New voices in women's health: perceptions of women with intellectual and developmental disabilities.
Women with ID report gaps in health knowledge—ask open questions and provide clear, accessible health education.
01Research in Context
What this study did
Researchers talked with 20 women who have intellectual or developmental disabilities. The women were between 29 and 65 years old.
The team asked open questions about health, ageing, and doctor visits. They recorded the talks and looked for common themes.
What they found
Most women had wrong ideas about their bodies. Some thought cancer was contagious. Others did not know why they took pills.
The women said doctors spoke too fast and used big words. They wanted simple pictures and more time to ask questions.
How this fits with other research
McCarron et al. (2022) later tracked the adults with ID for 11 years. Their big sample shows the same group ages and still needs clear health talks.
Ghaziuddin (1997) found dementia looks the same in ID as in everyone else. Johnson et al. (2009) add that women may not know what dementia means unless you explain it.
Moss et al. (2009) learned that staff could not get blood pressure from 28 % of severe ID clients. The women in Johnson et al. (2009) say they want staff to try easier ways, like pictures or role-play.
Why it matters
Next time you support an adult woman with ID, ask, "What do you think this pill does?" Use her words to check understanding. Offer a drawing or story if she looks unsure. This five-minute check can stop later ER trips.
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02At a glance
03Original abstract
This study explored aging and health experiences and concerns of women with intellectual and developmental disabilities, using a participatory approach that captured the direct reports of the women, in their own words and from their own perspectives. The results of a qualitative analysis of 6 focus groups, composed of 34 women with intellectual and developmental disabilities, Age 30 years and older are reported. The focus groups addressed health knowledge, body awareness,developmental and age-related changes, life satisfaction, health behaviors, health service experiences, and perceptions of disability. Findings indicated that the women held misconceptions and limited knowledge regarding health and aging. The results are discussed in relation to disability, women's health, and social support issues, including recommendations for health professionals and care providers.
Intellectual and developmental disabilities, 2009 · doi:10.1352/1934-9556-47.5.337