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Quality of life domains important and relevant to family caregivers of advanced cancer
patients in an Asian population - a qualitative study
Short title: Quality of life of caregivers
Geok Ling Lee,1 Mandy Yen Ling Ow,2 Ramaswamy Akhileswaran,3 Grace Su Yin Pang,4
Gilbert Kam Tong Fan,5,6 Brandon Huat Heng Goh,5 Cai Fong Wong,2 Yin Bun Cheung*, 2,7
Hwee Lin Wee* 8
1 Department of Social Work, National University of Singapore, 3 Arts Link, Singapore 1175702 Center for Quantitative Medicine, Duke-NUS Graduate Medical School, 20 College Road, Singapore 1698563 HCA Hospice Care, 12 Jalan Tan Tock Seng, Singapore 3084374 Department of Palliative Medicine, National Cancer Centre Singapore, 11 Hospital Drive, Singapore 1696105 Department of Psychosocial Oncology, National Cancer Centre Singapore, 11 Hospital Drive, Singapore 1696106 Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, 10 Medical Drive, Singapore 1175977 Department of International Health, University of Tampere, FI-33014 Tampere, Finland8 Department of Pharmacy, National University of Singapore, 18 Science Drive 4, Singapore 117543
* Joint senior authors
Corresponding author:
Professor Yin Bun Cheung
Address: Center for Quantitative Medicine, Duke-NUS Graduate Medical School, 20 College Road, Singapore 169856
Email: [email protected]
Tel: (65) 6576 7379
Fax: (65) 6225 1244
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ABSTRACT
Purpose: This study aims to identify domains of quality of life (QoL) that are culturally
relevant to Chinese caregivers of advanced cancer patients in Singapore and to evaluate
content adequacy of currently available instruments for use in the target population.
Methods: English- and Chinese-speaking caregivers of advanced cancer patients receiving
care under a tertiary cancer center and/or a community hospice home care/daycare provider
were recruited for in-depth interviews. The interviews were analyzed using thematic analysis.
The identified domains, themes, and sub-themes were compared to concepts addressed by
items from five existing cancer-specific caregiver QoL instruments.
Results: Eighteen female and eight male caregivers aged 28-74 years participated in the
study. Twenty-nine QoL themes and 59 sub-themes were identified in six domains, namely,
physical health, mental health, social health, spiritual health, financial health and daily life.
Collectively, but not individually, the content of the five existing instruments adequately
cover the physical health domain, social health domain, and some themes on mental health
domain for the study population. Content gaps were identified in the domains of mental
health, spiritual health, daily life and financial health.
Conclusions: The present study found culturally and contextually specific themes and sub-
themes about positive emotional health, spiritual health, and financial health.
KEYWORDS: Advanced cancer; caregiver; psychosocial oncology; quality of life;
qualitative research
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INTRODUCTION
Palliative care, based on the World Health Organization definition, requires impeccable
assessment and treatment of pain and physical, psychological and spiritual problems [1].
Assessing the quality of life (QoL) of patients and caregivers is essential in palliative care.
However, QoL is a complex construct, with both subjective and objective aspects, that cannot
be determined by a single measure. A systematic review of family caregivers of cancer
patients found that caregiver QoL is greatly affected in multiple aspects, including physical,
psychosocial and spiritual well-being [2].
Caregivers’ QoL concerns are likely to be different from those of patients’ or the
general public’s; hence they require specific measurement tools [2,3,4]. Caregiver QoL varies
over the illness trajectory of cancer patients [5] and worsens over time [6]. Current caregiver
QoL instruments include the Quality of Life in Life Threatening Illness - Family Carer
Version (QOLLTI-F) and the Caregiver Quality of Life Index (CQLI) [3,4], which were
developed specifically for family caregivers of cancer patients in palliative and hospice care
respectively [7]. Among instruments developed for family caregivers of cancer patients in
general, there are the Caregiver Quality of Life Index-Cancer (CQOLC), the Quality of Life,
Family Version (QOL-FV) and the CareGiver Oncology Quality of Life (CarGOQoL) [8-10].
Of these five instruments, only the CQOLC and CarGOQoL have been developed with
caregiver input during the item generation phase [8,10]. Input from the target population
during instrument development is considered essential to establish the content validity of the
instrument [11].
