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

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

doi:10.1111/jar.12977

. Author manuscript; available in PMC: 2023 Apr 21.

Published in final edited form as: J Appl Res Intellect Disabil. 2022 Jan 22;35(3):655–674. doi: 10.1111/jar.12977

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

Jade I Ransohoff ¹, Prisha Sujin Kumar ^1,², David Flynn ², Eric Rubenstein ¹

PMCID: PMC10119781 NIHMSID: NIHMS1851994 PMID: 35064736

Abstract

Background:

Women with intellectual and developmental disabilities face poorer reproductive and pregnancy outcomes partially due to health care inequity. Our objective was to conduct a scoping review of reproductive and pregnancy related health care among women with intellectual and developmental disabilities.

Methods:

We systematically reviewed three databases for keywords pertaining to pregnancy, reproductive health, and intellectual and developmental disabilities. Two reviewers screened abstracts and extracted full text. We synthesised included papers, identifying common themes.

Results:

Thirty-six papers met review criteria. Women with intellectual and developmental disabilities had lower fertility rates and were less likely to receive adequate sexual education compared to peers. While most women received prenatal care, uptake was lower and received later than women without intellectual and developmental disabilities.

Conclusions:

Pregnancy-related health care is often lacking for women with intellectual and developmental disabilities. There are gaps inhibiting our understanding which prevents action to reduce health disparities.

Keywords: family planning, fertility, intellectual and developmental disabilities, midwife, prenatal care

1 ∣. INTRODUCTION

There is a long, tragic history of sterilisation, sexual violence and human rights violations against individuals with intellectual and developmental disabilities. The eugenics movement of the late 19th century made common the practice of sterilising women with intellectual and developmental disabilities across the globe, with some countries still legally allowing forced sterilisation (Rowlands & Amy, 2019). A systematic review of studies from 1990 to 2020 found prevalence of sexual abuse in women with intellectual disability to be 31.8 per 100 women (Tomsa et al., 2021). The societal stigma of having an intellectual and developmental disability can be pervasive and often manifests as a lack of opportunity and support in starting families (Ditchman et al., 2016). The effects of these abhorrent practices still manifest in healthcare practices and societal perceptions today.

Intellectual and developmental disabilities are conditions that cause impairment in cognitive and adaptive functioning before the age of 18 years and include conditions such as autism, cerebral palsy, Down syndrome and fragile X syndrome (National Institute of Child Health and Human Development, 2016) and these conditions should not impact one's reproductive freedom. As of 2017, approximately 7.4 million people in the U.S. had an intellectual and developmental disabilities (Residential Information Systems Project, 2020; Zablotsky et al., 2015). As larger cohorts of young adults with intellectual and developmental disabilities age into their reproductive years, sexual and reproductive health will continue to be crucial area of study. Progress is being made, with a strong literature on sexuality and promoting healthy sexual relationships within the intellectual and developmental disability population (Chrastina & Večeřová, 2018; Holmes et al., 2014; Medina-Rico et al., 2017); yet less is known on pregnancy-related care and whether the increase in sexual-health promotion has effects for pregnancy. It is imperative to understand pregnancy experiences and outcomes as people with intellectual and developmental disabilities deserve the same reproductive and parenting rights and opportunities as peers.

Issues of pregnancy are particularly important because of the lifelong consequences of negative outcomes for parent and child. Women¹ with intellectual and developmental disabilities may be less likely to get pregnant (Brown et al., 2020). Once pregnant, women with intellectual and developmental disabilities are more likely to experience negative perinatal, delivery, and postpartum health outcomes, including gestational diabetes, hypertensive disorders of pregnancy, haemorrhage, emergency department visits, and caesarean section compared to peers (Tarasoff, Murtaza, et al., 2020). Additionally, newborns of women with intellectual and developmental disabilities are at increased risk of neonatal morbidity—including low birthweight, preterm birth, neonatal intensive care unit (NICU) admission and neonatal mortality (Rubenstein et al., 2020; Tarasoff, Ravindran, et al., 2020). The specific mechanisms that lead to increased risk of morbidity and mortality for women with intellectual and developmental disabilities and their newborns are less understood.

The study of sexual health and pregnancy among women with intellectual and developmental disability is a burgeoning field with reviews focusing on a variety of topics. Tarasoff, Murtaza, et al. (2020) and Tarasoff, Ravindran, et al. (2020) have examined maternal and infant pregnancy outcomes summarising the increased risk for a variety of pregnancy-related morbidity broadly among women with disabilities. In 2015, Homeyard et al. (2016) synthesised the literature on antenatal care for women with intellectual disability, highlighting the role of maternity care providers. Verlenden et al. (2019) evaluated the literature on contraception use for adolescents and adults with intellectual and developmental disability, finding contraception was underutilised among women with intellectual and developmental disability, and when used, was widely prescribed to manage menses and hormone dysregulation. While past reviews are useful, some are focused on just one area of reproductive health, examined just one intellectual and developmental disability subtype or disability more broadly, or need to be updated based on the influx of new papers on reproductive health and intellectual and developmental disability. Therefore, we conducted a scoping review to synthesise the existing state of practice and research for sexual and reproductive care surrounding pregnancy for women with intellectual and developmental disabilities. We were able to build off of themes from previous reviews while highlighting research gaps and areas needed for intervention and action.

2 ∣. METHODS

A scoping review is an approach to research synthesis that provides an overview of research in a particular area, focusing more on state of the research field rather than answering a specific scientific question (Sucharew, 2019). Because of the breadth of topics related to reproductive and sexual health, plus the emergence of this field, we elected to conduct a scoping review with systematic search methods. With a scoping review approach, we were able to examine the course of sexual health for women with intellectual and developmental disability, from sexual education to postnatal care, while exploring specific differences by intellectual and developmental disability type (e.g., autism and learning disability).

Our information sources included three major databases: PubMed, Embase and Web of Science. We used best practices endorsed by and documented in the Cochrane Handbook for Systematic Reviews for Interventions (Higgins et al., 2019), which included optimised search strategies for each database and using search terms carefully chosen to maximise sensitivity and precision. The databases were searched through December 2020. In addition, we conducted a hand search of known articles and articles cited by review articles.

Concepts used in the search were: doulas, midwives, birth attendants, pregnancy, prenatal care, antenatal care, fertility, fecundity, prenatal education, antenatal education and family planning services, to capture the reproductive lifespan of women. These were paired with the specific intellectual and developmental disabilities encompassed by the scope of this study such as cerebral palsy and autism spectrum disorder. Final searches used can be found in Supplement 1.

Our inclusion criteria were observational studies of reproductive health or pregnancy in women with intellectual and developmental disabilities. We did not exclude intervention studies but did exclude randomised clinical trials, since trial exclusion criteria may impart bias (Kahan et al., 2015). We excluded papers if they were not in English, they were published before 2000 (to describe the most up to date literature), the infant had intellectual and developmental disabilities rather than the mother, the study was after the post-partum period, or the study only assessed pregnancy outcomes rather than pregnancy care. Two researchers screened all titles and abstracts for relevance while a third resolved disagreements. If a study met entry criteria after abstract review, full texts were reviewed. If a study met entry criteria after full text review, two researchers independently extracted data on year, study design, key findings and limitations.

