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

VIC, Australia
6The University of Melbourne, Melbourne, VIC, Australia
7Palliative Care, Queen’s University Belfast, Belfast, UK
8Division of Palliative Care Medicine, Department of Oncology,
University of Alberta, Edmonton, AB, Canada
Corresponding author:
Wendy Duggleby, Faculty of Nursing, University of Alberta, ECHA 3rd
floor, 11405-87th ave, Edmonton, AB T6G 1C9, Canada.
Email: wendy.duggleby@ualberta.ca
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-
tributions family caregivers make to end-of-life care, the
negative consequences associated with caring, and their need
for support.1–3 Family caregivers were broadly defined as
family and friends who provide unpaid ongoing assistance to
a person at the end of life. With recognition of the impor-
tance of caregiving to cancer patients, there has been a sig-
nificant growth in research in this area.3,4 Several systematic
reviews of qualitative and quantitative research studies of
family caregivers of persons at the end of life have been pub-
lished.1,2,5–23 Of these, eight synthesized the findings from
qualitative studies and focused on reviews focused on qual-
ity of life,23 information needs,11,15 distress,13 experience of
caregiving,2,18 existential concerns,19 and unmet needs.21
Even though caregivers of persons at the end of life experi-
ence multiple, concurrent transitions that impact their physi-
cal and mental health,3,24–26 none have focused specifically
on describing the transitions experienced by caregivers of
persons at the end of life living in the home.
Transitions are significant life events that require a new
situation or circumstance to be incorporated into a person’s
life.27,28 There are several theories of transitions in the litera-
ture.28–30 Common concepts shared by these theories are that
transitions are a psychosocial process through which per-
sons deal with significant changes (developmental, organi-
zational, or situational). They also suggest that individuals
can deal with the challenges associated with transitions
when they receive support.28 Finding the best way to sup-
port family caregivers of persons at the end of life living in
the home as they experience transitions would inform pro-
grams and interventions.
We are aware of only four published studies that have
focused on the transition experience of caregivers of
persons at the end of life.3,24–26 The findings from these
studies suggest caregivers experienced disruptions in their
environment, roles and relationships, and physical and
mental health that result in feelings of uncertainty and dis-
tress.3,24–26 Two of these four studies focused on the transi-
tion to end-of-life caregiving,25,26 one on transitions when
the person they were caring for was receiving palliative
care24 and one through all stages of caregiving including
bereavement.3 Although these studies provide an initial
understanding of transitions of family caregivers of per-
sons with advanced cancer, more knowledge is needed
about this complex experience to determine the most
effective ways to support these caregivers.
Metasynthesis is a method that has been used suc-
cessfully to extend our knowledge in a complex area.
This method brings together qualitative exploratory
studies to enhance their contribution to the development
of more formalized knowledge.31 Metasynthesis of qual-
itative exploratory studies results in conceptual frame-
works that can guide future studies and development of
programs.32 A metasynthesis study of the transition
experience of caregivers of persons at the end of life
would synthesize the qualitative data on transitions
embedded within the qualitative experience. By synthe-
sizing these qualitative findings, we can honor the voices
of caregivers and develop a transitions conceptual
framework that reflects their needs and wants.33
Aims
The aims of this metasynthesis study were to (a) explore
the transition experience of family caregivers caring for
persons with advanced cancer receiving palliative/hospice
Duggleby et al. 3
care and 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
A metasynthesis of qualitative research studies on family
caregivers of persons with advanced cancer living in the
community was completed using the procedures outlined
by Sandelowski and Barroso.34 The procedural steps were
as follows: (a) comprehensive search, (b) appraising
reports of qualitative studies, (c) classification of studies,
and d) synthesis of the findings.
Data sources
The research team met with an experienced librarian to
determine the search terms. The librarian then searched
MEDLINE, Embase, PsycINFO, CINAHL, and Web of
Science using key search terms and subject headings for
caregivers, carers, family, friends, significant other, ter-
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
design from the search. Depending on the database and
controlled vocabularies available, each search was modi-
fied using a combination of subject headings/key words
as appropriate for each database. The search was initially
completed including all diseases, but because of the large
volume of studies retrieved, the team decided to focus on
those caring for persons with advanced cancer. In addi-
tion the research team had identified published research
articles for potential inclusion in the metasynthesis (other
sources).
