oar.a-star.edu.sgoar.a-star.edu.sg/jspui/bitstream/123456789/899/1/QOL of... · Web viewGrant, M., Sun, V., Fujinami, R., Sidhu, R., Otis-Green, S., Juarez G, et al. (2013). Family

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

Caregiver QOL_ MS v7 1

mailto:[email protected]

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


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


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


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


http://en.wikipedia.org/wiki/Singlish

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


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


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


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


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


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.


‘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.


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


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


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].


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.


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


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.


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


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


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)


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


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.


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


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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