncology patients. Respondents included co-residing, proximate, and long-distance design. Qualitative utilized qualitative prompt
caregivers thematic analysis
Cavers et al.44 (UK) This study investigated how people experience and deal with a diagnosis of glioma and Grounded theory In-depth interviews. Serial 19 Thematic Survey
the associated transition toward death in an effort to understand the issues patients and interviews over 2 years
caregivers face and the support they need
Chattoo and Ahmad45 The purpose of this study was to explore the dichotomous carer/care-recipient Comparative method Observations and in-depth 17 Conceptual/Thematic
(UK) relationship interviews Description
Cherlin et al.46 (USA) The objective was to examine physician–family caregiver communication at EOL Descriptive phenomenology Open-ended, qualitative 16 Topical Survey
interviews
Clayton et al.47 (Australia) The aim of this study was to explore by whom, how, and when discussions about prognosis Qualitative research methods Focus groups and individual, 19 Thematic Survey
and end-of-life issues should be initiated with terminally ill patients and the context in semi-structured interviews
which these issues can be optimally discussed
Cowan48 (UK) This project aimed to explore and understand the experiences of the Sikh population Interpretative phenomenology Semi-structured interviews 21 Thematic Survey
of South East England when caring for a dying relative at home without support from
specialist palliative care services
Dahlborg and Lindahl49 The aim of this study was to describe and interpret the meaning of being the primary Phenomenological hermeneutic In-depth interviews using a 22 Interpretive Explanation
(Sweden) caregiver of a close one who is terminally ill method narrative approach
Donovan et al.50 (Canada) The purpose of this study was to examine the ways in which cultural factors influence the Qualitative longitudinal In-depth, face-to-face interviews, 22 Thematic Survey
experience of Dutch Reformed family caregivers in southern Ontario who are providing methods observations, and photography
palliative/end-of-life care in the home in order to understand how best to support them,
the patient, and their families
Duggleby et al.24 (Canada) The study aimed to (a) describe the experience of significant transitions experienced by Grounded theory Open-ended, in-depth interviews 22 Interpretive Explanation
older rural persons who were receiving palliative home care and their families and (b) with patients and families. Focus-
develop a substantive theory of transitions in this population group interviews with healthcare
providers
Duggleby et al.51 (Canada) The purpose of this article was to describe the experience of family caregivers of Narrative inquiry and poetic Directed written journaling 21 Interpretive Explanation
persons with advanced cancer by reporting the findings of a planned narrative analysis of transcription exercises
participants’ journals collected as part of a pilot study

(Continued)
5
 6
Table 1. (Continued)
Source Objective Methodology Data collection method CASP total Finding classification

