Discussing the menopause with women with learning disabilities

Abstract

Traditionally, little attention has been paid to the menopause as it affects women with learning disabilities. Consequently, older women with learning disabilities have rarely been adequately prepared for, or supported through, what for most women is a significant 'change of life'. None of the existing literature focuses on the women's perspectives, but rather, looks at menopause from a medical angle, in particular focusing on the timing of onset. The research study described in the present paper is an attempt to gain some insights into the ways in which women with learning disabilities perceive the menopause. The main informants were women with learning disabilities themselves, but also general practitioners, staff in learning disability services and parents who still cared for their middle-aged daughters at home. The research project also involved the non-disabled researchers working alongside two groups of women with learning disabilities, who acted as advisors and consultants to the project, and who were paid for their time.

New Voices in Women's Health: Perceptions of Women With Intellectual and Developmental Disabilities

“…This study also supports previous findings (Canrinus & Lunsky, 2003;McCarthy, 2002;McCarthy & Millard, 2003;) that women with intellectual and developmental disabilities continue to face a multitude of barriers to quality health care, including anxiety and fear around various health examinations, communication difficulties with health professionals, and inadequate education about women's health issues. We discovered troubling gaps in the participants' understanding of the care they were (or were not) receiving and the importance of certain procedures to their overall health.…”

“…Across all focus groups, the women told us that they were not getting adequate explanations and information about their reproductive health as they aged, consistent with McCarthy's (2002;McCarthy & Millard, 2003) findings that women with intellectual and developmental disabilities who experienced physical changes related to menopause had inadequate overall knowledge and understanding about this life transition and its relation to reproduction. There is a need for research to understand which women with intellectual and developmental disabilities currently receive hormone replacement therapy and how they perceive the intended purpose, benefits, and risks of those treatments.…”

“…She found that these participants held mostly negative views about their bodies, particularly around weight issues, and that the women's perceptions of dissatisfaction may be influenced by the same norms of conventional beauty and femininity as experienced by other women. In later studies, McCarthy (2002;McCarthy & Millard, 2003) investigated the perceptions of women with intellectual and developmental disabilities experiencing menopause and found that, despite their reports of experiencing physical changes related to menopause, the women had inadequate overall knowledge and understanding about this life transition and its relation to reproduction. Canrinus and Lunsky's (2003) interview study with 9 women in Toronto with intellectual and developmental disabilities revealed that the women faced significant health challenges as they aged; yet, they reported feeling relatively happy and satisfied with their health as well as with personal supports they received from community agency service providers.…”

“…Limited health research using group formats with people with intellectual and developmental disabilities (Bollard, 2003;Cambridge & McCarthy, 2001;Fraser & Fraser, 2001;Martin, Roy, Wells, & Lewis, 1997;McCarthy & Millard, 2003;Walsh, Heller, Schupf, van Schrojenstein Lantman-de Valk, & Working Group, 2000) has focused on narrowly defined topics, has been mixed gender, or has included staff or family care providers as group participants. Few studies have provided opportunities for women with intellectual and developmental disabilities to participate in open, wide-ranging group discussions of aging, disability, health, and well being with only their peers.…”

How do people with learning disabilities experience and make sense of the ageing process?

“…One participant stated that in her understanding, the term "getting older" only applies to the deterioration that happens in very old age. There is evidence that people with learning disabilities lack information and understanding around normal changes with age such as the menopause (McCarthy & Millard, 2003). This suggests a need for psychoeducational work for people with learning disabilities to increase their understanding of ageing as a process.…”