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Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers
Lauren D Smith1, Anne Valentine1, Tiffany A Moore Simas2
1Lurie Institute for Disability Policy, Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts, USA.
Background:
Women with intellectual disabilities experience disparities in perinatal outcomes and unmet needs in perinatal care. Many women with intellectual disabilities receive support from family caregivers, including accompaniment to healthcare visits. This qualitative study explores the experiences of obstetric care clinicians navigating perinatal care with family caregivers of women with intellectual disabilities.
Methods:
Transcripts from interviews (n = 9) and a focus group (n = 8) with 17 obstetric care clinicians were analyzed using a thematic analysis approach.
Results:
Four major themes emerged: (1) determining intellectual disability and guardianship status; (2) decision-making; (3) navigating ethical, legal, relational, and clinical challenges; (4) caregivers as an integral part of perinatal care.
Conclusions:
Family caregiver involvement in perinatal care of women with intellectual disabilities has benefits but can also present challenges for obstetric care clinicians. Clinicians need guidance on how to appropriately manage perinatal care of women with intellectual disabilities.
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