Our synthesis was guided by the methodological work on scoping reviews of Peters et al. (2015) and the inductive approach to exploratory data analysis (Goddard & Melville, 2001). After data collection, our study team met regularly to discuss key topics and identify patterns as they emerged over the course of the review. We developed our observations into themes, which we refined throughout the scoping review process. We quantitatively (number of papers) and qualitatively (strength of papers) assessed topics to identify key areas for presentation.

3 ∣. RESULTS

3.1 ∣. Study descriptions

We identified 5464 papers through our systematic search and 9 from a hand search. Ultimately, 36 manuscripts met criteria for our scoping review (Figure 1). Common reasons for exclusion were that the study focused on typically developing parents of children with intellectual and developmental disabilities, the study was focused on parenting rather than pregnancy, and intellectual and developmental disability was not differentiated from other disability. Studies varied in sample size (N = 4–21,181) with a variety of different methods, including registry-based analyses and qualitative studies. The list of conditions included in the definition of intellectual and developmental disabilities differed slightly across studies and we have highlighted when studies looked at a specific intellectual and developmental disabilities condition or used a different categorisation of intellectual and developmental disabilities conditions (e.g., ‘cognitive disability’).

Flow chart of study selection. Articles excluded if they were not in English, were published before 2000 (to describe the most up to date literature), the infant had intellectual and developmental disabilities rather than the mother, the study was after the post-partum period, or they only assessed pregnancy outcomes rather than pregnancy care

3.2 ∣. Identifying key areas

Upon examining the studies, we identified five key areas: fertility, family planning (including contraceptive use), prenatal care, use of midwives and doulas and post-delivery care. There have been previously published reviews on some of these topic areas (Homeyard et al., 2016; McCann et al., 2019; Verlenden et al., 2019). We evaluated the articles cited by these reviews and aimed to update their findings, expand to more areas of intellectual and developmental disabilities, and place findings within the context of wider intellectual and developmental disabilities pregnancy care research.

3.3 ∣. Fertility and fecundity

We identified three articles surrounding fertility and fecundity for women with intellectual and developmental disabilities (Table 1), with two being studies using Ontario health care system data. Fertility rates for women with intellectual and developmental disabilities were found to be lower than that of peers (Brown et al., 2019; Brown, Cobigo, et al., 2016; Brown, Lunsky, et al., 2016) with one potential mechanism being reduced fecundity (Birkebaek et al., 2002). Fertility rates comparing women with and without intellectual and developmental disabilities were more similar among younger age groups (18- to 24-years-old) (Brown et al., 2019; Brown, Cobigo, et al., 2016; Brown, Lunsky, et al., 2016). In the Ontario registry, intellectual and developmental disabilities was identified using International Classification of Disease codes, which can reliably identify intellectual and developmental disabilities, but may miss those with less severe presentation.

TABLE 1.

Details and summaries of published literature surrounding fertility and fecundity in women with intellectual and developmental disabilities

Author	Year	Country	Condition	Study design	Summary	Limitations/risk for bias
Birkebaek et al.	2002	Denmark	Turner Syndrome	Population-based cohort study N = 410 women of fertile age with Turner Syndrome from 1973–1993	Two women became pregnant after in vitro fertilisation and 31 (7.6%) achieved at least one spontaneous pregnancy Only women with 45,X/46,XX mosaicism or 46,XX and structural abnormality of the second X, had live births after spontaneous pregnancies	No information on phenotypes of women in population No information on clinical indication for karyotyping
Brown et al.	2016b	Canada	intellectual and developmental disabilities	Population-based retrospective cohort study N = 21,181 18- to 49-year-older women with intellectual and developmental disabilities in 2009 N = 990,776 18- to 49-year-old women without intellectual and developmental disabilities in 2009	The general fertility rate in women with intellectual and developmental disabilities was lower than that in women without intellectual and developmental disabilities (20.3 vs. 43.4 live births per 1000) (RR = 0.47) The age-specific fertility rates (ASFRs) peaked earlier in women with intellectual and developmental disabilities (18- to 24-years-old; 42.3 live births per 1000) compared to women without intellectual and developmental disabilities ASFRs among women aged 18- to 24-years-old were similar in both groups	Results only generalizable to Ontario health care system Study did not include those without ICD-9 codes for intellectual and developmental disabilities, likely missing those with less severe presentation and those who do not have access to the health care system
Brown et al.	2019	Canada	intellectual and developmental disabilities	Population-based cohort study N = 3932 live and stillbirths among women with intellectual and developmental disabilities aged 18–49 years from 2002 to 2012	Overall fertility rate was lower among women with intellectual and developmental disabilities than among those without intellectual and developmental disabilities (20.3 vs. 43.4 live births per 1000 women) Fertility rates were similar among younger women with and without intellectual and developmental disabilities (34.1 vs. 38.3 live births per 1000) 0.3% of live births in 2017 in Ontario, Canada were to women with intellectual and developmental disabilities	Results only generalizable to Ontario health care system Study did not include those without ICD codes for intellectual and developmental disabilities, likely missing those with less severe presentation and those who do not have access to the health care system

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Note: Search limited to papers written in English post 2000, excluding case reports.

Abbreviations: ICD, International Classification of Disease, intellectual and developmental disabilities, Intellectual and developmental disability; RR, risk ratio.

3.4 ∣. Sexual education, contraceptive use and pregnancy timing

Ten studies focused on family planning, which encompassed sexual education, contraceptive use, and timing and desire for pregnancy (Table 2). These studies were conducted in a wide range of settings, with many focusing on intellectual disability or learning disability. Studies found that women with intellectual and developmental disabilities were less likely to receive adequate sexual education compared to peers (Conder et al., 2011; Höglund & Larsson, 2013) and when they did receive sexual education, it was more focused on hygiene and menstruation rather than reproduction (Frawley & Wilson, 2016) with little information about contraception (Conder et al., 2011; Höglund & Larsson, 2013).

TABLE 2.

