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

Abstract

Volunteers occupy a specific space in the delivery of palliative care (PC), addressing specific aspects of care and providing a link between professional healthcare providers and informal care. Engaging and empowering these volunteers can be an important strategy to deliver more integrated and comprehensive PC. Insights into current actual volunteer involvement and collaboration across different healthcare services providing generalist and specialist PC is lacking. This study aims to describe volunteers' involvement in the organisation of PC, collaboration with professionals and how they evaluate this. A cross-sectional postal survey of volunteers was conducted between June and November 2018 using a written questionnaire. A two-step disproportionately stratified cluster randomised sample of 2,273 registered volunteers was taken from different strata of healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium). Overall response was 35% (15%-60% for individual strata). About 67% of volunteers were often to always informed about the organisation of patient care and 48% felt the organisation often to always takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation failed to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) over certain aspects of patient care provision often enough. Overall, volunteer-professional collaboration was low, and mostly limited to information sharing. Dedicated PC volunteers collaborated extensively with nurses, often involving task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) were the most cited barriers to volunteer-professional collaboration. Many volunteers were open to stronger involvement in the organisation of care in PC services. Collaboration with professionals seemed lacking in width and depth. Particularly, nursing home volunteers indicated a desire and large potential for more involved and collaborative roles in PC provision.