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Volunteers play an important complementary role in palliative care. First, they have the time and space to ‘be there’ for the patient. They are also an important intermediary in the communication between patients, their families and care providers. This is apparent from new research by the team of Prof Luc Deliens of the End-of-Life Care Research Group of the Vrije Universiteit Brussel and Universiteit Gent, which is part of the European Association for Palliative Care Research Network (EAPC RN).
This qualitative study was carried out with the help of focus groups made up of volunteers, nurses, psychologists and general practitioners, as well as individual semi-structured interviews with patients and informal carers. Participants were recruited from specialised palliative care services such as units, day centres and home care teams, medical oncology, regular home care and residential care centres. A total of 79 people took part.
The researchers found that volunteers fulfil two important roles in palliative care: first ‘being there’ for the patient and their families. Secondly, they are an intermediary for communication between the patient, professional care providers and family members. This enables them to recognise the patient’s needs and communicate them to professional and/or informal carers.
According to the researchers, frequent communication and coordination between care providers and volunteers is necessary if they are to fully perform their roles. Researcher Steven Vanderstichelen explains: “Volunteers in care contexts actually fill in the empty space that often arises between professional care on the one hand and family care on the other. They stand, as it were, at the intersection of the two. This research confirms their importance for good palliative care. If we want to improve this care and increase patients’ comfort, it is crucial to integrate volunteers in the care team in a good way.”
In his research, Vanderstichelen emphasises liminal space as an important conceptual lens for professionals and organisations in palliative care in order to understand the position of volunteers: “Accepting the special role that volunteers take on allows professionals and organisations to explore whether they support volunteers enough in that role and whether they are deploying them well. Appreciation and recognition are not unimportant for volunteers.” Vanderstichelen notes that in this integration policy, one of the big issues is confidentiality. To him, it is clear: “Volunteers are as much bound by secrecy and discretion as professionals, but trust in them is not always as high.”
End-of-Life Care Research Group
The End-of-Life Care Research Group is an alliance research group between VUB and UGent. Scientists from various disciplines carry out research into end-of-life care in Belgium and Europe.
The liminal space palliative care volunteers occupy and their roles within it: a qualitative study was published in BMJ Supportive & Palliative Care in December. The study is part of the Strategic Basic Research project INTEGRATE (Integration of Palliative Care into Home, Nursing Home and Hospital Care and into the Community in Flanders), which aims to better integrate palliative care in Flanders.