Background Recent reports about increasing demand for end of life care suggests volunteers could play an important part in providing community support.^1,2 The use of volunteers in the community is uncommon in the UK and there has been minimal research into how such work impacts on volunteers themselves, a gap which this research addresses.³

Aims To understand how working as a hospice volunteer in the community with people at the end of life affects volunteers’ experiences and their attitudes towards death and dying.

Methods This qualitative study used audio-recorded interviews with volunteers, recruited from independent hospices, to elicit their stories of visiting patients at the end of their lives in their own communities. The data was analysed using narrative analysis that explored common storylines, how the stories were constructed and the impact on listeners.

Results 16 volunteers were interviewed from 4 hospices, 1 in London, 3 in central and East England. 62% were women (aged 34 to 81, 19% >50 and 44% 51–64). Stories were identified of making a difference to patients’ lives, patients’ families and the volunteers themselves. This ‘difference’ was influenced by the friendship that developed between the volunteer and patient, volunteers found the patients inspiring. Death also became “less scary” (participant) and made them think differently about life. Regulation and ‘professionalism’ were strong influencing factors interwoven with the support and back up provided by the hospice.

Conclusions Providing volunteer support in people’s homes has the potential to make the experience better for the patient and family and increase volunteers’ confidence about being with the dying. How hospices support and regulate volunteers has a significant impact on the volunteer and how volunteers make sense of their experiences. To widen the perspectives this research has shown further research is needed with patients and hospice staff.

References

1. Calanzani N, Higginson IJ, Gomes B. Current and future needs for hospice care: an evidence-based report. London: Help the Hospices, 2013

2. Scott R. Volunteering: Vital to our future. London Together for Short Lives and Help the Hospices, 2014

3. Burbeck R, Candy B, Low J, Rees R. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliative Care [Internet]. 2014;13(3):[12 p.]. Available from: http://www.biomedcentral.com/1472-684X/13/3