Social capital for carers of patients with advanced organ failure: a qualitative exploration of stakeholders' perspectives.

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Prevalence of and factors associated with demoralization among family caregivers of palliative care patients in Hong Kong.

OBJECTIVES: This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers' support needs between high and low levels of demoralization groups. METHODS: Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers' support needs, and demographic information. RESULTS: The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers' needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative's illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving. SIGNIFICANCE OF RESULTS: This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

"I never told my family I was grieving for my mom": The not-disclosing-grief experiences of parentally bereaved adolescents and young adults in Chinese families.

In bereavement literature, the significance of open communication within the family is often highlighted. However, in recent years, scholars have noticed the complexity of grief communication in the family, especially challenges and obstacles to sharing grief. Our study seeks to contribute to the research by offering a deeper understanding of the grief-sharing experiences of parentally bereaved adolescents and young adults from China, a family-centered society with strong traditions of treating bereavement and grief as taboo. We used a narrative approach to analyze 82 interviews with 44 participants. We found that almost all the participants, regardless of their gender, parent's gender, cause of death, or time since loss, indicated that they never shared grief with other family members. Specifically, three themes emerged from the analysis. "Holding back tears during the funeral" reflects participants' struggle to protect the family (especially the surviving parent) through hiding their grief during the family crisis. "Pretending no grief at all after loss" shows how participants intentionally avoided any grief conversations within the family to not trigger others' grief. In addition, "Keeping grief secret as a family rule" indicates how Chinese families powerfully guided and influenced participants in avoiding the open expression of their grief. Our findings have drawn attention to the not-disclosing-grief experiences of bereaved adolescents and young adults in the Chinese context and the role of the family in it, therefore, calling for further support for bereaved young people, either within the family or through professional services.

Prevalence and factors associated with demoralization in palliative care patients: A cross-sectional study from Hong Kong.

OBJECTIVES: Although demoralization is common among palliative care patients, it has not yet been examined empirically in the Hong Kong Chinese context. This study aims to examine (1) the prevalence of demoralization among community-dwelling palliative care patients in Hong Kong; (2) the percentage of palliative care patients who are demoralized but not depressed and vice versa; and (3) the association of socio-demographic factors, particularly family support, with demoralization. METHOD: A cross-sectional study targeting community-living palliative care patients in Hong Kong was conducted. A total of 54 patients were recruited by a local hospice and interviewed for completing a questionnaire which included measures of demoralization, depression, perceived family support, and demographic information. RESULTS: The prevalence of demoralization was 64.8%. Although there was overlap between demoralization and depression (52.8% meeting the criteria of both), 7.5% of depressed patients were not demoralized, and 13.2% of demoralized patients were not depressed. Participants who were not single and had more depressive symptoms and less family support had a significantly higher demoralization level. SIGNIFICANCE OF RESULTS: This is the first study which reports the prevalence of demoralization in Hong Kong. Demoralization was found common in community-living palliative care patients receiving medical social work services in Hong Kong. This study provides evidence of the importance of differentiating the constructs between demoralization and depression. It also provides an implication that those who are married, more depressed, and have the least family support could be the most vulnerable group at risk of demoralization. We recommend that early assessment of demoralization among palliative care patients be considered.

Exploring social capital for family caregivers of patients with chronic organ failure: study protocol for a concept mapping study.

INTRODUCTION: Many family caregivers experience significant burdens, especially those who take care of patients with chronic organ failure. Although the social welfare system offers some material assistance, a more sustainable approach to supporting caregivers is warranted. This study aims to explore the social capital (ie, the internal strengths of a community that facilitate different social roles) available for these family caregivers. METHODS AND ANALYSIS: A participatory design based on Trochim's concept mapping framework will be used in this study. A total of 119 participants, including patients, family caregivers, professionals and other community members, will be recruited from the community. The study will be divided into three phases. In Phase I, qualitative methods will be used to prepare and generate statements. Participants will be asked to share their views on social capital for family caregivers through interviews. In Phase II, quantitative methods will be used to arrange these statements into a concept map, and participants will be asked to complete a questionnaire to prioritise the statements. Statistical methods will be used to create a map based on the responses. In Phase III, the concept map will be used to formulate action plans. The findings will be presented to the public to produce recommendations for social policy. ETHICS AND DISSEMINATION: This study was approved by The Chinese University of Hong Kong Survey and Behavioural Research Ethics Committee (Reference No.: SBRE-20-714). Informed consent will be obtained from all participants. This study will reveal which forms of social capital can be mobilised to support family caregivers of patients with chronic organ failure. Recommendations on policies to improve the caregiving experience, strengthen social capital and enhance social care will be produced. Findings will be disseminated through academic conferences and journals, as well as local media to create a greater social impact. TRIAL REGISTRATION NUMBER: ChiCTR2100044171.

