Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.
Lauren D Smith, Anne Valentine, Tiffany A Moore Simas and 4 others
PMID 41693454WHAT IT FOUND
Clinicians often learned a woman had an intellectual disability only after meeting her, and they were unsure whether her family caregiver had legal decision authority.
Caregivers were seen as valuable support, but could also override the woman's wishes.
Key findings
01Clinicians often did not know before the appointment that a patient had an intellectual disability, and they were uncertain whether a family caregiver had legal authority to make decisions.
02Caregivers sometimes took over decisions, while a few clinicians advocated for the woman's own wishes.
03Participants saw family caregivers as valuable to perinatal care, and they also described situations where caregiver wishes conflicted with the woman's wishes.
STILL TO COME
How it was doneWhat they found
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What it does not show
Only 17 clinicians took part. Fourteen were white and sixteen were non-Hispanic, so the views may not fit all clinicians or patients. The study reports what clinicians said about their experiences, not what was observed in appointments or what patients said. No rural clinics were included, so barriers in those settings are not covered. All participants had already cared for pregnant women with intellectual disabilities, so clinicians without that experience may face different problems. Data were collected in 2017 and 2018, and the paper notes more recent research reports similar barriers.
Declared interests
The study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Institute on Disability, Independent Living, and Rehabilitation Research. The supplied text does not report author conflict-of-interest declarations.
The easy way to misread this
Do not conclude that family caregivers should be involved in all perinatal decisions. The paper reports clinician perceptions, and it describes situations where caregiver wishes conflicted with the woman's wishes and could affect her autonomy.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →