Exciting but exhausting: experiences with participatory research with chronically ill adolescents

Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research. Objective To evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co-researchers. Design, setting and participants Nine adolescents, aged 15-17 years, acted as co-researchers in a hospital-based PR project. They co-developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12-19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results. Results Involving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer-research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co-researchers also proved difficult. Conclusions Adolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co-researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health-care service development and innovation.