Community engagement in public health palliative care: A comparative ethnographic study of two culturally distinct compassionate communities in Canada

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.

BackgroundNew public health approaches to palliative care seek to address the social determinants of death, dying and loss as a means to improving access to end-of-life care (Abel & Kellehear...

Social isolation and loneliness are common in people with advanced illness. This leads to reduced quality of life and all-cause mortality. The aim of this review is to identify the causes of social isolation in those with serious illness and consider the role of Public Health Palliative Care (PHPC) and Compassionate Communities in reducing these insidious issues. Recent studies have expanded the evidence base around the causes of social isolation in those with serious illness. While there has been a plethora of research on the outcomes of Compassionate Communities initiative recent research has identified that more needs to be done to evidence their effectiveness and efficiency. Social isolation and loneliness in those with serious illness have a negative effect on the quality of life. However, much still needs to be done to improve this situation in an effective and efficient way that meet the needs of individuals. It would appear that PHPC, and in particular Compassionate Communities, have a key role to play in this endeavour.

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.

Background:Compassionate communities build on health promoting palliative care that aimsto address gaps in access, quality, and continuity of care in the context ofdying, death, loss, and grief. While community engagement is a coreprinciple of public health palliative care, it has received little attentionin empirical studies of compassionate communities.Objectives:The objectives of this research are to describe the process of communityengagement initiated by two compassionate communities projects, tounderstand the influence of contextual factors on community engagement overtime, and assess the contribution of community engagement on proximaloutcomes and the potential for sustaining compassionate communities.Research Approach and Design:We use a community-based participatory action-research approach to study twocompassionate communities initiatives in Montreal (Canada). We develop alongitudinal comparative ethnographic design to study how communityengagement evolves in different compassionate communities contexts.Methods and Analysis:Data collection includes focus groups, review of key documents and projectlogbooks, participant observation, semi-structured interviews with keyinformants, and questionnaires with a focus on community engagement.Grounded in the ecology of engagement theory and the Canadian compassionatecommunities evaluation framework, data analysis is structured aroundlongitudinal and comparative axes to assess the evolution of communityengagement over time and to explore the contextual factors influencing theprocess of community engagement and its impacts according to localcontext.Ethic:This research is approved by the research ethics board of the Centrehospitalier de l’Université de Montréal (approval certificate #18.353).Discussion:Understanding the process of community engagement in two compassionatecommunities will contribute to a deeper understanding of the relationshipsbetween local context, community engagement processes, and their effect oncompassionate communities outcomes.

BackgroundCommunities play an integral role in developing social networks of care to support people experiencing dying, death and loss. Built upon a public health model, the hospice strategy strives to...

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.

BackgroundCompassionate Neighbours, originated from the Public Health Palliative Care model, is a community development project aimed at developing mutually beneficial relationships that also helps build social capital and capacity within...

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.

Background:Providing universal access to palliative care is increasingly recognised as a global public health priority, especially in low- and middle-income countries. Compassionate communities could help with provision by fostering community-led responses to dying, death and grief. Despite their global growth, compassionate communities are often absent from national and international palliative care strategies, and few are represented in academic literature. This, along with their diversity and community-defined nature, can contribute to difficulties in documentation, evaluation and visibility, limiting the ability to showcase their benefits, form partnerships and evaluate practice.Objectives:This study protocol outlines the development of the first global atlas of compassionate communities, aiming to map their locations and increase understanding of their structures, activities and impacts.Design:A participatory methodology was used. This enabled global participants to complete and share the survey based on their experiences with community programmes addressing serious illness, dying and grief. A diverse steering committee guided the design, validation and piloting of the survey to ensure clarity, cultural sensitivity and accessibility. Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold. The final survey captures data on location, aims, evaluation, challenges and impact. Dissemination involves global networks, social media and snowball sampling.Discussion:This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community’s landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.

The COVID-19 pandemic posed an enormous challenge on the public health workforce, particularly the need for substantial numbers of temporary staff. Temporary staff may experience poorer working conditions compared to permanent staff. This study aimed to investigate differences in job demands and work functioning between temporary and permanent public health staff during the fourth wave of the COVID-19 pandemic in the Netherlands. This cross-sectional study included temporary (N = 194) and permanent (N = 98) public health staff from a municipal health service and an employment agency respectively. The participants completed a questionnaire with items about quantitative, cognitive, emotional demands (Copenhagen PsychoSOcial Questionnaire, COPSOQ) and work functioning (Work Role Functioning Questionnaire, WRFQ). Differences between temporary and permanent staff were investigated with linear regressions. To investigate differences between temporary staff performing testing, vaccination or client services and contact tracing, exploratory descriptive analyses were performed. Compared to permanent staff, temporary staff had better scores on quantitative (-26.51; 95% CI -30.64 to 22.38), cognitive (-24.31; 95% CI -28.86 to -19.76), emotional demands (-11.67; 95% CI -15.82 to -7.53) and work functioning (7.66; 95% CI 4.20 to 11.30). None of the task groups within temporary staff had consistently higher scores. Temporary staff had better scores on job demands and work functioning than permanent staff. The relatively better scores of temporary staff were not expected, but might be explained by a healthy worker effect and they may be less affected by poor working conditions due to short-term exposures. From a public health perspective, it is important to know how temporary staff experience working conditions when the public health workforce suddenly needs to increase. Our study encourages to not only focus on tasks within the public health system but also on working conditions. Key messages • To our knowledge this is the first study that compared the experienced working conditions of temporary and permanent public health staff during COVID-19. • Employing temporary staff appeared an adequate solution to strengthen the public health workforce during a pandemic, according to our result that temporary staff is not affected by working conditions.