Details and summaries of published literature surrounding family planning in women with intellectual and developmental disabilities

Author	Year	Country	Condition	Study design	Summary	Limitations/risk for bias
Brown et al.	2018	Canada	Intellectual and developmental disabilities	Population-based cohort study N = 2855 18- to 64-year-old women with intellectual and developmental disabilities from 2002 to 2013 N = 923,367 18- to 64-year-old women without intellectual and developmental disabilities from 2002 to 2013	Women with intellectual and developmental disabilities had a higher rate of rapid repeat pregnancy than those without intellectual and developmental disabilities (7.6% vs. 3.9%; aRR = 1.34) This risk was attenuated upon further adjustment for social, health and health care disparities (aRR = 1.00)	Results only generalizable to Ontario health care system Study did not include those without ICD-9 codes for intellectual and developmental disabilities, likely missing those with less severe presentation and those who do not have access to the health care system No data on conception date for loss of pregnancy No data on living situation, marital status, sexual abuse, reproductive knowledge, breastfeeding and other factors that can affect fertility
Conder et al.	2010	New Zealand	Learning disability	Three-year qualitative research study N = 19 parents with a learning disability	Parents with learning disability have mixed knowledge about family planning and formal education about sex and sexuality through school or intellectual disability services provided little information All but one of the parents knew about and had used contraception to prevent pregnancy in the past Only one of the couple's stopped contraception with the intention of becoming parents. For the others, their pregnancy was not expected Most used contraceptives were oral contraceptives	Small sample size Potential self-selection bias
Crabb et al.	2020	USA	Intellectual and developmental disabilities	Cross-sectional survey N = 135 women with intellectual and developmental disabilities who were of reproductive years, had seen a primary care physician within the last year, and received public health insurance in a Midwestern state from 2014 to 2015	Women with intellectual and developmental disabilities were less likely to talk to their primary care provider about birth control compared to women without disabilities (OR = 0.50)	Conducted in one Midwestern state and may not be generalizable to other states Method of survey collection may have excluded those who did not use a phone Self reported data
Frawley and Wilson	2016	Australia	Intellectual disability	Qualitative research study consisting of focus group interviews N = 11 young women with intellectual disability	All participants were using contraceptive implants for pain relief and period management. For most, the decision about contraception was made by others Young women with intellectual disability reported that their sexual health education focused on hygiene and menstruation Participants were taught how to say ‘no’ to sex, but did not learn about the pleasure of sex or sex and relationships being positive experience Participants did not consider sexuality education that was provided at school to be very useful	Small sample size Results may only be generalizable to individuals with intellectual disability who are part of a transition program in Australia
Höglund and Larsson	2013	Sweden	Intellectual disability	Qualitative interviews and data analysis N = 10 women with intellectual disability aged 21–41 years who had given birth between 2004 and 2010	Several women reported that they had little or no knowledge about pregnancy and delivery Knowledge about family planning came from the women's' mothers, other people in the environment, and school	The interviewer was an experienced midwife who could have made participants more or less comfortable to discuss their pregnancy and delivery, based on previous experiences with midwives Small sample size
Höglund and Larsson	2019	Sweden	Intellectual disability	Qualitative research study consisting of five focus group interviews N = 19 nurse-midwives from five different antenatal/family planning clinics who reported on their experiences with women with intellectual disability	Women with intellectual disability had various reasons for contraceptive use (preventing pregnancy, avoiding menstrual bleeding and pain, hygiene) When they visited a midwife, women with intellectual disability often had limited or no knowledge about their body and existing contraceptive methods Midwives did not always explain every contraceptive method to women with intellectual disability, which contrasted with counselling women without intellectual disability	Data is second-hand information about women with intellectual disability Potential for self-report bias from midwives
Horner-Johnson et al.	2020	USA	Cognitive disability	Cross-sectional data analysis N = 489 women with cognitive disabilities with pregnancies from 2011 to 2015 N = 2344 women with no disability who reported pregnancies from 2011–2015	Approximately 56.0% of pregnancies were unintended (mistimed or unwanted) among women with cognitive disabilities, (aOR = 1.54) compared to women without disabilities (36.0% unintended)	No data collected on duration of the disability or timing of disability onset in relation to when pregnancy occurred Cognitive disabilities may include non-intellectual and developmental disabilities
Malouf et al.	2017a	UK	Learning disability	Cross-sectional study of 2015 retrospective self-reported national survey N = 127 women with a learning disability who had given birth 3 months previously N = 18,136 women with no disability who had given birth 3 months previously	Postnatal advice about contraception was significantly less available to women with a learning disability (85.5%) compared to women without disabilities (92.0%) (aOR = 0.56)	Data included participants with a ‘learning disability only’, and considers ‘multiple disabilities’ to be a separate category Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate Gaining access to participants was difficult and family acted as gatekeepers
Mosher et al.	2018	USA	Cognitive Disability	Population-based cohort study N = 575 women aged 15–44 without a cognitive disability who were at risk of unintended pregnancy N = 6061 women aged 15–44 without a disability who were at risk of unintended pregnancy	Nonuse of contraception is higher among women with cognitive disabilities than women with no disabilities (16.9% vs. 9.5%) Women aged 15–24 with cognitive disabilities are nearly twice as likely to be nonusers of contraception than women without disabilities (20.4% vs. 10.6%)	Lack of questions directly measuring disability severity Cognitive disabilities may include individuals without intellectual and developmental disabilities (e.g., traumatic brain injury) Excluded participants with cognitive disability and other disabilities
Redshaw et al.	2013	UK	Learning disability	Cross-sectional study and secondary analysis of 2010 retrospective self-reported national survey N = 120 women with a learning disability only who had given birth 3 months previously N = 22,673 women with no disability who had given birth 3 months previously	Availability of postnatal contraceptive advice not significantly different among women with a learning disability (95.7%) compared to women without disabilities (92.2%)	Data included participants with a ‘learning disability only’, and considers ‘women with more than one type of disability’ to be a separate category, limiting the data Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate

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Note: Search limited to papers written in English post 2000, excluding case reports.

Abbreviations: aOR, adjusted odds ratio; aRR, adjusted risk ratio; ICD, International Classification of Disease; OR, odds ratio.

3.5 ∣. Prenatal care

There were 17 studies that examined prenatal care for women with intellectual and developmental disabilities (Table 3). While a high percentage of women with intellectual and developmental disabilities received prenatal care (Höglund et al., 2012; Pohl et al., 2020; Rubenstein et al., 2020), uptake of prenatal care was significantly lower and received later than women without intellectual and developmental disabilities (Horner-Johnson, 2019; Malouf, Henderson, et al., 2017; Mitra et al., 2015; Mueller et al., 2019; Redshaw et al., 2013). While less likely to have regular prenatal visits (Horner-Johnson, 2019), women with intellectual and developmental disabilities were more likely to have emergency department visits during pregnancy compared to peers (Mitra et al., 2018). Studies found that specific adaptations may be needed to ensure women receive adequate care, as many reported a lack of satisfactions with current care (Höglund et al., 2013; Homeyard & Patelarou, 2018; Malouf, Henderson, et al., 2017; Malouf, McLeish, et al., 2017; Pohl et al., 2020; Redshaw et al., 2013).

TABLE 3.

