Understanding the influence of bereaved family caregivers' perception of a good death on their caregiving experiences: A meaning making perspective.

This retrospective qualitative study aimed to examine the influences of bereaved family caregivers' perception of good death for their dying spouse or parent on their caregiving experiences. A purposive sample of 15 participants were recruited from a hospice and their narratives were analyzed. Using the interpretative phenomenological analysis approach, five key components of a perceived good death that intermixed well-established Western attributes with deeply rooted Asian values were identified and meanings ascribed to their caregiving experiences were based on that. These findings suggested implications for practice on the entire service continuum from palliative and end-of-life care to bereavement services.

Deathbed experiences and meaning-making: Perspectives of family caregivers of patients who received cancer palliative care.

OBJECTIVES: The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death. METHODS: In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted. RESULTS: A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events, and Gaining strength and personal growth. SIGNIFICANCE OF RESULTS: The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

Supporting the Bereaved in the COVID-19 Era: A Scoping Review of Interventions.

People whose family member(s) friend(s) have died from COVID-19 or other causes have been deeply affected by the physical and social restrictions imposed during the pandemic. These limitations have affected end-of-life care and support for the bereaved. The purpose of this review is to identify: the published studies of evaluated programs about interventions for people who have experienced bereavement during the COVID-19 pandemic, and to develop recommendations for researchers and policy makers. Using scoping review methodology, a literature review was undertaken for articles published from January 1, 2020 through February 28, 2023 to identify interventions shown to be beneficial to people who have experienced the death of loved ones during the COVID-19 pandemic. The search yielded 1588 articles of which three studies met the criteria of utilizing a pre and post-test design with only one of these, a randomized controlled trial. The interventions included in this review demonstrate preliminary efficacy.

Understanding Bereavement Experiences and Coping Among Bereaved Family Caregivers in Singapore: Positive Meaning Reconstruction in the Dual Process Model.

The aim of this retrospective qualitative study was to examine the bereavement experiences and coping of family caregivers, with the Dual Process Model (DPM) as the theoretical framework. A purposive sample of 15 bereaved family caregivers, who had lived with and/or cared for their dying spouse or parent, were recruited from a local hospice. Using the interpretative phenomenological analysis approach, all one-to-one interviews were audio-recorded, transcribed, and entered into NVivo 12 Plus software for analysis. The major themes in this study mirrored well-established components of the DPM, including the concept of overload from the revised model. The cognitive processes of meaning making, an integral component of the DPM, were also discovered and put forth as a fifth theme to illustrate reconstruction of positive meaning. This is posited as an adaptive outcome to successful oscillation between loss-oriented and restoration-oriented grieving processes and, hence, leading to implications for bereavement care and support.

Re-Conceptualizing Bereavement Care Practices: Insights Gained from Service Providers.

The management and delivery of bereavement care and support services present practical challenges. A national-level, qualitative study was conducted to examine the current practices in Singapore. The study's purpose was to inform bereavement care practices by drawing from perspectives of service providers offering death, dying and bereavement-related services. This qualitative study was undertaken using focused group discussion (FGD) with service providers from the health, social and death-related sectors. Ten FGDs were conducted with a total of 69 participants. Thematic analysis yield two themes - identifying challenging circumstances to provide bereavement care and strategies for dealing with the gaps in service delivery. The service providers' experiential knowledge could be borrowed to strengthen the current bereavement care practices for the good of the community. The findings have informed the reconceptualization of a local bereavement care and support service model, with the public health model as the recommended underpinning conceptual framework.

Developing item banks to measure three important domains of health-related quality of life (HRQOL) in Singapore.

