The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

Abstract

Background: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers ( n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it’s where I’m meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients’ fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers.

‘You can’t feel what we feel’: Multifaceted dyspnoea invisibility in advanced chronic obstructive pulmonary disease examined through interpretative phenomenological analysis

“…Interpretative phenomenological analysis typically requires small but homogeneous samples. 22 In line with similar studies in the field of palliative care, 23,24 we therefore aimed at including 10–15 purposely selected participants. As the study did not intend to generate theory, data saturation was not considered a priori for sample size determination.…”

Assessment of the participation of women volunteers in the palliative care system in Kazakhstan

“…As major expenses, volunteers support hospitals by providing them with expensive machines for the provision of medical examinations. Based on recent research, experience in developed countries with volunteers' participation in palliative care is different and limited to essential assistance (Cohen & Numa, 2011;Jack et al, 2012;Park, 2013;Foster et al, 2018;Coleman et al, 2022).…”

“…They also provide another type of help depending on their skills (Cohen & Numa, 2011;Jack et al, 2012;Park, 2013;Foster et al, 2018). There is a list of essential functions like providing psychological support, teaching, and social assistance (Coleman et al, 2022).…”

Palliative care volunteering: Pressing challenges in research

“…Literature has hitherto mainly focussed on the positive outcomes, but more research is needed into the adverse outcomes of exposure and grief on volunteers. The contribution of Coleman et al 10 in the current issue takes important steps to expand our understanding of volunteer care burden and mental wellbeing.…”