Details and summaries of published literature surrounding prenatal care in women with intellectual and developmental disabilities

Author	Year	Country	Condition	Study design	Summary	Limitations/risk for bias
Brown et al.	2016a	Canada	Intellectual and developmental disabilities	Population-based retrospective cohort study N = 1852 singleton deliveries to women with intellectual and developmental disabilities in 2002–2012 N = 2080 singleton deliveries to women intellectual and developmental disabilities and a comorbid mental illness (‘dual diagnosis’) in 2002–2012	52.9% of women with intellectual and developmental disabilities had a mental illness and 9.5% of had a major mental illness Women with dual diagnosis were more likely than women with intellectual and developmental disabilities only to begin prenatal care before the fourth month of pregnancy and to receive 110% or more of recommended prenatal care visits (54.6% vs. 36.1%) Women with dual diagnosis were more likely than women with intellectual and developmental disabilities only to have prenatal care shared by a family physician and obstetrician (48.6% vs. 38.9%)	Results only generalizable to Ontario health care system Study did not include those without ICD-9 codes for intellectual and developmental disabilities, likely missing those with less severe presentation and those who do not have access to the health care system
Gardner et al.	2016	USA	Asperger Syndrome	Cross-sectional qualitative questionnaire and secondary analysis N = 8 women with Asperger syndrome	Women with Asperger syndrome reportedly sought prenatal care between 6 and 12 weeks Some women with Asperger syndrome did not disclose their diagnosis to healthcare providers; some felt that the providers did not understand their needs Women with Asperger syndrome reported needing information to be stated plainly and needing direct responses to their questions	Small sample size Data analysis was based on an existing data set Two of the women in the study were self-diagnosed rather than diagnosed by a clinician Retrospective self-reported data
Höglund and Larsson	2013	Sweden	Intellectual disability	Qualitative interviews and data analysis N = 10 women with intellectual disability aged 21–41 years who had given birth between 2004 and 2010	Family and health professionals restricted and sometimes even violated women with intellectual disability's autonomy in decision-making about themselves and their unborn child Some women refrained from disclosing their intellectual disability diagnosis because they were anxious that they would receive less support from healthcare providers if they revealed their diagnosis Parent education was considered important but not adequately tailored to women's needs	Lack of familiarity with context of participants' pregnancies The interviewer was an experienced midwife who could have made participants more or less comfortable to discuss their pregnancy and delivery, based on previous experiences with midwives
Höglund and Larsson	2014	Sweden	Intellectual disability	Qualitative interviews N = 10 women with intellectual disability aged 21–41 years who had given birth between 2004 and 2010	Women with intellectual disability expressed a need for structured, adapted, and repeated information (e.g., easy to read brochures) Women with intellectual disability were mostly satisfied with the professional care and support during pregnancy (e.g., continuity of care, competence; experience, professional approach and working methods of midwives) Women with intellectual disability experienced dissatisfaction and confusion when their questions were left unanswered or when their special needs were not taken into consideration	The interviewer was an experienced midwife who could have made participants more or less comfortable to discuss their pregnancy and delivery, based on previous experiences with midwives Small sample size
Höglund et al.	2012	Sweden	Intellectual disability	Population-based register study N = 326 women with intellectual and developmental disabilities who gave birth in 1999–2007	88.7% of women with intellectual disability had attended antenatal care services	Lack of systematic documentation of variables No education level on documents
Höglund et al.	2013	Sweden	Intellectual disability	Population-based cross-sectional study N = 375 female midwives working at antenatal care and labour wards	98.7% of midwives reported that caring for women with intellectual disability in pregnancy and childbirth differed from caring for women without intellectual disability The midwives reported that most women with intellectual disability followed either the basic care program (50.0%), and/or in accordance with a local program and/or with an early visit to a clinician (45.6%), and/or at a specialised antenatal care unit (6.3%) 47.8% of midwives had never received education about pregnancy and childbirth of women with intellectual disability	No previously validated instrument Data is second-hand information about women with intellectual disability Fairly low response rate (62.5%)
Homeyard and Patelarou	2018	England	Intellectual disability	Cross-sectional survey N = 74 contact supervisors of midwives from acute trust hospitals with maternity services in 2014	Less than half of supervisors reported that extra time was offered at the booking (39.1%) or routine antenatal appointments (40.5%) of women with intellectual disability Less than a quarter of supervisors (22.9%) reported that their trust had routine antenatal written information available in accessible formats (such as easy-read) for women with intellectual disability	Data is second-hand information about women with intellectual disability No opportunity to explore context of care No opportunity to rationalise provision of accessible information
Horner-Johnsen et al.	2019b	USA	Intellectual and developmental disabilities	Retrospective cohort study N = 1670 births to women with intellectual and developmental disabilities between 2000 and 2012 N = 31,713 births to women with non-intellectual and developmental disabilities disabilities between 2000 and 2012 N = 6,419,629 births to women with no disabilities between 2000 and 2012	Women with intellectual and developmental disabilities were significantly more likely to delay prenatal care initiation until the second or third trimester (19.8%) compared to women with other disabilities (aRR = 1.21) Women with intellectual and developmental disabilities had a significantly greater risk of receiving fewer prenatal care visits than recommended compared with women without disabilities (aRR = 1.08) Women with intellectual and developmental disabilities had a significantly greater risk of receiving more than the typical number of prenatal care visits compared with women without disabilities (aRR = 1.23)	Women with intellectual and developmental disabilities could only be diagnosed based off diagnosis codes Diagnosis codes only include codes from perinatal period and could have missed important diagnoses Dataset precluded women who had mental health diagnoses in medical histories if they were not reflected in hospital discharge record No information about quality of prenatal care provided
Lum et al.	2014	Australia	Autism	Cross-sectional exploratory survey N = 32 autistic women ≥18 years N = 26 women ≥18 years without autism	Women with autism received significantly less information and support during pregnancy compared to women without autism (on average, women with autism reported the amount of information and support they received as 4.0 out of 10.0, while women without autism reported it as 6.3 out of 10.0)	Self-reported data Small convenience sample Exploratory questionnaire
Malouf et al.	2017a	UK	Learning disability	Cross-sectional study and secondary analysis of 2015 retrospective self-reported national survey N = 127 women with a learning disability only who had given birth 3 months previously N = 18,136 women with no disability who had given birth 3 months previously	Women with a learning disability were significantly less likely to first see a healthcare professional by 12 weeks' gestation (92.3%) compared to women without a disability (96.1%) (aOR = 0.45) Women with a learning disability were significantly less likely to be involved in decisions about their care (61.3%) compared to women without disabilities (78.3%) (aOR = 0.45) Women with a learning disability, as compared to women without a disability, were less likely to report that they could understand information delivered orally (68.8% vs. 89.5%; aOR = 0.31) and less likely to report that midwives always listened to them (69.0% vs. 80.7%; aOR = 0.57)	Data included participants with a ‘learning disability only’, and considers ‘multiple disabilities’ to be a separate category Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate Gaining access to participants was difficult and family acted as gatekeepers