Titles and abstracts were then examined to determine
whether the articles met the inclusion criteria. Inclusion
criteria for the studies were as follows: (a) published quali-
tative studies (and mixed-method designs) of the caregiv-
ing experience of family caregivers of community-living
persons with advanced cancer at the end of life, (b) partici-
pants (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. Family
caregivers were broadly defined as family and friends who
provide unpaid ongoing assistance to a person at the end of
life. End of life was defined broadly and included those
receiving hospice/palliative care.
Excluded were abstracts, metasyntheses, and second-
ary analysis. Also excluded were findings involving for-
mal caregivers (i.e. healthcare professionals) and
bereaved caregivers. Bereaved caregivers were excluded
as the focus of this study was on the experience of family
caregivers who were actively caring for a person with
advanced cancer in the community.
Search outcomes
Figure 1 outlines the results of the search. Literature
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
inclusion criteria. A total of 219 full text articles were
downloaded and screened to determine inclusion. Of
these, 147 were excluded based on inclusion criteria.
Ultimately, 72 full text articles (Table 1) were included in
the metasynthesis.
Quality appraisal
Qualitative studies were evaluated for their quality using
the Critical Appraisal Skills Program (CASP). CASP is a
tool that provides a standardized mechanism for apprais-
ing qualitative studies using metasynthesis,103 where a
higher CASP score indicates higher study quality (maxi-
mum score is 24). Studies were not excluded based on the
CASP score, but the scores were used to describe the qual-
ity of the studies. The mean CASP score was 18.67 (stand-
ard deviation (SD) = 2.49) with a range of 13–23.
Data abstraction and synthesis
The studies reviewed used a variety of qualitative
approaches. Grounded theory was used most frequently
(18/72 = 25%) followed by phenomenology (17/72) and
thematic analysis (11/72). Ten utilized a descriptive qual-
itative approach, eight content analysis, three narrative
inquiry, three ethnography, and two mixed methods. If no
information was provided regarding the qualitative
approach used, studies were classified as descriptive
studies.
Using Sandelowski and Barroso’s34 classification sys-
tem, study methodologies were categorized based on the
actual analytical work performed rather than what was
stated by the authors in the articles. Of these 72 articles, 36
(50%) were classified as Thematic Survey, 22 (30.6%)
were Conceptual/Thematic Description, and 14 (19.4%)
were Interpretive Explanation. Topical Surveys would
have been excluded as suggested by Sandelowski and
Barroso, and none of the studies were categorized as such.
The reported findings from the articles were entered
into NVivo 10 software for qualitative analysis. Synthesis
of the findings occurred by reading the findings as a whole,
as well as team discussion to identify concepts using taxo-
nomic analysis. The purpose of the taxonomic analysis
was to identify significant underlying concepts and con-
ceptual relationships. Using constant comparative analysis
relationships among the interpreted concepts were identi-
fied. The final stage was reciprocal translation. In this
stage of analysis, a concept to integrate the metasynthesis
findings was imported from the literature (in this case,
“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-
tained in a variety of ways. First, a comprehensive search
for literature was completed with team discussion and
decisions on search terms and inclusion criteria. Appraisals
and assigned CASP scores of all included studies were
then completed by two members of the team. An audit trail
of search results and decisions was kept.
70.6%) compared to males (n = 359; 22.9%), and infor-
mation on the remaining few were not reported. The
majority of the studies were conducted in the USA (22/72;
30%), Canada (17/72; 23.6%), and the UK (16/72;
22.2%), with the remainder from Sweden (9/72; 12.5%),
Australia (5/72; 6.9%), Demark (1/72), Brazil (1/72), and
Switzerland (1/72).

