Connecting communities across the globe: Atlas protocol

Introduction General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, falling GP numbers and increasing demand. A ‘public health palliative care’ (PHPC) approach is gaining momentum, and is defined as ‘working with communities to improve people’s experience of death, dying and Bereavement’. ‘Compassionate communities’ is one example, supporting patients by linking professional health carers and community networks. Primary care is central to the approach, which has been incorporated into General Practice Daffodil Standards, however there is little evidence of GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of PHPC and ‘compassionate communities’. Methods Using snowball sampling, GPs were recruited through university teaching and research networks. Additionally, purposive sampling ensured wide representation of gender, level of experience and practice populations. Following informed consent, semi-structured, digitally audio-recorded interviews were conducted. Interviews were transcribed verbatim, and thematic analysis was undertaken. Interviews continued until data saturation was reached. Results Nine GPs were interviewed. Most were unfamiliar with ‘compassionate communities’, but recognised examples within their practice. Three themes identified perceived benefits of the model: ‘increasing awareness of community services’; ‘combatting taboo’; and ‘embracing health outside of healthcare’. Three themes identified perceived barriers: ‘limited time and funding’; ‘patient safety concerns’; and ‘integration with current care’. Some GPs perceived the PHPC approach as a distinct social issue outside of ‘proper’ palliative care and General Practice. Others envisaged a GP ‘signposter’ role, supporting a community-led system. Conclusion GPs recognised the importance of the wider community in caring for palliative care patients, but had differing views regarding the application of ‘compassionate communities’ and their position within this. Understanding more about the model’s practical implementation and exploring potential service-users’ views would help establish the feasibility of ‘compassionate communities’ in practice.

Todos Contigo (We are All With You) is a programme for social awareness, training, and implementation of care networks for citizens to support, accompany and care for those who face advanced chronic disease and end of life situations. From New Health Foundation this programme collaborates with the Public Health and Palliative Care International Charter of Compassionate Communities. It seeks to promote a new integrated palliative care model in the daily lives of individuals, to make families and health/social professionals the main promoters of compassionate communities and compassionate cities movement. This workshop aims to: (I) describe the methodology of the programme: required tools and steps for building and developing a compassionate city or community; (II) identify stakeholders and organizations to join the compassionate community as networking agents; (III) sharing experiences from the implementation of this project in various contexts while providing specific examples and lessons learned from the perspective of various roles; (IV) explain the process of becoming a part of the project and of getting the official recognition for being a compassionate city. This workshop aims to share a new methodology "Todos Contigo" (We are all with you) Programme for the development of compassionate communities and cities movement. We describe our experiences in Spain and Latin American countries. The method is based on creating community networks, carrying out social awareness and training programmes related to end of life care.

IntroductionAccess to end-of-life care is particularly challenging in resource-poor countries where palliative care is at an embryonic state. Lack of access to affordable palliative care leads to inequity at end...

The compassionate communities' movement is a public health approach to end-of-life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well-established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities. Data were gathered via semi-structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning. Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession-centric view on control within compassionate communities, as opposed to approaches that are community led. Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift away from professionally oriented modes of practice may be needed to maximise success.

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

Background People experiencing homelessness often die young and without adequate support. In the UK, they fail to access palliative care services and their end-of-life priorities remain poorly understood. They are dying on the streets and in hostels without adequate support and, while there is ample literature surrounding the barriers to appropriate end of life care, the EoL priorities of people experiencing homelessness in the United Kingdom (UK) remain poorly understood. This study aims to bridge the gap in knowledge. Aims To explore the end-of-life concerns, fears, preferences and priorities of a sample of people experiencing homelessness in the UK. Methods This is an interpretive phenomenology. Data collected through semi-structured, audio-recorded, face-to-face interviews with 21 homeless participants in the UK were analysed iteratively using thematic analysis. Findings have been interpreted through the lens of Merleau-Ponty’s philosophy. Results Eight themes are reported: spiritual concerns; practical concerns; fear of needing care; fear of being forgotten; preference for dying suddenly; preference for being somewhere comfortable where people know me; prioritising autonomy and self-determination; and prioritising authenticity. Conclusion Traditional palliative care services are possibly an unattractive resource for this population, so new approaches to care are required. Deeper understanding of the EoL concerns, fears, preferences and priorities of this marginalised population will support the development of accessible, culturally relevant, person-centred support for people experiencing homelessness with advanced ill-health in the UK. A strengths-based, trauma-informed, person-centred, collaborative ‘compassionate community’ approach to end of life care is recommended. Furthermore, the development of peer-support workers, trained in the principles of palliative care, should be actively encouraged and supported within the hostel as the hub of a compassionate palliative care community.

Compassion has been recognized as a key aspect of high-quality healthcare, particularly in palliative care. This article provides a general review of the current understanding of compassion in palliative care and summarizes emergent compassionate initiatives in palliative care at three interdependent levels: compassion for patients, compassion in healthcare professionals, and compassionate communities at the end of life. Compassion is a constructive response to suffering that enhances treatment outcomes, fosters the dignity of the recipient, and provides self-care for the giver. Patients and healthcare professionals value compassion and perceive a general lack of compassion in healthcare systems. Compassion for patients and for professionals' self-care can be trained and implemented top-down (institutional policies) and bottom-up (compassion training). 'Compassionate communities' is an important emerging movement that complements regular healthcare and social services with a community-level approach to offer compassionate care for people at the end of life. Compassion can be enhanced through diverse methodologies at the organizational, professional, and community levels. This enhancement of compassion has the potential to improve quality of palliative care treatments, enhance healthcare providers' satisfaction, and reduce healthcare costs.

Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management.

Achieving advance care planning in diverse, underserved populations

Background:Healthcare systems have become increasingly institutionalized, distancing death from everyday life and limiting community capacity to support dying and bereavement. Compassionate Communities (CCs) aim to address this gap through a public health approach to palliative care. Evidence on their development and evaluation remains limited, particularly in Southern Europe.Objectives:To describe the co-creation process of the first Italian CC and outline an evaluation framework to guide implementation and sustainability.Design:Participatory, mixed-methods protocol covering the first two phases of the InVita! project: (I) Discover and assess and (II) Focus and commit.Methods and analysis:Phase I will map local needs and resources through semi-structured interviews with interest-holders, focus groups with caregivers, and reflexive field diaries. A descriptive survey of adult residents will assess knowledge of palliative care, attitudes toward death, perceived self-efficacy, and community engagement. The survey adapts an existing instrument and incorporates death literacy dimensions, with cultural adaptation through interest-holder review. Phase II will translate findings into a shared mission and prioritized actions via participatory workshops and a community awareness event. Data will be analyzed using reflexive thematic analysis for qualitative data and descriptive statistics for survey data. Integration will follow GRAMMS guidelines.Ethics:The study was reviewed by the Comitato Etico Area Vasta Emilia-Nord, which determined that formal approval was not required due to its noninterventional nature. All participants will provide informed consent, and data will be anonymized in compliance with GDPR.Discussion:This protocol introduces a structured, participatory approach to developing Italy’s first CC. By integrating qualitative and quantitative methods and embedding public involvement, the study aims to generate actionable insights for scaling CC initiatives and advancing public health palliative care.Trial registration:Not applicable.

In early 2013, an online survey of over 200 UK palliative care services published in the British Medical Journal found that most of these services were prioritizing 'community engagement' initiatives, most commonly adopting a 'compassionate community' model. Later this same year, a report released by the National Council for Palliative Care and the charity Murray Hall Community Trust, described the increasing uptake of compassionate communities by palliative care services in England. This review examines this new policy and practice development in British end-of-life care explaining its conceptual origins and describing its policy importance to current practice. Why services are increasingly turning to community partnerships and the reasons they believe that this approach might enhance the effectiveness and reach of their clinical work are described.

