Ensuring the reproductive rights of women with intellectual disability

Agaronnik, Nicole; Pendo, Elizabeth; Lagu, Tara; DeJong, Christene; Perez-Caraballo, Aixa; Iezzoni, Lisa I.

doi:10.3109/13668250.2020.1762383

Cited by 27 publications

(24 citation statements)

References 40 publications

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“…For example, recent research has emphasized the importance of training medical providers to support the reproductive rights of women with intellectual disability, an area that is also likely essential for autistic women. 92 Regarding parenting, training CPS workers holds great potential, given that CPS professionals consistently cite a desire for increased training in disabilities and that caregivers with intellectual disability are over-represented in the welfare system. 19,93 Authorship Confirmation Statement C.G.M.…”

Section: Research Recommendations and Future Directionsmentioning

confidence: 99%

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

McDonnell

DeLucia

2021

Autism in Adulthood

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Background: Strikingly little research has considered how autistic adults experience pregnancy and parenthood, two key transition periods in adult development with potentially far-reaching implications for physical and psychosocial health outcomes across the lifespan. This article reviews the research on pregnancy and parenthood among autistic adults, to summarize existing research and identify future directions to advance this critical area of study. Methods: We conducted a systematic review of the literature on pregnancy and parenthood among autistic adults. Researchers extracted selected articles for key information, including methodology and sample size, study location, demographic characteristics of participants, measurement approaches, and key study findings. Results: Overall, we identified 13 studies that used a range of quantitative and qualitative approaches to study pregnancy experiences and outcomes and parenthood among autistic adults. The findings show that autistic adults (1) experience difficulties and dissatisfaction communicating with health care providers throughout pregnancy and birth, (2) are more likely to experience depression during and after pregnancy, and (3) experience higher rates of pregnancy complications, including preterm birth, cesarean delivery, and pre-eclampsia. During parenthood, autistic adults report lower parenting competence, experience parenthood as isolating, have difficulty communicating with professionals about their child and are questioned by providers about their ability to parent, experience high rates of involvement with child protective services, and express a desire for increased parenting support. Autistic adults also reported parenting strengths, including high levels of finding parenthood rewarding and putting their children's needs ahead of their own. Conclusions: A key limitation of the literature is the significant lack of sociodemographic diversity among participants, the small number of existing studies, and reliance on cross-sectional mono-method designs. Future research should be conducted in partnership with autistic adults to develop assessment and intervention approaches for supporting pregnancy health and parental well-being among diverse and underserved communities.

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Section: Research Recommendations and Future Directionsmentioning

confidence: 99%

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

McDonnell

DeLucia

2021

Autism in Adulthood

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“…Increased prevalence of adverse outcomes, insufficient focus on health promotion, and lack of good health care services ( 4 ) are mostly reported in these groups ( 5 , 6 , 7 ). Although numerous laws are put in place to ensure the rights, especially the reproductive rights of IDW such as the right to equality, access to reproductive health, and the right to start a family ( 8 ), the implementation of these laws is scarce ( 9 , 10 , 11 ). Yet, other factors that prevent IDW from getting the care that they are entitled to include physical barriers for assessment, caregiver issues, access to health services, transportation difficulties, and a deficit in skilled providers ( 8 ).…”

Section: Introductionmentioning

confidence: 99%

Challenges in Providing Reproductive and Gynecologic Care to Women with Intellectual Disabilities: A Review of Existing Literature