Malouf et al.	2017b	UK	Learning disability	Qualitative interviews and data analysis N = 9 women with a learning disability who were pregnant or had given birth in the last 3 years	Most women with a learning disability enjoyed some or all their antenatal care (e.g., supportive maternity staff, continuity of care, ability to make choices Women with a learning disability were upset that they were treated differently than “normal parents,” Women with a learning disability reported negative experiences related to autonomy and staff attitudes (e.g., being left out of decision-making, being discriminated against, instances of miscommunication and others expecting them to fail as parents) Three women stated that they were able to understand the “normal” information they were given, two had been given “easy read” information designed for parents with learning disability, two had to ask friends and family to help them understand information and two women were not given any information at all Some mothers with learning disability attended antenatal classes and found them helpful, while another three mothers had been interested in attending antenatal classes	Difficult to gain access to this group of participants and support organisations and family acted as gatekeepers Participants with children who had been removed may have felt reluctant to share maternal experiences Unequal geographical distribution of participants
Mitra et al.	2015	USA	Intellectual and developmental disabilities	Population-based cohort study N = 703 deliveries to women with intellectual and developmental disabilities between 1998 and 2009 N = 865,369 deliveries to women without intellectual and developmental disabilities or diabetes between 1998 and 2009	Women with intellectual and developmental disabilities were more likely to enter prenatal care after the first trimester (30.4%) compared to women without intellectual and developmental disabilities (16.6%) Inadequate prenatal care utilisation was higher among deliveries to women with intellectual and developmental disabilities compared to the reference group (18.7% vs. 8.8%) Intensive prenatal care utilisation was higher among deliveries to women with intellectual and developmental disabilities compared to the reference group (44.3% vs. 37.5%)	Data is derived from birth certificate and discharge records ICD-9 codes may have not recorded all women with intellectual and developmental disabilities
Mitra et al.	2018	USA	Intellectual and developmental disabilities	Population-based retrospective cohort study N = 498 women with intellectual and developmental disabilities who had their first delivery in 2003–2009 N = 1531 women without intellectual and developmental disabilities who had their first delivery in 2003–2009	54.8% of women with intellectual and developmental disabilities had at least one emergency department visit during pregnancy, compared to 23.0% of women without intellectual and developmental disabilities Women with intellectual and developmental disabilities, compared to women without intellectual and developmental disabilities, were significantly more likely to have an antenatal hospitalisation, including emergency department visit (56% vs. 29%; OR = 3.2), an observational stay (31% vs. 17%) and a non-delivery hospital stay (18% vs. 4%) Mental illnesses were common conditions associated with antenatal emergency department visits for women with intellectual and developmental disabilities The median length of non-delivery hospital stay was longer for women with intellectual and developmental disabilities (3.5 days) compared to women without intellectual and developmental disabilities (2.0 days) Women with intellectual and developmental disabilities were more likely to have inadequate prenatal care utilisation	ICD-9 codes may not be entered into record and some women with intellectual and developmental disabilities could be unrecorded No inclusion of spontaneous first trimester or elective abortions No examination of pre-pregnancy emergency department visits and hospitalisations
Mueller et al.	2019	USA	Intellectual disability	Retrospective cohort study N = 103 women ≥18 years with intellectual disability who had singleton live births from 1987 to 2012 N = 1034 women ≥18 years without intellectual disability who had singleton live births from 1987 to 2012	Women with intellectual disability were more likely to have inadequate prenatal care (31.0%) relative to the reference group (12.3%) (RR = 2.48)	Small sample size limited analyses of several variables Only included ICD-9 codes from perinatal period Use of ICD-9 codes may miss those with less health care use or less severe intellectual disability No information about the severity and range of disability a woman can experience Study period encompassed several decades
Pohl et al.	2020	Multiple	Autism	Qualitative research study through online surveys N = 355 mothers with autism with at least one autistic child N = 132 mothers without autism with at least one autistic child	Mothers with autism were significantly more likely to report feeling that birth had not been adequately explained to them, in comparison with mothers without autism (34.1% vs. 16.7%) There was no significant difference between mothers with and without autism in antenatal class attendance (67.3% vs. 72.0%)	Sample without autism may not be representative of entire population Only mothers who were literate and had access to computers could participate Mothers were recalling events from years prior which may lead to recall bias
Redshaw et al.	2013	UK	Learning disability	Cross-sectional study and secondary analysis of 2010 retrospective self-reported national survey N = 120 women with a learning disability only who had given birth 3 months previously N = 22,673 women with no disability who had given birth 3 months previously	Women with learning disability were significantly less likely to see a health professional by 12 weeks' gestation (84.7%) compared to non-disabled women (95.3%) (aOR = 3.29) Women with learning disabilities were no more likely than non-disabled women to have higher numbers of antenatal checks, scans, or screenings There was no significant difference between mothers with and without learning disabilities in antenatal class attendance (56.5% vs. 62.4%) Women with a learning disability were significantly less likely than women with no disability to feel as if they were always involved enough in prenatal care (62.4% vs. 74.4%; aOR = 0.67), were always spoken to in a way they could understand (65.5% vs. 83.8%; aOR = 0.42), and they always received help when they contacted a midwife (57.9% vs. 72.8%; 0.63) 93% of women with a learning disability rated antenatal care as good or better	Data included participants with a “learning disability only,” and considers “women with more than one type of disability” to be a separate category, limiting the data Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate
Rubenstein et al.	2020	USA	Intellectual and developmental disabilities	Secondary analysis of longitudinal cohort data N = 1757 deliveries to women with intellectual and developmental disabilities from 2007 to 2016 N = 254,957 Medicaid covered deliveries to women without intellectual and developmental disabilities from 2007 to 2016	There were no differences in timing of prenatal care comparing women with and without intellectual and developmental disabilities; however, women with intellectual and developmental disabilities were significantly more likely to never receive prenatal care (1.6% vs. 0.8%; RR = 1.83) Women with intellectual and developmental disabilities were less likely to receive first trimester prenatal care compared to women without intellectual and developmental disabilities. There were no differences comparing autism spectrum disorder, cerebral palsy, or genetic conditions to women without intellectual and developmental disabilities	Reliance on birth outcome records can lead to an underestimation of morbidity Medicaid data are limited to low-income participants Results may not be generalizable outside of the Wisconsin Medicaid system

