Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes

Abstract

BackgroundPublic health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers.ObjectiveTo identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers.MethodsA scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines.ResultsThe search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy.ConclusionWe found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.

Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England

“… 19 Whilst this is clearly an important factor for improving the quality of clinical care, it may also be helpful to consider the rich potential that these complex and informal networks may provide in terms of developing community capacity to support those at end of life. Indeed, a UK study of urban and rural differences in access to palliative care services recommends that end-of-life care policies and strategies consider differences in settlement types such as rurality 20 ; the findings from both our engagement work and scoping review 16 suggest that strategies to strengthen capacity for community support should also seek to develop tailored solutions that respond to local context.…”

“…To better understand the support needs of communities in underserved rural, coastal and low-income areas at the end of life, SWPPCRP members carried out a scoping review of existing evidence reporting public health palliative care interventions that enable communities to support people who are dying and their carers. 16 We also developed a programme of community engagement to explore:…”

Lessons from a research partnership in southwest England to understand community palliative care needs in rural, coastal and low-income communities

“…However, it is important to acknowledge that sustaining the partnership at the same level of activity has not been feasible beyond the funded period due to a lack of capacity to provide the necessary administrative infrastructure. In our scoping review, 18 we found that the long-term sustainability of interventions was rarely reported. Interestingly, in 13 of 18 included studies, community members acted as agents to deliver the intervention and in 7 these were paid members of the research team.…”