Palliative Care and Social Practice最新文献

Background: Older adults with frailty are at risk of rapid health decline and poor outcomes, including end of life. While advance care planning (ACP) can support person-centred care, how to assess and support older adults' ACP readiness remains unclear. Health and social care practitioners, and family caregivers, are often main providers of care, but their role in ACP is poorly understood.

Objectives: To understand the readiness of older adults with frailty to engage in ACP from the perspectives of older adults, family caregivers, and health and social care practitioners.

Design: An exploratory qualitative interview study informed by the COM-B system (individual-level behaviour change) and the Ecological Systems Theory (system-level influences).

Methods: Semi-structured qualitative interviews with older adults (mild to moderate frailty), unpaid family caregivers, and health and social care practitioners in Japan. The topic guide was informed by the theoretical frameworks, exploring individual- and system-level factors influencing readiness. Reflexive thematic analysis was conducted to generate themes within and across the participant data sets.

Results: Twenty-nine interviews were conducted with 32 participants: older adults (n = 10), caregivers (n = 6), and health (n = 6) and social care practitioners (n = 10). Three themes were generated: (1) 'Leave decision-making to family' and Bridging family dynamics - older adults delegate decisions, practitioners navigate complex family relationships; (2) 'ACP is not part of our role': Diverging role expectations among practitioners, and hesitation to engage in ACP - differing perceived practitioners responsibilities limit willingness to initiate ACP; (3) Transitional period: Social norms around death and dying, family structures, and health and social care systems - shifts in systemic and social aspects shape ACP readiness.

Discussion: ACP readiness among this population is not solely an individual decision but is shaped by relationships, systemic, and societal factors. Enhancing ACP readiness requires a system-wide approach that incorporates family involvement and interdisciplinary collaboration and is adapted to the local context.

Trial registration: Not applicable.

Background: Homeless people using substances at the end-of-life face many challenges in accessing and receiving good care. These can relate to poor interdisciplinary working by health and social care practitioners, stigma and structural disadvantage.

Objective: Using positioning theory, we explored the challenges of existing models of practice for practitioners supporting this population.

Research design: This is a qualitative descriptive study in which data were collected via four interdisciplinary practitioner focus groups.

Data sources and methods: The four online interdisciplinary focus groups were conducted within a region of North-West England. This included 24 participants from health and social care providers with experience of working with and/or supporting people experiencing homelessness and using substances.

Results: The findings indicated three primary discourse positions related to (i) What constitutes a good death and where? (ii) The limitations of professional boundaries and (iii) Maintaining moral adequacy in the face of traumatic death. For practitioners, maintaining moral adequacy was often compromised by ineffective multi-disciplinary collaboration. Practitioners were often exposed to traumatic working experiences with limited resources to effect change.

Conclusion: The findings support work examining the structural and environmental challenges of palliative care provision for hostel-users and unsheltered homeless people in providing care at the end of life for people experiencing homelessness.

Background: People living with dementia have complex needs, which will eventually lead to increasing demand for palliative care. However, there is limited evidence on the priority setting in palliative care specifically for people with dementia and carers.

Objectives: This study aimed to identify priorities for dementia palliative care research in the West Midlands of England.

Design: A mixed methods consensus study.

Methods: Following a rapid review of recommendations on priorities for palliative or dementia care research, we identified 54 priorities across 11 domains, which were discussed with 20 key stakeholders (clinicians, researchers, local government representatives, and experts by experience) at a stakeholder consultation workshop. Then a list of 45 topics was developed and informed the development of an online cross-sectional survey. Consensus-building techniques were used where these topics were rated for importance and ranked to indicate top priorities for dementia palliative care in the region. Descriptive statistics was used to analyse the survey quantitative data and content analysis for free text responses.

Results: Forty-three stakeholders completed the online survey. The top 10 priorities include symptom assessment and management (e.g. pain, nausea, vomiting, acute, and/or chronic breathlessness); staff training and cultural competence; treatment and support for distress and delirium; care for people with advanced dementia at the end of life and their carers in all settings; the needs of young people with dementia and their carers; food and nutrition (e.g. difficulty in swallowing); supporting carers of people with dementia living at home; the needs of people who live alone; advance care planning and other approaches incorporating individual preferences; and home care and coordination of services.

Conclusion: Our results suggest the top priorities for dementia palliative care research, thus informing future practice, policy, and research.

Background: The death doula movement is expanding due to dissatisfaction with the medicalization of death and dying. Existing reviews focus on exploring and defining the death doula's role in providing care. However, the experiences of death doulas or those performing aligned activities for the dying person, families, and healthcare professionals have not been synthesized.

Objective: To explore the experiences of engaging with death doulas and those performing aligned activities from multiple perspectives (including the dying person, their families, health and social care professionals, and death doulas or those in activity-aligned roles themselves).