Edwards et al.52 (Canada) The aim of this study was to understand the decision-making process that occurs between Grounded theory Unstructured, open-ended 17 Interpretive Explanation
a dying individual and his or her family caregiver interviews
Esbensen and Thomé53 The aim of the study was to illuminate the experience of being next of kin of an elderly Content analysis Open-ended interviews 15 Conceptual/Thematic
(Denmark) person with cancer Description
Forbat et al.54 (UK) The study examined the expressed support needs of caregivers whose relative was Thematic analysis Semi-structured interviews with 15 Thematic Survey
receiving palliative care open-ended questions
Foxwell and Scott55 (UK) The aim of this exploratory qualitative study was to investigate how patients with terminal Cross-sectional qualitative Individual, in-depth, semi- 20 Conceptual/Thematic
HNC and their caregivers cope with their concerns and needs, with consideration on how design. Framework analysis structured interviews
they cope together and apart
Gardner and Kramer56 This study examined the end-of-life challenges, concerns, and care preferences of Thematic analysis Semi-structured, face-to-face 17 Thematic Survey
(USA) terminally ill elders and their family caregivers, with a focus on areas of congruence and interviews
incongruence
Griebeler et al.57 (Brazil) The aim of this study was to describe how the family caregiver builds social representations Content analysis Narrative interviews 19 Thematic Survey
of home care in terminal cases
Gysels and Higginson58 The study objective was to investigate the caring experience of carers for patients with Grounded theory Semi-structured, in-depth 19 Thematic Survey
(UK) an advanced progressive illness (COPD, heart failure, cancer, or MND) who suffer from interviews
breathlessness
Harding et al.59 (UK) This study aimed to generate qualitative data that would give the required understanding of Cross-sectional qualitative Flexible, open-ended, semi- 17 Thematic Survey
caregivers’ specific support needs and the challenges to providing informal home care to a methodology. Thematic analysis structured interviews
relative or friend with advanced cancer
Harrop et al.60 (UK) The aim of the study was to explore the information and support needs of family carers, as A critical realist approach. Focus groups 22 Conceptual/Thematic
perceived by carers and nursing staff Thematic analysis Description
Hebert et al.61 (USA) The objective of this study was to determine what questions caregivers believe are Qualitative methodology Ethnographic interviews and 21 Topical Survey
important to discuss with healthcare providers in order to prepare for the death of a loved focus groups
one
Holtslander et al.62 This study aims to (a) describe hope experience for this population, (b) develop theoretical Grounded theory Open-ended interviews, field 21 Interpretive Explanation
(Canada) analysis, and (c) develop statements about relationships between concepts of basic social notes, and journaling
processes of the hope experience
Houldin63 (USA) The purpose of the study was to report on a descriptive, qualitative study of caregivers Content analysis Semi-structured interviews 14 Conceptual/Thematic
of patients newly diagnosed with advanced colorectal cancer, with a focus on caregiver Description
experiences of living with a person with colorectal cancer, effect on daily living, coping
strategies used, and effect on children
Hudson64 (Australia) This study explored the challenges and positive aspects associated with supporting a Thematic analysis Semi-structured interviews 17 Thematic Survey
relative or friend dying of cancer at home
Jo et al.65 (Canada) The purpose of this study was to examine the perspectives of both the spousal caregiver Qualitative research strategy Face-to-face semi-structured 18 Thematic Survey
and care recipient on the caregiving experience in home-based palliative care interviews
Kazanowski66 (USA) The purpose of this study was to understand the process of medication management of Grounded theory Semi-structured interviews 13 Interpretive Explanation
symptoms in near-death patients with terminal cancer at home from the perspective of
family caregivers
Kogan et al.67 (Canada) The purpose of this study was to explore the impact of advanced cancer patients’ denial on Prospective interpretive Semi-structured interviews, field 23 Conceptual/Thematic
their family caregivers and how they cope, in order to enable clinicians to better support descriptive methodology notes, and reflexive journals Description
them and their caregiving
Kukeya68 (USA) The purpose of this study was to obtain firsthand descriptions of personal lived Phenomenology Semi-structured interviews, field 22 Interpretive Explanation
experiences from spouses caring for partners with terminal cancer, focusing on the notes, and observations
perceived meaning these experiences held for them, as well as the impact of caregiving
and the reported unmet needs, challenges, and coping strategies from the caregivers’
perspective
Linderholm and The aim of this study was to explore how the informal carers of a dying relative in palliative Hermeneutic approach Open interviews 20 Interpretive Explanation
Friedrichsen69 (Sweden) home care experienced their caring role and support during the patient’s final illness and
after death
Palliative Medicine
Table 1. (Continued)

Source Objective Methodology Data collection method CASP total Finding classification

Lockie et al.70 (Canada) The aim of this study was to examine the experiences of family palliative caregivers who Qualitative descriptive design In-depth semi-structured 17 Thematic Survey
commute from rural and remote locales with a family member receiving advanced cancer interviews and field notes
Duggleby et al.

