Reproductive and pregnancy health care for women with intellectual and developmental disabilities: A scoping review

Ransohoff, Jade I.; Kumar, Prisha Sujin; Flynn, David; Rubenstein, Eric

doi:10.1111/jar.12977

Cited by 12 publications

(3 citation statements)

References 59 publications

(80 reference statements)

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“…As participants underlined, the most illustrative example of this can be found in some of the discouraging comments made by their relatives, friends and, particularly, the staff from the health services. According to Starke (2022), trust is crucial for mothers to accept and receive support from professionals, and mistrust leads to greater isolation and less access to information and possible resources (Lightfoot et al, 2018; Ransohoff et al, 2022). The mothers' distrust towards professionals left them in a precarious situation which contributed to confirm the gutted impression of some professionals that these mothers with intellectual disabilities ‘are not capable of being good mothers’ (Mayes et al, 2006; Strnadová et al, 2016).…”

Section: Discussionmentioning

confidence: 99%

Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change

Rio‐Poncela,

Rojas‐Pernia

2023

Brit J Learn Disabil

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BackgroudDespite the advancements in the rights of persons with disabilities in Western countries, the motherhood of women with intellectual disabilities remains scarcely visible. The approval of the Convention on the Rights of Persons with Disabilities (2006) and its subsequent ratification by the Spanish Government (2008) recalls the obligation to fulfil the rights of persons with disabilities to found a family (art. 23) and to choose who they want to live with (art. 19). While the importance of this legislation is undeniable, the personal experiences of women with intellectual disabilities still demand effective changes.MethodsThis article reports the results of a study entitled Subjectivities and motherhood in women with intellectual disabilities. Reflections in dialogue through an inclusive research project. In this study, we delved into the stories of 13 women, aged between 24 and 72, to learn about their motherhood experiences (before, during and after making the decision of being mothers) and to identify the barriers and supports encountered. Methods for data collection included individual semi‐structured interviews, discussion groups and other narrative and visual resources (images and biograms).FindingsThis study explores in depth the obstacles identified by the participating mothers, which have been organised around six themes: (1) information and guidance on sexuality and family planning, (2) assistance of health services, (3) employment and housing situation, (4) child custody, (5) raising children, and (6) informal support. The participants encountered difficulties in all the above fields related to contextual factors. In other words, these barriers do not derive from individual issues centred on their disability, but from factors that often do not depend on mothers with intellectual disabilities, such as deprivation of socio‐educational opportunities.ConclusionsOur results show the nuanced ways in which these mothers were immersed in a social system that questions them as ‘good mothers’ and violates their rights. As we discussed, the participants' desires and decisions to engage and/or continue with motherhood constitute an exercise of resistance to this system.

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Section: Discussionmentioning

confidence: 99%

Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change

Rio‐Poncela,

Rojas‐Pernia

2023

Brit J Learn Disabil

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“…The Americans with Disability Act (ADA) defines disability as a “physical or mental impairment that substantially limits 1 or more major life activity.” Levels of difficulty functioning can range in severity and span across multiple domains, each requiring unique accommodations to ensure adequate access and provision of high-quality health care, including sexual and reproductive health (RH) services. People with disabilities are disproportionately more likely than those without disabilities to have poor health, more health care needs, and gynecological cancers yet are less likely to receive gynecological cancer screenings and timely and consistent prenatal care, although they are similarly likely to get pregnant . Although the ADA requires equal access to health care for people with disabilities, inequities persist .…”

Section: Introductionmentioning

confidence: 99%

“…People with disabilities are disproportionately more likely than those without disabilities to have poor health, more health care needs, and gynecological cancers yet are less likely to receive gynecological cancer screenings and timely and consistent prenatal care, although they are similarly likely to get pregnant. 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 Although the ADA requires equal access to health care for people with disabilities, inequities persist. 12 Understanding the barriers that prevent people with disabilities from accessing RH services is critical to identifying inequities and informing patient-centered approaches to services.…”

