Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.
Caregivers hold the keys to sexual-health care for women with IDD, and their minds can be changed with the right conversation.
01Research in Context
What this study did
The team sent an online survey to 132 family caregivers of women with intellectual or developmental disabilities.
They asked how caregivers feel about sex, birth control, dating, and doctor visits for the women they support.
The goal was to map the beliefs that open or close doors to sexual-health services.
What they found
Caregivers gave mixed answers.
Some said knowledge protects against abuse and women should make their own choices.
Others felt the women depend too much on them and pregnancy would be risky.
These split views show why service access is so uneven.
How this fits with other research
Davidovitch et al. (2018) and Lancioni et al. (2009) let adults with ID speak.
Those adults say they want relationships and know their rights, but staff and families block them.
The new survey shows the block from the family side, so the stories match.
Y-Chezan et al. (2019) proved attitudes can change.
After a short class, parents and staff became more supportive of sexual rights.
That study extends the 2024 findings by showing you are not stuck with the first answer caregivers give.
Holingue et al. (2020) used the same online-survey style with the same group and also found big service gaps, backing up the method.
Why it matters
You cannot assume a caregiver signature means yes or no.
Ask what they believe, then teach.
Use the three talking points that won in Y-Chezan et al. (2019): knowledge is power, supported choice, abuse prevention.
Add a clear doctor letter that explains the visit plan.
One ten-minute chat can flip a gatekeeper into an ally and get the client to the clinic.
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02At a glance
03Original abstract
Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.
American journal on intellectual and developmental disabilities, 2024 · doi:10.1352/1944-7558-129.2.135