'I Have Come Here to Learn How to Cope with My Illness, Not to Be Cured': a Qualitative Study of Patient Expectations Prior to a One-week Self-management Programme

Background: Self-management programmes (SMPs) have been developed to help patients with chronic rheumatic diseases to manage their health problems. Patients' expectations prior to treatment are important determinants of outcomes, and should therefore be identified, to ensure that interventions meet the participants' needs. The aim of the present study was to determine participant expectations with respect to a one-week inpatient SMP for those with fibromyalgia (FM) and rheumatoid arthritis (RA).

Methods: A qualitative study consisting of semi-structured interviews was used to explore the expectations of eight participants with FM and eight with RA. The data were analysed using thematic analysis.

Results: The findings show that the participants expected the SMP to be a turning point towards a better future and to empower them to assume more responsibility for their own health and self-care. They also expected the SMP to facilitate acceptance, help them to gain new knowledge and be a forum in which to share their experience. Participants who were employed assumed that participation in the SMP would help to ensure that they would continue in their jobs.

Conclusions: This qualitative study indicated that identifying expectations prior to an SMP provides important information which has implications for the programme's implementation. Additional themes, such as acceptance of the illness and management of work, should also be included in the programmes and they should focus more on sharing experience.