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 117570

2 Center for Quantitative Medicine, Duke-NUS Graduate Medical School, 20 College Road, Singapore 169856

3 HCA Hospice Care, 12 Jalan Tan Tock Seng, Singapore 308437

4 Department of Palliative Medicine, National Cancer Centre Singapore, 11 Hospital Drive, Singapore 169610

5 Department of Psychosocial Oncology, National Cancer Centre Singapore, 11 Hospital Drive, Singapore 169610

6 Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, 10 Medical Drive, Singapore 117597

7 Department of International Health, University of Tampere, FI-33014 Tampere, Finland

8 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:

Tel: (65) 6576 7379

Fax: (65) 6225 1244

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 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: