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Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review.

  • Powell, R M1
  • Parish, S L2
  • Mitra, M1
  • Rosenthal, E3
  • 1 The Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts.
  • 2 The College of Health Professions, Virginia Commonwealth University, Richmond, Virginia.
  • 3 School Psychology, College of Education, Lehigh University Bethlehem, Pennsylvania.
Published Article
Journal of intellectual disability research : JIDR
Publication Date
Dec 05, 2019
DOI: 10.1111/jir.12706
PMID: 31808223


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. 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. 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. 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. © 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

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