‘It should be more outspoken and not hushed away, not like put in a dark box’: An interpretative phenomenological analysis of experiences of menopause voiced by women with learning disabilities

Abstract

BackgroundThere is little research into experiences of menopause voiced by women with learning disabilities, who can be neglected in academic research. There is a particular lack of knowledge around the psychological and social experiences of menopause in this population, and how changes are managed. This study sought to explore these experiences.MethodsExperiences of five women with lived experience of menopause, being seen by community National Health Services specialising in learning disabilities, were captured with semistructured interviews and analysed using interpretive phenomenological analysis.FindingsFive superordinate themes were identified, involving the importance of having information about menopause, challenges of periods, observable changes in menopause, the importance of social connection, and managing menopause independently.ConclusionsThis study highlights the need for clinicians and carers to understand the variety of impacts menopause can have on women with learning disabilities, including emotional and social aspects, and the need to initiate conversations regarding menopause and available treatments.

Menstruation and learning disability across the life course: Using a two‐part scoping exercise to co‐produce research priorities

“…The scoping review of the literature found that attention to the topic of menstruation and learning disability has fallen over the last two decades with only two of the included UK-based papers being published within the last five years. The lack of recent empirical studies on menstruation and learning disability may be related in part to significant barriers in recruitment practices, as documented by Langer-Shapland et al (2023); detailed further in a follow-up paper for In Response (Millear et al, 2023). This implies that the most recent generation of women with learning disabilities is not sufficiently included in the evidence base, which is a notable concern.…”

“…Existing studies also tend to focus on specific stages of menstruation such as menopause rather than taking a life course approach to the topic. The experiences of different phases are potentially related as a lack of knowledge about the menstrual cycle could impact later confusion and experience of menopause (Langer-Shapland et al, 2023;Moore et al, 2023). McCarthy (2002a) questions whether the distinct phases of the lifecycle are meaningful/experienced in the same way by women with learning disabilities.…”