BackgroundThe COVID-19 pandemic posed an enormous challenge on the public health workforce, leading to the hiring of much temporary staff. Temporary staff may experience poorer working conditions compared to permanent staff. From a public health perspective, we need to know how working conditions are experienced when there is an acute pressure on recruiting sufficient public health care staff. This study aimed to investigate differences in job demands and work functioning between temporary and permanent public health care staff, during the fourth wave of the COVID-19 pandemic in the Netherlands and compare it with available pre-pandemic data from the general working population.MethodsThis cross-sectional study included temporary (n = 193) and permanent (n = 98) public health care staff from a municipal health care service in the north of the Netherlands. The participants completed a questionnaire with items about quantitative, cognitive, emotional demands (Copenhagen PsychoSOcial Questionnaire, COPSOQ, range 1-100) and work functioning (Work Role Functioning Questionnaire, WRFQ, range 1-100). The participants’ scores were compared to the general working population and differences between temporary and permanent staff were investigated using linear regression analysis. In addition, explorative analyses were conducted with temporary staff stratified by task and permanent staff by department.ResultsPermanent staff had relatively high scores on job demands compared to the general working population, whereas temporary staff had relatively low scores. On work functioning, permanent staff had similar scores as the general working population and temporary staff had better scores. Compared to permanent staff, temporary staff had lower, i.e. better, scores on quantitative (regression coefficient (B)=-26.7; 95% Confidence Interval (CI) -30.8 to -22.5), cognitive (B=-24.4; 95% CI -29.0 to -19.9), and emotional demands (B=-11.8; 95% CI -16.0 to -7.7), and better scores on work functioning (B = 7.8; 95% CI 4.5 to 11.3).ConclusionsTemporary staff experienced lower job demands and reported better work functioning than permanent staff. The acute expansion of the public health workforce did not seem to negatively impact the job demands and work functioning of temporary public health care staff.

Background, aims and objectives: Compassionate Communities is emerging as an international strategy for implementing the public health palliative care approach to end-of-life. It is a community-centred approach which places people and their naturally occurring networks at the centre of care, death and grief, thus extending the concept of person-centred care to network-centred care. In this article describe the first steps in the development of a Compassionate Community in the South West of Western Australia (2018). The aim of this initiative was to create opportunities for conversations around death, dying and loss; identify naturally occurring community connectors and hubs within the community and to foster a Compassionate Communities model of end-of-life care for practical and social support.Methods: To facilitate a ‘positive’ conversation, a format of a Mini Death Festival was undertaken to engage the broader community and to launch the South West Compassionate Communities Network. Attendees were invited to participate in a brief on-line survey describing their experiences with the event.Results: Over 100 people attended and 43 people registered on the day to be part of the Network. Response rate for the on-line survey was 63%. Feedback was overwhelmingly positive. The qualitative analysis generated 6 themes describing the benefits that participants reported, from cherishing the feeling of being connected, to building relationships through conversations, to learning and creative engagement through to feeling in a position to take action.Conclusions: The death festival enabled the South West Compassionate Communities Network to identify and develop an extended network of people who see themselves as part of a shared community of interest and who have an understanding of each other’s skills and talents. These individuals are vital assets in furthering the Compassionate Communities work and potential resources the Network can actively partner with to co-design the way forward. This is one example of an emergent evidence-base for how Compassionate Communities can be operationalised in the Australian context.

Effective Community Engagement Approaches for Climate Change Adaptation in the Philippines

Foyle Hospice and the Western Integrated Care Partnership recognised the need to adopt a more strategic approach to palliative and end of life care to ensure sustainability of provision and ‘reach’ of care to patients and families facing this stage of life. They proposed a Compassionate Communities pilot project funded by the local commissioning group. Using a public health approach itrecognises that communities have the skills, knowledge, expertise and a role to play in end of life care. The project aims to build capacity within communities to support those living with advanced illness and frailty and their families and carers, to reduce social isolation and to enable people to remain living at home and connected to their communities. At its heart is a network of trained Compassionate Neighbours who provide weekly contact to people who have become isolated as a result of illness. Modern palliative care has been criticised with some arguing that it has led to the development of a model of care which relies heavily on medical expertise and sits within a framework more aligned with curative outcomes that are not achievable in palliative or end of life patients. The pilot programme comprised of three key aspects: 1. Awareness raising using a whole population approach. 2. A model of care which recognises that end of life care is a social as well as a medical issue and seeks to expand the model of health care to include communities as genuine partners – not simply as targets of service provision. 3. Community engagement (via Conference; Cafe conversations; Follow up/ Education events). 4. Key stakeholders are two communities in the Waterside area of Derry/Londonderry, their GP practices, associated health and social care professionals, Foyle Hospice and the Integrated Care Partnership of the Local Commissioning Group. The duration of the pilot project is August 2015 to March 2017 The highlights in terms of innovation, impact and outcomes are listed below: 48 volunteers trained 66 referrals received 54 home assessments 28 matches/ relationships 19 referrals in progress Referral pathways and trust established between Health and Social Care professionals and the Community and Voluntary Sector Local and regional health forums Meetings with local council resulting in a motion that the council would work to become a “Compassionate City” Citywide conference One Day – an art exhibition Presentations and workshop at ICP Conference and Hospice UK Conference Short film produced by local students The project will be independently evaluated in terms of the health and well-being of volunteers, people and carers and the impact on the reduction in the need for primary health care services. In terms of sustainability and transferability the aims are: To build links with interested groups to develop models and resources which allow greater involvement in the care and support of those who are approaching the end of life at home. To identify current networks of support and encourage joint working. To develop a model that can be replicated/adapted