How compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss.

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (ß = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (ß = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

Engagement of specialized palliative care services with the general public: A population-level survey in three European countries.

BACKGROUND: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. AIM: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. DESIGN, SETTING, PARTICIPANTS: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. RESULTS: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%-90%) compared to Belgian (31%-71%) and Swedish services (19%-38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. CONCLUSION: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.

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.

The impact of a new public health approach to end-of-life care: A systematic review.

BACKGROUND: Communities play an increasingly significant role in their own health and social care, and evidence demonstrates the positive impact of this work on a range of health outcomes. Interest is building regarding the application of the principles of the new public health approach to those facing the end of life and their families and communities. AIM: To review the evidence relating to the impact of a new public health approach to end-of-life care, specifically as this applies to efforts to strengthen community action. DESIGN: A systematic review employing narrative synthesis. Both meta-ethnography and the use of descriptive statistics supported analysis. DATA SOURCES: Eight databases (AMED, ASSIA, BiblioMap, CINAHL, Cochrane Reviews, EMBASE, MEDLINE and PsycINFO) were searched from the earliest record to March 2015 using set eligibility criteria. RESULTS: Eight articles were included in the analysis. Three main themes emerged from the meta-ethnography: making a practical difference, individual learning and personal growth and developing community capacity. The quantitative findings mapped to the meta-ethnography and demonstrated that engaging communities can lead to improved outcomes for carers such as decreased fatigue or isolation, increase in size of caring networks and that wider social networks can influence factors such as place of death and involvement of palliative care services. CONCLUSION: Evidence exists for the impact of community engagement in end-of-life care. Impact assessment should be an integral part of future initiatives and policy makers should recognise that these approaches can influence complex issues such as carer support, community capacity, wellbeing and social isolation.

Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care.

BACKGROUND: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. AIM: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. DESIGN: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. RESULTS: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. CONCLUSION: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.

Discomfort With Suffering and Dying, a Cross-Sectional Survey of the General Public.

CONTEXT: Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences. OBJECTIVES: Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure. RESULTS: A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort. CONCLUSION: A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care.

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.

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.

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

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.

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.

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 end-of-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 context-mechanism-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.

WA7†Refining and sharing our methods - how to research the public health approach to palliative care?

: According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost- effective care, 3) devise public policies and actions to solve identified local and national health problems and priorities. In line with this, public health has increasingly provided a framework for descriptive and epidemiological palliative care research, related to the first two mandates. Demographic, epidemiological, and sociological changes are increasingly asking for a broader public health approach to palliative care research, one that incorporates the principles of health promotion. This workshop will be led by an international collaborative group interested in how these different mandates relate to one another in developing a public health and palliative care research agenda. The first presentation will focus on the more traditional public health and epidemiological research approach and how it has addressed some public health challenges in palliative care but has missed or ignored others. The second presentation will focus on the New Public Health approach and how this has been translated into research evaluating health promoting palliative care and related interventions, but faces the major challenge of developing an appropriate thorough methodological and evidence base. The presentations will examine the contribution of each tradition and determine how they can inform and strengthen one another. The workshop will conclude with a panel discussion to engage participants to develop a research agenda for the future.

Public health approaches to end-of-life care in the UK: an online survey of palliative care services.

AIMS AND OBJECTIVES: The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken. METHODS: An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. FINDINGS: There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.