care and to broaden our knowledge about the demands of family caregiving in that context
McIlfatrick71 (UK) The aim of the study was to undertake a palliative care needs assessment of the adult Mixed-methods (quantitative Semi-structured interviews and 18 Thematic Survey
population within a geographical area serviced by a healthcare organization in Northern and qualitative) design focus groups
Ireland from the perspectives of patients, informal carers, and healthcare providers
Mehta et al.72 (Canada) The purpose of the study was to describe the types of pain patients in palliative care at Grounded theory Semi-structured interviews and 20 Conceptual/Thematic
home experience and how family caregivers assess them and intervene field notes Description
Melin-Johansson et al.73 The aim of this study was to describe caregivers’ perceptions about terminally ill family Content analysis Repeated focus groups 19 Conceptual/Thematic
(Sweden) members’ QoL when suffering from cancer Description
Milberg and Strang74 The aim of this study was to describe and interpret the content of comprehensibility and Hermeneutics approach Semi-structured interviews 17 Conceptual/Thematic
(Sweden) manageability of cancer patients’ informal carer in advanced palliative home care within Description
Antonovsky’s theory of sense of coherence
Mosher et al.75 (USA) This study aimed to explore caregivers’ key challenges in coping with their family member’s Thematic analysis Semi-structured interviews 18 Thematic Survey
lung cancer
Murray et al.76 (UK) The aim of the study was to explore whether patients with life-threatening illnesses and Qualitative approach. Narrative In-depth interviews and field 16 Thematic Survey
their informal carers consider they experience significant spiritual needs analysis notes
Penner et al.77 (Canada) The aim of the study was to explicate the lived experience of caring for a dysphagic relative Descriptive phenomenological In-depth face-to-face interviews 21 Interpretive Explanation
with advanced head and neck cancer receiving tube feeding approach. Phenomenological and field notes
analysis
Penrod et al.3 (USA) The purpose of this study was to explicate a theoretical model of emic perspectives of the Grounded theory In-depth, unstructured face-to- 22 Interpretive Explanation
phases and transitions of EOL caregiving across complex EOL disease trajectories, from face interviews
pre-diagnosis to bereavement
Persson and Sundin78 The aim of the study was to illuminate the meanings of significant others’ lived experiences Phenomenological hermeneutic Narrative, structured interview 19 Interpretive Explanation
(Sweden) of their situation 6 months after a family member was diagnosed with inoperable lung cancer approach. Thematic analysis
Phillips and Reed79 (USA) The aim of the study was to describe caregivers’ constructions of their caregiving role in Exploratory qualitative method. In-depth, semi-structured 20 Conceptual/Thematic
providing care to elders they knew were dying from life-limiting illnesses Constant comparative analysis interviews and collected, Description
descriptive information
Probst et al.80 The aim of the study was to explore the experiences of carers who care for a loved one Hermeneutic phenomenology. Semi-structured interviews 14 Thematic Survey
(Switzerland) with a fungating breast wound Thematic analysis.
Read and Wuest81 The purpose of this grounded theory study was to explain the domain of daughters’ Grounded theory Interviews 19 Interpretive Explanation
(Canada) caregiving experiences in Newfoundland and Labrador, Canada
Reinke et al.82 (USA) This study sought to explore transitions regarding palliative and end-of-life care from the Grounded theory Semi-structured, in-depth 19 Thematic Survey
perspectives of patients with severe COPD or advanced cancer, their family members, interviews
physicians, and nurses
Revier et al.83 (USA) The aim of the study was to explore the question: What is the meaning of hope for the A qualitative phenomenological Dialogical engagement 21 Conceptual/Thematic
family caregiver in the context of end-of-life care and what nursing actions influence hope? approach Description
Riley and Fenton84 (UK) The aim of the study was to explore carers’ experiences of the emotional impact of caring Qualitative approach. Thematic Semi-structured interview 14 Thematic Survey
for a spouse and their views regarding access to emotional support for themselves content analysis.
Robinson et al.85 (Canada) The aim of the study was to further understand the ways in which we can support the Mixed methods. Qualitative Assessment questionnaire, 20 Thematic Survey
well-being of family caregivers of rural palliative patients, with a particular focus on their data analyzed using a constant semi-structured interviews, and
own needs and self-care comparative analysis field notes
Sand et al.86 (Sweden) The aim of the study was to investigate the question: Why do people in a family choose to Existential hermeneutic In-depth, face-to-face interview 19 Conceptual/Thematic
take responsibility when a member is stricken with a serious disease? approach Description
Sherwood et al.87 (USA) The aim of the study was to explore the positive and negative aspects of providing care for Content analysis Questionnaire with an open-ended 16 Thematic Survey
someone with a primary malignant brain tumor question for a narrative entry
Sjovall et al.88 (Sweden) The aim of the study was to investigate how the life situation of persons with advanced Qualitative with naturalistic Separate, individual interviews 21 Conceptual/Thematic
colorectal cancer and their partners is affected by living with the disease and its treatment inquiry. Content analysis (opening question and follow-up Description
questions, could be called semi-
structured)
7

(Continued)
 8
Table 1. (Continued)
Source Objective Methodology Data collection method CASP total Finding classification

Smith89 (UK) The aim of the study was to consider the development of the role of carer and the support Qualitative with longitudinal Detailed interviews (serial 13 Thematic Survey
needs of the family caregiver in palliative and EOL settings case study approach interviews, four interviews over
4-month period)
Stajduhar et al.90 (Canada) The purpose of the study was to describe, from the perspectives of family caregivers and Ethnographic methodology. Participant observations, field 21 Interpretive Explanation
healthcare providers, the variations in and factors influencing family members’ decisions for Constant comparative analysis notes, and in-depth, open-ended
palliative home care interviews
Stajduhar et al.91 (Canada) The aim of the study was to describe factors that influence family caregivers’ ability to Interpretive descriptive design. Semi-structured interviews 20 Thematic Survey
provide end-of-life cancer care at home Thematic analysis
Stoltz et al.92 (Sweden) The aim of the study was to illuminate the meaning of support as narrated by family carers Phenomenological Unstructured, narrative 22 Conceptual/Thematic
who care for a senior person at home hermeneutical method. interviews Description
Thematic analysis
Stone et al.93 (USA) The aim of the study was to contribute to the literature on informal caregiving by Qualitative. Constant Individual, semi-structured 18 Thematic Survey
expanding the focus beyond spousal relationships to how family members communicate comparative analysis interview
Sutherland25 (Canada) The purpose of this qualitative study was to explore the meaning of being in transition to An interpretive Face-to-face, semi-structured 21 Conceptual/Thematic
end-of-life care among female partners of spouses with cancer phenomenological approach interviews Description
Taylor94 (UK) The aim of the study was to understand people’s experiences of sexuality and intimacy Hermeneutic phenomenological One-to-one, conversational 21 Thematic Survey
when living with a terminal illness study. Iterative approach interviews
Terry et al.95 (Australia) The aim of the study was to describe the concerns of dying patients about the problems Qualitative. Constant Individual interviews with 15 Thematic Survey
they would face as death approached comparative analysis patients (open-ended questions
and probing questions) and focus
groups with caregivers
Teschendorf et al.96 (USA) The aim of the study was to describe informal cancer care provision from the perspective Qualitative (cited Corbin and Focus group 18 Thematic Survey
of the caregiver Strauss (1990), Grounded
theory methods in analysis)
Thomas et al.97 (UK) The aim of the study was to examine the place of death preferences of terminally ill cancer Longitudinal, observational Face-to-face, in-depth interviews 17 Thematic Survey
patients and their informal carers study using a mixed-methods and telephone-tracking
design. Spatial statistical interviews
analysis. Grounded theory
approach for qualitative design
Turner et al.98 (USA) The aim of the study was to understand the African American caregiving experience in its Qualitative approach. Open-ended, semi-structured 18 Thematic Survey
multiple contexts Grounded theory approach for interviews and focus groups
data analysis
Ugalde et al.99 (Australia) The aim of the study was to explore how caregivers view their role and impact of their Symbolic interactionist In-depth, individual, semi- 18 Conceptual/Thematic
caring through interviews with active and bereaved caregivers framework. Grounded theory. structured interviews Description
Waldrop et al.26 (USA) This study aimed to understand how caregivers make the transition to end-stage caregiving In-depth, qualitative methods. Semi-structured, in-depth 21 Conceptual/Thematic
and to illuminate its unique aspects using a stress process model Grounded theory. interviews Description
Ward-Griffin et al.100 The aim of the study was to examine the relational experiences of providing home-based Focused ethnographic study In-depth, semi-structured 15 Conceptual/Thematic
(Canada) end-of-life care to older adults with advanced cancer from the perspective of family interviews and participant Description
caregivers observation. 4–6 interviews
with each participant (serial
interviews)
Washington101 (USA) The aim of the study was to explore the processes by which family members and friends of Grounded theory. Constant In-depth, face-to-face interviews 18 Interpretive Explanation
hospice patients learned to provide care to their dying loved one comparative analysis
Williams et al.102 (Canada) The purpose of the study was to share, in the form of a story, the experiences of rural Narrative inquiry approach. Daily journal entries 22 Conceptual/Thematic
female caregivers caring for family members with advanced cancer, focusing on what Narrative analysis Description
fosters their hope

