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

Public 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. To identify and appraise the current literature related to pu...

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Published inFrontiers in public health Vol. 11; p. 1180571
Main Authors Peeler, Anna, Doran, Alexandra, Winter-Dean, Lee, Ijaz, Mueed, Brittain, Molly, Hansford, Lorraine, Wyatt, Katrina, Sallnow, Libby, Harding, Richard
Format Journal Article
LanguageEnglish
Published Switzerland Frontiers Media S.A 26.07.2023
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Abstract Public 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. To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. A 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. The 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. We 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.
AbstractList 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.
Public 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. To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. A 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. The 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. We 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.
Author Ijaz, Mueed
Doran, Alexandra
Brittain, Molly
Peeler, Anna
Winter-Dean, Lee
Hansford, Lorraine
Wyatt, Katrina
Harding, Richard
Sallnow, Libby
AuthorAffiliation 7 Marie Curie Palliative Care Research Group, University College London , London , United Kingdom
5 St Christopher's Hospice , London , United Kingdom
3 Wellcome Centre for Cultures and Environments of Health, University of Exeter , Exeter , United Kingdom
6 End-of-Life Care Research Group, Vrije Universiteit Brussel , Brussels , Belgium
1 Cicely Saunders Institute of Palliative Care, Policy, and Rehabilitation, King's College London , London , United Kingdom
4 Department of Health and Community Sciences, University of Exeter Medical School , Exeter , United Kingdom
2 GKT School of Medical Education, King's College London , London , United Kingdom
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Copyright Copyright © 2023 Peeler, Doran, Winter-Dean, Ijaz, Brittain, Hansford, Wyatt, Sallnow and Harding.
Copyright © 2023 Peeler, Doran, Winter-Dean, Ijaz, Brittain, Hansford, Wyatt, Sallnow and Harding. 2023 Peeler, Doran, Winter-Dean, Ijaz, Brittain, Hansford, Wyatt, Sallnow and Harding
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Keywords end-of-life
interventions
community engaged
palliative care
public health
Language English
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Reviewed by: Gitismita Naik, All India Institute of Medical Sciences, Kalyani (AIIMS Kalyani), India; Suzie Xu Wang, Leeds Beckett University, United Kingdom; Samira Beiranvand, Ahvaz Jundishapur University of Medical Sciences, Iran
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Snippet Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the...
BackgroundPublic health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach...
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SubjectTerms Caregivers - psychology
community engaged
end-of-life
Humans
interventions
palliative care
Palliative Care - methods
Palliative Care - psychology
Public Health
Quality of Life
Terminal Care - psychology
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Title 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
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