Volunteer activity in specialist paediatric palliative care: a national survey

Abstract

Objective: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people.

Method: Cross-sectional survey using a web-based questionnaire.

Setting: UK specialist paediatric palliative care services.

Participants: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total).

Main outcomes: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting.

Results: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings.

Conclusions: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.

Keywords: Palliative care; Voluntary workers; adolescents; children; hospices; life-limiting conditions.