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Abbreviations: aOR: adjusted odds ratio; aRR: adjusted risk ratio; ICD: International Classification of Disease; OR: odds ratio; RR: risk ratio.

3.6 ∣. Midwife and doula care

In examining midwife and doula care, we found six papers that met our eligibility criteria (Table 4). Studies found that midwives adapted their care to meet needs of women with intellectual and developmental disabilities (Höglund & Larsson, 2015; Höglund & Larsson, 2019; McGarry et al., 2015), suggesting that midwife/doula care may be an important tool to improve care for women with intellectual and developmental disabilities. However, many midwives/doulas do not receive training in caring for women with intellectual and developmental disabilities (Höglund & Larsson, 2013; Höglund & Larsson, 2019; Homeyard & Patelarou, 2018; McGarry et al., 2015).

TABLE 4.

Details and summaries of published literature surrounding midwives and doulas for women with intellectual and developmental disabilities

Author	Year	Country	Condition	Study design	Summary	Limitations/risk for bias
Höglund and Larsson	2015	Sweden	Intellectual disability	Population-based cross-sectional study N = 375 midwives at antenatal clinics and delivery wards	Many midwives reported that individually tailored, clear and repeated information was important for women with intellectual disability Showing pictures or models and using role-play facilitated education Extra time during appointments could be needed for women with intellectual disability Many midwives tried to minimise length of interventions for women with intellectual disability Midwives emphasised their own role as an important, continuous, support person order to ensure that appropriate care, mutual trust, and an environment of safety was provided to each individual woman	Second-hand information about women with intellectual disability Fairly low response rate and internal response loss No information on non-responders Potential for self-report bias
Höglund and Larsson	2019	Sweden	Intellectual disability	Qualitative research study consisting of five focus group interviews N = 19 nurse-midwives from five different antenatal/family planning clinics who reported on their experiences with women with intellectual disability	Midwives had limited experience and competence in providing contraceptive counselling to women with intellectual disability There are no national guidelines for contraceptive counselling among women with intellectual disability intellectual disability, so midwives adapted their counselling to women's ability and needs Midwives extended the appointment time for women with intellectual disability to ensure that the women received optimal information and support Midwives used clear, simple words and questions, repetition, short sentences, pictures, models, and easy to read brochures when counselling women with intellectual disability	Potential for self-report bias
Höglund et al.	2013	Sweden	Intellectual disability	Population-based cross-sectional study N = 375 female midwives working at antenatal care and labour wards	98.7% of midwives reported that caring for women with intellectual disability in pregnancy and childbirth differed from caring for women without intellectual disability A 47.3% of midwives had not received education about pregnancy and delivery of women with intellectual disability however 32.3% of midwives had good knowledge related to women with intellectual disability, with 18.0% saying they had learned it on their own initiative Most midwives (72.0%) stated that they did not have adequate knowledge regarding the needs of women with intellectual disability intellectual disability and most midwives (95.4%) requested evidence-based knowledge of women with intellectual disability in relation to childbirth	No previously validated instrument Fairly low response rate (62.5%)
Höglund et al.	2014	Sweden	Intellectual disability	Qualitative interviews and data analysis N = 10 women with intellectual disability aged 21–41 years who had given birth between 2004 and 2010	Women with intellectual disability generally trusted the midwife when they were treated kindly Women with intellectual disability expressed a need for structured, adapted, and repeated information (including easy to read brochures) from the midwives Women with intellectual disability shared positive and negative feelings about and experiences with midwives Women with intellectual disability felt that midwives were the best counsellors and could be easily contacted	The interviewer being an experienced midwife may have impacted a woman's comfort level when discussing pregnancy and delivery Small sample size
Homeyard and Patelarou	2018	England	Intellectual disability	Cross-sectional survey N = 74 contact supervisors of midwives from acute trust hospital with maternity services in 2014	Less than half of supervisors reported that extra time was offered at the booking (39.1%) or routine antenatal appointments (40.5%) of women with intellectual disability Few hospitals (22.9%) had a specialist or lead midwife in post for pregnant women with intellectual disability (22.9%) Over half of supervisors (52.7%) reported that their hospital had a specialist learning disability nurse in post Only 28.3% of supervisors reported availability of post registration training and even fewer (10.8%) had access to written protocols for women with intellectual disability	No opportunity to explore context of care No opportunity to rationalise provision of accessible information
McGarry et al.	2016	UK	Intellectual and developmental disabilities	Qualitative research study with individual interviews N = 4 women with intellectual and developmental disabilities who received doula support N = 3 doulas who supported women with an intellectual and developmental disabilities	Women with intellectual and developmental disabilities considered the doula to be a reliable source of information and support throughout their prenatal care Each mother perceived doula support as a means of keeping her child in her care Women with intellectual and developmental disabilities found the presence of a doula during labour reassuring and supportive Postnatally, women with intellectual and developmental disabilities described a trusting relationship with their doula, who enabled them to make informed choices The doulas reported a need to adapt their resources (or develop new resources) to support decision-making among women with intellectual and developmental disabilities	Small sample size Only two out of four women with intellectual and developmental disabilities gave both pre- and post-birth interviews

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3.7 ∣. Post-delivery care

We identified five papers focused on post-delivery care (Table 5). Two papers focused on intellectual disability, two focused on learning disability and one on intellectual and developmental disabilities. Women with learning disability (Malouf, McLeish, et al., 2017), women with intellectual disability (Mueller et al., 2019), and Black women with intellectual and developmental disabilities (Akobirshoev et al., 2018) had longer hospital stays after birth compared to women without intellectual disability and white women with intellectual and developmental disabilities, respectively, although one paper found no significant difference between groups (Redshaw et al., 2013).

TABLE 5.

Details and summaries of published literature surrounding post-delivery care in women with intellectual and developmental disabilities

Author	Year	Country	Condition	Study design	Summary	Limitations/risk for bias
Akobirshoev et al.	2019	USA	Intellectual and developmental disabilities	Cross-sectional study N = 2110 delivery-associated hospitalisations among women with intellectual and developmental disabilities	Non-Hispanic Black women with intellectual and developmental disabilities were significantly more likely to have a longer hospital stay compared with their white counterparts (4.6 vs. 3.3 days) Non-Hispanic Black women were significantly more likely to have a greater number of diagnoses compared with their white counterparts (8.5 vs. 7.7 diagnoses) The average labour and delivery-related cost for non-Hispanic Black and Hispanic women with intellectual and developmental disabilities exceeded those for non-Hispanic white women with intellectual and developmental disabilities by 26.9% and 51.0%, respectively	Some women with intellectual and developmental disabilities who gave birth are not coded as having intellectual and developmental disabilities Twenty percent of race/ethnicity variables were missing No account of hospital or community-level characteristics Causality cannot be determined due to cross-sectional nature of data Multiple delivery hospitalisations are not recorded
Höglund et al.	2012	Sweden	Intellectual disability	Population-based register study N = 326 women with intellectual and developmental disabilities who gave birth in 1999–2007 N = 340,624 first-time mothers without intellectual and developmental disabilities who gave birth in 1999–2007	Women with intellectual disability were more likely to be discharged from the maternity ward directly to another care facility, rather than their homes (6.5%), compared to women without intellectual disability (2.4%) (RR = 2.8)	Lack of systematic documentation of some variables No data regarding the severity of intellectual disability
Malouf et al.	2017a	UK	Learning disability	Cross-sectional study and secondary analysis of 2015 retrospective self-reported national survey N = 127 women with a learning disability only who had given birth 3 months previously N = 18,136 women with no disability who had given birth 3 months previously	Women with learning disability were significantly more likely to stay in the hospital >2 days after giving birth (38.0%) compared to non-disabled women (25.6%) (aOR = 1.51) Women with a learning disability were less likely to be treated with kindness and understanding post-delivery in the hospital (61.7%) compared to women without disabilities (71.1%) (aOR = 0.64)	Data included participants with a “learning disability only,” and considers “multiple disabilities” to be a separate category, limiting the data Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate Gaining access to participants was difficult and family acted as gatekeepers Participants with children felt reluctant to share maternal experiences
Mueller et al.	2019	USA	Intellectual disability	Retrospective cohort study N = 103 women ≥18 years with intellectual disability who had singleton live birth deliveries from 1987 to 2012 N = 1034 women ≥18 years without intellectual disability who had singleton live birth deliveries from 1987 to 2012	Women with intellectual disability were significantly more likely to have delivery hospitalisations of >3 days (43.7%), relative to comparison women (26.7%) (RR = 1.27), additionally adjusted for delivery method	Small numbers limited analyses of several variables Only included ICD-9 codes from perinatal period Use of ICD9 codes may miss those with less health care use or less severe intellectual disability No information about the severity and range of disability a woman can experience Study period encompassed several decades
Redshaw et al.	2013	UK	Learning disability	Cross-sectional study and secondary analysis of 2010 retrospective self-reported national survey N = 120 women with a learning disability only who had given birth 3 months previously N = 22,673 women with no disability who had given birth 3 months previously	Women with a learning disability were no more likely than the nondisabled group to have stayed 3 days or more in the hospital postnatally (30.6% vs. 28.6%) 88.3% of women with a learning disability rated their postnatal care as good or better	Data included participants with a ‘learning disability only’, and considers ‘women with more than one type of disability’ to be a separate category, limiting the data Data was self-reported, collected retrospectively at 3 months postpartum Low survey response rate