Impact of COVID-19 on Mental Health of Palliative Care Professionals and Services: A Mixed-Methods Survey Study.

INTRODUCTION: This study aimed to examine the mental health of palliative care professionals in Hong Kong during the COVID-19 pandemic, the relationship of mental health with socio-demographic factors, and the impact of the pandemic on palliative care services. METHODS: A total of 142 palliative care professionals in Hong Kong participated in an online survey. The questionnaire includes measurements on depression, anxiety, perceived stress, post-traumatic stress, professional quality of life, items that measure the effect of COVID-19 on palliative care services, and one open-ended question for describing how the services were affected. Descriptive and multivariate regression analyses were conducted. Quantitative and qualitative data about the impact of COVID-19 on palliative care services were analyzed and triangulated using a mixed-methods approach. RESULTS: Up to 82%, 43%, and 42% of the participants felt moderately to highly stressed, anxious, and depressed, respectively, during the pandemic. Younger participants tended to have poorer mental health and professional quality of life. Around 82% felt stressed when communicating with patients and family members under the no-visiting policy during the pandemic. More than three-quarters of participants showed lack of confidence in the anti-epidemic policy of the government. Qualitative findings identified 3 themes affecting the provision of palliative care: 1. the tightening of restrictions on visitors; 2. the limited provision of services; and 3. staff deployment. CONCLUSIONS: Appropriate responses are required to give extra support to palliative care professionals during the pandemic and facilitate their coping with the impact of COVID-19 on the provision of palliative care.

Professional quality of life, depression, and meaning in life among helping professionals: The moderating role of self-competence in death work.

We examined the moderating role of self-competence in death work, and the relationships of professional quality of life with personal well-being and self-competence in death work. Two hundred helping professionals (mean age = 40.43, 85.5% female) completed a questionnaire. Better professional quality of life (i.e., a higher level of compassion satisfaction and lower levels of burnout and secondary traumatic stress) was associated with better personal well-being and self-competence in death work. Self-competence in death work moderated the negative impact of a lower level of compassion satisfaction on depression. Implications on self-care of helping professionals doing death work are discussed.

Widowhood and depression among Chinese older adults: examining coping styles and perceptions of aging as mediators and moderators.

Objectives: Based on the stress-coping framework, this study examined the role of coping styles and perceptions of aging in the relationship between widowhood and depression through two alternative pathways-mediation and moderation-with a national probability sample of older adults in China.Method: The data came from the baseline wave of the China Longitudinal Aging Social Survey of 2014. Our final sample featured 8,404 older adults.Results: The results of structural equation modeling showed a good fit for the total sample (NFI = .909, IFI = .916, GFI = .963, RMSEA = .038) and indicated the significant direct impact of widowhood on depression among Chinese older adults. Moreover, the findings of mediating effects found compared with a married group, widowed older adults used less problem-focused coping and had more negative perceptions of aging, which in turn, predicted higher depression; they were also more likely to use emotion-focused coping, which in turn, predicted lower depression. The results of moderation analysis demonstrated that a higher level of negative perceptions of aging significantly worsened the adverse effects of widowhood on depression.Conclusion: Overall, our findings highlight the importance of a cognitive approach to targeting programs for widowed older adults in China, with a focus on strengthening their abilities to alter maladaptive copings styles and reauthor their life narratives.

