Evidence Library

 

Methods: The study was informed by participatory research approaches. Patients and carers worked with the experienced researchers as equal partners. 15 patient and carer co-researchers were involved in the study, including two patients at the day hospital of a hospice. 17 focus groups were held.

 

Findings: The authors briefly report the main benefits of working with patients and carers as co-researchers - the development of a more accessible patient information sheet and set of topics for the focus group discussions. The patient and carer researchers also used their local knowledge to respond to and prompt participants during the focus groups. However, the main focus of this paper is on the practical, ethical and methodological challenges faced as a result of working with cancer patients. Under each of these three headings, the authors report on the challenges they faced, and their attempts to overcome them. A series of 8 recommendations to other researchers using similar methods with palliative care service users are then given.