Section: Introductionmentioning

confidence: 99%

Access to Reproductive Health Services Among People With Disabilities

Biggs,

Schroeder,

Casebolt

et al. 2023

JAMA Netw Open

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ImportancePeople with disabilities face inequitable access to reproductive health (RH) services, yet the national prevalence of barriers to access experienced across disability types and statuses is unknown.ObjectiveTo assess the national prevalence of barriers to RH access experienced by people with disabilities.Design, Setting, and ParticipantsThis cross-sectional study analyzed results of an online probability-based national survey of RH experiences that was conducted from December 2021 to January 2022. The national sample consisted of English- and Spanish-speaking panel members of a market research firm. Panelists were invited to participate in a survey on their RH experiences and opinions. These participants were aged 15 to 49 years and assigned female at birth (AFAB). Weighted proportions were estimated, and bivariable and multivariable regression analyses were performed to assess associations between disability status and barriers to accessing RH services.ExposureUsing 5 of the 6 Washington Group Short Set on Functioning items, 8 dichotomous disability indicators were created: (1) vision, (2) hearing, (3) mobility, (4) activities of daily living, (5) communication, (6) overall disability status (a lot or more difficulty functioning in ≥1 domain), (7) some difficulty functioning (below the disability threshold; some or more difficulty functioning in ≥1 domain), and (8) multiple disabilities (a lot or more difficulty functioning in ≥2 domains).Main Outcomes and MeasuresNumber and types of barriers (logistical, access, cost, privacy, and interpersonal relationship) to accessing RH services in the past 3 years.ResultsAfter exclusion, the final sample included 6956 people AFAB, with a mean (SD) age of 36.0 (8.3) years. Of these participants, 8.5% (95% CI, 7.6%-9.5%) met the disability threshold. Participants with disabilities compared with those without disabilities were disproportionately more likely to be non-Hispanic Black (18.8% [95% CI, 14.4%-24.1%] vs 13.2% [95% CI, 11.9%-14.5%]) or Hispanic or Latinx (completed survey in English: 18.1% [95% CI, 14.0%-23.0%] vs 14.6% [95% CI, 13.3%-16.0%]; completed survey in Spanish: 8.9% [95% CI, 6.2%-12.8%] vs 6.2% [95% CI, 5.4%-7.1%]) individuals, to identify as LGBTQAI (lesbian, gay, bisexual, transgender, queer [or questioning], asexual [or allied], intersex; 16.4% [95% CI, 12.3%-21.6%] vs 11.8% [95% CI, 10.6%-13.1%]), to live below the federal poverty level (27.3% [95% CI, 22.3%-32.8%] vs 10.7% [95% CI, 9.7%-11.9%]), and to ever experienced medical mistreatment (49.6% [95% CI, 43.7%-55.5%] vs 36.5% [95% CI, 34.8%-38.2%]). Among those who had ever tried to access RH services (n = 6027), people with disabilities vs without disabilities were more likely to experience barriers (69.0% [95% CI, 62.9%-74.5%] vs 43.0% [95% CI, 41.2%-44.9%]), which were most often logistical (50.7%; 95% CI, 44.2%-57.2%) and access (49.9%; 95% CI, 43.4%-56.4%) barriers. The disability domains with the highest proportion of people who experienced 3 or more barriers in the past 3 years included activities of daily living (75.3%; 95% CI, 61.1%-85.6%), communication (65.1%; 95% CI, 49.5%-78.1%), and multiple (59.9%; 95% CI, 45.6%-72.7%) disabilities.Conclusions and RelevanceThis cross-sectional study found large disparities in access to RH services among people AFAB with disabilities. Findings indicated a need to alleviate barriers to RH care, including improving the transportation infrastructure and reinforcing patient-centered approaches that engender inclusivity in health care settings.

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Fertility rates in women with intellectual and developmental disabilities in Wisconsin Medicaid

Rubenstein¹,

Ehrenthal²,

Nobles³

et al. 2022

Disability and Health Journal

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Reproductive and pregnancy health care for women with intellectual and developmental disabilities: A scoping review

Cited by 12 publications

References 59 publications

Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change

Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change

Access to Reproductive Health Services Among People With Disabilities

Fertility rates in women with intellectual and developmental disabilities in Wisconsin Medicaid

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