CASP: Critical Appraisal Skills Program; COPD: chronic obstructive pulmonary disease; MW: malignant wounds; MND: motor neuron disease; EOL: end of life; PCT: palliative care consultation; HNC: head and neck cancer;
QoL: quality of life.
Palliative Medicine
Duggleby et al. 9

with advanced cancer experience a “life transition” when Crucial events

they become caregivers. Selder30 defined life transition as
the disruption of a persons’ reality that necessitates a perma- Selder30 suggests that events triggering transitions are con-
nent reorganization or reconstructing of his or her existing sidered as crucial events when they are external to the indi-
reality. These transitions were triggered by crucial events. vidual. The crucial events for family caregivers included
Figure 2 (Redefining Normal Conceptual Framework, the following: (a) changes in the condition of the person
explained in detail below) presents the processes through they were caring for (i.e. functional decline/activity limita-
which caregivers experienced and dealt with their transi- tions and acute exacerbation of illness/symptoms), (b)
tions, crucial or triggering events, influencing factors and conflicting demands, (c) family role conflict, and (d)
outcomes. These processes, events, and outcomes were financial strain.
interconnecting and not experienced in a linear manner. Several studies described how the changing symptoms,
treatments, or activities of daily living triggered transitions
for caregivers by causing disruption in their lives.26,44,51,56–
Disruptions 58,64,66,67,71,74,75,81,82,87,97 Caregivers who had jobs described