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Abbreviations: aOR: adjusted odds ratio; RR: risk ratio.

4 ∣. DISCUSSION

The objective of our scoping review was to synthesise the existing state of practice and research for sexual and reproductive care surrounding pregnancy for women with intellectual and developmental disabilities. While previous research has focused on reporting negative pregnancy outcomes among this population, we aimed to characterise the existing literature surrounding the emergent area of health care research. Through scoping review methodology, we were able to discern current gaps in the literature and identify potential areas for intervention regarding the reproductive care provided to women with intellectual and developmental disabilities. We found that women with intellectual and developmental disabilities had lower fertility rates, were less likely to receive adequate sexual education, were less likely to receive prenatal care and accessed it later into their pregnancy than women without intellectual and developmental disabilities. We also found that midwife and/or doula care may lend itself to the improvement of reproductive health care for women with intellectual and developmental disabilities.

4.1 ∣. Fertility and family planning

We found few studies describing the fertility of women with intellectual and developmental disabilities with some suggested evidence that fertility rate is lower compared to peers without intellectual and developmental disabilities (Rowlands & Amy, 2019). The fertility rates and scarcity of studies in this area are likely a result of the historic and current stigma, ableism and lack of opportunity surrounding pregnancy for women with intellectual and developmental disabilities. Fertility and fecundity rates are highly associated with other sociological factors (Vollset et al., 2020), so more work is needed in different countries, regions, and contexts. Our review found that women with intellectual and developmental disabilities were less likely to receive appropriate sexual education and family planning services compared to peers. For many women, family planning services are their usual and only source of health care (Frost, 2013; Sonfield et al., 2014). The availability of these family planning services, and thus a reduction in unintended pregnancy, contributes to improved health outcomes for women and children (Centers for Disease Control and Prevention, 1999; Gipson et al., 2008; Sonfield et al., 2014; Tsui et al., 2010). Consequently, these services are essential for women with intellectual and developmental disabilities and their provision may be especially beneficial based on the poor pregnancy outcomes currently observed.

4.2 ∣. Prenatal care

In our review, we found women with intellectual and developmental disabilities were less likely to receive prenatal care, and initiated care later compared to peers. Many reported dissatisfaction with their care. The gaps in prenatal care are a major challenge for improving health for pregnant people with intellectual and developmental disabilities. Prenatal care improves pregnancy outcomes. People who receive prenatal care are three to four times less likely to die from pregnancy-related complications than women who do not receive prenatal care (Bingham et al., 2011). Infants born to people who receive prenatal care are five times less likely to die in infancy than those born to mothers who did not receive care (Office of Women's Health, 2017). Additionally, access to and utilisation of adequate prenatal care is associated with a reduced risk for pregnancy complications, labour complications (Ekwempu, 1988), and negative fetal outcomes, such as low birth weight and preterm birth (Barros et al., 1996). Women with intellectual and developmental disabilities face various individual and structural barriers when trying to access reproductive health care. Barriers include a lack of accessible information, stigma, negative physician attitudes (Horner-Johnson et al., 2019), and fear or distrust of medical providers (Phillippi, 2009). It is likely that delayed or inadequate prenatal care contributes to disparities in outcomes for people with intellectual and developmental disabilities.

4.3 ∣. Midwives, doulas and post-partum care

We found a small literature highlighting the potential for midwives and doulas to partner with pregnant people with intellectual and developmental disabilities; yet many midwives and doulas do not receive training or guidance in working with people with intellectual and developmental disabilities. In the general literature, we see that midwives and doulas can have a profound impact on maternal and infant health through the prenatal and postnatal periods. Continuous support by these trained professionals provides women with empowerment to communicate her needs, the ability to make informed decisions, and various improved outcomes for the mother and her child (Biro, 2011; Gruber et al., 2013; Steel et al., 2014; Tarkka et al., 2000). Mothers who utilised doula services were found to be two times less likely to experience birth complications and four times less likely to have a low birthweight baby; these positive effects were even greater for under-resourced women (Gruber et al., 2013). The benefits of midwife/doula care may decrease multi-day postnatal stays in the hospital. Midwives and doulas may lack resources and be under-utilised by the general population due to over-medicalisation of pregnancy care (Shaw, 2013), which impacts uptake for women with intellectual and developmental disabilities. Standard health care systems may not be as quick to adapt to the needs of women with intellectual and developmental disabilities or other complications, but the specialty of midwife and doula care may help bridge the gap during this time.

4.4 ∣. Recommendations

There is a need for vast improvements in the resources and services provided to women with intellectual and developmental disabilities regarding sexual and reproductive health care. While research on this topic is increasing, many gaps still exist. It is necessary to fill those gaps so that action can be taken; a better and more complete understanding of the issue will allow for the efficacious recommendations to be put forth. Based on the scoping review and the literature, the following are promising suggestions.

Accessible, appropriate sexual health education for individuals with intellectual and developmental disabilities in schools will increase knowledge about healthy relationships, reproductive health, contraceptive methods and family planning resources. Specialised training of health care professionals to provide comprehensive care to women with intellectual and developmental disabilities will also be valuable. Areas for improvement within the health system include implicit bias or stigma training for health care providers, allotting more time for appointments for patients with intellectual and developmental disabilities, and utilising different avenues of disseminating information so that it is accessible to all (e.g., brochures, easy read format, fewer words, direct language, pictures and modelling). To ensure health equity, it is imperative to address both systemic and intersectional barriers. While improvements should be made to the overarching systems of health care, midwife and doula care may help provide support, uphold autonomy, and improve outcomes for women with intellectual and developmental disabilities in the interim. It is also important to identify clinical and community experts to guide interventions.

