Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom

Abstract

Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an upto-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care.

Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence

“…Characteristics of the eight included studies are detailed in Table 2. In our UK-wide survey on the role of volunteers in palliative care, survey respondents did not provide us information on any other evaluations on the impact of volunteers (Burbeck et al, 2014).…”

“…We contacted researchers in the field for unpublished studies. As part of a parallel research project, which was a national UK survey on the role of volunteers in palliative care (Burbeck et al, 2014), we asked managers of volunteers for copies of any in-house research on the impact of volunteers.…”

“…In this role volunteers form part of the care team, supporting nursing care by undertaking taskorientated activities, such as serving patients' meals and drinks. They may also provide emotional or social support, such as spending time with the patient (Burbeck et al, 2014).…”

Building Community Capacity in Bereavement Support

“…Trained volunteers are an important and cost-effective component of bereavement care service provision in many palliative care services. 15,16 However, we know little about how the volunteers are trained or supervised. 17 One study showed that although the majority of palliative care volunteers providing bereavement support had personal experience of bereavement and were provided with some generic training on the volunteer role, only a third received training in bereavement support.…”

Volunteer activity in specialist paediatric palliative care: a national survey

“…We have carried out a similar survey of adult services17 but no other similar survey of adult services has been undertaken. We found that the number of volunteers in children's services with direct contact with children, young people and their families is small (median 25 per service (IQR 11–70)) compared with those in adult services (median 85 per service IQR 40–150) (ref.…”