Menopausal Experiences of Women with Intellectual Disabilities

Abstract

Background Little is known about the menopause in women with intellectual disabilities (ID) save that its onset is earlier than in the general population, and earlier still in women with Down's syndrome (DS). This study directly explored menopausal experiences in women with ID, both with and without DS, with the aim of identifying levels of knowledge of the menopause and of its health and reproductive implications. Methods Information was collected from 45 women with ID (17 DS, 28 non-DS; age 35-65 years) using a semistructured interview. Results Menopausal experiences of the women with and without DS were very similar. Most of the women were unaware of menopause-associated changes in their body and few understood why they menstruated. Difficulties in disentangling behavioural consequences of menopausal symptoms from behaviours arising from other causes were evident. A need for better health education training and more accessible health resources was identified.Conclusions Promoting better awareness of menopauserelated health issues in women with ID seems warranted. Appropriately-tailored health education materials need to be made more readily available.

Exploring experiences and understandings of pain in adults with intellectual disabilities

“…), and it is not unusual to find pain relief not provided when needed (Willis et al . ). Pain management in this population is a very under‐researched area and consequently very little is known about best practices for pain relief.…”

Carer Knowledge and Experiences With Menopause in Women With Intellectual Disabilities

“…Our findings support previous work indicating that there may be a very limited understanding of menopause in women with ID (McCarthy, 2002a; Walsh & Heller, 2002; Willis, 2008; Willis et al., in press). They also challenge the suggestion that this may be because care staff feel uncomfortable about discussing this aspect of the women's lives, and highlight the difficulties they may have in recognizing menopausal symptoms and the dilemma they face in discussing the health and childbearing implications of menopause.…”

“…This study aimed to provide findings to complement those from a parallel study investigating the menopausal knowledge and experiences of 45 women with intellectual disabilities (Willis et al., in press). The specific aims of the present study were, through one‐to‐one interviews, to (1) explore knowledge and understanding of the menopause in these women's carers, (2) gather their experiences of supporting the women under their care through the menopause, and (3) identify what additional help might assist carers in providing better support over this important transitional period in the lives of women with ID.…”

“…A small number of studies have shown that women with ID have difficulties recognizing symptoms of menopause and have little understanding of either menopause itself or what it signifies in terms of health and reproduction (McCarthy, 2002a; McCarthy & Millard, 2003a; Willis, 2008; Willis, Wishart, & Muir, in press). Limited communication abilities often prevent the women from being able to express how they feel or to report menopausal symptoms to carers, with these symptoms often then going unnoticed (McCarthy, 2002a; Tuffrey‐Wijne, 2003).…”

“…McCarthy (2002b) and McCarthy and Millard (2003a) reported that carers do indeed play a central role in reporting problems and supporting the women, but that there is a need for them to be more vigilant. McCarthy (2002b), for instance, reported that 52% of carers acknowledged that they would not notice the signs and symptoms of the menopause, while in a parallel study (McCarthy, 2002a), it was noted that there was dissonance between carers' perceptions of the women's menopausal experiences and those of the women themselves (see also Willis et al., in press).…”