Results Caregiving: a life transition

The 72 articles included a total of 1565 caregivers of
which 767 were spouses (49%), 332 adult children (21%),
134 siblings (8%), 107 other relatives (6 %), 52 parents
(3%), 25 friends (1%), and 5 grandchildren (0.3%); the
relationship for the remaining 344 (22%) was not stated.
The mean age of the caregivers was 58.57 (SD = 6.46;
range 44.9–73.8) years and of care recipients 70.58 (SD
= 7.96) years. Most caregivers were females (n = 1105;
Caregivers of persons with advanced cancer living in the
community experience multiple, concurrent transitions that
result in a disruption of their reality3,24–26 Caregivers
described their transition experiences as a “ hurricane,”68
“chaos,”51 and “ turmoil”81 (p. 328). As one caregiver stated,
This cancer has been a total disruption of my life (p. 325).63
Several of the studies reported findings of “loss of nor-
mal.”3,49,63,71,77–80 This suggests that caregivers of persons
Table 1.  Articles included in metasynthesis.
Source
Alexander35 (Australia)
Anngela-Cole and Busch36
(USA)
Arber et al.37 (UK)
Arber and Venn38 (UK)
Benzar et al.39 (USA)
Benzein and Saveman40
(Sweden)
Bialon and Coke41 (USA)
Braun et al.42 (USA)
Cagle and Kovacs43 (USA)
Cavers et al.44 (UK)
Chattoo and Ahmad45
(UK)
Cherlin et al.46 (USA)
Clayton et al.47 (Australia)
Cowan48 (UK)
Dahlborg and Lindahl49
(Sweden)
Donovan et al.50 (Canada)
Duggleby et al.24 (Canada)
Duggleby et al.51 (Canada)
Objective Methodology Data collection method CASP total Finding classification
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
This study addressed the relationship among stress, anticipatory mourning, and cultural A qualitative phenomenological Focus-group interviews 20 Conceptual/Thematic
Duggleby et al.
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
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
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
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
The objective was to describe couples’ experiences of participating in nurse-initiated Content analysis Semi-structured interviews 20 Conceptual/Thematic
health-promoting conversations about hope and suffering during home-based palliative care Description
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
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
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
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
The purpose of this study was to explore the dichotomous carer/care-recipient Comparative method Observations and in-depth 17 Conceptual/Thematic
relationship interviews Description
The objective was to examine physician–family caregiver communication at EOL Descriptive phenomenology Open-ended, qualitative 16 Topical Survey
interviews
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
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
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
caregiver of a close one who is terminally ill method narrative approach
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
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
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

Table 1. (Continued)
Source
Edwards et al.52 (Canada)
Esbensen and Thomé53
(Denmark)
Forbat et al.54 (UK)
Foxwell and Scott55 (UK)
Gardner and Kramer56
(USA)
Griebeler et al.57 (Brazil)
Gysels and Higginson58
(UK)
Harding et al.59 (UK)
Harrop et al.60 (UK)
Hebert et al.61 (USA)
Holtslander et al.62
(Canada)
Houldin63 (USA)
Hudson64 (Australia)
Jo et al.65 (Canada)
Kazanowski66 (USA)
Kogan et al.67 (Canada)
Kukeya68 (USA)
Linderholm and
Friedrichsen69 (Sweden)
6
Objective Methodology Data collection method CASP total Finding classification
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
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
person with cancer Description
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
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
This study examined the end-of-life challenges, concerns, and care preferences of Thematic analysis Semi-structured, face-to-face 17 Thematic Survey
terminally ill elders and their family caregivers, with a focus on areas of congruence and interviews
incongruence
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
The study objective was to investigate the caring experience of carers for patients with Grounded theory Semi-structured, in-depth 19 Thematic Survey
an advanced progressive illness (COPD, heart failure, cancer, or MND) who suffer from interviews
breathlessness
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
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
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
This study aims to (a) describe hope experience for this population, (b) develop theoretical Grounded theory Open-ended interviews, field 21 Interpretive Explanation
analysis, and (c) develop statements about relationships between concepts of basic social notes, and journaling
processes of the hope experience
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
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
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
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
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
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
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
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)

Table 1. (Continued)
Source
Smith89 (UK)
Stajduhar et al.90 (Canada)
Stajduhar et al.91 (Canada)
Stoltz et al.92 (Sweden)
Stone et al.93 (USA)
Sutherland25 (Canada)
Taylor94 (UK)
Terry et al.95 (Australia)
Teschendorf et al.96 (USA)
Thomas et al.97 (UK)
Turner et al.98 (USA)
Ugalde et al.99 (Australia)
Waldrop et al.26 (USA)
Ward-Griffin et al.100
(Canada)
Washington101 (USA)
Williams et al.102 (Canada)
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.
8
Objective Methodology Data collection method CASP total Finding classification
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)
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
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
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
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
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
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
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
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)
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
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
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
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
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
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)
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
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
Palliative Medicine
Duggleby et al. 9
with advanced cancer experience a “life transition” when
they become caregivers. Selder30 defined life transition as
the disruption of a persons’ reality that necessitates a perma-
nent reorganization or reconstructing of his or her existing
reality. These transitions were triggered by crucial events.
Figure 2 (Redefining Normal Conceptual Framework,
explained in detail below) presents the processes through
which caregivers experienced and dealt with their transi-
tions, crucial or triggering events, influencing factors and
outcomes. These processes, events, and outcomes were
interconnecting and not experienced in a linear manner.
Disruptions
For caregivers of persons with advanced cancer at the end
of life, disruptions occurred in their (a) environment, (b)
roles and relationships, (c) priorities, (d) physical and
mental health, and (e) hope for the future. Disruptions in
the caregiver’s environment occurred with changes to
accommodate equipment and care of the person in the
home.24,49,76,79,80,94,99 There were also descriptions of their
environment shrinking due to the caregivers being unable
to leave their home because of caregiving responsibili-
ties24,50,56,79 and/or with loss of employment.41,44,81,89
Caregiving for persons with advanced cancer was
accompanied by significant disruptions and changes in
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
child caring for a parent or a change in spousal
roles25,53,54,56,72,77,84,85). Others spoke of the change in
relationship from a being spouse/child to being a
“nurse.”24,26,38,49,60,66,69,80,99 The personality changes of the
care recipient also resulted in changes in the prior relation-
ship. For example, one participant stated “it was like living
with a stranger” (p. 461).35 Changes were noted in inti-
macy84,91,94 and family dynamics.64,85,86,88
Disruptions occurred in the priorities of the caregivers
as the recipients’ needs received priority (were considered
more important) and the caregivers’ own needs were often
ignored.49,59,60,64,79,80,84,85,87,90,99,100 Ignoring their own needs
often led to disruptions in the caregivers’ physical and
mental health.25,26,41,45,56,59,64,84,85 For example, caregivers
reported a decline in their physical health due to lack of
sleep38,59,60,63,65,100 and in their mental health associated
with feelings of helplessness and dis-
tress.3,26,41,44,59,73,76,84,85,93,96,102 Disruptions in the hope of
caregivers also occurred with the realization that their
future goals were no longer possible due to end-of-life
issues.25,35,51,52,62,102
If these significant changes were not resolved, or dealt
with, then the caregivers reported consequences such as feel-
ings of anxiety63,81 and depression,44,63,76,84,100 guilt and
shame,41,63,86,90,93,96 isolation,48,59,65,76,100 and fear and
anger.26,67,69,84,96,102 These outcomes also influenced the transi-
tion experience and were crucial events trigging transitions.
Crucial events
Selder30 suggests that events triggering transitions are con-
sidered as crucial events when they are external to the indi-
vidual. The crucial events for family caregivers included
the following: (a) changes in the condition of the person
they were caring for (i.e. functional decline/activity limita-
tions and acute exacerbation of illness/symptoms), (b)
conflicting demands, (c) family role conflict, and (d)
financial strain.
