Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease

Background. The value of incorporating patients' perspectives in health care is being acknowledged more and more because such incorporation may improve quality of health care. However, research priorities are mostly driven by professionals. In this study, renal patients were engaged to list priorities for social scientific research in order to complement the professionals' research agenda on kidney diseases.

Methods. A qualitative methodology was conducted by a team consisting of researchers and renal patients. Individual and group interviews were held in order to develop a social scientific research agenda from the perspective of patients on dialysis or with a history of dialysis. Subsequently, some current medical literature was scanned to explore whether or not the top priorities in this social science agenda were indeed under investigation by scientists in the field of health research.

Results. Respondents prioritized 17 research themes. Three top priorities included research on coping, family life and mastery in the face of demanding treatment. As patients have to adapt themselves permanently to the un-predictability of their disease and different stressors, research on coping receives high priority. The patients' illness affects the family as well and patients therefore indicate that research should focus on their relatives and the family as a social system. Patients often feel their lives are run by the requirements of the medical system. Strategies that help patients to remain independent and keep control over their own life are therefore considered as highly important research topics.

Conclusions. Renal patients' social scientific research agenda can be used together with biomedical research agendas, in order to match research with the context and needs of patients. Social scientific research topics should be studied from a holistic perspective as having a disease and living a life are interrelated. This requires intense collaboration between biomedical and social scientific researchers.