Social networks, social capital and end-of-life care for people with dementia: a realist review

OBJECTIVES (1) To develop an understanding of how social capital may be conceptualised within the context of endof-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia. DESIGN A realist review. Data sources MEDLINE, EMBASE, CINAHL and grey literature. ANALYSIS We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care. RESULTS We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 contextmechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes. CONCLUSION This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia. PROSPERO REGISTRATION NUMBER CRD42018084524

New public health approaches to end-of-life care

The palliative and end-of-life care movement worldwide has been a success story in many respects. Palliative care services exist in many countries throughout the world and are increasingly integrated into mainstream health services. Despite these achievements, the movement continues to face challenges from demographic trends, changing patterns of illness, and social contexts of care which suggest increasing need for services. Questions have been raised regarding the appropriateness of building further services, as compared with new perspectives on care, which see communities and professionals working in partnership. These perspectives are collectively known as the new public health perspective and this chapter details the emergence of new public health perspectives in end-of-life care

General practitioners’ perceptions of compassionate communities: a qualitative study

Abstract: Background: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A ‘public health palliative care’ approach, defined as “working with communities to improve people’s experience of death, dying and bereavement”, is gaining momentum. ‘Compassionate communities’ is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities. Methods: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached. Results: Most participants were unfamiliar with the term ‘compassionate communities’, but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: ‘maximising use of existing community services’; ‘influencing health outside of healthcare’; and ‘combatting taboo’, 2) Perceived challenges of compassionate communities, including: ‘patient safety’; ‘limited capacity of the community’; ‘limited capacity of general practice’, and ‘applicability of public health to palliative care’, and 3) The role of the GP in compassionate communities. Conclusions: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach’s practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application

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

This is the final version. Available on open access from Frontiers Media via the DOI in this recordData availability statement: The original contributions presented in the study are included in the article/Supplementary material, further inquiries can be directed to the corresponding author.BACKGROUND: 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. OBJECTIVE: To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. METHODS: 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. RESULTS: 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. CONCLUSION: 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.Wellcome TrustNational Institute for Health and Care Research (NIHR)Cicely Saunders International

INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness

YesBACKGROUND: For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). DESIGN: The INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0-2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers. DISCUSSION: The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally. TRIAL REGISTRATION: ISRCTN18400594 18(th) February 2015

Using the present to interpret the past: the role of ethnographic studies in Andean archaeology

Within Andean research it is common to use ethnographic analogies to aid the interpretation of archaeological remains, and ethnographers and archaeologists have developed shared research in technology, material culture and material practice. Although most of this research does not follow the detailed recording methods of spatial patterning envisioned in earlier formulations of ethnoarchaeology, it has had a profound effect on how archaeology in the region has been interpreted. This paper uses examples from the study of pottery production to address earlier debates about the use of ethnographic analogy, discusses the dangers of imposing an idealised or uniform vision of traditional Andean societies onto earlier periods (‘Lo Andino’) but stresses the benefits of combining ethnographic and archaeological research to explore continuities and changes in cultural practice and regional variations

Practice review: Evidence-based quality use of corticosteroids in the palliative care of patients with advanced cancer.

BACKGROUND: It would be unusual for a patient with advanced cancer not to be prescribed corticosteroids at some stage of their disease course for a variety of specific and non-specific indications. AIM: The aim of this practice review was to provide a pragmatic overview of the evidence supporting current practice and to identify areas in which further research is indicated. DESIGN: A 'state-of-the-art' review approach was used to examine the evidence supporting the use of corticosteroids for the management of cancer-related complications and in symptom control, in the context of known risks and harms to inform quality use of this medicine. We developed 'Do', 'Do not', and 'Don't know' recommendations based on current literature and identified areas for future investigation and research. DATA SOURCES: We searched MEDLINE, EMBASE and the Cochrane library from inception to 14th October 2020. Our initial search limited to reviews, reviews of reviews, randomised controlled trials (RCTs) and controlled trials was supplemented by supporting literature as appropriate. RESULTS: Evidence to support common practice in the use of corticosteroids is lacking for most indications. This is in the context of strong evidence for the potential for significant toxicity and poor quality use of medicine. CONCLUSION: Guidelines recommending the widespread use of corticosteroids should acknowledge the poor evidence base supporting much current dogma. Quality research is essential not only to define the role of corticosteroids in this context but to ensure good prescribing practice