OBJECTIVES: To develop separate item banks for three health domains of health-related quality of life (HRQOL) ranked as important by Singaporeans - physical functioning, social relationships, and positive mindset. METHODS: We adapted the Patient Reported Outcomes Measurement Information System Qualitative Item Review protocol, with input and endorsement from laymen and experts from various relevant fields. Items were generated from 3 sources: 1) thematic analysis of focus groups and in-depth interviews for framework (n = 134 participants) and item(n = 52 participants) development, 2) instruments identified from a literature search (PubMed) of studies that developed or validated a HRQOL instrument among adults in Singapore, 3) a priori identified instruments of particular relevance. Items from these three sources were "binned" and "winnowed" by two independent reviewers, blinded to the source of the items, who harmonized their selections to generate a list of candidate items (each item representing a subdomain). Panels with lay and expert representation, convened separately for each domain, reviewed the face and content validity of these candidate items and provided inputs for item revision. The revised items were further refined in cognitive interviews. RESULTS: Items from our qualitative studies (51 physical functioning, 44 social relationships, and 38 positive mindset), the literature review (36 instruments from 161 citations), and three a priori identified instruments, underwent binning, winnowing, expert panel review, and cognitive interview. This resulted in 160 candidate items (61 physical functioning, 51 social relationships, and 48 positive mindset). CONCLUSIONS: We developed item banks for three important health domains in Singapore using inputs from potential end-users and the published literature. The next steps are to calibrate the item banks, develop computerized adaptive tests (CATs) using the calibrated items, and evaluate the validity of test scores when these item banks are administered adaptively.

Physical, psychological, social, and spiritual aspects of end-of-life trajectory among patients with advanced cancer: A phenomenological inquiry.

The study examined and described the perspectives of people living with advanced cancer and the changes over time in their needs and experiences. This paper reports the accounts of 11 terminally-ill people who gave a total of 25 in-depth interviews. Participants were recruited when they began receiving home hospice care service, and they were followed up over time, as their disease progressed. Framework method was used to organize the data and identify themes. The findings highlighted that end-of-life care needs to be holistic, encompassing physical, psychological, social, and spiritual needs, as well as dynamic along the course of disease progression.

Psychosocial interventions for advanced cancer patients: A systematic review.

OBJECTIVE: Psychosocial care for advanced cancer encompasses a wide range of interventions that help patients make life-changing decisions, manage debilitating symptoms, confront impending mortality, and improve other patient outcomes. Psychosocial care is becoming increasingly available to advanced cancer patients; however, an overview of the various types of interventions is lacking. METHODS: The current review systematically examined randomised-controlled trials of psychosocial interventions for advanced cancer patients from January 2007 to June 2018. MEDLINE, CINAHL Plus, PsycINFO, and Scopus databases were searched, and a total of 68 studies were included in the review. RESULTS: We found a range of psychosocial interventions studies and grouped them based on six theoretical/clinical approaches: cognitive behavioural therapy based; meaning enhancing; dignity, life review, and narrative; other counselling; education only; and music, writing, and others. The different psychosocial interventions had significantly varied characteristics (eg, format, duration, and resources used) to address issues faced by advanced cancer patients. There is compelling evidence for the use of meaning-centred psychotherapy to improve meaning and quality of life and use of question prompt lists and communication skills training to improve communication with health care providers. CONCLUSIONS: Some psychosocial interventions are further along in establishing evidence for effectiveness. Our findings demonstrate a growing capacity within the field to meet the psychosocial needs of advanced cancer patients. Lessons and direction in clinical practice and future research endeavours are discussed.

Development and evaluation of a quality of life measurement scale in English and Chinese for family caregivers of patients with advanced cancers.

BACKGROUND: The quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore. METHODS: Scale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants). RESULTS: Factor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results. CONCLUSION: A new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).

Development and calibration of a novel social relationship item bank to measure health-related quality of life (HRQoL) in Singapore.

BACKGROUND: Social relationships (SR) is an important domain of health-related quality of life. We developed and calibrated a novel item bank to measure SR in Singapore, a multi-ethnic city in Southeast Asia. METHODS: We developed an initial candidate pool of 51 items from focus groups, individual in-depth interviews and existing instruments that had been developed and/or validated for use in Singapore. We administered all items in English to a multi-stage sample of subjects, stratified for age and gender, with and without medical conditions, recruited from community and hospital settings. We calibrated their responses using Samejima's Graded Response Model (SGRM). We evaluated a final 30-item bank with respect to Item Response Theory (IRT) model assumptions, model fit, differential item functioning (DIF), and concurrent and known-groups validity. RESULTS: Among 503 participants (47.7% male, 41.4% above 50 years old, 34.0% Chinese, 33.6% Malay and 32.4% Indian), bi-factor model analyses supported essential unidimensionality: explained common variance of the general factor was 0.805 and omega hierarchical was 0.98. Local independence was deemed acceptable: the average absolute residual correlations were < 0.06 and 1.8% of the total item-pair residuals were flagged for local dependence. The overall SGRM model fit was adequate (p = 0.146). Five items exhibited DIF with respect to age, ethnicity and education, but were retained without modification of scores because they measured important aspects of SR. The SR scores correlated in the hypothesized direction with a self-reported measure of global health (Spearman's rho = - 0.28, p < 0.001). CONCLUSION: The 30-item SR item bank has shown acceptable psychometric properties. Future studies to evaluate the validity of SR scores when items are administered adaptively are needed.

Validation of the Comprehensive Needs Assessment Tool in Patients with Advanced Cancer.

AIMS: The 59-item Comprehensive Needs Assessment Tool (CNAT) for cancer patients is an English language survey developed in South Korea. The objective of this study was to validate the English version of CNAT in advanced cancer patients in Singapore. METHODS: This was a cross-sectional survey where advanced cancer patients completed the CNAT in English. Confirmatory factor analysis was used to assess construct validity. For known groups validity, independent samples t-test was used to compare CNAT scores based on the Karnofsky performance status and outpatient versus inpatient setting. Cronbach's alpha was used to measure internal consistency. RESULTS: A total of 328 advanced cancer patients were recruited. The mean age was 59.6 years and 49.1% were male. Majority (68.0%) were Chinese, 20.4% were Malay, 7.9% were Indian, and 3.7% were of other ethnicities. The 7-factor model previously established in Korea showed sufficient construct validity with root mean square error of approximation 0.037 and comparative fit index 0.944. All 59 items had a factor loading ≥0.5. Group invariance test showed no difference in the pattern of factor loadings between ethnic Chinese and other ethnic groups (P = 0.155). For known groups validity, there were significant differences in CNAT scores by performance status and outpatient versus inpatient setting. The CNAT total and factor scores showed good internal consistency with Cronbach's alpha of between 0.80 and 0.937. CONCLUSIONS: The CNAT showed construct and known-group validity and internal consistency in this study sample and can be used to assess the unmet needs of advanced cancer patients in the Singapore context.

The Complexities of Doctor-Patient-Family Communication in an Asian Oncology Setting: Concordance and Discordance Among Patient Preferences, Family Preferences, and Perceived and Actual Communication.

This article reports on a pilot study that examined the complexities of doctor-patient-family communication in an oncology setting in Singapore. Twenty consultation visits were audio-recorded and a postconsultation questionnaire was administered to patients and their accompanying person (AP) to examine their communication preferences. Patients and APs rated physician expertise and message content as highly important; supportive elements of the communication were rated as less important. Patients preferred information concerning their condition, while APs preferred information regarding treatment options. There was discordance between what was perceived by the patient/AP and actual delivery, and within patient-AP dyads. Our findings elucidate some of the complexities in communication preferences in an Asian oncology context that can inform clinical practice.

Validation of Chinese and English versions of the Holistic Well-being Scale in patients with cancer.

OBJECTIVE: The study aims to examine the psychometric properties of the Holistic Well-Being Scale (HWS), a new instrument developed on the Eastern concepts of affliction, and equanimity in a new sample involving patients with cancer. METHODS: A cross-sectional survey was conducted with 300 patients with cancer in Singapore. The patients completed the HWS, WHO-5 Well-Being Index (WHO-5), and Hospital Anxiety and Depressions Scale (HADS). Thirty-two patients participated in the 2-week retest. RESULTS: Mixed findings were obtained from the original seven-factor model in our sample: six factors had acceptable internal reliabilities (Cronbach's α; range, 0.657-0.809), and construct validities were partially supported. Factor analysis suggested three factors: Blissful-self (α = 0.874), Disturbed-self (α = 0.885) and Embittered-others (α = 0.709). The novel factors demonstrated good test-retest reliability (ICC; range, 0.894-0.930) and construct validities, which were shown by significant correlations with HADS and WHO-5 in the predicted directions. CONCLUSIONS: The present study is the first step taken to validate a scale that is essential in the development of culturally appropriate psychosocial interventions to support and promote personal well-being of cancer patients. The findings suggest that the three-factor model may be more applicable to the Singapore context, but it does not necessarily invalidate the original HWS. The results were discussed in terms of the meaning of the original HWS factors and cultural differences in coping behaviors between Singapore and Hong Kong, though both are Asian countries. The HWS could be further tested in other Asian populations as achieving holistic well-being is a common goal for patients in many cultures.

Quality of life domains important and relevant to family caregivers of advanced cancer patients in an Asian population: a qualitative study.

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/day care 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.

Understanding the concept of a "good death" among bereaved family caregivers of cancer patients in Singapore.

OBJECTIVE: The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients. METHOD: The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach. RESULTS: A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience. SIGNIFICANCE OF RESULTS: Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

Reference values for the short forms of the Singapore Caregiver Quality of Life Scale.

PURPOSE: The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describing the distribution of the total and domain scores are available for the full-length version, but they are not yet available for the short forms. This study aimed to estimate the reference values for the short forms. METHODS: Data from a cross-sectional survey of 612 family caregivers of patients with advanced cancer in Singapore were fitted in quantile regression models. Percentiles were estimated by regressing the short forms' scores on caregiver characteristics. Classification by the reference values for the short forms and the full-length version were compared and agreement was evaluated. RESULTS: The caregiver's role in caring for the patient and the patient's performance status were associated with the percentiles of the total scores and most domain scores (each Bonferroni-adjusted p-value, PB, < 0.05). Higher-educated caregivers were categorized into higher percentiles according to the SCQOLS-15 and SCQOLS-10 total scores and the SCQOLS-15 Mental Well-being and Financial Well-being domain scores (each PB < 0.05). Ethnicity was associated with the SCQOLS-15 Physical Well-being and Experience & Meaning domains (each PB < 0.05). The percentiles for the short forms showed moderate to substantial agreement with those for the full-length version in terms of classifying caregivers into percentile intervals (quadratic-weighted Kappa = 0.72 to 0.92). CONCLUSION: Reference values for the SCQOLS-15 and SCQOLS-10 were estimated in relation to caregiver characteristics to facilitate interpretation of the short form scores.

Development of a short form of the Singapore Caregiver Quality of Life Scale - Dementia: SCQOLS-D-15.

PURPOSE: The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid and reliable measurement scale. This study aimed to develop and evaluate a short form of the SCQOLS-D. METHODS: Data were collected from 102 family caregivers of person with dementia in Singapore. Candidate items were shortlisted by factor analysis, correlation and best subset regression. Shortlisted items with the best measurement properties including correlations with the long form and other established measures, internal consistency and test-retest reliability were identified. Their properties were compared with the corresponding domain scores in the long form of SCQOLS-D and a short form of the SCQOLS. A total score based on the average of the domain scores was also evaluated. RESULTS: A total of fifteen items, two to four items per domain, were selected. The total and domain scores generated from these items strongly correlated with the corresponding score of the long form (correlation coefficients: 0.83-0.97). The short and long forms had comparable correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. The short form showed good internal consistency (Cronbach's alpha: 0.84-0.92) and test-retest reliability (intra-class correlation coefficient: 0.72-0.93). These 15 items form the SCQOLS-D-15, an abbreviated version of the SCQOLS-D. CONCLUSION: The SCQOLS-D-15 showed acceptable measurement properties. This serves as an alternative to the SCQOLS-D to provide rapid assessment of the overall and domain-specific quality of life of caregivers of persons with dementia.

