Developing written information on osteoarthritis for patients: facilitating user involvement by exposure to qualitative research

Abstract

AbstractIntroduction In developing a guidebook on osteoarthritis (OA), we collaborated with people who have chronic joint pain (users). But to advise, users need to be aware of and sensitive about their own state of knowledge and educationalists argue that adults sometimes lack such awareness. This paper will report on our experience of providing users with findings from qualitative research to increase awareness of their level of knowledge.Method A summary of the results from qualitative research into people’s experiences of living with chronic pain was sent to individual members of two groups of users. It was then used to structure group meetings held to help identify information needed for the guidebook.Findings Some users found the summary difficult to read and suggested how to simplify it. Nevertheless, it helped most users to become aware of the experiences and views of others who have OA and thus become more sensitive to their own level of knowledge. It also helped them recall experiences that stimulated practical suggestions for managing joint pain in everyday life and provided a way of gently challenging the views of users when they appeared to assume that their views were widely held. The discussions brought to light gaps in the research literature.Conclusion We believe this way of involving users by exposing them to qualitative research findings about lay experiences of living with OA effectively facilitated the users’ contributions to the needs of those who have to live with OA, and we believe it has wider applications.