Volunteer activity in specialist paediatric palliative care: a national survey
- Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London Medical School, London, UK
- Correspondence to Rachel Burbeck, Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London Medical School, Charles Bell House, 67-73 Riding House Street, London W1W 7EJ, UK;
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.
- Received 23 August 2012.
- Revision received 24 April 2013.
- Accepted 8 May 2013.
- Published Online First 31 May 2013
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions
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