Public Health Palliative Care Research Articles

Belonging, care, and support: findings from Ottawa’s healthy end of life project

ABSTRACT With a rapidly aging population, Canada has a growing need for public health palliative care services. End of life care, including palliative care, is holistic in nature, paying attention to the physical, psychological, social-cultural, and spiritual needs of the person who is dying and their networks of friends, family, and caregivers. Public health approaches to palliative care work to strengthen community capacities to provide care in tandem with medical and social services. This study reports on the findings of the Healthy End of Life Project (HELP Ottawa), a 4.5-year community-based research project, to demonstrate the importance of including faith communities in public health palliative care initiatives. Focusing on Christian faith communities, this article explores how faith communities can best build the capacity to offer, ask for, and accept support for members who are living with advanced illness, caregiving, or grieving.

Evaluating the new family medicine internship programmes in the Western Cape, South Africa.

In 2021, South Africa introduced a new 6-month internship in family medicine and primary care. This study aimed to assess the new rotation at district health facilities in the Western Cape. A descriptive survey of interns and supervisors, as phase-two of an exploratory sequential mixed methods study. Questionnaires were developed from a descriptive exploratory qualitative study. Data were analysed with the Statistical Package for Social Sciences. Questionnaires were completed by 72 interns (response rate 21%) and 36 supervisors (response rate 90%), across 10 training programmes. Interns felt more independent (97.2%), confident (90.3%) and resilient (91.6%). They learnt to manage undifferentiated and chronic conditions (91.6%), to refer patients (94.3%) and conduct procedures (77.8%). Most interns were not exposed to community-based services (68.0%) and continuity of care (54.1%). Supervision was mostly adequate during the day (79.1%) and afterhours (80.6%). Many interns reported no structured teaching programme (41.7% - 55.6%). Most supervision was from medical officers and registrars. Supervisors saw interns as valuable members of the clinical team (100.0%), who required extra support and administration (42.5%). The majority of interns (75.0%) and supervisors (72.7%) thought the rotation was the right length and the best preparation for community service (67.6%). The rotation met most expectations of the Health Professions Council of South Africa. Programmes need to improve exposure to community-orientated primary care, public health medicine, palliative and ongoing care. Supervision and orientation of interns needs improvement.Contribution:This is the first evaluation of the new family medicine internship programme in South Africa.

Lessons from a research partnership in southwest England to understand community palliative care needs in rural, coastal and low-income communities.

The South West Peninsula (Cornwall, Devon, Somerset) has the highest proportion of over 65s (24.2%) and is the only English rural population with greater economic deprivation than in urban areas. Coastal populations have the worst health outcomes in England. Despite innovation among communities to support those with health and care needs in later life, recruitment to palliative care research in the region is low and there has been no evaluation of public health palliative care interventions. A new South West Peninsula Palliative Care Research Partnership was funded for 15 months, bringing together four universities, the voluntary and community sector (including hospices) and local National Institute for Health and Care Research networks. The aim was to establish a sustainable multisectoral partnership that would identify community-based support needs for underserved rural and coastal populations by: • conducting a literature scoping review on interventions to enable community members to support the dying; • delivering a research capacity-building programme; • co-creating public and patient involvement capacity; • determining the resources and needs for communities to support dying well; • integrating findings to develop a framework of community-based support and identify future research questions; • establishing a sustainable research network infrastructure for the long-term design and delivery of palliative care research. We convened partners to identify research needs and co-designed activities to meet our objectives. These included a scoping review; a capacity-building programme of training, seminars and a journal club; forming a patient and public involvement group; a multistranded community engagement programme using different creative approaches; four focus groups with members of the public and one with community workers; and producing three 'storytelling' audio recordings. Findings were presented to the partnership at a regional workshop. The scoping review showed that community-engaged palliative care interventions can improve outcomes for individuals but provided little evidence about which approaches work for different communities. Five online seminars and a quarterly journal club to develop research capacity were regularly attended by 15 to 25 participants from across the partnership. While evaluating our engagement methods was beyond the partnership's scope, levels of participation suggested that creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Data showed that rural, coastal and low-income communities face challenges in accessing end-of-life care and support due to issues such as transport to and distance from services, erosion of neighbourhood networks, isolation from family and friends, 'patchiness' of palliative care services and a lack of care providers. Community organisations are well-placed to co-produce and facilitate methodologies for involving communities in palliative care research. Although activities took place in diverse areas, it was not possible within the available resources to cover the entire large geographical region, particularly the most isolated rural areas. Partnerships bringing together voluntary and community sector organisations, palliative care providers, health and social care providers, individuals with experience and academics have potential to design future research and public health interventions that better understand local context, involving and supporting communities to address their needs at end of life. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135312.

