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
Spiritual care and spiritual wellbeing are central to palliative care, with growing interest in these topics in recent years. I have been absorbed in this fascinating and challenging field since the late 1990s, when I conducted an ethnographic PhD study, exploring spiritual aspects of care in a Scottish hospice.1 A few years later, I began as Co-Principal Investigator (jointly with Teresa Young2) on an international cross-cultural project, developing and validating the EORTC QLQ-SWB32: a measure of spiritual wellbeing for people receiving palliative care for cancer.3;4
Validation data collection was completed in 2014, with 451 participants in 14 countries, using ten languages. Attendees at the EAPC World Research Congress in Lleida in 2014 may remember that I presented initial findings from this final phase of our study in the opening plenary of that meeting.4 We are about to submit our paper discussing the overall validation findings for journal publication. More detailed analysis is ongoing.
I am presently on a research visit to the University of Agder, Kristiansand, Norway, invited by Gudrun Rohde – Associate Professor, and Norwegian collaborator on the EORTC QLQ-SWB32 validation study – to present and discuss the EORTC QLQ-SWB32, spiritual care, and spiritual wellbeing with colleagues at the University and the local palliative care team. With these Norwegian colleagues, as with other interested individuals and groups internationally, we are exploring possibilities for using the EORTC QLQ-SWB32 in clinical practice, including non-cancer conditions, and related research.
The EORTC QLQ-SWB32 functions as a way to ‘open the door’, or indicate interest in spiritual wellbeing issues, which can sometimes be difficult to bring up in conversation with patients. A tool like this, by presenting possibly relevant issues in writing, initiates reflection by respondents, who can then indicate those particular issues which they feel most important. These issues can then be discussed further in later conversations. We would be delighted to hear if anybody has any ideas for research and/or clinical projects using the EORTC QLQ-SWB32 – please do email me if so.
EAPC Spiritual Care Taskforce survey – please take part!
As co-lead of the implementation subgroup of the EAPC Spiritual Care Taskforce,5 and more widely, I am increasingly engaged with the multiple issues which spiritual care and spiritual wellbeing present for care, clinical practice, and research, and how these interweave and overlap.
Although national and international guidelines for spiritual care have been produced, little is known about their implementation, nor the detail of which activities caregivers currently understand as comprising spiritual care. I have developed a survey to explore the understandings of spiritual care of EAPC members, together with M. Teresa Garcia-Baquero Merino6 (implementation subgroup co-lead), and Teresa Young. Our survey went live on the EAPC website in early April, and gratifyingly more than 400 people have already responded!
We would be thrilled if we could reach 500 responses, or even more – even if data analysis would likely become rather longer and more complex than originally anticipated!
The survey is open until Thursday 5 May, so you could still help us reach 500 responses by following this link.
References and links
- Vivat, B (2004). The whole and the parts: Spiritual aspects of care in a West of Scotland hospice. Unpublished PhD, University of Edinburgh.
- Teresa Young, Mount Vernon Cancer Centre, Northwood, Middlesex, UK
- 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. 8th Research Congress of the European Association for Palliative Care (EAPC), Lleida, Spain, June 2014.
- Nolan S, Saltmarsh P, Leget C (2011). Spiritual care in palliative care: working towards an EAPC Task Force. European Journal of Palliative Care, 18(2): 86-90.
- M. Teresa Garcia-Baquero Merino, Regional Palliative Care Office, Madrid, Spain.
Are you coming to the 9th EAPC World Research Congress?
Look out for members of the EAPC Spiritual Care Task Force who will be in Dublin for the congress. Dr Bella Vivat will also be presenting her poster: “What Do Previously Homeless People in London, UK, Think about Advance Care Planning (ACP) and End of Life Care (EOLC)? A Qualitative Investigation”.
9th EAPC World Research Congress, Dublin, Ireland 9-11 June 2016. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl