The liminal space palliative care volunteers occupy and their roles within it: a qualitative study

Abstract

ObjectivesVolunteers have an important place in palliative care (PC), positively influencing quality of care for seriously ill people and those close to them and providing a link to the community. However, it is not well understood where volunteers fit into PC provision or how to support them adequately. We therefore chose to describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people.MethodsA qualitative study was conducted using both focus groups with volunteers, nurses, psychologists and family physicians and individual semistructured interviews with patients and family caregivers. Participants were recruited from hospital, home, day care and live-in services.Results79 people participated in the study. Two volunteer roles were identified. The first was ‘being there’ for the dying person. Volunteers represent a more approachable face of care, focused on psychological, social and existential care and building relationships. The second was the ‘liaison’ role. Volunteers occupy a liminal space between the professional and the family domain, through which they notice and communicate patient needs missed by other caregivers. Patient-volunteer matching was a facilitator for role performance; barriers were lack of communication opportunities with professional caregivers and lack of volunteer coordination.ConclusionVolunteers complement professional caregivers by (1) occupying a unique space between professionals, family and patients and fulfilling a liaison function and (2) being a unique face of care for patients. Healthcare services and policy can support volunteer role performance by ensuring frequent communication opportunities and volunteer coordination.

The involvement of volunteers in palliative care and their collaboration with healthcare professionals: A cross‐sectional volunteer survey across the Flemish healthcare system (Belgium)

“…Lower response rates from certain types of volunteers, such as those in nursing homes and community home care, imply possible issues for statistical generalisation and, hence, that results for the particular organisational types should be interpreted with caution. Results nevertheless confirm the findings from a previous organisational study of palliative care volunteering (Vanderstichelen et al, ; Vanderstichelen, Houttekier, et al, ) and are contextualised by previous qualitative studies of volunteering in these settings (Vanderstichelen, Cohen, Van Wesemael, Deliens, & Chambaere, ; Vanderstichelen et al, ), indicating the validity of our current conclusions. Strongly involved volunteers may be overrepresented in these strata.…”

“…Across health services, volunteers collaborated mainly with fellow volunteers, volunteer coordinators, nurses and family caregivers. Dedicated palliative care volunteers collaborated most often and extensively with nurses, confirming previous studies that have shown the importance of nurses to palliative care volunteering (Vanderstichelen, Cohen, et al, ; Vanderstichelen et al, ). Inpatient care service volunteers collaborated more with nurses than extramural care volunteers, however, the latter collaborated more with family caregivers than other volunteers.…”

“…However, it is noteworthy that nursing home volunteers were least involved in the organisation of palliative care, indicated a wish to be more involved, indicated potential improvements to collaboration with nurses and indicated the most barriers to collaboration with healthcare professionals. Considering that nursing homes have been shown to invest little into palliative care volunteering in terms of tasks, training, supervision and coordination (Vanderstichelen, Cohen, et al, ; Vanderstichelen et al, , ; Vanderstichelen, Houttekier, et al, ), this may signal an existing potential for nursing home volunteers to expand their role as palliative care volunteers currently not being realised. In the light of these findings and the important complementary value of volunteers to palliative care (Vanderstichelen, Cohen, et al, ; Vanderstichelen et al, ), we suggest that nursing homes should consider employing volunteers more for palliative care tasks, offer them the required autonomy for this work and invest in the necessary supervision and training and collaboration with professionals to fully integrate them into palliative care provision.…”

Virtual volunteers: the importance of restructuring medical volunteering during the COVID-19 pandemic

“…Moreover, volunteers provide vital human companionship for patients facing compassionate palliative or end-of-life care without friends or family to support them. [4][5][6][7] This companionship has implications on patient wellness including decreased feelings of loneliness, isolation, depression and anxiety. 8 Volunteers significantly attenuate the cost of hospice care, and they improve standards of care and efficiency by allowing medical professionals to focus on treating the physiological needs of the patients.…”

“…6. Steven Vanderstichelen et al (2018) , “The Liminal Space Palliative Care Volunteers Occupy and Their Roles Within It: A Qualitative Study,” BMJ Support Palliat Care . https://doi.org/10.1136/bmjspcare-2018-001632…”