Dr. Bella Vivat, PhD, Senior Research Associate in the Marie Curie Palliative Care Research Department at University College London, UK, and Co-Lead of the Implementation Subgroup of the EAPC Spiritual Care Taskforce
My main research interest since I conducted an ethnographic study exploring spiritual aspects of care in a Scottish hospice for my PhD has been spiritual care and spiritual wellbeing in palliative care. I am increasingly engaged by the interweaving and overlapping challenges that this field presents for both research and practice.
One particularly interesting issue is that little is known about care providers’ understandings of spiritual care, nor about how they implement guidelines for spiritual care in practice. As co-lead of the implementation subgroup of the EAPC Spiritual Care Taskforce (SCTF), together with M. Teresa Garcia-Baquero Merino, and with help from Teresa Young, I therefore developed a survey to explore how palliative care professionals currently understand spiritual care.
The survey went live on the EAPC website in April 2016. When it closed a month later it had been completed by 527 people – a truly fantastic response! We are extremely grateful to everyone who completed the survey for their time, and in-depth engagement with the questions.
I presented initial findings on the sociodemographic characteristics of the respondents at the Open Meeting of the SCTF at the EAPC World Research Congress in Dublin in June 2016. Participants were 68% female, and 65% engaged in personal religious or spiritual practice. They worked across the world, from Northern Europe (42%), to Africa (1%) and Central and South America (3%). That presentation is now available to view on the SCTF website.
The comments and information provided are rich, detailed and fascinating, and we are looking forward to beginning an in-depth qualitative analysis soon. Once we have completed that content analysis, we will test hypothesised relationships between the sociodemographic characteristics of the participants and the examples of spiritual care they provide. For example, we will be looking at whether the examples given by older participants are more religiously oriented than those given by younger participants.
We would value suggestions for other hypotheses about relationships between participants’ sociodemographic characteristics and the responses they provide, which we could also test. Please do email me if you have any hypotheses to suggest.
EORTC measure of spiritual wellbeing
I am also presently co-Principal Investigator (jointly with Teresa Young) on an international project developing and validating a measure of spiritual wellbeing for people receiving palliative care for cancer: the EORTC QLQ-SWB32.1;2 We recently completed initial analysis of the validation study and hope to publish soon.
The validated EORTC QLQ-SWB32 is a means for assessing outcomes from interventions intended to address spiritual issues. A tool like this, also, unavoidably, offers a way to “open the door”, or begin interventions, or conversations relating to spirituality or spiritual wellbeing, with people receiving palliative care, who often wish to discuss such matters with their care providers.3 However, some clinicians find that initiating such discussions is challenging.4 The EORTC QLQ-SWB32 enables respondents to reflect on the issues it presents, and then indicate those which are most important for them. This is then a starting point for care providers to engage in relevant discussion.
We are beginning studies with colleagues in Norway, Denmark, and the UK, to explore using the EORTC QLQ-SWB32 in clinical practice.
We are always open to new ideas and suggestions for collaborations; please just email me if you have any ideas for research and/or clinical projects using our tool.
- Vivat B, Young T, Efficace F et al. (2012). Cross-cultural development of the EORTC QLQ-SWB36: A stand-alone measure of spiritual wellbeing for palliative care patients with cancer. Palliative Medicine, 27: 457-69.
- Vivat B, Young T, Winstanley J et al. (2014). Cross-cultural development of a spiritual wellbeing measure for cancer patients receiving palliative care. Abstract selected for plenary presentation, 8thResearch Congress of the European Association for Palliative Care (EAPC), Lleida, Spain, June 2014.
- Best M, Butow P, Olver I (2015).Do patients want doctors to talk about spirituality? A systematic literature review. Patient Education and Counseling, 98: 1320–8.
- Kristeller JL, Sumbrun CS, Schilling RF (1999). ‘I would if I could’: how oncologists and oncology nurses address spiritual distress in cancer patients. Psycho-oncology, 8(5): 451-8.
- EORTC Quality of Life Group page on EORTC QLQ-SWB32.
- EAPC Spiritual Care Task Force page.
- Bella Vivat on Google Scholar. (Includes presentations of discussions held during the course of developing the new measure).
- Read more posts on spiritual care in palliative care on the EAPC Blog.