Volunteer involvement in the organisation of palliative care: A survey study of the healthcare system in Flanders and Dutch-speaking Brussels, Belgium

Abstract

Ageing populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. We know volunteers are present in palliative care and perform many roles, ranging from administration to providing companionship. However, we do not know how involved they are in the organisation of care and how healthcare organisations appraise their involvement. To address this, we provide an extensive description of the involvement of volunteers who provide direct patient palliative care across the Flemish healthcare system in Belgium. We conducted a cross‐sectional postal survey of 342 healthcare organisations in Flanders and Brussels in 2016, including full‐population samples of palliative care units, palliative day care centres, palliative home‐care teams, medical oncology departments, sitting services, community home‐care services, and a random sample of nursing homes. Volunteer involvement was measured using Sallnow and Paul's power‐sharing model, which describes five hierarchical levels of engagement, ranging from being informed about the organisation of care to autonomy over certain aspects of care provision. Response was obtained for 254 (79%) organisations. Volunteers were often informed about and consulted regarding the organisation of care, but healthcare organisations did not wish for more autonomous forms of volunteer involvement. Three clusters of volunteer involvement were found: “strong involvement” (31.5%), “restricted involvement” (44%), and “uninvolved” (24.5%). Degree of involvement was found to be positively associated with volunteer training (p < 0.001) and performance of practical (p < 0.001) and psychosocial care tasks (p < 0.001). Dedicated palliative care services displayed a strong degree of volunteer involvement, contrary to generalist palliative care services, suggesting volunteers have a more important position in dedicated palliative care services. A link is found between volunteer involvement, training, and task performance.

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.…”

“…The contrast between nursing home volunteers and volunteers from other care services, shown in the current paper and in previous studies (Vanderstichelen et al, 2019b(Vanderstichelen et al, , 2019cVanderstichelen, Houttekier, et al, 2018) is striking, particularly considering that the Belgian nursing homes have historically been anchored in their local community and considering many people spend the last days of their life in a nursing home. The reasons behind the poor development of palliative care volunteering in nursing homes may be tied to challenges for palliative care provision itself in nursing homes, for example, lack of knowledge about the principles and practices of palliative care (Smets et al, 2018;Wowchuk, Mcclement, & Bond, 2007), negative care provider attitudes towards death and dying and unnecessary hospital transfers for dying residents (Wowchuk et al, 2007).…”

“…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.…”

“…Based on estimates of average total volunteers per stratum and per cluster, obtained from a previous study (Vanderstichelen et al, ; Vanderstichelen, Houttekier, et al, ), a required sample size was calculated for each stratum, assuming a 5% margin of error and =0.05 (for a finite population), resulting in a total obtained sample requirement of 1,479 volunteers. Lacking other empirical studies of similar scope, a response rate of 70% was assumed based on one previous study of palliative care volunteering at the organisational level, which used the same sample population (Vanderstichelen et al, ; Vanderstichelen, Houttekier, et al, ). This resulted in a total required sample size of 2,115 volunteers and required the inclusion of 44 clusters across all strata.…”

“…Several studies have explored volunteer task performance, training, motivation, economic value and turnover rates (Burbeck et al, 2014;Claxton-Oldfield & Claxton-Oldfield, 2012;Morris, Payne, Ockenden, & Hill, 2017;Morris et al, 2013;Vanderstichelen, Houttekier, et al, 2018). However, with exception of a few studies that consider volunteer involvement -conceptualised mainly as volunteer presence -in palliative care (Candy, France, Low, & Sampson, 2015;Vanderstichelen, Cohen, Van Wesemael, Deliens, & Chambaere, 2019c) and volunteerprofessional collaboration in palliative care (Meyer, Schmidt, Zernikow, & Wager, 2018;Vanderstichelen, Cohen, Van Wesemael, Deliens, & Chambaere, 2019a;Wittenberg-Lyles, Parker Oliver, Demiris, & Regehr, 2010), the literature hitherto lacks insights into the wide variation of volunteers active in palliative care and into how volunteers are integrated into health services and care provision. Most studies limit their focus to volunteers in dedicated palliative care services (Candy et al, 2015;Hotchkiss, Unruh, & Fottler, 2014;Mundle, Naylor, Weaks, & Buck, 2013;Pesut, Hooper, Lehbauer, & Dalhuisen, 2014;Wilson et al, 2005), while research has, for instance, suggested that home-care services, sitting services and -to a lesser extent -oncology wards and nursing homes have volunteers who perform several palliative care-related tasks (Vanderstichelen, Cohen, Van Wesemael, Deliens, & Chambaere, 2019b;Vanderstichelen et al, 2019c;Vanderstichelen, Houttekier, et al, 2018).…”