Sally Paul

Understanding community engagement in end-of-life care: developing conceptual clarity

Over the past decade, public health approaches to end-of-life care have received increased literature, policy and practice focus. These developments recognise the significance of community engagement activities and their contribution to end-of-life care. In the United Kingdom, community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it and the outcomes for the work. Conceptual clarity is an essential next step in the development of this emergent field. The aim of this paper is to present a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. A spectrum of community engagement in end of life care is presented, derived from models in the general community engagement literature. Types of engagement extend on a continuum from informing through consulting, co-producing, collaborating to empowerment, with the later levels capable of achieving more penetrating health and social change. The factors that affect the type and nature of engagement are represented in boxes at either end, demonstrating that it is not the influence of a single factor, but the overall balance of factors that determines the quality and outcomes of the engagement work. This spectrum is designed to aid professional services and the communities they serve to embark on community engagement projects with an open awareness of the requirements and key components underpinning their success and a shared understanding and language.

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.

Integrating palliative care into the community: the role of hospices and schools

Objectives Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences. Methods Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff. Results Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested. Conclusions This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.

Working with Communities to Develop Resilience in End of Life and Bereavement Care: Hospices, Schools and Health Promoting Palliative Care

This paper discusses research undertaken to explore and develop practice between a hospice and two primary schools. Action research was used to increase understanding about current practice in, and with, schools and to explore, implement and evaluate models of practice. Seven practice innovations were identified that are in various stages of being piloted. These innovations can be understood as health promoting palliative care activities, due to the process through which they were designed and their focus on developing the capacity of communities to respond to death, dying and bereavement. They demonstrate the diverse role that hospices, can play in developing how communities experience death, dying and bereavement and propose that a broader lens is employed to understand and facilitate end of life and bereavement services.

WA50 We can’t do it alone: hospices and schools working together to educate and support children around death, dying and bereavement

Background Educating and supporting children around death, dying and bereavement, in schools, frequently relies on the individual interest and expertise of staff (Rowling 2003). Moves to develop such work of ten results in one off projects led by external agencies. Support and education is therefore ad hoc and unequitable. A research study was undertaken between a hospice and school to develop practice in this area from a health promotion perspective. This presentation discusses the design and implementation of two practice innovations arising from this process. Aim The innovations aimed to introduce and educate children on issues related to loss and change, whilst simultaneously ensure that school staff have the skills and confidence to support individual experiences within the school setting. This was from a harm education and early intervention standpoint. Method Collaborative inquiry, within an action research methodology, was used to advance the innovations. This involved school and hospice staff working together to design and facilitate the activities. Results A programme of activities for children aged 5 to 11 (the resilience project) was designed and integrated throughout the curriculum. This is currently being piloted. A bereavement training programme was designed and facilitated to all school staff. Evaluations reported an increase in confidence around supporting bereavement issues. Conclusion The process highlighted that combing the skills and expertise of hospice and school staff was essential in developing sustainable activities, appropriate to the setting. The role of the hospice in engaging with communities to collaboratively develop education and support around death, dying and bereavement was emphasised. Reference Rowling, L. Grief in school communities: effective support strategies. Buckingham and Philadelphia: Open University Press, 2003.