1
Quality of life of family caregivers of cancer patients in Singapore and globally Haikel A. LIM 1 H.BSSc, MSc
[email protected]
Joyce Y. S. TAN 1 H.BSSc
[email protected]
Joanne CHUA 2 BSc, MSc, MPsy
[email protected]
Russell K. L. YOONG 1
[email protected]
Siew Eng LIM 3 MB BCh BAO, ABM (Int Med), ABM (Med Onc)
[email protected] Ee Heok KUA 1, 2 MBBS, MD, FRC (Psych)
[email protected]
Rathi MAHENDRAN 1,2,4* MBBS, MMed (Psych), MMedEd
[email protected]
1
Department of Psychological Medicine, National University of Singapore, Singapore, NUHS Tower Block, Level 9, 1E Kent Ridge Road, Singapore 119228
2
Department of Psychological Medicine, National University Hospital, Singapore, NUHS Tower Block, Level 9, 1E Kent Ridge Road, Singapore 119228
3
Department of Haematology-Oncology, National University Cancer Institute, Singapore, NUHS Tower Block, Level 7, 1E Kent Ridge Road, Singapore 119228
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Duke-NUS Graduate Medical School, Singapore, 8 College Road, Singapore 169857
*Corresponding Author: Dr Rathi Mahendran, Associate Professor and Senior Consultant Psychiatrist Department of Psychological Medicine, National University Health System, Singapore
Manuscript accepted for publication in Singapore Medical Journal on 18 December 2015. The final version of this publication is available at Singapore Medical Association. Please cite this article as: Lim, H. A., Tan, J. Y. S., Chua, J., Yoong, R. K. L., Lim, S. E., Kua, E. H. & Mahendran, R. (2016). Quality of life of family caregivers of cancer patients in Singapore and globally. Singapore Medical Journal, in press.
2 Abstract Background: Family caregivers of cancer patients often suffer from an impaired quality of life (QOL) due to stress arising from the responsibility of caregiving; most of the research on QOL impairments, however, have focused on Western populations. This exploratory study sought to examine the levels of QOL in an Asian population, Singapore, in relation to other countries within and outside of Asia, and investigate the association between sociodemographic factors and QOL impairments in caregivers in Singapore. Method: 258 caregivers of cancer patients receiving outpatient treatment completed the Caregiver Quality of Life Index – Cancer (CQOLC) and a socio-demographic survey. Published CQOLC total scores for Turkey, Iran, Taiwan, Korea, United Kingdom, United States, and Canada were used for comparison to the Singapore dataset and demographic relationships were examined. Results: Caregivers in Singapore and in Asia, have lower CQOLC total scores relative to their Western counterparts. Male caregivers of Chinese ethnicity, those who had parental relationships to their care recipient, and those caring for advanced-stage cancer patients were found to have an impaired QOL. Conclusions: The findings suggest possible areas to address in providing support for cancer caregivers with the need to reconcile cultural diversity, values and societal expectations and demographic characteristics in Singapore. Keywords: Family caregivers, cancer patients, Quality of Life;
3 Introduction
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The chronicity of cancer has shifted care to the home, with family members now often
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the main care providers supporting their cancer patients’ needs [1]. While cancer caregiving
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is a meaningful experience, it is also associated with a deteriorating quality of life (QOL) [1],
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greater psychiatric sequelae [2], and an increased risk of mortality for the caregiver [3]. These
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effects on caregivers also ultimately affect the quality of care received by cancer patients [4].
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Further, the deteriorating QOL may be of significance in Asian countries like Singapore,
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where cultural norms of filial piety [5] and societal expectations require family members to
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take on the additional responsibility as main caregivers [6]. It is thus essential to identify,
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understand, and support these family caregivers and, by extension, their care recipients.
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Unfortunately, much of the work on the associations between caregivers’ QOL and
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demography have been conducted in Western societies and settings [7]. Caregivers stress and
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needs have not yet been identified amongst cancer caregivers in Singapore, leading to a gap
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in service provision for this group.
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The present exploratory study thus sought to address the paucity of research on family
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caregivers’ QOL in Singapore by (1) determining their QOL using objective measures (2)
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identifying potential sociodemographic correlates of QOL impairments and (3) comparing the
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QOL across other countries in Asia and beyond. We hypothesized that cancer caregivers in
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Singapore would face impairments to their QOL comparable to caregivers in other countries
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and there would be demographic differences in caregiving. Methods
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Participants and Procedures
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Data from three cross-sectional ethics-approved studies (National University of
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Singapore Institutional Review Board and National Healthcare Group Domain-specific
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Review Board) conducted in Singapore between 2012–2014 were pooled (see Table 1).
