Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review.
Caregivers decide if a woman with ID gets pads, pills, or protection—give them a clear script and the gate stays open.
01Research in Context
What this study did
The team read 57 papers about how moms, dads, sisters, and grandmas help women and girls with intellectual disability deal with periods, birth control, and staying safe from abuse.
They did a scoping review. That means they mapped every type of help caregivers give, instead of testing one program.
What they found
Caregivers are the real gatekeepers. Doctors talk to them first, not the woman herself.
Five big jobs kept popping up: teaching about periods, getting pads, choosing birth control, watching for abuse, and fighting for doctor visits.
How this fits with other research
Winburn et al. (2014) saw the same fear and role conflict years earlier. Heald et al. (2020) widened the lens and shows the fear is still there, but now we know exactly where it bites: pads, pills, and pap smears.
Pettingell et al. (2022) looked at sex-ed classes for students. They found almost no valid tests to see if the classes work. Put together, the two reviews shout: caregivers control access and we still can’t measure what students learn.
Baker et al. (2025) asked families of people with severe ID what they need from health teams. Their answer — treat us like partners — matches the 2020 call to train clinicians so caregivers feel ready, not scared.
Why it matters
If you write plans for girls or women with ID, loop the caregiver in from day one. Offer a short lesson plan on periods, pill alarms, and red-flag behaviors. When caregivers feel skilled, they open the gate instead of locking it.
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02At a glance
03Original abstract
BACKGROUND: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID. METHOD: We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country. RESULTS: The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation. CONCLUSIONS: Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12706