Bella Vivat, PhD, Research Lecturer, College of Health and Life Sciences, Brunel University, UK, gives some background to the plenary talk she gave at the 8th EAPC World Research Congress in Lleida in June.
I am a sociologist/anthropologist of health and illness and have been interested in the spiritual aspects of palliative care since the early 1990s. My PhD was an ethnographic study of a Scottish hospice, conducted during 1997-8, using participant observation to explore the spiritual aspects of care. I found that most workers were hesitant to initiate conversations about issues related to spirituality with patients, often owing to concern that patients might become distressed. It seemed to me, however, that any distress patients felt was already there, and so engaging in discussion around spiritual issues, rather than causing distress, might in fact help patients to express and perhaps partly address the distress they were already experiencing.
I wondered whether a tool might help staff initiate such discussions with patients. A measure of spiritual wellbeing, by raising issues relating to the end of life, thereby stimulates reflection on those issues. Thus, assessing or measuring spiritual wellbeing necessarily also initiates an intervention. A measurement tool also therefore serves to ‘open the door’ for discussion, that is, a care provider can demonstrate their interest by giving the measure to a patient, and the patient can then choose whether to respond to this interest, by completing the measure, and to what extent.
Stemming from this, for the past several years I have been one of the two principal investigators on an international study to develop a measure of spiritual wellbeing for people receiving palliative care for cancer, on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. My co-principal investigator is Teresa Young, of the Lynda Jackson Macmillan Centre, Mount Vernon Cancer Centre in north-west London. Data collection for the final, validation phase of the study was completed in mid-2013, with data from 458 patient participants in seven European countries (Austria, France, Italy, the Netherlands, Norway, Spain and the UK), plus Australia, Chile, China, Iran, Japan, Mexico and Singapore, and we completed initial data analysis in early 2014.
We were delighted that our abstract reporting on the validation phase of this study was selected for presentation in the opening plenary of the 8th World Research Congress of the EAPC in Lleida in June. Uncertainty continues to be an issue for spiritual care and, perhaps because of this, its provision is patchy. Even during measure development we have found that patients in many collaborating countries have engaged with the measure and responded to their study participation by discussing issues that have most importance for them. The final validated version of our measure will soon be available for general use, and we hope that it will contribute to improving the provision of spiritual care. Although our aim has always been to produce a measure that has cross-cultural validity, there are some parts of the world in which we have not so far had study collaborators. We plan future studies to confirm the factors identified in this validation study, and already have offers of collaboration from colleagues in countries which have not previously taken part in the study. We would be pleased to welcome collaboration from anyone else who would be interested. If you are interested, do please contact me: email@example.com
This ongoing project complements the work of the EAPC Spiritual Care Task Force, of which I am also a member and co-leader of the implementation sub-group. The implementation sub-group is currently developing an international study to explore current practices relating to spiritual care – watch the Spiritual Care Task Force webpage for a call for participation, and the webpage and this space for our findings!
Links and resources…
- EORTC QLG Spiritual Wellbeing page.
- EAPC Spiritual Care Task Force.
- EAPC Spiritual Care Task Force’s online inventory of education opportunities.
- Recent blog post from EAPC Spiritual Care Task Force’s education sub-group.
Reports and selected presentations from the 8th EAPC World Research Congress now online…
Click here to view Dr Vivat’s presentation, ‘Cross-cultural validation of an EORTC measure of spiritual wellbeing’ on the EAPC website.