Assessing the Content Validity of the EQ-5D Questionnaire Among Asians in Singapore: A Qualitative Study.

INTRODUCTION: Although the EQ-5D questionnaire is widely used to measure health status internationally, there is little evidence of its content validity in Asian populations. This qualitative study aimed to explore the content validity of the EQ-5D in Singapore. MATERIALS AND METHODS: Sixty Singaporeans (Chinese: 20; Malay: 20; Indian: 20) completed semi-structured interviews in which they were asked about health concepts which were important to them and the relevance and comprehensiveness of the EQ-5D descriptive system (DS). Thematic analysis employing open, focused and axial coding was used to identify the themes and subthemes from the interviews. RESULTS: A total of 70 health concepts were identified which fall into the broad categories of 'physical health', 'mental well-being', 'social relationships', 'medical conditions and treatment', and 'health promotion knowledge and behaviours'. The 5 dimensions in the EQ-5D DS were among the health concepts nominated by participants. Some participants suggested that content validity could be improved by adding social relationships, medical conditions and treatment, and health promotion knowledge and behaviours to the EQ-5D DS. CONCLUSIONS: This study confirmed that EQ-5D dimensions are important and relevant aspects of health to Asians in Singapore, although some dimensions that could be important to Singaporeans are absent.

Development and evaluation of the Singapore Caregiver Quality of Life Scale - Dementia.

PURPOSE: To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where English is the lingua franca. METHODS: Items from the Singapore Caregiver Quality of Life Scale (SCQOLS), which was originally developed in the context of advanced cancers, were adopted as candidate items. Furthermore, a multi-disciplinary panel reviewed dementia-specific caregiver quality of life scales to identified items not covered in SCQOLS for inclusion as candidate items. A pilot study of 31 family caregivers of PWD was conducted to solicit inputs on candidate items; 102 family caregivers of PWD were surveyed for evaluation of the scale's measurement properties. RESULTS: Factor analysis confirmed a 5-domain structure of the 63 candidate items. The Root Mean Square Error of Approximation was 0.056 and Comparative Fit Index was 0.928. Convergent validity of the total and domain scores was demonstrated in terms of correlation with the Brief Assessment Scale for Caregivers and its sub-scales. The scores also showed an expected pattern of correlation with hours spent on caregiving per week. Known-group validity was demonstrated by differences in mean scores between functional staging groups. Cronbach's alpha of the total and domain scores ranged from 0.89 to 0.95. Test-retest reliability (intraclass correlation coefficient) ranged from 0.77 to 0.92. CONCLUSIONS: The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D) is a quality of life measurement scale for family caregivers of persons with dementia that is valid and reliable.

Reference values for and interpretation of the Singapore Caregiver Quality of Life Scale: a quantile regression approach.

PURPOSE: The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the scale is not at the interval-ratio level of measurement. To facilitate interpretation, we established the percentiles of the scale's total and domain scores among family caregivers of patients with advanced cancers and demonstrate the effect size in terms of differences in relation to caregiver and patient characteristics. METHODS: Data were drawn from a cross-sectional survey of family caregivers of patients with stage III or IV solid cancers in Singapore. Quantile regression was used to estimate the percentiles in relation to caregiver and patient characteristics. RESULTS: Participants in adjacent categories of patient's performance status and caregiver's having other family members to share caregiving duties differed by 3 to 5 points in median quality of life total score and most domain scores (each Bonferroni-adjusted P, P[B], < 0.05). Ethnicity was associated with the Physical Well-being and Experience & Meaning domain scores (each P[B] < 0.05), with variable direction and magnitude. Education was associated with Mental Well-being and Financial Well-being (each P[B] < 0.05). Equations and examples for calculation of the percentiles are provided. CONCLUSION: Percentiles and effect size estimates are provided to facilitate interpretation of the SCQOLS.