"It should be called WOMEN-opause": Perceptions, experiences and knowledge of menopause voiced by women with...

Women with intellectual disabilities experience significantly poorer health outcomes than women from the general population, on average dying 15 years younger. Little is known about menopause in women with intellectual disabilities; therefore, this study explores the perceptions, experiences and knowledge of women with intellectual disabilities on the topic of menopause.

Semi-structured interviews were utilised to collect qualitative data on menopause from women with intellectual disabilities. A sample of 13 women with mild or moderate intellectual disabilities over the age of 35 were purposively recruited from a linked service provider. Reflexive thematic analysis was utilised to generate themes reflecting the perceptions and experiences of participants on the topic of menopause. Ethical approval was obtained for the current study, and Patient and Public Involvement was embedded throughout.

Five overarching themes were developed: a) Menopause takes control; b) Difficult to understand; c) Knowledge is power; d) Dismissed due to intellectual disability; e) A tailored approach. The findings indicate a dearth of knowledge among women with intellectual disabilities on the topic of menopause. The lack of understanding is pervasive and influences perceptions of menopause which can negatively affect the severity of menopausal symptoms and help-seeking behaviour.

Understanding obtained from an in-depth exploration of menopause highlights the inequities faced by women with intellectual disabilities and can help to inform the production of specialised educational materials, care pathways and tailored policy initiatives on menopause to improve the health outcomes of this population.