'I see the high level of interpersonal support during the pandemic as proof that the good in people prevails': the COVID-19 pandemic as a catalyst for building a caring community?

The public health approach to end-of-life care has led to initiatives to promote caring communities, involving the community in supporting vulnerable dying people and their families. Our study aimed to explore how the COVID-19 pandemic affected the relevance of a caring community, whether the concept of a caring community took on a different meaning during and because of the pandemic, and how issues of death, dying and bereavement were perceived. Qualitative online survey of people interested in the 'Caring Community Cologne' project. Participants in the survey attended the launch event for the Caring Community in Cologne. Direct invitations were sent to professionals and experts in various fields. Information about the event was also disseminated via social media and the city of Cologne's website. Data were collected from June 2020 to August 2020 and analyzed using Braun & Clarke's thematic analysis. N=63 out of 121 people participated. The median age was 60years; 65% of the participants were female. Most of them worked in the social sector (53%). Three respondents described positive changes brought about by the pandemic: Greater sense of community and solidarity, more confrontation with one's own finiteness, strengthening of relationships, mindfulness and slowing down of the pace of life. Negative effects mentioned included a deterioration in mental health and well-being, with an increase in anxiety, social isolation but also forced togetherness, which can lead to conflict, and a lack of emotional closeness due to restricted contact. Our study was conducted at the beginning of the pandemic and shows that the pandemic has raised awareness of the importance and potential benefits of community-based networks and the importance of adopting a public health palliative care approach to advocate for those most in need. The findings also highlight the role of community social capital in promoting engagement, resilience and well-being.

Programme Abstracts of the 3rd International Seminar - A Human Rights based approach to Palliative Care: Towards Solutions for Public Health Palliative Care

Programme Abstracts of the 3rd International Seminar - A Human Rights based approach to Palliative Care: Towards Solutions for Public Health Palliative Care

Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions.

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system.

Public Health Palliative Care and Public Palliative Care Education

This Special Issue, "Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)", highlights recent advances and challenges in PHPC and PPCE [...].

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

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. 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. 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. 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. This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). 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.

Emergency medical services: the next linking asset for public health approaches to palliative care?

Emergency medical services (EMS) are a unique workforce providing 24/7 emergency care across high-income countries (HICs) and low- and middle-income countries (LMICs). Although traditionally perceived as first responders to traumatic and medical emergencies, EMS scope of practice has evolved to respond to the changing needs of communities, including a growing demand for community-based palliative care. Public health provides a useful framework to conceptualise palliative and end-of-life care in community-based settings. However, countries lack public policy frameworks recognising the role EMS can play in initiating palliative approaches in the community, facilitating goals of care at end of life and transporting patients to preferred care settings. This article aims to explore the potential role of EMS in a public health palliative care approach in a critical discussion essay format by (1) discussing the utility of EMS within a public health palliative care approach, (2) identifying the current barriers preventing public health approaches to EMS palliative care provision and (3) outlining a way forward through priorities for future research, policy, education and practice. EMS facilitate equitable access, early provision, expert care and efficacious integration of community-based palliative care. However, numerous structural, cultural and practice barriers exist, appearing ubiquitous across both HICs and LMICs. A Public Health Palliative Care approach to EMS Framework highlights the opportunity for EMS to work as a linking asset to build capacity and capability to support palliative care in place; connect patients to health and community supports; integrate alternative pathways by engaging multidisciplinary teams of care; and reduce avoidable hospital admissions by facilitating home-based deaths. This article articulates a public health approach to EMS palliative and end-of-life care provision and offers a preliminary framework to illustrate the components of a potential implementation and policy strategy.

Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives

Background: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. Aim: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. Methods: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. Results: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). Conclusions: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.

Socially, Culturally and Spiritually Sensitive Public Health Palliative Care Models in the Lower-income Countries: An Integrative Literature Review.

The demand for palliative care (PC) is ever-increasing globally. The emergence of COVID-19 pandemic has further accelerated the need for PC. In the lower-income countries (LICs), where PC need is highest, PC, the most humane, appropriate and realistic approach to care for patients and families affected by life-limiting illness, is minimal or non-existent. Recognising the disparity between high, middle and LICs, the World Health Organization (WHO) has recommended public health strategies for PC within the socioeconomic, cultural and spiritual contexts of individual countries. This review aimed to: (i) identify PC models in the LICs utilising public health strategies and (ii) characterise how social, cultural and spiritual components were integrated into these models. This is an integrative literature review. Thirty-seven articles were included from a search of four electronic databases - Medline, Embase, Global Health and CINAHL. Literature, both empirical and theoretical literature, published in English from January 2000 to May 2021 that mentioned PC models/services/programmes integrating public health strategies in the LICs were included in the study. A number of LICs utilised public health strategies to deliver PC. One-third of the selected articles highlighted the importance of integrating sociocultural and spiritual components into PC. Two main themes - WHO-recommended public health framework and sociocultural and spiritual support in PC and five subthemes - (i) suitable policies; (ii) availability and accessibility of essential drugs; (iii) PC education for health professionals, policymakers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components, were derived. Despite embracing the public health approach, many LICs encountered several challenges in integrating all four strategies successfully.

7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation

7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation

Last Aid Courses as measure for public palliative care education for adults and children-a narrative review.

To provide a narrative overview of the current knowledge on Last Aid Courses (LAC) and experiences from the implementation process in different countries. Major challenges for public health palliative care include supporting all people who wish to die at home and educating the public about death, dying and palliative care. LAC commenced in 2015 in order to educate and empower citizens to participate in end-of-life care and to improve the public debate about death and dying. The International Last Aid project and the International Last Aid working group were established to provide and evaluate public palliative care education (PPCE) using LAC. A literature search in PubMed/Medline was performed and a narrative overview of the existing literature on LAC and PPCE is provided. In addition, experiences from the implementation process are presented. An International Last Aid working group was established with representatives from different countries and national organisations. This group revises the curriculum and contents of LAC in regular intervals with the latest revision in October 2020. Scientific evaluation of LAC is coordinated by the international Last Aid Research Group Europe (LARGE). Work on LAC has commenced in 18 countries. The overall results show that LAC are feasible and very well accepted in many different countries and cultures. Adults, children, and other groups, such as hospital employees and police officers, have participated in LAC. LAC for citizens is also possible in an online course format that was established and tested during the COVID-19 pandemic. Scientific work on the effects of LAC and cultural issues connected to LAC are ongoing in a number of countries. LAC are feasible and well accepted by citizens in different countries. The courses can contribute to a public debate on death, dying and palliative care and may contribute to empowering citizens in providing end-of-life care.

