Journal of Social Work in End-of-Life & Palliative Care最新文献

Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.

The need for psychosocial care among patients with serious illnesses and available social work services continues to be great, especially in low- and middle-income countries. To evaluate the specific needs of Vietnamese cancer patients' quality of life (QOL), prevalence and severity of symptoms including depression and anxiety, and caregiver burden were assessed. Data on QOL, mood, caregiver burden, and other parameters were collected through face-to-face and phone- interviews. The QOL assessed by European Quality of Life scale version 5D (EQ5D) was poor but consistent with other studies of cancer patients. Assessed by the Hospital Anxiety and depression Scale (HADS), borderline or severe anxiety and depression were prevalent. Caregiver burden was high for one third of study participants. These results confirm the need among cancer patients for psycho-social support services that currently are rarely available in Vietnam. In light of this need, a comprehensive palliative care (CPC) service, including social work, was created to improve the quality of life (QOL) of Vietnamese cancer patients.

Volunteers are foundational in hospice programs. The purpose of this research was to address social, ethnic and demographic changes in Southwestern Ontario and understand how this may affect volunteer recruitment, and representation. Interviews and focus groups were conducted with hospice volunteers, key informants from leaders in ethnocultural communities, and hospice staff. Qualitative data from the interviews was analyzed using thematic analysis in five phases. Findings suggest ethnocultural interpretations of hospice can be very different than Westernized, Eurocentric ideas around end-of-life care. Systemic and structural barriers, information sharing, volunteer motivation and representation were found to influence and impact ethnocultural volunteer recruitment in hospice palliative care. Using a critical analysis allows us to identify the "imposition" of a Euro-ethnocentric hospice palliative care model that prevents recruitment of and impedes access of ethnocultural groups to hospice palliative care. To build bridges across predominantly White/Western models of care to ethnocultural racialized communities requires constant communication, relationship building, and determination in mutuality of learning on behalf of the dominant model. This research has implications for different regions of Canada providing hospice palliative care and hoping to increase ethnocultural accessibility and volunteer recruitment for hospice palliative care.

This qualitative study was designed to describe the continuity of end-of-life care and identify barriers to continuity in urban Bangkok. Continuity of care is considered an essential part of palliative care to promote the quality of life of patients at the end of life. The majority of studies have been conducted exploring continuity of care in rural communities. However, few studies have focused on urban areas, particularly in big cities. Twelve healthcare providers were the participants, including nurses in inpatient units, and in the Health Community and Continuity of Care Unit, a palliative care physician, and social workers. The data collection consisted of individual interviews, field notes, and observations. Content analysis was used to analyze data and identify barriers. The continuity of end-of-life care in a selected setting was fragmented. Three main barriers to the continuity of end-of-life care consisted of misunderstandings about patients who required palliative care, staff workloads, and incomplete patient information. The development of a comprehensive patient information sheet for communication among a multidisciplinary team could promote continuity of end-of-life care from hospital to home. An interprofessional training course on continuity of end-of-life care is also recommended. Finally, the staff workload should be monitored and managed.

Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.