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Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.

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Title: Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.
Authors: Smith, Lauren D. (AUTHOR), Valentine, Anne (AUTHOR), Moore Simas, Tiffany A. (AUTHOR), Parish, Susan L. (AUTHOR), Powell, Robyn (AUTHOR), Hu, Luanjiao (AUTHOR), Mitra, Monika (AUTHOR)
Source: Journal of Applied Research in Intellectual Disabilities. Jan2026, Vol. 39 Issue 1, p1-11. 11p.
Subjects: Families & psychology, Obstetricians, Research funding, Qualitative research, Focus groups, Perinatal care, Interviewing, Statistical sampling, Psychology of women, Physicians' attitudes, Decision making, Intellectual disabilities, Sound recordings, Thematic analysis, Ethics, Research methodology, Psychology of caregivers, Comparative studies, Guardian & ward
Geographic Terms: United States
Abstract: 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. Lay Summary: Clinicians were often unaware of a patient's intellectual disability before the appointment and were unsure how to assess guardianship or decision‐making authority once the intellectual disability was identified.Clinicians often had concerns about a patient's ability to make independent decisions and might make assumptions about patient decision‐making capacity when processes were lacking. Sometimes clinicians made decisions for their patients with intellectual disability. In some cases, they deferred to caregivers, who might take charge even when their legal authority was uncertainClinicians faced tense situations, from minor care‐compliance issues like medication adherence to more significant concerns affecting a woman's health, autonomy, or reproductive rights. Disagreements between patients and caregivers created challenges, and some clinicians reported advocating for the patient's wishes over the caregiver's wishes.Clinicians recognized that women with intellectual disabilities often have a caregiver or support person present at appointments, playing a more involved role than support people for those without disabilities. Most participants saw these caregivers as essential to perinatal care, assisting with pregnancy testing and education between visits. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.
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  Data: <searchLink fieldCode="AR" term="%22Smith%2C+Lauren+D%2E%22">Smith, Lauren D.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Valentine%2C+Anne%22">Valentine, Anne</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Moore+Simas%2C+Tiffany+A%2E%22">Moore Simas, Tiffany A.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Parish%2C+Susan+L%2E%22">Parish, Susan L.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Powell%2C+Robyn%22">Powell, Robyn</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hu%2C+Luanjiao%22">Hu, Luanjiao</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Mitra%2C+Monika%22">Mitra, Monika</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22">Journal of Applied Research in Intellectual Disabilities</searchLink>. Jan2026, Vol. 39 Issue 1, p1-11. 11p.
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  Data: <searchLink fieldCode="DE" term="%22Families+%26+psychology%22">Families & psychology</searchLink><br /><searchLink fieldCode="DE" term="%22Obstetricians%22">Obstetricians</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Focus+groups%22">Focus groups</searchLink><br /><searchLink fieldCode="DE" term="%22Perinatal+care%22">Perinatal care</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Statistical+sampling%22">Statistical sampling</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology+of+women%22">Psychology of women</searchLink><br /><searchLink fieldCode="DE" term="%22Physicians'+attitudes%22">Physicians' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Decision+making%22">Decision making</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Sound+recordings%22">Sound recordings</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Ethics%22">Ethics</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology+of+caregivers%22">Psychology of caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Comparative+studies%22">Comparative studies</searchLink><br /><searchLink fieldCode="DE" term="%22Guardian+%26+ward%22">Guardian & ward</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22United+States%22">United States</searchLink>
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  Label: Abstract
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  Data: 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. Lay Summary: Clinicians were often unaware of a patient's intellectual disability before the appointment and were unsure how to assess guardianship or decision‐making authority once the intellectual disability was identified.Clinicians often had concerns about a patient's ability to make independent decisions and might make assumptions about patient decision‐making capacity when processes were lacking. Sometimes clinicians made decisions for their patients with intellectual disability. In some cases, they deferred to caregivers, who might take charge even when their legal authority was uncertainClinicians faced tense situations, from minor care‐compliance issues like medication adherence to more significant concerns affecting a woman's health, autonomy, or reproductive rights. Disagreements between patients and caregivers created challenges, and some clinicians reported advocating for the patient's wishes over the caregiver's wishes.Clinicians recognized that women with intellectual disabilities often have a caregiver or support person present at appointments, playing a more involved role than support people for those without disabilities. Most participants saw these caregivers as essential to perinatal care, assisting with pregnancy testing and education between visits. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=191835093
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.70194
    Languages:
      – Code: eng
        Text: English
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      Pagination:
        PageCount: 11
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    Subjects:
      – SubjectFull: Families & psychology
        Type: general
      – SubjectFull: Obstetricians
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Focus groups
        Type: general
      – SubjectFull: Perinatal care
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Statistical sampling
        Type: general
      – SubjectFull: Psychology of women
        Type: general
      – SubjectFull: Physicians' attitudes
        Type: general
      – SubjectFull: Decision making
        Type: general
      – SubjectFull: Intellectual disabilities
        Type: general
      – SubjectFull: Sound recordings
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Ethics
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Comparative studies
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      – SubjectFull: Guardian & ward
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      – SubjectFull: United States
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      – TitleFull: Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.
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              Text: Jan2026
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              Y: 2026
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