The Influence of Intrapersonal, Interpersonal, and Community Protective Factors on Hong Kong Adolescents' Stress Arising from Political Life Events and Their Mental Health.

Precarious political circumstances can take a mental toll on young people. Adopting a socio-ecological perspective, this study investigated the influence of stress arising from political life events, intrapersonal factors (i.e., meaning in life, resilience), interpersonal factors (i.e., social support, associational social capital), and community factors (i.e., perceived empowerment in the community, perceived opportunities for civic engagement) on the mental health of youth in Hong Kong. Furthermore, it examined the moderating effects of these factors on the relationship between stress arising from political life events and mental health. A cross-sectional quantitative survey with a stratified purposive sampling data collection method was conducted. A total of 1330 secondary school students were recruited for this study. Multiple regression analysis was performed to examine both direct and moderation effects. The results indicate that high stress arising from political life events, low meaningfulness in life, low resilience, low social support, low youth empowerment in the community, and high civic engagement in the community were related to high mental distress. None of the presumed moderators moderated the relationship between stress due to political life events and mental distress. Assessing and addressing stress due to political life events would be potentially important in mental health programs for Hong Kong adolescents in precarious political situations.

Conducting an advance care planning group among older adults living in residential care homes: An initiative of social workers in Hong Kong.

This study aimed to examine the effects of an advance care planning (ACP) group which was developed by social workers in Hong Kong for older adults. A quasi-experimental study was conducted. Participants were recruited from 14 residential care homes. The ACP intervention group included 59 participants for analyses, and the control group 58. Three major outcomes were measured at two time points: (a) Quality-of-life concerns, (b) End-of-life preference and (c) Advance directive (AD)-related outcomes (awareness of AD, AD completion, willingness to complete AD and communication with family members about AD). Findings indicate that the ACP group enhanced participants' awareness of AD compared with the control group. Participants were also more willing to complete AD, and more participants communicated with family members about AD after participating in the ACP group. No significant difference was found in other outcomes. This study demonstrates the efforts of social workers in promoting ACP in Hong Kong and the effectiveness of an ACP group for enhancing older adults' awareness of AD. Findings support the role of social workers in promoting ACP for deprived groups, like frail older adults. The ACP group could be considered a first step in enhancing older adults' awareness of and willingness to discuss end-of-life issues. Further follow-up is required to develop individualised ACP for older adults.

Validation of the Quality of Dying and Death Questionnaire among the Chinese populations.

OBJECTIVE: This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale. METHODS: The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity. RESULTS: A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score. SIGNIFICANCE OF RESULTS: The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.

Moderating effects of meaning in life on the relationship between depression and self-competence in death work among helping professionals.

This study aims to examine the relationships of self-competence in death work (SC-DW) with meaning in life (MIL) and depression, particularly the moderating effects of MIL on the relationship between depression and SC-DW. A total of 151 helping professionals completed a questionnaire. SC-DW showed negative and positive significant associations with depression and MIL, respectively. MIL was the moderator between depression and SC-DW. At the same depression level, helping professionals who experienced a higher level of MIL indicated a higher level of SC-DW, and particularly a higher level of emotional competence in death work. Implications on supporting helping professionals are discussed.

Future provision of home end-of-life care: Family carers' willingness for caregiving and needs for support.

OBJECTIVE: This study aimed to examine family carers' willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. METHOD: Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers' Support Need Assessment Tool. RESULTS: Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in "dealing with your feelings and worries" and "looking after your own health." SIGNIFICANCE OF RESULTS: Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals' additional support.

Hospice care self-efficacy among clinical medical staff working in the coronavirus disease 2019 (COVID-19) isolation wards of designated hospitals: a cross-sectional study.