Logic Conflicts in Community-Based Palliative Care

Community-based palliative care services and their integration with public health systems are of considerable contemporary interest. However, the conflicts that emerge in such a complex organizational field comprising multiple stakeholders with diverse interests remain under-examined. Our analysis of community-based palliative care in Kerala identifies four ‘logic conflicts’ that indicate competing frames of reference in an organizational field. These conflicts shape decision-making and coordination and manifest as: 1) professional versus community logics, 2) centralized versus decentralized governance logics, 3) generalist versus specialist care logics, 4) charity versus rights-based logics. We also identify two mechanisms – forming coalitions and fostering plurality – by which actors manage these conflicting logics. We discuss contributions to public health palliative care conversations and implications for nurturing and sustaining care communities.

Special Issue Supplement: Conference Abstracts from the 6th Public Health Palliative Care International Conference

Special Issue Supplement: Conference Abstracts from the 6th Public Health Palliative Care International Conference

Ten years of public health palliative care conferences: a critical reflection for the next decade

Community is a background idea in palliative care, not a foreground issue. The field of palliative care defines its role in clinical terms of palliation, repair and support, not as a public educato...

Choice depends on options: A public health framework incorporating the social determinants of dying to create options at end of life

Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide ‘how’ to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this.

“We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia

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.

Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.

Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources. The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts. A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop community capacity for providing end of life care, these social norms need to change. Phase two brought public health strategies to bear on the themes identified in phase one to develop the Healthy End of Life Project (HELP), a strengths-based sustainable community development project. This provides evidence-based and research-informed resources that equip communities to work cooperatively with carers, family, friends and neighbors in support of residents wishing to receive end-of-life care in their home or a community setting. Services may initiate use of the framework, and will share their expertise on health and death matters, but communities are the experts to lead implementation in their local area. The third part of the article outlines current initiatives to implement and evaluate HELP in several Australian contexts. The substantive outcome of this enquiry is the 'Healthy End of Life Project (HELP); offering and providing, asking and accepting help'.

Scotland's public health palliative care alliance.

People's experiences of death, dying and bereavement are only partially determined by formal health and social care services. A broad-based alliance of organisations and individuals was established in Scotland in 2011 with the aim of influencing a wider range of social, cultural and other environmental factors which impact on people's experiences towards the end of life. Called Good Life, Good Death, Good Grief (GLGDGG) this alliance has grown and developed over the past 6 years, with a current diverse membership of over 1,100. A small central resource hosted by the Scottish Partnership for Palliative Care (SPPC) provides infrastructure, resources, promotion, events and advocacy for the alliance. GLGDGG's approach is primarily to engage, support and enhance the assets of communities, organisations and individuals who have the potential to improve the experience of death, dying and bereavement in Scotland. In addition to having very limited financial and staff resources the alliance has faced and responded to some other major challenges; the breadth and diversity of areas needing action; a lack of evidence to inform prioritisation and advocacy; how to operationalise theory in specific contexts; risk aversion on the part of some institutions in relation to death, dying and bereavement; how to measure change and demonstrate impact. The alliance has developed or used different frameworks for conceptualising and organising its work, but always with an emphasis on practical and adaptable approaches to action. Key successes of GLGDGG include growth in the size and diversity of the membership and the development of a portfolio of resources, activities and events. Amongst events developed is To Absent Friends, a people' festival of storytelling and remembrance which gives people across Scotland an excuse to remember, to tell stories, to celebrate and to reminisce about people who have died but who remain important to them. GLGDGG promotes the festival, encourages involvement, provides ideas and support, and organises a small number of events. However, the vast majority of the activity which takes place during the festival is conceptualised and carried out by individuals and organisations on their own initiative. GLGDGG has been successful in influencing public policies relating to death, dying and bereavement. The experience of GLGDGG suggests that: enthusiasm for action exists widely in Scottish society; local ownership is the key for local action; national infrastructure and off-the-shelf resources are valued by local actors; small resource can make a big difference to local work; national events can act as a catalyst for local action. The next phase of work is to scale up existing activities and initiatives and to base future plans on scoping work currently being undertaken.