UNDER THE LENS – A NEW SERIES HIGHLIGHTING THE IMPORTANT ROLE PLAYED BY VOLUNTEERS IN PALLIATIVE CARE…
Writing on behalf of the European Association for Palliative Care (EAPC) Task Force on Volunteering, Catherine Walshe and Sheila Payne from the International Observatory on End of Life Care, Lancaster University, United Kingdom, explain why it’s important to investigate hidden assumptions about volunteering in palliative and hospice care contexts and the specific research questions that should be asked. This is one of a series of blog posts addressing volunteering.
Christine knows she is dying and is keen to stay at home. She is increasingly weak, but this frustrates her as she is no longer able to get out easily, to walk her dog, or to mow her lawn. She is offered a volunteer who could come every week to help. Surely this is a good thing? But why might it be important to conduct research into having such a volunteer?
The purpose of this blog is to start to investigate hidden assumptions about conducting research associated with volunteering in palliative and hospice care contexts. As researchers, we take a neutral stance about the potential benefits and harms of volunteering in palliative care contexts. For example, how much time and effort should an organisation invest in the recruitment, training and support of volunteers? Decisions have to be made about who might become a volunteer, to whom they are allocated, what roles they could perform, how much time given is optimal to support patients and families, whether this is a good use of volunteers’ time, and whether volunteers are able to make the same commitment as professionals. Many of these questions could and should be answered by research.
In most, but not all countries, volunteers are regarded as an essential part of delivering palliative care services (reference EAPC Atlas of Palliative Care in Europe 2019).
Let’s look at some scenarios…
- In a community outreach service, Anna works as a volunteer helping people with domestic tasks and providing supportive conversation for four hours each week in their own homes.
- In a standalone hospice, Bert runs activities such as sponsored walks to help raise money.
- In a hospital, the management team have decided that in future only paid professionals can provide bereavement counselling.
In most cases, the decisions about how, when and where volunteers are involved in palliative care are based on assumptions rather than good evidence that this is an effective and sensible use of resources (Morris et al 2015).
There is already a growing body of empirical research and systematic reviews about volunteers in palliative care contexts that have helped us understand more about their tasks and roles. Most of these studies use descriptive research designs rather than test different models of volunteering or compare volunteer with professionally provided services. Much less is known about their impact on patients and families, and whether, and how, they provide ‘added value’ compared to paid health professionals. The involvement of volunteers is not cost neutral, organisations need to invest resources in their recruitment, training, support and management. Is this a cost-effective investment?
There are many research questions that still need to be addressed. For example, thinking more about the three scenarios presented already, we might start to design the following research projects.
For volunteers within the home, we could ask: How do patients perceive the support provided by a volunteer? This might involve qualitative interviews with patients and the volunteers to elicit their different experiences.
To explore fundraising by volunteers, we could ask: How cost effective is it to use volunteer compared to professional fundraisers? This might involve a cross-sectional economic comparative study.
To compare professional versus volunteer bereavement support, we could test the hypothesis that outcomes for bereaved people are equally as good (on a standardised measure of bereavement outcome) for volunteers and professional workers. A randomised control trial could be used.
A better approach might lie in questioning assumptions about volunteers, starting by looking at what is already known in the literature and evaluating new and existing services, ensuring that the patient’s perspective is included.
Links and resources
- The EAPC Task Force on Volunteering.
- Morris, S M, Payne, S, Ockenden, N, Hill, M (2015) Hospice volunteers: bridging the gap to the community? Health & Social Care in the Community. Doi: 10.1111/hsc.1223.
- Read earlier posts about volunteering on the EAPC blog– and look out for posts from Dr Libby Sallnow, Dr Ros Scott and Prof Anne Goossensen in November and December.
- Read more about research and training opportunities at the International Observatory on End of Life Care, Lancaster University.