For caregivers of persons with advanced cancer at the end conflicting demands of caregiving and work.26,43,63,81,88,89,100
of life, disruptions occurred in their (a) environment, (b) Other conflicts in demands occurred while trying to care
roles and relationships, (c) priorities, (d) physical and for other family members26,38,41,63,65 and balancing other
mental health, and (e) hope for the future. Disruptions in activities such as housework.75,96,100 Conflict with other
the caregiver’s environment occurred with changes to family members caused additional stress for caregivers
accommodate equipment and care of the person in the through poor communication and perceived lack of sup-
home.24,49,76,79,80,94,99 There were also descriptions of their port.26,35,54,56,61,63,64,81,87,93,98 Financial strain was the result
environment shrinking due to the caregivers being unable of caregivers having to leave employment26,70 and the cost
to leave their home because of caregiving responsibili- of caregiving.59,65 These crucial events were identified as
ties24,50,56,79 and/or with loss of employment.41,44,81,89 triggers for transitions.
Caregiving for persons with advanced cancer was
accompanied by significant disruptions and changes in Redefining normal
roles and relationships,65,70,78,86 for example, when the per-
son who used to care for others then needed care (e.g. a Caregivers who were able to adapt to their transitions
child caring for a parent or a change in spousal described the reorganization of their reality as “redefin-
roles25,53,54,56,72,77,84,85). Others spoke of the change in ing normal,”24 “building a new normal,”3 or to “live as
relationship from a being spouse/child to being a normally as possible.”73,74 Reorganizing or redefining
“nurse.”24,26,38,49,60,66,69,80,99 The personality changes of the their reality meant caregivers recreated a sense of pattern
care recipient also resulted in changes in the prior relation- in the chaos and uncertainty.3 They were able to redefine
ship. For example, one participant stated “it was like living normal through the two processes of coming to terms and
with a stranger” (p. 461).35 Changes were noted in inti- connecting.
macy84,91,94 and family dynamics.64,85,86,88
Disruptions occurred in the priorities of the caregivers Coming to terms
as the recipients’ needs received priority (were considered
more important) and the caregivers’ own needs were often “Coming to terms” was not an acceptance but an
ignored.49,59,60,64,79,80,84,85,87,90,99,100 Ignoring their own needs acknowledgement that a significant change had occur
often led to disruptions in the caregivers’ physical and red.3,24,52,55,62,76–78,101 This did not preclude denial, which
mental health.25,26,41,45,56,59,64,84,85 For example, caregivers was used at times as a coping mechanism to take a break
reported a decline in their physical health due to lack of from coming to terms with things and enjoy themselves for
sleep38,59,60,63,65,100 and in their mental health associated a momentary period of time.67 As one caregiver stated,
with feelings of helplessness and dis-
Because reality overtakes. The pain, we return to the pain,
tress.3,26,41,44,59,73,76,84,85,93,96,102 Disruptions in the hope of
which continues to increase … It’s not simple. But I think that
caregivers also occurred with the realization that their on the whole, the [my] denial has passed. Sometimes I try to
future goals were no longer possible due to end-of-life believe that things will work out. It permits me to survive …
issues.25,35,51,52,62,102 to continue living … One part denial, and one part reality …
If these significant changes were not resolved, or dealt it’s a mix of all sorts of things … (p. 96)67
with, then the caregivers reported consequences such as feel-
ings of anxiety63,81 and depression,44,63,76,84,100 guilt and Acceptance was a term that appeared to be linked to giving
shame,41,63,86,90,93,96 isolation,48,59,65,76,100 and fear and up, which some caregivers stated was not what they
anger.26,67,69,84,96,102 These outcomes also influenced the transi- wanted: … but I don’t want to accept it, because if you do,
tion experience and were crucial events trigging transitions. I think you give in … (p. 3).55
10 Palliative Medicine

Figure 2.  Redefining Normal Conceptual Framework.

“Coming to terms” often involved reminiscing/compar- importance of caregivers connecting with their family
ing where they were now with where they were before network of friends and community for
they became caregivers.24,49,51,63,67,77,88,89 Recognizing the support.24,26,37,43,48,49,62,74,78,83,87,88,91,92,98
changes that occurred resulted at times in a painful process For some caregivers, the theme of connecting was
of facing loss67,81,84,87,94 and loss of what was to be.25,36,49, related to their faith or to their belief in a higher power as
59,65,68,75,78,84,88,89 Facing loss heightened their feeling of a source of support. Faith was described as an inner
uncertainty and loss of hope.25,40,51,52,62,63,81,102 With strength that helped them stay positive during caregiving
acknowledging their situation, caregivers understood that for a family member or friend at the end of life.26,41,43,55,62,
their “old normal” could no longer be maintained.3 It was 63,83,98,102 In some instances, their faith or belief in a higher

only when the caregivers were able to come to terms with power meant they also had additional support to help them
the changes in their situation that they were able to connect through transitions.24,62
with information and others.
Influencing factors
Connecting Factors that influenced the process of “redefining normal”
After acknowledging the situation, caregivers were able and the sub-processes of “coming to terms” and “connect-
to connect with information, with trusted experts, resources ing” included the following: (a) communication/informa-
and support, and for some with a higher power. Connecting tion; (b) attitudes, values, and beliefs toward caregiving;
with information meant actively seeking informa- (c) support networks; and (d) caregiver/care-recipient rela-
tion24,26,61,87,101 and learning as much as they could about tionship. Several studies described the importance of
providing care and support for their family member or timely communication with healthcare providers about
friend.52,63,75,87 They wanted their information to come care for their family member or friend and what to expect,
from trusted experts,24,26,37,40,55,89,91,93,101 who at times were so they could prepare for transitions.24,42,43,46,47,54,55,64,71,85,90,91
difficult to connect with.37,52,54,61,81,100 As one caregiver stated when explaining what healthcare
Caregivers described connecting to resources professionals need to tell caregivers: … What they’re
and support for themselves through formal systems going to expect, how it’s going to affect them. Tell them
such as healthcare providers and the healthcare how you can help them (p. 82).91 Timely communication
system.53,56,59,60,62,71,87,90 However, support from others with other family members and friends was also
was important as well. Many studies described the important.24,55,98
Duggleby et al. 11