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Response rates were 60–87% and participants provided informed consent. Participants had to
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be family caregivers of patients with cancer, able to communicate in English or Mandarin,
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and at least 18 years of age. Domestic helpers as caregivers and those known to have mental
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health problems or cognitive impairment were excluded from the study analyses. Participants
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were all recruited at the waiting area of the outpatient clinic, while they were accompanying
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their care recipients for appointments.
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Instruments
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Participants completed a sociodemographic questionnaire and the Caregivers’ Quality
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of Life Index – Cancer (CQOLC) [8]. The CQOLC which has the best psychometric
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properties amongst all disease-specific QOL measures for cancer caregivers [9], has been
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previously validated in Singapore [5], and used extensively elsewhere. It assesses QOL
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through a 35-item self-report measure, rated on a 5-point Likert-type scale from 0 (not at all)
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to 4 (very much) across four domains: Burden, Disruptiveness, Positive Adaptation and
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Financial Concerns. A total score was obtained by summing up all items (maximum score:
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140), with a higher score denoting better QOL [8]. Both the English and Mandarin versions
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[10] of the CQOLC have been validated for use in Singapore and have demonstrated
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adequate reliability. A Singapore-specific factor-structure (CQOLC-S25) has also been
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developed, clustering 25 of the 35 items into five domains (Burden, Physical/Practical
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Concerns, Emotional Reactivity, Self Needs, and Social Support) [5].
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Study Selection
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To determine the differences between Singapore and other countries, a scoping review
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of the literature was conducted to determine suitable sample populations for comparisons.
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The PubMed database was searched in May 2015 without language or date restrictions using
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((((cancer) AND caregiver) AND quality of life)) AND ((((caregiver quality of life index
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cancer) OR cqolc*) OR cqol-c) OR cqol$c). Of the 127 articles, only 66 (52%) were related
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to cancer caregivers’ QOL, and only 35 (28%) used the CQOLC. Of the articles using the
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CQOLC, 8 (23%) used caregivers of inpatients, and 13 (37%) had missing CQOLC total
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scores. Where there was more than one study from the country using a different dataset and
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reporting mean CQOLC scores, the most recent and comparable sample was used. The final
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studies used were from: Taiwan [10], South Korea [11], Iran [12], Turkey [13], United
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Kingdom [14], United States [15], and Canada [16].
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Data Analyses
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Data were analysed using the Statistical Package for Social Sciences Version 20
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(SPSS, Inc.; Chicago, IL, USA) with alpha level set at .05. One-sample Bonferroni-corrected
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t tests were employed to compare differences between Singapore and the other countries on
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the CQOLC total score (as the original factor structure has not been internationally
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validated). Independent samples t tests or analyses of variance (ANOVAs) with Tukey HSD-
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corrected post-hoc analyses were employed to examine the sociodemographic factors
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associated with the validated Singapore-specific factor structure (CQOLC-S25) [5].
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Results Demographic Predictors of QOL Impairments The demographic variables and CQOLC scores using the locally-validated CQOLCS25 are shown in Table 1. Analyses revealed that men had significantly lowered CQOLC-
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S25 scores in the domains of Physical/Practical Concerns and Self Needs. Ethnically Chinese
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caregivers, those caring for their parents (vs. spouses) and advanced-stage patients (vs. early-
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stage) reported lower levels of Social Support. Caregivers of advanced-stage patients,
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however, reported better QOL in the Burden domain (vs. early-stage). No other demographic
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variables were associated with QOL impairments.
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Comparison with Other Countries
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The mean CQOLC total score using the 35-item CQOLC for the Singapore sample
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was 83.5 ± 19.1 (Range: 22.3–131 out of 140) and this was used in the comparisons with
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overseas scores. Family caregivers of cancer patients in Singapore were found to have
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significantly impaired QOL as compared to those in the West (see Table 2): United Kingdom,
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United States, and Canada. Amongst the Asian countries, Singapore cancer caregivers had
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significantly better QOL than those in Iran and South Korea, and had similar QOL to those in
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Turkey and Taiwan.