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–
58,64,66,67,71,74,75,81,82,87,97 Caregivers who had jobs described
conflicting demands of caregiving and work.26,43,63,81,88,89,100
Other conflicts in demands occurred while trying to care
for other family members26,38,41,63,65 and balancing other
activities such as housework.75,96,100 Conflict with other
family members caused additional stress for caregivers
through poor communication and perceived lack of sup-
port.26,35,54,56,61,63,64,81,87,93,98 Financial strain was the result
of caregivers having to leave employment26,70 and the cost
of caregiving.59,65 These crucial events were identified as
triggers for transitions.
Redefining normal
Caregivers who were able to adapt to their transitions
described the reorganization of their reality as “redefin-
ing normal,”24 “building a new normal,”3 or to “live as
normally as possible.”73,74 Reorganizing or redefining
their reality meant caregivers recreated a sense of pattern
in the chaos and uncertainty.3 They were able to redefine
normal through the two processes of coming to terms and
connecting.
Coming to terms
“Coming to terms” was not an acceptance but an
acknowledgement that a significant change had occur
red.3,24,52,55,62,76–78,101 This did not preclude denial, which
was used at times as a coping mechanism to take a break
from coming to terms with things and enjoy themselves for
a momentary period of time.67 As one caregiver stated,
Because reality overtakes. The pain, we return to the pain,
which continues to increase … It’s not simple. But I think that
on the whole, the [my] denial has passed. Sometimes I try to
believe that things will work out. It permits me to survive …
to continue living … One part denial, and one part reality …
it’s a mix of all sorts of things … (p. 96)67
Acceptance was a term that appeared to be linked to giving
up, which some caregivers stated was not what they
wanted: … but I don’t want to accept it, because if you do,
I think you give in … (p. 3).55
10 Palliative Medicine
Figure 2.  Redefining Normal Conceptual Framework.
“Coming to terms” often involved reminiscing/compar-
ing where they were now with where they were before
they became caregivers.24,49,51,63,67,77,88,89 Recognizing the
changes that occurred resulted at times in a painful process
of facing loss67,81,84,87,94 and loss of what was to be.25,36,49,
59,65,68,75,78,84,88,89 Facing loss heightened their feeling of
uncertainty and loss of hope.25,40,51,52,62,63,81,102 With
acknowledging their situation, caregivers understood that
their “old normal” could no longer be maintained.3 It was
only when the caregivers were able to come to terms with
the changes in their situation that they were able to connect
with information and others.
Connecting
After acknowledging the situation, caregivers were able
to connect with information, with trusted experts, resources
and support, and for some with a higher power. Connecting
with information meant actively seeking informa-
tion24,26,61,87,101 and learning as much as they could about
providing care and support for their family member or
friend.52,63,75,87 They wanted their information to come
from trusted experts,24,26,37,40,55,89,91,93,101 who at times were
difficult to connect with.37,52,54,61,81,100
Caregivers described connecting to resources
and support for themselves through formal systems
such as healthcare providers and the healthcare
system.53,56,59,60,62,71,87,90 However, support from others
was important as well. Many studies described the
importance of caregivers connecting with their family
network of friends and community for
support.24,26,37,43,48,49,62,74,78,83,87,88,91,92,98
For some caregivers, the theme of connecting was
related to their faith or to their belief in a higher power as
a source of support. Faith was described as an inner
strength that helped them stay positive during caregiving
for a family member or friend at the end of life.26,41,43,55,62,
63,83,98,102 In some instances, their faith or belief in a higher
power meant they also had additional support to help them
through transitions.24,62
Influencing factors
Factors that influenced the process of “redefining normal”
and the sub-processes of “coming to terms” and “connect-
ing” included the following: (a) communication/informa-
tion; (b) attitudes, values, and beliefs toward caregiving;
(c) support networks; and (d) caregiver/care-recipient rela-
tionship. Several studies described the importance of
timely communication with healthcare providers about
care for their family member or friend and what to expect,
so they could prepare for transitions.24,42,43,46,47,54,55,64,71,85,90,91
As one caregiver stated when explaining what healthcare
professionals need to tell caregivers: … What they’re
going to expect, how it’s going to affect them. Tell them
how you can help them (p. 82).91 Timely communication
with other family members and friends was also
important.24,55,98
Duggleby et al. 11
Communication and information were linked, as how
information was communicated was as important as the
information they received. As one caregiver said, How can
we help caregivers? By getting more information to them
sooner. Don’t give them a bunch of paper to read … sit
with the person who’s going to be a caregiver (p. 82).91
They also described needing to know who to call when
they had questions.39,69 Information was needed on a broad
scope of topics from what to expect,39,40,46,47,59,61,68,84,95
how to provide care,40,41,43,59,74,85,95 when to access health
care, and how to overcome barriers to health
care.24,43,57,59,64,83
Another influencing factor was the caregivers’ own per-
sonal values and beliefs about caregiving. For some, car-
egiving was not viewed as a duty or a hardship but rather
what they wanted to do.43,45,50,51,69,93,97 This was often
based on their previous relationship with the care recipient
and a sense of reciprocity (i.e. giving back).43,45,55,66,86,89,101
Other participants did not perceive themselves as caregiv-
ers. They described their personal beliefs about caregiving
as an expectation,50,69,89–91 which were not distinguishable
from other forms of family responsibilities.
