Abstract
Volunteers are a popular unpaid support role in end of life care yet how accompaniment influences the dying is underdeveloped. This study examined how companionship works, for whom, in what circumstances and why. Initial realist ideas were developed through participant observation (14 months), document analysis, and realist interviews with companionship trainers (n=6). Theory testing involved volunteer interviews (n=7), accounts from the dying, proxy accounts for the dying, and written reflections from companionship training. Companionship helps people live well until they die, prepare for death, and experience a good death. Four areas of volunteering explain these outcomes namely a loving friend, a holistic presence, a non-judgmental intermediary, and wrap around care. The four areas activate mechanisms related to reminiscing, preserving dignity/personhood, and easing suffering, contingent on specific contexts. The findings unpack how volunteering exerts its influence and what contextual factors facilitate outcomes, advancing the knowledge in this area.
The presence of volunteers in palliative care is popular, yet, a definition of what volunteering entails is underdeveloped (Bloomer & Walshe, 2020; Payne et al., 2022). Nonetheless, it is largely accepted that volunteers complement formal services by offering holistic support that can enhance wellbeing (Knights et al., 2020; Walshe et al., 2021). Volunteers emphasize the relational aspects of care and support the practical, social, emotional, and spiritual needs of the dying (Bloomer & Walshe, 2020; Dodd et al., 2018; Sharp, 2022). Typically, volunteers occupy a unique position traversing health professional and family. This can mean they are often better placed to provide neutrality and advocacy for the dying person (Vanderstichelen et al., 2020). The importance of addressing the holistic needs of the dying is well established but research on how volunteers support the dying is lacking (Abu-Odah et al., 2022; Sévigny et al., 2010; Vanderstichelen, 2022).
Although volunteering is diverse companionship is often seen as a core function of the role. Companionship involves “being with” rather than “doing for” people and a volunteer’s presence is central to the envisaged impact on a person’s quality of life (Dodd et al., 2018; Fakoya et al., 2021). Companionship can offer opportunities for conversation, psychosocial support, advocacy, and sense making (Bloomer & Walshe, 2020). Nonetheless, understanding what individual outcomes are influenced through companionship in palliative care is largely unknown.
The companionship literature to date has largely explored companion’s experiences through surveys or qualitative methods to categorize features of the work. Alternatively, a priori coding manuals have been used to appraise how companionship presents in interactions with the dying. Both approaches fail to unpick how actions determine outcomes or how varying circumstances produce different outcomes, which is lacking in the literature (Pino et al., 2021; Pino & Land, 2022). Conversational analysis may be a useful innovation in understanding the intricacies of companionship, but the link to explaining how the actions of companions exert their influence is only emerging.
The impact of companionship in palliative care is noted elsewhere and common outcomes include enhancing comfort, dignity, respect and wellbeing (Sévigny et al., 2010). Nonetheless, research exploring how the companions navigate their role and what contexts catalyst outcomes is largely not documented. Where authors have aspired to outline the intricacies of end of life support, results have emphasized medical needs, coordination, referral pathways, leadership approaches, and the knowledge and skills of staff (Costello, 2006; Hashem et al., 2020; Stewart-Lord et al., 2022). Some exploratory research does exist but is restricted to single outcomes or cohorts (Fakoya et al., 2021; Malcolm & Knighting, 2022). At the time of writing this manuscript a chasm remains between understanding the well documented outcomes of championship and how the presence of volunteers achieves these outcomes.
Quantifying and explaining companions contribution to care is difficult (Bloomer & Walshe, 2020) as many of the benefits escape typical measurement tools and companions do not have a routine place in the healthcare system (Dodd et al., 2018; Scott et al., 2021). Yet, companionship may mitigate the medialization of death, help ease healthcare burden, and improve quality of life (Parks & Howard, 2021). To overcome the current challenges research must build and test theory about what works, for whom, in what circumstances and why (van der Steen et al., 2022). The aim of this research was therefore to advance the understanding of what works, for whom, in what circumstances and why, in relation to end of life companionship.