The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal experiences, and challenges the notion that disease precludes one from health care attention and interest. It seeks to normalise these phenomena and reorientate care to communities by activating naturally occurring networks and mobilising community resources. A surge of interventions aligned with the ethos of CC has been observed over the last decade. This scoping review seeks to synthesise what is currently known about the design, efficacy, and impact of CC interventions. Cochrane, PubMed, Scopus, and Web of Science were systematically searched. Hand searching was performed on three key journals, reference lists and citation lists of included articles, and relevant review articles. Two levels of analysis were conducted. First, a numerical presentation of the characteristics of CC interventions. Second, a thematically orientated narrative analysis of intervention efficacy. A total of 1,882 records were screened; 62 papers were included. Most were implemented by palliative care organisations in Europe, North America, and Australia. Included studies were mapped against Clark et al.'s taxonomy of end-of-life interventions: educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18) interventions are discussed. While preliminary findings are positive, claims of efficacy are limited due to methodological paucity in the field. We argue that the field would benefit from more transparent and theoretically driven CC interventions in order to explicate the mechanism(s) for successful intervention implementation.

IFIC Ireland case study on Kerry Hospice IFIC Latin America examples of public health approaches in Costa Rica and Chile. Background: Many health and care systems are developing multi-sector strategies to create more caring and connected communities where everyone has the opportunity to develop meaningful relationships regardless of age, status, circumstances or identity. Common success factors include adopting a social model that brings together different generations and the full range of civil society partners using community development principles and mobilising the collective strengths and assets of individuals, families, friends and communities. These concepts are at the heart of a public health approach to palliative and end of life care that aims to address the marginalisation associated with dying, death and loss. Such approaches are heavily influenced by culture, geography, availability of health and care workforce and volunteers, and the maturity of community empowerment. This 90-minute workshop explores these issues in collaboration with members of IFICs Palliative Care, Compassionate Communities and Rural, Remote and Island SIGs. Audience The interactive workshop will be of interest to policy makers, researchers, advocates, patients, carers and professionals who plan, commission, fund, provide or regulate health and care services and support for people who need palliative and end of life care. SIG members from Canada, Scotland, Ireland and Latin America will describe how they are adopting public health approaches to death, dying and bereavement, co-designed with people and local communities. Participation in the session by a wide range of policy makers, practitioners, patients, advocacy organisations and caregivers will provide diverse insights into current challenges and transferable solutions. ApproachIntroduction to the workshop (5 minutes)Chair will provide an introduction to the collaborative work by SIG members on new solutions, approaches and policies that enable a public health and community led approach to integrated palliative and end of life care in different context and geographies.Provocation (30 minutes)Four snapshot presentations will outline innovative experience in Canada, Scotland and Latin America and will highlight the opportunity to learn with international colleagues through the Global Palliative Care ECHO Partnership.Group discussion (40 minutes) Facilitated breakout groups will discuss their experience of key barriers and enablers of implementing a public health approach to palliative care within their local integrated systems Participants will be invited to suggest practical actions / policy levers that will help improve outcomes at times of loss for people and communities in different context and countries Delegates will identify knowledge gaps to be addressed through future local, national and international collaborative research and education. Summary of key points and actions from the groups (0 minutes) ImplicationsThe session will conclude with agreement on take home messages and a set of actions for the participating SIGs to take forward over the next year (5 minutes).

Concerns have been raised internationally about the palliative care needs of migrants and First Nations people. This article presents insights from research investigating the end-of-life needs of Aboriginal and culturally and linguistically diverse people living in Western Sydney, Australia. This region has a large rapidly growing, and highly diverse population and on average low socioeconomic status. The research was guided by an advisory panel made up of representatives of supportive and palliative medicine, bereavement support, Aboriginal health, and multicultural health facilities. It aimed to generate findings to support the delivery of culturally sensitive services in the public health system. The multi-method design and the conduct of the research were informed by the literature on researching with marginalized groups which highlights the ethical considerations needed to avoid replicating past injustices. Qualitative data was generated from key informants and community focus groups. The analysis revealed seven themes and some suggested solutions which were relevant across several themes. The seven themes were: the Need for trusted relationships; Talking about death and dying; Knowledge of key services; Decision-making and obtaining consent from the patient; Appropriate physical spaces; Cultural practices around EOL; and Language barriers. Within each theme a variety of cultural beliefs and practices were revealed that conflicted with mainstream medical systems, indicating the need for changes in such systems. 'Compassionate Communities' was identified as a model to support the necessary changes.

Cancer and palliative care in Africa.