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Discussion Cancer caregivers in Singapore and other Asian countries have an impaired QOL
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relative to their counterparts in Europe or America. Caregiving experiences within the family
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depend upon not only on available resources and caregiving demands but are also shaped by
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existing family dynamic systems, broader socio-cultural and religious beliefs and caregiver
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resilience and the capacity to withstand crises and adapt and cope [17]. The findings likely
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reflect the vast differences amongst respondents from the various countries. While cross-
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cultural differences were not explored, the available literature on caregiving highlight themes
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of filial piety and ‘obligatory care’ as motivations for caregiving [18, 19] particularly in
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Asian (Singapore, Taiwan, Korea) and Muslim (Turkey, Iran) societies.
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Similarly, caregivers of other clinical populations, such as dementia, also appeared to
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be influenced by these notions of filial piety and ‘obligatory care’. A study investigating the
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factor structure of Zarit Burden Interview among Singaporean caregivers of dementia patients
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identified a unique dimension described as worry about the caregiving performance (WaP)
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[20], suggesting the presence of expectations in the standard of care provided among Asian
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caregivers. In neighbouring Malaysia, a country similar in culture to Singapore, having
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formal support in caregiving—such as a domestic maid or private nurse—did not alleviate
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family caregivers’ burden of caring for dementia patients, thus emphasizing the value of
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providing familial care [21]. It may perhaps also be that Asian patients themselves experience higher symptoms of
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emotional stress and unmet needs [22] as compared to the Western or general population
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[23]. This may influence their caregivers’ emotional well-being, leading to QOL impairments
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[24] through the exacerbation of the negative appraisal of the caregiving context and increase
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role strain. Furthermore, the Asian societies included in the present study represent rapidly
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developing post-industrial societies that may have contributed to a poor work–life balance
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and increased stressors on both patients and their caregivers.
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Findings revealed that, within Singapore, age and education were not significantly
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associated with QOL. These findings are in contrast to other studies globally that have
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suggested the influence of these predictors [2, 25, 26]. Given Singapore’s healthcare model,
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such concerns may therefore not be as significant a determinant to QOL, although,
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admittedly, income was not captured in the present study. Caregivers of patients with
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advanced-stage cancers were understandably found to experience greater burden, because of
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treatment, as well as an impaired QOL in the domain of social/family support. Advanced
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cancers may bring about the reality of palliative care and mortality, which can create strain
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amongst family members in care planning and end-of-life issues. Parents in caregiver roles
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were also understandably found to face less social/family support given that their children
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may not yet be able to assist them with caregiving.
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Male caregivers in Singapore were also found to have a more impaired QOL as
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compared to their female peers in the domains of physical/practical concerns and self-needs;
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this is in contrast to other studies that have reported worse QOL in women that were
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attributed to their gender role [27]. In Singapore, as in many Asian societies, the
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responsibility of family caregiving traditionally often falls to women, while men are expected
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to provide for the family. It therefore seems that when some men (or sons, or husbands) are
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forced to balance both the home and work sphere to care for a relative with cancer, they
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experience additional role strain.
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Research on interventions for family caregivers have shown that existential therapy
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focusing on the development of hope [28] and home care services [29] are effective in
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supporting caregivers of care recipients with advanced cancer and palliative care needs.
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Education in communication skills for spousal caregivers of breast cancer patients [30] may
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suggest the usefulness of communication training as a means of support for male caregivers.
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However, to our best knowledge, no interventions catering specifically to caregivers who are
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caring for their parents have been conducted.
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These results should be interpreted with caution, given that these are from exploratory
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secondary analyses of primary data. While every effort was made to ensure the similarity of
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sample populations in the selected studies, inherent in all mixed-cancer cohort research lies
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various disease and health characteristics that cannot be controlled for. In addition,
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potentially confounding data on caregiver health, wealth, and employment were not captured
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and controlled for. Another possibility for the impaired QOL in Asian caregivers could
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perhaps be the CQOLC itself—cross-cultural validations of the instrument in each of the
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Asian countries have suggested a different factor-structure underlying disease-specific
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caregiver QOL, with poor model fit and internal reliability for the overarching latent
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CQOLC. Different aspects of caregiving may therefore contribute to overall disease-specific
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QOL; however, as inherent in all cross-cultural research there remain cultural variations that
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cannot be adequately captured [31], even with more global or general health-related QOL
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instruments [9].
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Taken together, the findings provide an avenue for future research into the association
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of demographic characteristics with caregiver QOL within a particular cultural context. With
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societal expectations and beliefs differing across cultures, the implications of these varying
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cultural features on caregiver QOL, operating through diverse demographic characteristics,
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deserve greater attention.
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