There are differences between Asian and Western societies that can have an impact on
QoL measurement [12]. For example, there is greater emphasis on family relationships and
the family unit in an Asian sociocultural context [13,14], which could influence expectations
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about family caregiving expectations and arrangements. The CQLI, CQOLC, and the QOL-
FV were developed in the US, the CarGOQoL in France, and the QOLLTI-F in Canada. No
instrument was originally developed in Asia, though the CQOLC has been translated to
Chinese and validated in Taiwan [15].
The first objective of this study was to identify QoL domains relevant to Chinese
caregivers of patients with advanced cancer in Singapore. The second objective was to
evaluate the content adequacy of existing instruments for use in this population, with
reference to the domains and themes identified in the present study.
MATERIALS AND METHODS
Participants
We recruited family caregivers of patients with advanced cancer from the outpatient clinic at
the National Cancer Centre Singapore (NCCS; n=10) and HCA Hospice Care (HCA; n=16)
from June to November 2012. Inclusion criteria were: primary or secondary caregivers of
patients with advanced solid cancer, aged 21 years or above, ethnic Chinese, aware of the
patient’s diagnosis and prognosis, able to communicate in Chinese (Mandarin, Hokkien or
Cantonese) and/or English, willing to give informed consent, and willing to be voice
recorded. We defined a family caregiver as a primary caregiver if he/she is taking direct care
of the patient’s day-to-day needs , and as a secondary caregiver if he/she is the main decision
maker with regard to the patient’s needs, but not the main person taking direct care of the
patient. We only recruited ethnic Chinese participants because of language limitations of
study interviewers. Bilingualism and use of English is common in Singapore. According to
the Singapore Census 2010, 73% of the Chinese residents were literate in English (including
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multi-lingual people) and 21% were literate only in Chinese [16]. The study was approved by
the Institutional Review Board of the National University of Singapore.
Procedures
Eligible participants were identified by doctors or nurses and written consent was obtained by
a research coordinator prior to the interview. The original plan was to arrange more focus
groups but this was unsuccessful, due to participants’ caregiving and other commitments.
Only two participants were interviewed together; all other participants were individually
interviewed.
To ensure that our investigation was not limited by theoretical assumptions, a
phenomenological approach was used to study the “lived experience” of caregivers. This
approach comprised some unique features of the specific interview situation - the participants
described their experiences which were personalized and subjective, and the interviewers
tried to understand it without applying their own interpretations [17]. Questions in the guide
were initially open-ended to minimize influence of interviewer probes [18]. Subsequently,
probes were more specific and used to encourage discussion when needed. Open-ended
questions were related to how cancer or cancer treatment of the family member had affected
the caregiver’s life, whilst specific probes addressed physical, social, psycho-emotional,
cognitive, spiritual health, and financial aspects. All the interviews, with an average of 90
minutes, were completed in a single visit. The interviews were conducted in English or
Chinese according to participant’s preference. Prefix E (for English) or C (for Chinese) in
participant numbers in quotations indicates the language of interviews. Quotations in the
manuscript may not look grammatically correct due to colloquial use of English (e.g.
http://en.wikipedia.org/wiki/Singlish). To keep the cultural essence, we made minimal
grammatical correction only when necessary, without changing the semantics. Six
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interviewers conducted the interviews, including an investigator/author (GLL). GLL, who
was a registered social worker experienced in qualitative research involving palliative care
recipients, trained the other five interviewers. Interviewers used a standardized semi-
structured interview guide developed from literature review. To minimize heterogeneity in
interviewing, we conducted two group training sessions – one at the start of the study and
another during the study. Furthermore, the trainer reviewed the interview recordings for the
first two interviews conducted by each interviewer and provided feedback.
Data Analysis
Interviews were voice-recorded and transcribed verbatim. Chinese transcripts were translated
into English by one author, independently verified by another author, and the discrepancies
(if any) were resolved through a consensus meeting between the two authors. We did not
conduct a formal forward and back translation. The theoretical and empirical approach is
based on qualitative, in-depth, phenomenological framework. Using thematic analysis, the
“lived experiences” of the participants were described in terms of “what” and “how” they
experienced [17].
