Volunteer policy in palliative care in Flanders : a content analysis of policy documents

Background: Volunteers are considered a third resource of palliative care (PC), next to family and professional caregivers, and can potentially increase the quality of patient care. Yet, conflicting expectations exist regarding volunteer roles, which may lead to role strain and attrition. Moreover, it is unclear how policy pertaining to volunteering within PC services addresses these issues. Therefore, volunteering policies of PC services in Flanders (Belgium) were analyzed, in terms of measures to combat role strain and how these vary across services. Methods: A full-population sample of services providing dedicated – PC units, day-care centers and home-care teams – or generalist PC – sitting services, community home-care, medical oncology departments and a random sample of nursing homes – were asked for their volunteer policy documents in 2016. Qualitative content analysis was performed using a coding frame comprising four main measures to combat role strain: leadership behavior, co-worker support, formalization and empowerment. Results: 264 (N=334; 79%) organizations responded to the survey. 67% claim to have and 45% sent in policy documents. Policy varies considerably, with measures mainly focused on formal aspects: role description, supervision, intervision, governance. Supportive measures such as training, recognition, autonomy, teamwork and emotional support are less accentuated. Dedicated PC services describe leadership behavior, co-worker support and empowerment more extensively and more often than generalist PC services. Conclusion: Given that best practices to tackle volunteer role strain are not widely integrated in organizational policy, their importance may not be acknowledged and their implementation in practice limited. Dedicated PC services appear to employ more role strain-reducing measures than generalist PC services. Further research is warranted to determine the exact impact of these policy measures on volunteer role strain and attrition. This study was funded by IWT SBO nr 140009

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

Objectives Volunteers 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. Methods A 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. Results 79 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. Conclusion Volunteers 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

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic. A multi-national EAPC volunteer taskforce survey

Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic

Evaluating the EAPC Madrid Charter on volunteering in hospice and palliative care : reflections on impact

The European Association for Palliative Care (EAPC) Madrid Charter on volunteering in hospice and palliative care (HPC) was launched in 2017 to advocate for the support, recognition, promotion and development of volunteering in HPC. However, charters are rarely evaluated, and impact often assumed a priori. To evaluate whether such declarations influence change, we must understand their reach and use. We aimed to assess the awareness, reach and impact of the EAPC Madrid Charter on HPC Volunteering in Europe and evaluate its potential as an advocacy tool in HPC. An online survey questionnaire including open and closed questions, was sent to a convenience sample of all 55 EAPC member organizations, other regional and national European HPC and HPC volunteering organizations. Forty-six responses were received from 11 countries. The Charter mainly spread through word of mouth (72%). Sixty-four per cent of respondents had heard of the Charter; of these 80% had signed it but only 30% had used it. Directors used the Charter in policy documents (70%). Volunteer coordinators had used it in various ways (57%). Most general coordinators (83%) found no use for the Charter. Feedback from participants indicated a lack of practical applications. The Charter was considered useful for policy negotiation but lacking practical applications to support HPC volunteering in the short term. Charters may be tools for long-term change, rather than immediate change in practice. A multipronged approach may be required where Charters are complemented by practical instruments

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

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)

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