Design: A systematically constructed integrative review.

Data sources and methods: Medline, CINAHL, Scopus, and Lens.org (searched September 2024) for concepts related to death doula and palliative care. Inclusion criteria: discussion of death doula or aligned activities; dying persons, families, doulas, or healthcare workers' experiences with death doulas; any study type; any year; in English. Exclusion criteria: birthing, labor, or maternal doulas/midwives. Non-human death, life-limiting illnesses in people who are not in the end-of-life phase, or healthcare professionals or social workers, reviews, protocols, and abstracts. Papers were coded iteratively and synthesized into final themes. Quality appraisal was done using Mixed Method Appraisal Tool scoring.

Results: Papers (n = 33) from six countries. Careful analysis and synthesis resulted in the creation of six themes: emotions before and after the engagement, transforming fear through knowledge and literacy, objective companionship, the death doula as a mediator, the death doula "cycle," and the tension between flexibility and regulation.

Conclusion: The limited evidence from literature, including experiential perspectives outside of reports from death doulas or those in aligned-activities roles, indicates that research should continue to explore the benefits of adding these roles to end-of-life care. Positive experiences of engaging a doula or with those performing aligned activities appear related to role flexibility, which seems to facilitate other favorable experiences. However, flexibility also seems to be a cause of role confusion and boundary issues, shedding light on the need to develop regulation that protects both death doulas or those performing similar activities and those they engage with.

Open science registration: Https://osf.io/jkmsd.

Background: With a large burden of suffering and death in 2020 due to COVID-19 in long-term care (LTC) homes resulting in restrictions of visitations, there is a need for a formal virtual intervention to support families/friends (i.e., care partners) and residents around palliative care, including planning for end-of-life when outbreaks like these occur. The LTC Palliative Toolkit includes informational resources for care partners, residents, and healthcare providers about the trajectory of life-limiting chronic illnesses (i.e., frailty, dementia, heart failure, kidney disease, lung disease) and Palliative Care Conferences (PCCs).

Objective: To evaluate the impact of the LTC Palliative Toolkit on preparedness for end-of-life and satisfaction with information and to explore the experiences of care partners and residents with the virtual delivery of the components of the LTC Palliative Toolkit (i.e., informational pamphlets and PCCs).

Methods: A multiple methods design was employed. Three LTC homes, one from each province (Ontario, New Brunswick, and Saskatchewan, Canada), were selected to reflect diverse contexts (e.g., ownership, staff turnover, facility size, and location). Caring Ahead surveys focusing on actions, dementia knowledge, communication, and emotions and support needs were conducted with care partners before and after PCCs to evaluate how prepared they felt about their relative or friend's end-of-life and their satisfaction. Some care partners and residents completed telephone semi-structured interviews to explore their experiences with care received.

Results: Survey findings revealed only one statistically significant improvement after the intervention period, an improvement in the emotion and support needs domain following PCCs, with baseline and follow-up mean scores of 6.08 (SD = 1.06) and 6.35 (SD = 1.16), respectively (p = 0.016). Qualitative interviews identified that the LTC Palliative Toolkit was a valuable intervention for both care partners and residents.

Conclusion: The LTC Palliative Toolkit is suitable for use in any context and demonstrated high acceptability during the COVID-19 pandemic.

Background: Caring for children at the end of life is a reality of practice in the pediatric intensive care unit (PICU). Learning how to make sense of death at work, and the emotions it entails, is necessary for all PICU professionals.

Objective: To explore how PICU clinicians manage their emotions when encountering pediatric death at work.

Design: Exploratory qualitative study grounded in interpretive phenomenology and the theoretical lens of emotional labor. We conducted one-time semi-structured interviews. Once transcribed, we inductively coded interview transcripts and subsequently generated themes through reflexive thematic analysis.

Methods: Fifteen clinicians (n = 3 respiratory therapists; n = 3 physicians; n = 3 child life specialists; n = 2 nurses; n = 2 physiotherapists; n = 2 social workers) practicing in Canadian PICUs. The majority identified as women (n = 13). Four participants self-identified as Black, Indigenous, and/or a person of color.

Results: We generated four themes that influenced how clinicians managed emotions related to death in PICU: (1) Figuring it out on the job; (2) Reframing and rationalizing death; (3) Managing emotions as quality end-of-life care; (4) Navigating organizational constraints. Although clinicians shared many strategies and resources for managing emotions, the ability to apply these strategies was impacted by systemic constraints (e.g., pace of work, understaffing) and unequal access across professions to unit-level resources.

Conclusion: Navigating pediatric death in the workplace requires skilled emotional labor, and clinician access to appropriate support to manage its impacts, which varies by unit culture and profession. PICU leaders should facilitate unit- and individual-level supports that are inclusive of all team members.