An initial codebook was developed by three of the authors (led by the interview
trainer GLL) through independent open coding of transcripts, which was a data-driven
process to identify emerging themes directly from data [19]. Harmonization of the codebooks
was achieved in face-to-face discussions. Six trained coders, who were not the authors or
interviewers, coded sample transcripts using the codebook. Each sample transcript was coded
by two coders independently. Two authors then independently reviewed the coded transcripts
to assess coding quality. All six coders were evaluated in this process and further training was
provided where needed. The study team revised the codebook iteratively over three rounds
through consensus meetings until investigators were satisfied that the codes could be
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consistently applied to transcripts. The six coders then coded the transcripts individually.
Theme saturation was achieved at the 24th caregiver interview. Further analysis was
facilitated by axial coding using NVivo 10 analytical software [20]. Axial coding is the
process of synthesizing and re-assembling themes to give coherence to emerging analysis at
the abstract level [21]. The final output of thematic analysis was a list of QoL concerns
organized into ‘domain’, ‘theme’, and ‘sub-theme’ levels.
Comparison of concepts to selected caregiver QoL instruments
Existing QoL instruments developed for caregivers of cancer patients or patients with
terminal diseases were identified from a literature search. A PubMed search for articles
published between 1970 and 2013 using the specification: ("quality of life" and (caregiver*
or carer*) and (index or scale or instrument or questionnaire or inventory or measure or
measurement) and (cancer or terminal or life-threatening or palliative or hospice) and
("1970/01/01"[PDAT] : "2013/12/31"[PDAT])) found 655 articles. We were not able to
retrieve/review one article in German and one in Korean. The other articles were first
screened by reviewing the abstracts for relevance, and then the relevant articles were
reviewed. Five instruments were identified: the CQLI (4 items, 4 domains), QOLLTI-F (16
items, 7 domains), CQOLC (35 items, no sub-scales), QOL-FV (37 items, 4 domains) and
CarGOQoL (29 items, 10 domains). Two investigators analyzed the content of each item and
grouped the items into common domains.We compared the contents of the instruments with
concepts derived from the in-depth interviews.
RESULTS
Participants
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Participant characteristics are shown in Table 1. The median age of the participants was 52
years. The median caregiving duration was 10 months. Overall, 17 out of 26 participants
were interviewed in English; the rest were interviewed in Chinese.
Domains of Caregiver QoL
We identified twenty-nine themes and 59 sub-themes in six domains, namely ‘physical
health’, ‘mental health’, ‘spiritual health’, ‘social health’, ‘daily life’ and ‘financial health’.
(Table 2) We will illustrate the methodological approach taken for data analysis by
presenting the spiritual health domain in more detail and providing relevant quotes from the
interviews. The other five domains are then presented in less detail for brevity. Exemplars of
quotations for the themes and sub-themes of these domains are presented in Table 3.
Spiritual Health
Spiritual health is defined here as one’s ability to make sense and find meaning and purpose
in life, in the context of living with and caring for a loved family member who is sick. The
more positive meanings made in caregiving experience, the better is the perceived QoL. This
aspect of spiritual health featured prominently in the interviews. There was hardly any
mention of spirituality as a matter of one’s relationship with God, despite probing. This
domain comprised three themes: ‘making sense of patient’s condition’, ‘making sense of
caregiver role’ and ‘self-transformation’. ‘Making sense of patient’s condition’ and ‘making
sense of caregiver role’ have three sub-themes each (Figure 1).