Shrestha¹,

Ishak²,

Maskey³

et al. 2022

JFRH

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Objective: Our review aims to focus on identifying challenges faced by intellectually disabled women (IDW) in receiving gynecological and reproductive care and also highlights evidence based strategies to overcome those challenges. Materials and methods: We conducted a literature review discussing challenges faced by IDW in obtaining healthcare services by thorough search on various electronic databases (PubMed, Google Scholar, and Scopus) starting from 2000 to 28 August 2021 excluding all non-english articles, reviews, editorials and letters to editor. The keywords used for search were “reproductive care”, “gynecologic care”, “intellectual disability”, “mental handicap”, and "mental retardation". Results: The existing literature review showed that IDW have difficulty maintaining menstrual hygiene and lack knowledge regarding contraception use and sexual health resulting in violations of their reproductive rights. Sexually transmitted diseases and cervical cancer are common among IDW due to their vulnerability to sexual abuse. Nulliparity in IDW increases their suspectibility to even breast cancer. Moreover, they face problems with sexually transmitted infection (STI) and cancer screening due to physical barriers for assessment, low socio-economic status, physician-patient communication issues and deficit in skilled providers. Short acting sedatives such as ketamine or midazolam can be used to overcome challenges faced with gynecological and obstetric examination. Finally forced sterilization and institutionalization has been a habitual practice as menstrual hygiene and pregnancy in IDW raise concerns on psychosocial challenges along with associated obstetric complications. Conclusion: Reproductive and sexual health education including contraception use can be provided by using evidence based strategies involving use of pictures, animations and models by adequately trained healthcare providers including midwives. Further research involving IDW is needed to allow state-wise laws and policies to be created to mitigate the challenges and improve health outcomes in this population.

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“…Research [46] has also described gynecologists having di culties with shared decision making with patients with intellectual disability because of communication problems leading to physician led treatment decisions. Previous research ndings [42] also showed that not all gynecologists knew about human rights concerning sexual and reproductive health of women with intellectual disability concerning supporting and prescribing hormone depots and sterilization as routine practice [42].…”

Section: Discussionmentioning

confidence: 99%

“…The main motives were pregnancy prevention, menstrual suppression and the fear of pregnancy resulting from a sexual assault [16,41]. Current research indicates that gynecologists do not know about human rights concerning sexual and reproductive health of women with intellectual disability and that they support and prescribe hormone depots and sterilization as routine practice [42].…”

mentioning

confidence: 99%

“It Gives Me, as her Caregiver, a Sense of Security.” Young People with Intellectual Disability and their Experiences with Sexuality, Menstruation, Gynecological Treatment and Contraception: A Follow-up Analysis of Parents’ and Caregivers’ Perspectives

Retznik

Wienholz

Höltermann

et al. 2022

Preprint

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Background Research shows that caregivers support but also impede people with intellectual disabilities from developing intimate relationships. People with intellectual disability experience coital sex later and less often compared to adolescents without disabilities. Caregivers often request hormonal contraception from gynecologists on their behalf. Their main motives are pregnancy avoidance (either as a result of consensual sex or sexual abuse) and menstrual suppression. Method The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with qualitative content analysis. Results Nine of the main caregivers assumed that sexual intercourse had taken place. Half of the carers evaluated the importance of sexuality for the young people with intellectual disability as high. The main reason for seeing a gynecologist was the prescription of hormonal contraceptives; the outcome of which was arbitrary and dependent on the individual gynecologist. The majority of young women took general hormonal contraceptives as a preventive measure or due to heavy bleeding, regardless of sexual activity. One-fifth took hormone depots as a form of long-term contraception. Discussion A trusting relationship with the gynecologist favored the compliance and well-being of the young women. The administration of hormonal contraceptives seems to be controlled by third parties. Caregivers used hormonal contraceptives to simplify the regulation of menstruation and felt relieved by it. Carers view the sexual activities of the young women more critically because they fear a pregnancy and the responsibility for a potential grandchild. The use of hormonal contraceptives made carers clearly more tolerant of sexual activity.

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Ensuring the reproductive rights of women with intellectual disability

Cited by 27 publications

References 40 publications

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

Challenges in Providing Reproductive and Gynecologic Care to Women with Intellectual Disabilities: A Review of Existing Literature

“It Gives Me, as her Caregiver, a Sense of Security.” Young People with Intellectual Disability and their Experiences with Sexuality, Menstruation, Gynecological Treatment and Contraception: A Follow-up Analysis of Parents’ and Caregivers’ Perspectives

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