Communication and information were linked, as how was challenging. For example, one of our inclusion criteria
information was communicated was as important as the was that the person with cancer must be living in the com-
information they received. As one caregiver said, How can munity, but understanding the care setting of each study
we help caregivers? By getting more information to them was not always straightforward. Some studies clearly
sooner. Don’t give them a bunch of paper to read … sit stated that the focus of the study was on family caregivers
with the person who’s going to be a caregiver (p. 82).91 providing care in the home, while others had a sample of
They also described needing to know who to call when mixed care settings involving caregivers providing care at
they had questions.39,69 Information was needed on a broad home, community, hospital, and/or hospice. Many studies
scope of topics from what to expect,39,40,46,47,59,61,68,84,95 only stated from where the sample was recruited, for
how to provide care,40,41,43,59,74,85,95 when to access health example, from (a) oncology clinics, (b) family support
care, and how to overcome barriers to health groups, or (c) palliative care or hospices.
care.24,43,57,59,64,83 Most studies did not specifically define end of life. Care
Another influencing factor was the caregivers’ own per- recipients were determined to be at the end of life because
sonal values and beliefs about caregiving. For some, car- they were receiving end-of-life care. The World Health
egiving was not viewed as a duty or a hardship but rather Organization’s definition of palliative care104 was often
what they wanted to do.43,45,50,51,69,93,97 This was often used, where the quality of life of the patient and the car-
based on their previous relationship with the care recipient egiver was a main tenet. Many studies indicated that the
and a sense of reciprocity (i.e. giving back).43,45,55,66,86,89,101 care recipient was at the end of life by stating they had a
Other participants did not perceive themselves as caregiv- terminal illness.
ers. They described their personal beliefs about caregiving Another limitation was that the demographics of the
as an expectation,50,69,89–91 which were not distinguishable participants, such as gender, diagnosis, age, age range,
from other forms of family responsibilities. race/religion/culture, and education were not always
Family caregivers’ beliefs and values about caregiving stated. This made describing the demographics of the
were often linked to cultural beliefs.36,42,45,48,50,98 Different metasynthesis sample more difficult and may have influ-
cultural groups expressed this in different ways, but for enced the study findings. As the focus of this study was on
some groups, it was a privilege to care for someone at the family caregivers of persons with advanced cancer, future
end of life,42,45,48 and for others, it was an expectation.36,98 studies should replicate this study with caregivers of per-
Only a few studies specifically focused on describing the sons with other types of advanced illnesses.
influence of cultural beliefs on caregiving. This is an area The quality of the qualitative studies was also a con-
where future research is needed. cern. Many of studies appeared to be of lower quality as
Another influencing factor on the transition processes determined by the CASP score and were descriptive in
was the caregiver/care-recipient relationship. A complexity nature. All were included in the metasynthesis and contrib-
of relationships, both negative and positive, had an influ- uted to the findings. However, future qualitative research
ence on caregivers’transitions.25,48,55,63–65,70,78,79,84,86,88,91,94,101 should focus on more interpretive methodologies.
For example, when caregivers and care recipients had pre- Another limitation, as is the case for all metasynthesis
vious experiences of facing issues together using open studies, is that data for the metasynthesis came from stud-
communication, their transition experiences seemed to be ies that had a variety of purposes. Moreover, not all data
less stressful than others. As one participant said, … Well from the studies were available, we could only use what
we’ll get through it together, I suppose really … We’ll face was reported in the articles. However, the large number of
it together … (p. 319).55 studies included in this metasynthesis allowed for a broad
All of these influencing factors either facilitated or hin- range of data which add to the credibility of our findings.
dered the processes of redefining normal and the sub-pro-
cesses of coming to terms and connecting. By redefining
normal, caregivers were able to maintain their sense of Redefining Normal Conceptual Framework
personhood,24,99 reframe hope,35,51,62,63,102 gain confidence The Redefining Normal Conceptual Framework suggests
in their ability to problem solve (self-efficacy),25,52,59,63,78,90 that caregivers of persons with advanced cancer experi-
find meaning,26,62,68,70,73,79,87,94,96 and prepare for another ence a “life transition” in which their reality is disrupted
transition—the death of their family member/ and they recreate a new reality through the process of
friend.3,25,26,42,53,56,59,60,79,89 “redefining normal.” Redefining normal involves the pro-
cesses of coming to terms with their situation and connect-
Discussion ing. If the caregivers were able to redefine their view of
what was normal, then they were able to maintain their
Limitations self-identity, find hope, feel confident in their ability to
There are several limitations to this metasynthesis study. deal with difficult situations (self-efficacy), find meaning
Determining the eligibility and inclusion of the articles in their lives, and prepare for the death of their family
12 Palliative Medicine