‘Making sense of patient’s condition’ refers to reconstructing a new understanding of
the patient’s diagnosis, suffering, and impending death. Three sub-themes that emerged from
the interviews were: ‘acceptance’, ‘questioning why’, and ‘resignation’. Participants who
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reported acceptance tended to cope better and had future plans in mind as illustrated by the
following excerpt:
“I will just take it as this is part and parcel of life that you have been through. I think
you have to just accept it, alright? Hmm, so there will be a time that this event will
pass and I have to plan for what’s next…. I mean, after the passing of my father…
there will be some changes that I have to still adapt to basically. …And maybe we will
think of some other things to do when it comes.” (E11)
On the other hand, participants who ‘questioned why’ struggled in accepting the
patient’s condition, as exemplified below:
“It’s just that I see him suffering, so I just feel sad. Then sometimes, I even ask him,
“Why, why?” And he, himself, he also asks why must he, you know, get such a
sickness.” (E10)
Some participants felt resigned to the life they were in; they stated it as ‘no choice’
but to ‘accept the reality’. This is illustrated in the following excerpt:
“[T]here’s no choice if we have to shoulder so much. No choice, right? …this is not
that they [the nurses] arrange for us, right? It’s her illness that causes such
pressure...to blame others is unreasonable….Before it happened, we have never
thought of this problem. After she got this illness, we have to think... have to accept, to
face this reality.” (C4)
‘Making sense of caregiver’s role’ refers to the participants reconstructing their
understanding of their role as a caregiver, and thus the impact on his life. The three sub-
themes that emerged from the interviews were ‘questioning why’, ‘resignation’, and
appreciating ‘the value of caregiving’. Participants who found difficulties in caregiving often
Caregiver QOL_ MS v7 9
questioned why and reported an adverse effect on their quality of life, as shown in the
following excerpt:
“Sometimes [I] feel why life is like that. [My] planning is messed up, so [I] am very
frustrated. The frustration is not because of taking care of people, but [I] feel that
[my] life is very, very sad. Why did life become like this?” (C26)
Similarly, ‘no choice’ was mentioned by participants who were resigned to their
caregiver role. They tended to take ‘one step at a time’, and settled for something less ideal,
as illustrated in the following excerpt:
“This is my life. [laughs] How do I blame anyone? [laughs] Anyway I don't have
many brothers and sisters. I don't have a choice so I have to take the responsibility of
taking care of her [sick mother]. If I have many brothers and sisters then I can rely on
one of them to help. I don't have that kind of life and nobody can help…I have no
choice. I am alone, so I have to depend on myself.” (C22)
In contrast, participants who found positive meanings in caregiving, such as the
ability to show filial piety or love, the opportunity to spend time with patient, and the
opportunity for personal growth, tended to report better life quality despite the heavy
caregiving role. This is presented in the excerpt below:
“[W]e have been husband and wife for 40 years, I mean…we knew each other almost
40 years, marry 30 over years, so this kind of love and bond, it is like, how to say, I
won’t say a duty… [but] just to take care.” (E17)
‘Self-transformation’ refers to a change in self. This was manifested in terms of one’s
personality and/or attitude such as becoming more sensitive and understanding (see excerpt
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below), or one’s ability such as becoming more capable in caregiving and handling daily
tasks, as exemplified by the following excerpt:
Interviewer: How would you describe your relationship with your mother?
Participant: I more patient (laugh)…listen to her more. Last time maybe (laugh) no;
last time (laugh) less. (laugh) (E12)
Physical, Mental, Social and Financial Health, and Daily Life
The physical health domain comprised the themes ‘sleep’, ‘fatigue’, ‘other symptoms’ and
‘general health’. The mental health domain comprised the themes ‘cognition’ (‘bad memory’
and ‘poor concentration’), and negative and positive emotional health themes. The social
health domain consisted of four themes: ‘social support’, ‘family relationships worsen’,
‘family relationships improve’, and ‘reduced social contact’. Three themes were identified in
the financial health domain: ‘current financial burden’, ‘future financial worries’ and
‘financial constraints’. The daily life domain comprised the themes ‘daily life constraints’,
‘daily life adjustments’, ‘daily life strains’, and ‘work and career disruptions’. Details of the
themes and sub-themes and exemplars of quotations are given in Tables 2 and 3, respectively.
Content adequacy of existing instruments
Table 2 also indicated whether concerns identified from interviews were addressed by
existing instruments. The (4-item) CQLI only addressed concerns at the domain level, by
asking participants to rate their ‘emotional QoL’, ‘social QoL’, ‘financial QoL’ and ‘physical
QoL’. The (29-item) CarGOQoL only addressed QoL concerns at the sub-theme level. For
example, it asked about “supported by your family” and “supported by friends”, instead of
“social QoL” (domain level) or “social support” (theme level). Conversely, CQOLC, QOL-
FV and QOLLTI-F included items at all three levels.
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‘Spiritual health’ was covered by the CQOLC and QOL-FV at the domain level.
QOL-FV also covered the ‘self-transformation’ theme. No other specific themes or sub-
themes were addressed by the five instruments.
‘Physical health’ was covered by the CQLI and QOLLTI-F only at the domain level.
The themes ‘Sleep’ and ‘fatigue” were addressed by the QOL-FV, CQOLC and CarGOQoL.
The QOL-FV also addressed the themes ‘other symptoms’ and ‘general health’
The ‘mental health’ domain was covered broadly by the QOL-FV, CQLI and
QOLLTI-F. Several concepts of ‘cognition’ and negative emotional health domains were
addressed by the CarGOQoL, CQOLC, and QOL-FV. Some CQOLC and QOL-FV items
required further attribution of ‘fear’ to specific causes (e.g. CQOLC Q9: I fear my loved one
will die). Among the four positive emotional health themes, only the theme ‘feeling hopeful’
was covered by the QOL-FV.
‘Social health’ was covered by the CQLI and QOL-FV at the domain level. ‘Social
support’ was addressed by all instruments, except for the CQLI. Themes on family
relationships were covered by CQOLC, QOL-FV and QOLLTI-F, whereas ‘reduced social
contact’ were addressed by QOL-FV and CarGOQoL.
‘Daily life’ was not covered by any instrument at the domain level. However, all
themes within ‘daily life constraints’ were addressed by the CarGOQoL. Additionally, ‘Daily
life adjustments’ and ‘work and career disruptions’ were addressed by the CQOLC and QOL-
FV. The theme ‘daily life strains’ was unaddressed.
‘Financial health’ domain was addressed only by the CQLI. The theme ‘current
financial burden’ was covered by all other instruments. Only the CQOLC covered the ‘future
financial worries’ theme. ‘Financial constraints ’was unaddressed in all instruments.
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Concepts found in some existing instruments but not from our interviews included
social health sub-themes (satisfaction with sex life, and interference with sexuality) described
in multiple instruments, mental health themes (‘happy’ and ‘satisfied’) described by QOL-
FV, ‘environmental’ themes (patient’s place of stay, and caregiver’s privacy) as described by
QOLLTI-F, transport and concerns over insurance in CQOLC, and difficulty with paperwork
in CarGOQoL.
DISCUSSION
From Chinese family caregivers of patients with advanced cancer in Singapore, we identified
QoL domains and themes relevant to this Asian population. We evaluated that the existing
instruments are not totally adequate for use in this population. The strength of this study is
that caregivers were diverse in background, in terms of both their personal characteristics and
characteristics of the patients they cared for.
We interviewed only Chinese respondents in our study. Therefore, the generalizability
of our results is limited to this ethnic group. We have recruited participants who speak either
English or Chinese so as to avoid bias in the representativeness of the caregiver population.
The interviewers were bilingual, which is common in Singapore. We do not expect the
language of the interview to influence the finding. Due to practical difficulties, all except two
interviews were individual interviews. Hence, the benefits of group dynamics from focus
group discussion could not be fully realized in this study. Rather than excluding the data from
the two participants, we included the data as this would help to achieve theme saturation. A
limitation is that we did not use a forward-backward translation approach in the translation of
Chinese transcripts. However, efforts had been made in the translation process using an
alternative approach to control the quality. Another limitation is that we did not quantitatively
evaluate inter-rater reliability. However, efforts had been made in the training and quality
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control processes to enhance consistent application of the codes. It is possible that primary
and secondary caregivers may have different quality of life concerns. However, due to the
small number of secondary caregivers in this study, we were not able to explore such details.
Among the six QoL domains identified from our study, the physical, mental and
social health domains are relatively well addressed collectively though not individually by the
existing instruments. More content gaps were identified among these instruments in the
spiritual health, daily life and financial health domains, and the positive emotional health
theme.
The scope of spirituality is broad and there is no agreed definition on this concept. It
can include religious and existential aspects such as an appreciation of life, relationship with
self, hope, meaning and purpose in life. Spiritual distress can also be expressed as negative
feelings [22]. The existential aspects of spiritual health featured prominently in the
interviews. An East-West difference in spirituality is not surprising. It has long been noted by
sociologists that Western culture places more emphasis on a person’s spiritual relationship
with God, while Chinese culture places more emphasis on “man’s virtue, harmony, and honor
in his relations with the universe as a whole” [23]. Chinese thinking is said to be “non-
religious” in nature [23].
In the other two less addressed domains, namely ‘daily life’ and ‘financial health’,
participants discussed more diverse themes compared to the content of existing instruments.
