Endocrine Abstracts

Objective: The objective was to explore the experiences of women with polycystic ovary syndrome (PCOS), attending a generic lay-led self management programme. The aim was to assess their concerns and expectations, and the extent to which the course addressed these.

Method: Sixteen women volunteered to attend a generic lay-led self management course, following a call for participation at two PCOS clinics and publicity in local media. Participants were women aged 24–43 (mean 31.8) years. Five of them had one or more children. Women’s concerns, hopes, expectations and experiences of attending were assessed via semi-structured interview before starting and after completing the course. The data were analysed qualitatively using deductive and inductive techniques.

Results: The women expressed a range of health concerns prior to attending the programme, including problems managing their PCOS, dissatisfaction with treatment, lack of social support and concerns for their long term physical health. They hoped the programme would offer an opportunity to meet others with similar problems, as well as specific information on PCOS and an opportunity to develop new skills. In interviews post-attendance, participants reported experiencing social, psychological and educational benefits from the programme. These including reducing social isolation, learning from others’ experiences, and developing skills such as problem-solving and communicating with health professionals, as well as specific information on issues such as managing medication side effects. Participants reported enhanced motivation to engage in self management, such as changing diet and physical activity, and an altered perspective on their PCOS. The majority of participants said they would recommend the course to others, and suggestions were made as to how the generic course could be tailored for PCOS.

Conclusions: The hopes and expectations expressed at pre-course interview were largely met by the course. Developing a PCOS-specific programme may enhance self-management support for women with this condition.