Recruiting carers to palliative care studies: methodological challenges
|
Payne, Sheila, University of Sheffield, Sheffield, UK, Skilbeck, Julie, University of Sheffield, Sheffield, UK, Ingleton, Christine, University of Sheffield, Sheffield, UK, Nolan, Mike, University of Sheffield, Sheffield, UK, Carey, Irene, St Luke's Hospice, St. Luke's Hospice |
Researching user views in order to improve the quality of services by making them more sensitive and/or responsive to the needs and preferences of those who use them, has become a central tenet of health services research in palliative care in the UK. Recent studies would suggest that carers of terminally ill patients are willing to participate in research and benefit from participating in such studies. In our experience recruiting carers to end-oflife research is problematic. This paper will highlight the methodological complexities of recruiting carers of terminally ill patients, drawing on a current study evaluating respite services in a hospice inpatient unit. Our qualitative interview study aims to explore family carers' experiences of respite services provided by one specialist palliative care unit. Over four months 67 patients and carers have been invited to participate in the study. Fifteen (22%) patient/carer dyads and 3 (5%) patients have agreed to participate, 10 (15%) have declined to take part. Thirty nine (58%) patients and carers did not return the reply slip. These non-responding patients and carers have been followed up and the following reasons for non-participation given: respite cancelled, patient too ill to consent, patient died, patient admitted to other institution, patient unwilling to participate. This paper will explore the constraints in recruiting carers to studies, in particular the requirement of local ethics committees for a patient to give approval for their family caregiver to be approached by a researcher. The tensions experienced in striking a balance between the ethical responsibilities towards the patient and achieving the desired research outcomes in terms of accessing carer views will be critically analysed. We will contribute to the development of palliative care research knowledge by offering possible solutions to these complex issues.
|