These are ‘daily life strains’, ‘work and career disruptions’,’ financial worries’ and ‘financial
constraints, which are likely influenced by context-specific factors, including availability and
accessibility of healthcare and hospice care services, financial assistance for caregivers and
healthcare financing mechanisms. Healthcare financing in Singapore comprises a
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substantially larger proportion of out-of-pocket payments (60.4%), compared to the US
(11.3%), Canada (14.4%), or France (7.5%) in 2011 [24].
The differences among some of the (sub-)themes are subtle, and they overlapped to
some extent. However, they are conceptually distinguishable. We acknowledge that this level
of granularity may not be necessary in the final stage of developing a questionnaire.
However, such information is needed for questionnaire developers to carefully consider the
constructs to measure and the choice of phrases when writing the items in a questionnaire.
The lack of items on sex life is in line with previous research that QoL questions
about sex life had a much higher non-response rate in Singapore than in US or Europe [25].
Singaporeans seemed to avoid discussion of this topic. It is our study limitation that we
cannot be sure whether sex life is indeed an unimportant issue in caregivers here or it is
Singaporeans persistently avoid discussion on this topic. Two environmental concerns were
covered by the QOLLTI-F (patient’s place of stay, and caregiver’s privacy). It does not
surprise us that in this population, in the context of caring patients with advanced cancer,
caregivers did not identify their privacy as an issue. However, as policy discussion about
palliative care and preferred place of care and place of death continues in Singapore in the
context of rapid population aging, we suspect that in the future caregivers may change their
perspective and become more likely to consider patient’s place of stay a QoL issue. This will
need monitoring over time. ‘Happy’ and ‘satisfied’ are positive emotional health themes
addressed by existing instruments and denote an individualistic focus. Conversely, ‘feeling
competent’, ‘feeling appreciated’ and ‘feeling blessed’ were mental health themes discussed
by our study participants. They denote a relational focus. These findings concur with the
Confucian concept of relational self, i.e. selfhood is identified with full recognition of the
individual’s place in membership in the social network and society [26].
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The findings from this study have important implications. First, they suggest a need to
develop a QoL questionnaire specifically for the local population as existing instruments do
not adequately capture the concerns of caregivers in Singapore. The present study provides
the domain/theme framework for this development. Based on these findings, we intend to
develop a local instrument as the next step of this series of research. Second, until a local
QoL instrument is available, one needs to exercise caution when using existing QoL
instruments to conduct research in the local setting. In this study, we have summarized the
coverage of QoL concerns by various instruments and this should help researchers identify
the appropriate instrument for their specific research intents.
CONCLUSIONS
This study reveals domains and themes of QoL important and relevant to Chinese caregivers
of patients with advanced cancer in Singapore. Some of the themes, including positive
emotional health and some themes in the spiritual health and financial health domains, appear
specifically rooted in Chinese culture and the Singaporean healthcare context. Not all
domains and themes are sufficiently addressed by existing QoL measurement scales.
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Acknowledgements
The authors thank staff members at National Cancer Centre Singapore (NCCS) and HCA
Hospice Care for facilitating study recruitment, Ms. Lim Siao Ee, Ms Josephine Chua, Mr
Matthew Ng, and Mr Huang Kai Quan for moderating the sessions, and Ms Angela Yap, Ms
Tan Si Jia, Ms Ng Khai Yin, Ms Ling Jia Ying, Ms Florence Ho, and Ms Hoe Xin Huan for
coding of the transcripts. The authors also thank the support of Duke-NUS/SingHealth
Academic Medicine Research Institute and Ms Taara Madhavan (Associate, Clinical
Sciences, Duke-NUS Graduate Medical School) in editing this manuscript.
This work was supported in part by the Duke-NUS Signature Research Program funded by
the Agency for Science, Technology and Research (A*STAR), Singapore, and the Ministry
of Health, Singapore, and in part by the Lien Center for Palliative Care Grant (LCPC(ER)/
2012/0003). YBC was supported by the National Research Foundation under its Clinician
Scientist Award (Award No. NMRC/CSA/039/2011) and administered by the Singapore
Ministry of Health’s National Medical Research Council.
Author Contribution
YBC, GLL, RA, GSYP and HLW designed the study. YBC, RA, GP, BHHG and CFW
implemented the study. MYLO, GLL, HLW, CFW, GKTF and YBC analyzed and
interpreted the data. MYLO and GLL wrote the first draft of the manuscript. All authors
participated in the review and revision of the manuscript. All authors approved the
submission.
