More from Evidence to Policy
Discover more tales from the nexus of policymaking and evidence
Palliative care historically relied upon voluntary activities, especially those initiated by religious organisations - in early 20th Century Britain, Anglican and Catholic organisations ran several hospices (Clark, 1999). The institutionalisation and medicalization of palliative care that took place in the 1960s, did not undermine its charitable status. In recent years, policy in the UK strategically turned towards volunteering to support professional services, as well as provide effective care to vulnerable groups, such as caregivers and older people. These new policy directions present unique opportunities for palliative care.
Community and neighbourhood activity can be particularly responsive to care needs, especially when organised and directed to meet set objectives. In palliative care, communities often support professional services through voluntary work in hospices, hospitals, and other end-of-life care settings (Burbeck et al., 2014a; Morris et al., 2012; Pesut et al., 2014; Anderson & Ohlen, 2005), while neighbourhoods are inventive and lead the implementation of volunteer-led community development or befriending programmes (Charlesworth et al., 2008; Sevigny et al., 2009).
A team of researchers at the University of Southampton embarked upon a project that aims to record the range and scope of volunteer-led programmes in palliative and end-of-life care, and understand their basic properties and processes (for more information on the project see here ). The objective is to model implementation frameworks that will enable policy-makers and healthcare services to effectively utilise idiosyncratic voluntary support systems to deliver targeted care with predictable and measurable outcomes. The study pays particular emphasis upon caregiver outcomes – a group with limited formal support systems, and an essential role in palliative care (Bailey et al., 2011).
A review of the literature and a national survey revealed that there are multiple definitions and understandings of volunteering in palliative care. Commonly, volunteering refers to the support roles that volunteers play in healthcare settings such as hospitals and hospices (Burbeck et al., 2014b). Befriending programmes in the community are not always included in studies on volunteering in palliative care, and only recently research began to report and analyse their impact (Sallnow et al., 2015). Other informal initiatives such as those performed by community members that mobilise social networks and neighbourhood support systems (Greene et al., 2011), are seldom included in studies on volunteering, although recent policy directions prescribe the creation of communities which are ‘prepared to help’ people with end-of-life care needs (National Palliative and End of Life Care Partnership, 2015).
Professional palliative care services slowly but gradually embrace all forms of volunteering, and form partnerships with volunteer-led support systems in the community. The challenge in forming community relationships can be attributed to professionalization processes in palliative care since the 1960s. In light of current policy directions that call for greater engagement with volunteering, it is important to take advantage and utilise the unique roles and skills that volunteers bring into palliative care. The roles of volunteers are social – volunteers provide practical support, serve communication purposes, promote meaning-making, and as fellow citizens and community members, they acknowledge the value of those who are at the end of life, as well as those that care for them (Sevigny et al., 2009; Scott & Howlett, 2009). Their involvement in community development programmes and outreach activities allows them to fully embrace the above roles and support needs in the community.
To develop a thorough understanding of volunteering, and engage professional palliative care services in constructive reflections on how to build partnerships with the voluntary sector, the CoCare research team at Southampton University organised a policy event. The purpose of the event that took place in the summer of 2016 in London, was to draw recommendations and key messages for policy-makers. The report drawn on the basis of the policy commission proceedings, points out a number of areas that policy could work upon to promote greater collaboration between professional services and informal community initiatives. A collaborative approach to care that includes the community is more likely to support invisible groups, such as caregivers.
Dr Aliki Karapliagkou
University of Southampton