Family caregivers’ beliefs and values about caregiving
were often linked to cultural beliefs.36,42,45,48,50,98 Different
cultural groups expressed this in different ways, but for
some groups, it was a privilege to care for someone at the
end of life,42,45,48 and for others, it was an expectation.36,98
Only a few studies specifically focused on describing the
influence of cultural beliefs on caregiving. This is an area
where future research is needed.
Another influencing factor on the transition processes
was the caregiver/care-recipient relationship. A complexity
of relationships, both negative and positive, had an influ-
ence on caregivers’transitions.25,48,55,63–65,70,78,79,84,86,88,91,94,101
For example, when caregivers and care recipients had pre-
vious experiences of facing issues together using open
communication, their transition experiences seemed to be
less stressful than others. As one participant said, … Well
we’ll get through it together, I suppose really … We’ll face
it together … (p. 319).55
All of these influencing factors either facilitated or hin-
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
personhood,24,99 reframe hope,35,51,62,63,102 gain confidence
in their ability to problem solve (self-efficacy),25,52,59,63,78,90
find meaning,26,62,68,70,73,79,87,94,96 and prepare for another
transition—the death of their family member/
friend.3,25,26,42,53,56,59,60,79,89
Discussion
Limitations
There are several limitations to this metasynthesis study.
Determining the eligibility and inclusion of the articles
was challenging. For example, one of our inclusion criteria
was that the person with cancer must be living in the com-
munity, but understanding the care setting of each study
was not always straightforward. Some studies clearly
stated that the focus of the study was on family caregivers
providing care in the home, while others had a sample of
mixed care settings involving caregivers providing care at
home, community, hospital, and/or hospice. Many studies
only stated from where the sample was recruited, for
example, from (a) oncology clinics, (b) family support
groups, or (c) palliative care or hospices.
Most studies did not specifically define end of life. Care
recipients were determined to be at the end of life because
they were receiving end-of-life care. The World Health
Organization’s definition of palliative care104 was often
used, where the quality of life of the patient and the car-
egiver was a main tenet. Many studies indicated that the
care recipient was at the end of life by stating they had a
terminal illness.
Another limitation was that the demographics of the
participants, such as gender, diagnosis, age, age range,
race/religion/culture, and education were not always
stated. This made describing the demographics of the
metasynthesis sample more difficult and may have influ-
enced the study findings. As the focus of this study was on
family caregivers of persons with advanced cancer, future
studies should replicate this study with caregivers of per-
sons with other types of advanced illnesses.
The quality of the qualitative studies was also a con-
cern. Many of studies appeared to be of lower quality as
determined by the CASP score and were descriptive in
nature. All were included in the metasynthesis and contrib-
uted to the findings. However, future qualitative research
should focus on more interpretive methodologies.