Conflict of interest
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All authors declare that there are no conflicts of interest. The authors have full control of all
primary data, and they agree to allow the journal to review the data if requested.
Ethical Standards
The study was approved by the Institutional Review Board of the National University of
Singapore. Written consent was obtained prior to the interview. The study was performed in
accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its
later amendments
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Legend to Figure 1
The “spiritual health” domain and its themes and sub-themes.
Caregiver QOL_ MS v7 22
Table 1. Demographics of participants (n=26)
Participant characteristics N %
Caregiving role
Primary 23 88.5
Secondary 3 11.5
Relationship to patient
Spouse 13 50.0
Son/Daughter 8 30.8
Parent 1 3.8
Other 4 15.4
Age (years)
28-40 4 16.7
41-55 11 45.8
56-74 9 37.5
Sex
Male 8 30.8
Female 18 69.2
Marital status
Married 22 84.6
Single 4 15.4
Religion
Buddhist 11 44.0
Catholic /Christian 7 28.0
Hindu 1 4.0
Taoist 1 4.0
No religion 5 20.0
Education
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No formal education 1 4.2
Primary School 3 12.5
GCE "N", "O" or “A” Levels 9 37.5
Post-Secondary 11 45.8
Caregiving duration (months)
1 - 20 18 69.2
21 - 40 3 11.5
41 - 60 1 3.8
61 - 84 4 15.4
Patient’s primary cancer diagnosis
Lung 6 23.1
Colon 5 19.2
Breast 4 15.4
Brain 2 7.7
Other 9 34.6
Patient’s ECOG status
0 2 7.7
1 10 38.5
2 4 15.4
3 4 15.4
4 6 23.1
Table 2. Domains, themes and sub-themes of caregiver quality of life identified from caregiver interviews
DOMAINS and themes
Sub-themes
CQ
LI
CQ
OL
C
QO
L-F
V
QO
LL
TI-
F
Car
GO
QoL
PHYSICAL HEALTH
X X X
Caregiver QOL_ MS v7 24
Sleep XDifficulty falling and staying asleep X XLess sleep XPoor sleep X XDisrupted sleep XChanged sleep patterns X
Fatigue XTired or exhausted (non-specific) XPhysically tired X XMentally tired X XLack of energy X
Other symptoms (only symptoms mentioned by two or more caregivers are listed)Aches and pains XInjury sustained due to caregivingAppetite and weight loss X X
General healthWeakening of body XWorsening or delaying treatment of existing disease
MENTAL HEALTH X XCognition X Bad memory X X
Poor concentration X X XAnxiety X X X
Worry X X XFear X X X
DepressionSadness X X XHopelessness X X
Helplessness X X XStrain
Stressed X XBurdened X
Guilt X XAnger X X
AngerFrustration
Feeling competent
(feeling competent as a caregiver)
Feeling appreciated
(feeling appreciated as a caregiver)
Feeling hopeful (feeling hopeful about patient’s condition , i.e. getting well, improving, or maintaining condition)
X
Feeling blessed (feeling blessed when receiving support, counting blessings about situation)
SPIRITUAL HEALTH
X X
Making sense of patient’s
(Making sense of patient’s diagnosis, suffering and death)
Caregiver QOL_ MS v7 25
condition Questioning whyAcceptance Resignation
Making sense of caregiver role
(Impact of caregiving role on one’s life
Questioning why ResignationValue of caregiving (filial piety, love, an opportunity to spend time with patient, or having a lesson to learn from this experience)
Self-transformation
(change in own personality, attitude or ability, e.g. become more capable, understanding, patient, sensitive, etc.)