BACKGROUND: The COVID-19 pandemic has caused more than 462,417 deaths worldwide. A large number of patients with severe COVID-19 face death in hospital. Hospice care is truly a philosophy of care that delivers patient-centred care to the terminally ill and their families. Hospice care could provide many benefits for patients, families, and for hospice caregivers. The aim of this study is to investigate hospice care self-efficacy and identify its predictors among Chinese clinical medical staff in COVID-19 isolation wards of designated hospitals. METHODS: A cross-sectional design was used. The Hospice Care Self-Efficacy, Self-Competence in Death Work Scale, Positive Aspects of Caregiving, and Simplified Coping Style Questionnaires were administered between February and April 2020. A total of 281 eligible medical staff responded to the questionnaires, with a response rate of ≥78.9%. RESULTS: The mean score of hospice care self-efficacy was 47.04 (SD = 7.72). Self-efficacy was predicted by self-competence in death work (B = 0.433, P < 0.001), positive aspects of caregiving (B = 0.149, P = 0.027), positive coping (B = 0.219, P < 0.001), giving hospice care to dying or dead patients before fighting against COVID-19 (B = -1.487, P = 0.023), occupational exposure while fighting against COVID-19 (B = -5.244, P = 0.004), holding respect for life and professional sentiment as motivation in fighting against COVID-19 (B = 2.372, P = 0.031), and grade of hospital employment (B = -1.426, P = 0.024). The variables co-explained 58.7% variation of hospice care self-efficacy. CONCLUSION: Clinical nurses and physicians fighting COVID-19 reported a moderate level of hospice care self-efficacy during this pandemic. Exploring the traditional Chinese philosophy of life to learn from its strengths and make up for its weaknesses and applying it to hospice care may provide a new framework for facing death and dying during the COVID-19 pandemic. Continuous hospice care education to improve self-competence in death work, taking effective measures to mobilize positive psychological resources, and providing safer practice environments to avoid occupational exposure are also essential for the improvement of the hospice care self-efficacy of clinical nurses and physicians. These measures help caregivers deal effectively with death and dying while fighting against the COVID-19 pandemic.

Communication with family concerning body donation in Hong Kong: what do we know?

This study aimed to examine three major issues: (a) The extent to which registered donors have communicated with family about body donation; (b) The differences in demographics, life and death attitudes, and quality of relationship with family members between those who communicated their body donation decision and those who did not; (c) The factors associated with the act of communicating with family about body donation. A survey was conducted of people who registered in a body donation programme in Hong Kong. A total of 1,070 registered donors completed an online questionnaire between August and September 2016. The majority of participants (80.1%) reported that they communicated with family members about body donation. About one-third only informed family members of their decisions after registration, and around 15.6% did not communicate with family members. Those who communicated with family were significantly older and married; they also indicated more positive life and death attitudes and a better quality of relationship with family members. Three factors were found to have significant associations with the act of communicating with family members about the decision to donate the body: (a) Age, (b) Quality of life, (c) Quality of relationship with family members. Communication with family members about body donation is still inadequate. Future body donation programmes may focus more on the way body donation decisions can be better communicated with family members. Special attention can be given to younger registered donors who find it difficult to communicate with the older generation, those who indicate more negative life and death attitudes, and who experienced a poorer quality of relationship with family members.

Understanding family involvement in body donation in Hong Kong: A qualitative study of registered donors and bereaved family members.

Encouraging the public to donate their bodies after death is crucial for anatomy teaching in medical education. In Hong Kong, success may be affected if family members override the registered donors' wish after death, and thus the role of family in body donation is worth more attention. This study aims to examine how family is involved in the process of body donation. A qualitative study was conducted in Hong Kong. Registered donors and bereaved family members were recruited from a body donation scheme organised by a medical school. In-depth interviews were done and thematic analysis was conducted. Five themes were found: (a) decision-making: individual versus family; (b) family conflicts: avoidance versus confrontation; (c) trust in family members: discuss versus do not discuss; (d) family members' struggles in implementation; (e) informed end-of-life planning. Findings revealed that donors may not necessarily discuss their decisions about body donation with family members directly. Instead, it was found that family was involved in the body donation process in different ways and to different extents. For example, donors considered family members' views about body donation, but they chose not to involve them in the discussions if they expected objections, in order to avoid conflicts. Bereaved family members considered understanding family members' body donation decisions prior to death important, and they shared the implications of body donation for funeral arrangements and the grieving process. Findings help to understand the role of the family in body donation, especially in the Hong Kong Chinese context, and may give insights into how the body donation scheme could be enhanced to facilitate better communication between registered donors and family members as well as to support bereaved family members in implementing the decision to donate.