Another limitation, as is the case for all metasynthesis
studies, is that data for the metasynthesis came from stud-
ies that had a variety of purposes. Moreover, not all data
from the studies were available, we could only use what
was reported in the articles. However, the large number of
studies included in this metasynthesis allowed for a broad
range of data which add to the credibility of our findings.
Redefining Normal Conceptual Framework
The Redefining Normal Conceptual Framework suggests
that caregivers of persons with advanced cancer experi-
ence a “life transition” in which their reality is disrupted
and they recreate a new reality through the process of
“redefining normal.” Redefining normal involves the pro-
cesses of coming to terms with their situation and connect-
ing. If the caregivers were able to redefine their view of
what was normal, then they were able to maintain their
self-identity, find hope, feel confident in their ability to
deal with difficult situations (self-efficacy), find meaning
in their lives, and prepare for the death of their family
12 Palliative Medicine
member/friend. If they were unable to redefine normal,
then they experienced outcomes of anxiety, fear, anger,
depression, guilt, and shame.
Selder,30 like other transitions theorists, described the
importance of integrating transitions into a person’s life
through a process of normalization. Our findings support
this concept as the process of “redefining normal” changes
what was considered normal before they became caregiv-
ers. Coming to terms with their disrupted reality is men-
tioned by Selder30 as an important process for normalization.
However, our study adds to Selder’s understanding of
“Life Transition Theory” because “connecting” was also
identified as an important process that occurs with redefin-
ing normal. Selder30 suggested that there was a need to
connect with information, but our findings suggest that
connecting with other resources, others, and with a higher
power are important as well.
Outcomes
The outcomes of redefining normal also add to our under-
standing of transitions. Selder30 and others refer to protec-
tion of self-identity or identity consistency as an outcome.
This is similar in some aspects to our findings of person-
hood. Personhood is a concept typically used in dementia
care.105 Maintaining personhood means that a caregiver is
recognized as human, a unique individual, who they are.
Unlike self-identity or identity consistency, personhood
must occur in relationship with others. Kitwood106 sug-
gests that it is related to normalization, as it brings people
back into an ordinary way of relating, or in this case, car-
egivers were able to relate with others as a person by rede-
fining normal.
We were also able to identify other outcomes of
redefining normal not previously described in transi-
tion theories such as redefining hope and self-efficacy,
and preparing for the death of their family member or
friend. Hope and self-efficacy have been found in other
studies of family caregivers of persons with advanced
cancer to be significantly related to quality of life.107,108
Thus, the process of redefining normal may also result
in improving quality of life in this population; how-
ever, future research is needed to determine if this is
the case.
Conclusion
Figure 2 provides a unique conceptual framework to under-
stand the caregiving transition experience and to evaluate
caregiver interventions and programs. For example, a pro-
gram for caregivers could be assessed to determine whether
it supports caregivers to engage in the “redefining normal”
processes to achieve positive outcomes. Such a program
could also use the framework to evaluate information, as
the information provided to help caregivers should cover
all areas included in the framework. Priority should be
given to identifying “disruptions” that may ultimately
impact the caregivers’ abilities to transition and maintain
their role as caregivers. Supporting caregivers to come to
terms and find support will predict whether a caregiver can
maintain their personhood, reframe hope, have the confi-
dence to deal with difficult situations, find meaning, and
prepare for the death of their care recipient. Careful assess-
ment of the influencing factors will form a holistic, family-
centered approach to providing care where communication
is valued, personal beliefs are recognized, and the relation-
ship between the caregiver and the recipient is assessed and
supported.
Family caregivers will require individualized support to
“redefine normal” and maintain their roles in the very
challenging context of the cancer trajectory. Supporting
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
cancer care. The findings also provide a framework for
research studies. Intervention studies should have critical
components that are consistent with the redefining pro-
cesses and should potentially include measures of the out-
comes of “redefining normal.”
Acknowledgements
The authors thank the research assistants, Tony Wu and Kelly
Struthers Montford, who worked on this project.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
Funding for this study was received from the Institute for
Continuing Care Education and Research (ICCER) Special
Projects Grant.
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