X
SOCIALHEALTH X XSocial support X X X
Support from family X X X XSupport from friends X X X XSupport from religious groups X X X
Family relationships worsen
(including relationship with patient)X X
Neglecting other family members X XConflict with family members X X X
Family relationships improve
(including relationship with patient)X X
Increased bonding with family members X X
Appreciation from family members X X
Reduced social contact (friends)
X X
Less time spent with friends X XReduced social activity X XLost friends
DAILY LIFE Daily life constraints
X
Not able to leave house XNo alone time X XNo time for recreational activities X XNot able to do what I want to do X
Daily life adjustments
Adjustments and workarounds XPlanning changes for future
Daily life strainsLife becoming very hecticOverworked and taxed
Work and career disruptions
X
Caregiver QOL_ MS v7 26
Poorer work performance (mistakes, sleepy, cannot concentrate)
X
Hinders career advancement XStop work or can’t find work XMaking other arrangements (flexi-work, work at home, cannot go overseas)
X
Work fewer hours XFINANCIAL HEALTH DOMAIN
X
Current financial burden
X X X X
Depleted savings (due to medical and other caregiving expenses)
X X X X
Difficulty obtaining financial aid X X X XFuture financial
worriesX
Worry over future expenses (uncertain how long patient will live, how patient’s condition will deteriorate)
X
Worry over future income and aid XFinancial constraints
Adjustments (cheaper alternatives, forgo things, thinking twice)Restrictions (reduce holiday travel, reduce eating out)
X indicates that a concept was addressed by an item at any of the domain, theme, or sub-theme levels.
Caregiver QOL_ MS v7 27
Table 3. Exemplars of perceived QoL of family caregivers of advanced cancer patientsDomain Theme Example of quote *
Physical Health
Sleep
Fatigue
Other symptom
General health
“I have to wake up to rub his back to make him slightly more comfortable. Frankly speaking, I love to sleep but there is no other way, so I have to stay awake.” (C26)
“I am very tired in the morning [because] not enough sleep at night. Then no energy in the morning, that’s why [I am] very tired…mentally very tired, very much like to go and sleep.” (E19)
“Sometimes I help her and when I get up, my back would be painful and sore.” (C22)
“I also feel my body becoming weaker like this... before she fell sick, I was okay.” (C4)
Mental Health Cognition
Negative emotion
Positive emotion
“Now, my memory is not so good….Sometimes [I have] to try very hard to recall. My memory used to be very good.” (E12)
“There’s always this guilt in me. Am I doing my best? Am, am I doing enough? This is the thing that I am struggling with.” (E24)
“’Doctors can say 3 to 6 months, let’s try and beat that. Let’s try and beat that.’ I always told my brother that. I mean nobody can tell you when you can go, you know. If it’s God’s will, so be it. But if it’s not, then let’s just try our best.” (E16)
Social Health Social support
Family relationship worsen
Family relationship improve
“Every morning I drink tea at the market…we (interviewee and friends) will sit together and chat…I feel more opened up after chatting; my heart feels better so that it doesn’t feel too stuck.” (C21)
“After having illness, her (sick wife) emotions are getting worse…we just try our best not to irritate her. There will be quarrels if too much is said, very troublesome.” (C9)
“One day if she (sick mother-in-law) is no longer with us, this kind of bonding can never be taken away because [during] this period, the bonding is there. We never had
Caregiver QOL_ MS v7 28
Reduced social contact
this kind of bonding [before].” (E23)
“[There is] no more social life already because…I only go out when I need to run his errands. Besides that, I don’t really meet up with my friends and all that.” (E7)
Daily Life Work and career disruptions
Daily life constraints
Daily life adjustments
Daily life strains
“I mean in your career you would like to do better…doing better means that you have to be more committed to your work…even if I want to do well in my career, I do not have the luxury of time.” (E11)
“Last time I went out, shopped my own things, see what I wanted to buy, but I’ve not been doing all this…because now he’s like this.” (E10)
“I cannot go out as and when I like. Even if I want to run his errand, I make sure I settle his things; he is well at that moment. Then I can go out.” (E7)
“…it was very busy, maybe too busy…shuttling [between] hospital and home, and trying to manage my housework and then go.” (E23)
Financial Health
Current financial burden
Future financial worries
Financial constraints
“Our savings has dropped. Recently, my insurance bill came and it stated that my bank [account] is empty.” (C5)
“Medifund (an endowment fund set up by the Government to help needy Singaporeans who are unable to pay for their medical expenses) is finishing soon. Sometimes [I] apply, [it does] not necessarily be approved. But if [I] cannot get it, it will be troublesome for [me].” (C9)
“’Cut down’ means cannot spend as you wish, cannot go for nice steak, cannot go to a restaurant, can only buy hawker food. Not much shopping anymore, enough to wear is okay.” (E25)
* Slight grammatical correction was made without alternating the semantics and essence of cultural meanings. Otherwise colloquial use of English is quoted as it is.
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