The lived experience of volunteering in a palliative care biography service

Abstract

It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

To be a trained and supported volunteer in palliative care – a phenomenological study

“…Their relationship with staff members is known to differ, and can range between feeling as though they are part of the staff’s team to being undervalued [10] and controlled [1]. Likewise, encounters with a patient’s family can be experienced as challenging [11]. …”

“Time for a Promotion? No, It’s Not for Me…” How Caring for Children with Life-Limiting Conditions Affects Health Care Assistants’ Career Decisions

“…This was a stark difference in the approach to care when compared to adult hospices and made me question why these differences in the approach to care exist. Beasley et al (2015) articulate many of the concepts displayed in this conversation with Susan. They confirm that (adult) patients approaching end of life display traits such as hopelessness, helplessness and depressive moods, which contribute to making this period very difficult for all involved in their care.…”

“…This study also comments on why people can find it rewarding yet difficult to volunteer in palliative care: "their involvement contributed to their own personal development, and was personally rewarding… [yet] encounters with family members were sometimes challenging. While some were appreciative, others became overly reliant … [family] were sometimes offended, hurt, and angered" (Beasley et al 2015(Beasley et al , 1419. This echoes Susan's reason for leaving the adult hospice setting and her sense of making a positive difference, the main motivator to stay in her role, at the children's hospice, where parents were continuously appreciative of the care she provided.…”

“…Their struggle to come to terms with their change in lifestyle, in which HCAs become their main point of contact, can put an emotional strain on family members as well as carers. Beasley et al (2015) thus stress the importance and benefits of providing ongoing support for volunteers in these circumstances, as it can ease the difficulties experienced when caring for someone in their end-of-life period. This is reflected in Susan's direct comparison to the adult hospice she previously worked in.…”

Volunteering in Palliative Care in France: “A Tough Job”; Patient, Family, Caregiver, and Volunteer Perspectives

“…There is a good deal of research on the motivations of volunteers in palliative care [2,[17][18][19][20][21][22][23][24]. These works show that while volunteers are inspired in the first place by a desire to help others and therefore by altruistic and philanthropic values, they are often interested in seeking benefits for themselves as well, with these two types of motivation becoming interwoven, evolving over time and varying according to countries' cultures.…”