Perceived challenges in pediatric palliative care among doctors and nurses in Hong Kong.

This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total of 680 pediatric doctors and nurses participated in the survey. They tended to perceive the provision of PPC as difficult and considered "advanced skills" (those dealing with death-related issues) challenging. Findings indicate that nurses, professionals who are less experienced, do not have children, and have not received palliative care training perceived a higher level of challenges in providing PPC. Implications for training and support are discussed.

Assessing Grief of Family Caregivers of People with Dementia: Validation of the Chinese Version of the Marwit-Meuser Caregiver Grief Inventory.

Grief in dementia caregiving is underexplored in research studies in the Chinese context, yet social workers often work with caregivers of people with dementia (PWD) and who experience grief. Having a valid assessment tool can help social workers better identify the grief of caregivers and facilitate caregivers' articulation of grief. This article describes a study aimed to validate the Marwit-Meuser Caregiver Grief Inventory-Short Form (C-MM-CGI-SF) among Hong Kong Chinese caregivers of PWD. One hundred and twenty caregivers participated in this study. They were recruited from day care centers and a memory clinic. The short version of MM-CGI was translated into Chinese, and participants were asked to complete a questionnaire that included this scale and other scales validating it. Reliability and validity were examined. C-MM-CGI-SF was found to be a reliable and valid measure in the Hong Kong context. Its construct validity was demonstrated by the positive correlations with caregiving strain and depression, and negative correlations with presence of meaning and life satisfaction. The discriminant validity was supported by showing that spousal caregivers' grief level was significantly higher than that of nonspousal caregivers. Authors recommend social workers using the C-MM-CGI-SF to assess the grief of Chinese caregivers caring for people suffering from dementia.

Effectiveness of an experiential workshop for enhancing helping professionals' self-competence in death work in Hong Kong: a randomised controlled trial.

Helping professionals require self-competence in coping with the existential and emotional challenges of death work. Previous training often focused on knowledge and skills rather than on this competence. This study aimed to examine the effectiveness of a 3-day workshop in Hong Kong to enhance helping professionals' self-competence in death work. A randomised controlled trial was conducted to examine the effects of the training between January and May 2014. Targeted participants were helping professionals who had been doing death work for at least 6 months. The 112 participants were openly recruited from hospitals and NGOs and were assigned to an intervention group or a waitlist control group. Data were collected at pre-intervention and post-intervention. Primary outcome was self-competence in death work. All participants were grouped for analysing the changes in outcomes at pre-intervention, post-intervention and 3-month follow-up. Participants in the intervention group experienced a significant increase in the total score of the Self-competence in Death Work Scale (SC-DWS) and in scores of the Existential and Emotional subscales of SC-DWS. The positive effects of training on self-competence in death work were maintained at the 3-month follow-up. This study provides evidence of the effectiveness of training in enhancing helping professionals' self-competence in death work. Further research is required to examine the long-term effects of training.

Impact of Death Work on Self: Existential and Emotional Challenges and Coping of Palliative Care Professionals.

Palliative care professionals, such as social workers, often work with death and bereavement. They need to cope with the challenges on "self" in working with death, such as coping with their own emotions and existential queries. In this study, the authors explore the impact of death work on the self of palliative care professionals and how they perceive and cope with the challenges of self in death work by conducting a qualitative study. Participants were recruited from the palliative care units of hospitals in Hong Kong. In-depth interviews were conducted with 22 palliative care professionals: five physicians, 11 nurses, and six social workers. Interviews were transcribed to text for analysis. Emotional challenges (for example, aroused emotional distress from work) and existential challenges (for example, shattered basic assumptions on life and death) were identified as key themes. Similarly, emotional coping (for example, accepting and managing personal emotions) and existential coping (for example, rebuilding and actualizing life-and-death assumptions) strategies were identified. This study enhances the understanding of how palliative care professionals perceive and cope with the challenges of death work on the self. Findings may provide insights into how training can be conducted to enhance professionals' self-competence in facing these challenges.