member/friend. If they were unable to redefine normal, all areas included in the framework. Priority should be
then they experienced outcomes of anxiety, fear, anger, given to identifying “disruptions” that may ultimately
depression, guilt, and shame. impact the caregivers’ abilities to transition and maintain
Selder,30 like other transitions theorists, described the their role as caregivers. Supporting caregivers to come to
importance of integrating transitions into a person’s life terms and find support will predict whether a caregiver can
through a process of normalization. Our findings support maintain their personhood, reframe hope, have the confi-
this concept as the process of “redefining normal” changes dence to deal with difficult situations, find meaning, and
what was considered normal before they became caregiv- prepare for the death of their care recipient. Careful assess-
ers. Coming to terms with their disrupted reality is men- ment of the influencing factors will form a holistic, family-
tioned by Selder30 as an important process for normalization. centered approach to providing care where communication
However, our study adds to Selder’s understanding of is valued, personal beliefs are recognized, and the relation-
“Life Transition Theory” because “connecting” was also ship between the caregiver and the recipient is assessed and
identified as an important process that occurs with redefin- supported.
ing normal. Selder30 suggested that there was a need to Family caregivers will require individualized support to
connect with information, but our findings suggest that “redefine normal” and maintain their roles in the very
connecting with other resources, others, and with a higher challenging context of the cancer trajectory. Supporting
power are important as well. caregivers is essential to a functioning, cost-effective, and
efficient healthcare system that also promotes health and
positive outcomes for caregivers, across the trajectory of
Outcomes cancer care. The findings also provide a framework for
The outcomes of redefining normal also add to our under- research studies. Intervention studies should have critical
standing of transitions. Selder30 and others refer to protec- components that are consistent with the redefining pro-
tion of self-identity or identity consistency as an outcome. cesses and should potentially include measures of the out-
This is similar in some aspects to our findings of person- comes of “redefining normal.”
hood. Personhood is a concept typically used in dementia
care.105 Maintaining personhood means that a caregiver is Acknowledgements
recognized as human, a unique individual, who they are. The authors thank the research assistants, Tony Wu and Kelly
Unlike self-identity or identity consistency, personhood Struthers Montford, who worked on this project.
must occur in relationship with others. Kitwood106 sug-
gests that it is related to normalization, as it brings people Declaration of conflicting interests
back into an ordinary way of relating, or in this case, car- The author(s) declared no potential conflicts of interest with
egivers were able to relate with others as a person by rede- respect to the research, authorship, and/or publication of this
fining normal. article.
We were also able to identify other outcomes of
redefining normal not previously described in transi- Funding
tion theories such as redefining hope and self-efficacy, The author(s) disclosed receipt of the following financial support
and preparing for the death of their family member or for the research, authorship, and/or publication of this article:
friend. Hope and self-efficacy have been found in other Funding for this study was received from the Institute for
studies of family caregivers of persons with advanced Continuing Care Education and Research (ICCER) Special
cancer to be significantly related to quality of life.107,108 Projects Grant.
Thus, the process of redefining normal may also result
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