Volunteers in end-of-life care: designing future practice directions to support care in the community

Volunteering has received considerable attention as a valuable resource to support services and build communities based on trust, empathy and cooperation. Palliative and end-of-life care traditionally relied upon voluntary support from religious organisations, community healers and other parties with various skillsets and roles who cared for the needs of the dying and their relatives. Care has become increasingly professionalised, but palliative and end-of-life care largely remain dependent upon family and voluntary support.

Currently, voluntary support is more organised and directed to strengthen healthcare services, promote fundraising efforts, and reach out to communities. However, we know relatively little about the organisation and facilitation of volunteer-led programmes, including the purposes that they serve in community settings. Volunteers in palliative and end-of-life care adopt multiple roles and meet a range of needs. In addition, volunteer-led support programmes are diverse and respond to local and/or institutional needs.

Public Policy|Southampton has funded a policy commission event that will give stakeholders in palliative and end-of-life care the opportunity to reflect upon policy and practice directions in volunteer-led support and engagement. The event is sponsored by the Faculty of Health Sciences at Southampton University and will draw upon – although it will not be limited to - findings from an NIHR-funded study on community-based volunteer-led support for caregivers in palliative and end-of-life care. The event will provide a unique opportunity for individuals with interest and direct experience of volunteer-led programmes in palliative and end-of-life care to get together and discuss organisational and practice issues and experiences, as well as identify key future directions.

In this policy forum discussion, debate will focus upon:

1. The capacity of volunteer-led programmes to support people with end-of-life care needs, including carers in community settings.
2. The organisation and structure of community-based volunteer-led programmes in palliative and end-of-life care, their autonomy, creativity and systematisation.
3. The wider social and policy context in which community-based volunteer-led programmes in palliative and end-of-life care operate.

We will concentrate upon issues of autonomy and systematization of locally-based, varied and creative volunteer-led initiatives that support caregivers of people with end-of-life care needs, by addressing the following;

1. To consider a range of approaches to supporting caregivers for people with end-of-life care needs in the community.
2. To identify key issues in the light of existing approaches to caregiver support in the community.
3. To explore the complexity of volunteer-led support for people with end-of-life care needs.
4. To draw up key messages for policy makers, and indicate profitable directions for volunteer-led support in community end-of-life care.

Dr Aliki Karapliagou

Aliki studies Sociology and is particularly interested in social inequalities in health and end-of-life care. She advocates public health approaches to promote health and wellbeing among vulnerable populations - particularly ethnic minorities and people with end-of-life care needs. Aliki is currently researching the basic elements of community-based volunteer-led support for caregivers in end-of-life care that will help design, implement and evaluate a community-based volunteer-led intervention. The project is part of an NIHR research study, led by the Faculty of Health Sciences at Southampton Universit y.