People with epilepsy obtain added value from education in groups: results of a qualitative study

BACKGROUND AND PURPOSE Having epilepsy requires individuals to learn about self-management. So far, trials of self-management courses have not included in-depth qualitative evaluations of how the learning method influences participants' perceptions and behaviour. We aimed to interview participants who had attended a course, as part of a randomized controlled trial, to examine: (i) their perceptions of what they valued and negative aspects of the intervention, and (ii) whether and in what ways they continued to make use of the training. METHODS Twenty participants were selected within 6 months of undertaking a course from the larger randomized controlled trial conducted in England. Semi-structured interviews were based on a topic guide. RESULTS Participants' characteristics were representative of the clinical and demographic characteristics of the trial group. Their mean age was 44 years, half were male, and three-quarters had had epilepsy for over 10 years and had experienced one or more seizures in the previous month. Participants valued the opportunity to meet 'people like them'. Structured learning methods encouraged them to share and compare feelings and experience. Specific benefits included: overcoming the sense of 'being alone' and improving self-acceptance through meeting people with similar experience. Over half reported that this, and comparison of attitudes and experience, helped them to improve their confidence to talk openly, and make changes in health behaviours. CONCLUSIONS People feel socially isolated in long-term poorly controlled epilepsy. They gain confidence and self-acceptance from interactive groups. Expert-facilitated courses that encourage experiential learning can help people learn from each other, and this may enhance self-efficacy and behaviour change.