4.5 ∣. Limitations

Our research includes several important limitations. First, we excluded literature not written in English; this may have led to the exclusion of important articles related to our topic. Some identified articles included women with intellectual and developmental disabilities but did not contain data related to that population specifically and were thus excluded. For example, several articles included women with intellectual and developmental disabilities into broader categories of ‘women with disabilities’ or ‘women with multiple disabilities’, while others considered certain intellectual and developmental disabilities (e.g., cerebral palsy) to be defined as physical rather than learning/cognitive disabilities. The varying categorisation may have limited our ability to identify issues affecting all women with intellectual and developmental disabilities. We excluded grey literature which may have excluded important but unpublished findings. Lastly, we chose to perform a scoping review rather than a systematic review. A scoping review allowed us to provide an overview of the available research, but was less thorough than a systematic review, preventing us from providing meta-analytic estimates and producing a summary answer to a specific research question.

One current challenge related to this developing body of literature is that intellectual and developmental disabilities encompass a heterogeneous group of conditions. Intellectual and developmental disabilities include conditions such as cerebral palsy, Down syndrome, and autism, among others. The exact definition of intellectual and developmental disabilities, as well as the different categories of intellectual and developmental disabilities, often varies based on the source of information (National Institute of Child Health and Human Development, 2016). Findings from our scoping review reflect many different definitions for our population of interest. Identified literature utilised the categories of intellectual and developmental disabilities, intellectual disability, learning disability and cognitive disability, each of which incorporated various definitions of the conditions. Additionally, multiple articles that we included in our scoping review researched only specific sub conditions of intellectual and developmental disabilities, such as Asperger's syndrome or Turner syndrome. Some studies also included women who were self-diagnosed, adding to the complexity of defining intellectual and developmental disabilities. The vast variability in how intellectual and developmental disabilities is defined across studies makes it difficult to synthesise findings and suggest population-specific recommendations. More consistent definitions or more refined classifications are needed to meta-analyse estimates.

5 ∣. CONCLUSION

The findings of this scoping review indicate that women with intellectual and developmental disabilities had lower fertility rates, were less likely to access comprehensive sexual education, were less likely to receive prenatal care, and received it later into their pregnancy than women without intellectual and developmental disabilities. Our findings suggest an urgent need to expand research regarding the sexual and reproductive health of women with intellectual and developmental disabilities and to develop appropriate and accessible interventions to support their needs.

Supplementary Material

search criteria

NIHMS1851994-supplement-search_criteria.docx^{(20.6KB, docx)}

ACKNOWLEDGEMENT

This work was funded by the National Institute for Child Health and Human Development R03HD099619. This paper was presented as a lightning talk at the 2021 Society for Paediatric and Perinatal Epidemiology annual meeting.

Funding information

Eunice Kennedy Shriver National Institute of Child Health and Human Development, Grant/Award Number: R03HD099619

Footnotes

CONFLICT OF INTEREST

The authors have no conflicts to report.

SUPPORTING INFORMATION

Additional supporting information may be found in the online version of the article at the publisher's website.

We recognise not all pregnant people are women. However, there has been limited research on pregnancy experience in gender-diverse individuals with intellectual and developmental disabilities; therefore, we will be consistent with the published literature and focus on the population of women with intellectual and developmental disabilities

DATA AVAILABILITY STATEMENT

Data sharing not applicable - no new data generated.

REFERENCES

Akobirshoev I, Mitra M, Parish SL, Moore Simas TA, Dembo R, & Ncube CN (2018). Racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 63(4), 313–326. 10.1111/jir.12577 [DOI] [PMC free article] [PubMed] [Google Scholar]
Barros H, Tavares M, & Rodrigues T (1996). Role of prenatal care in preterm birth and low birthweight in Portugal. Journal of Public Health, 18(3), 321–328. 10.1093/oxfordjournals.pubmed.a024513 [DOI] [PubMed] [Google Scholar]
Bingham D, Strauss N, & Coeytaux F (2011). Maternal mortality in the United States: A human rights failure. Contraception, 83(3), 189–193. 10.1016/j.contraception.2010.11.013 [DOI] [PubMed] [Google Scholar]
Birkebaek N, Crüger D, Hansen J, Nielsen J, & Bruun-Petersen G (2002). Fertility and pregnancy outcome in Danish women with turner syndrome. Clinical Genetics, 61(1), 35–39. 10.1034/j.1399-0004.2002.610107.x [DOI] [PubMed] [Google Scholar]
Biro MA (2011). What has public health got to do with midwifery? Midwives' role in securing better health outcomes for mothers and babies. Women and Birth, 24(1), 17–23. 10.1016/j.wombi.2010.06.001 [DOI] [PubMed] [Google Scholar]
Brown H, Cobigo V, Lunsky Y, & Vigod S (2019). Reproductive health in women with intellectual and developmental disabilities in Ontario: Implications for policy and practice. Healthcare Quarterly, 21(4), 6–9. 10.12927/hcq.2019.25748 [DOI] [PubMed] [Google Scholar]
Brown HK, Chen S, Guttmann A, Havercamp SM, Parish S, Ray JG, Tarasoff LA, Vigod SN, Carty A, & Lunsky Y (2020). Rates of recognized pregnancy in women with disabilities in Ontario, Canada. American Journal of Obstetrics and Gynecology, 222(2), 189–192. 10.1016/j.ajog.2019.10.096 [DOI] [PMC free article] [PubMed] [Google Scholar]
Brown HK, Cobigo V, Lunsky Y, Dennis C, & Vigod S (2016). Perinatal health of women with intellectual and developmental disabilities and comorbid mental illness. The Canadian Journal of Psychiatry, 61(11), 714–723. 10.1177/0706743716649188 [DOI] [PMC free article] [PubMed] [Google Scholar]
Brown HK, Lunsky Y, Wilton AS, Cobigo V, & Vigod SN (2016). Pregnancy in women with intellectual and developmental disabilities. Journal of Obstetrics and Gynaecology Canada, 38(1), 9–16. 10.1016/j.jogc.2015.10.004 [DOI] [PubMed] [Google Scholar]
Brown HK, Ray JG, Liu N, Lunsky Y, & Vigod SN (2018). Rapid repeat pregnancy among women with intellectual and developmental disabilities: A population-based cohort study. Canadian Medical Association Journal, 190(32), E949–E956. 10.1503/cmaj.170932 [DOI] [PMC free article] [PubMed] [Google Scholar]
Centers for Disease Control and Prevention. (1999). Achievements in Public Health, 1900–1999: Family Planning. 1073–1080. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm4847a1.htm
Chrastina J, & VečDeřová H (2018). Supporting sexuality in adults with intellectual disability—A short review. Sexuality and Disability, 38(2), 285–298. 10.1007/s11195-018-9546-8 [DOI] [Google Scholar]
Conder J, Mirfin-Veitch B, Sanders J, & Munford R (2011). Planned pregnancy, planned parenting: Enabling choice for adults with a learning disability. British Journal of Learning Disabilities, 39(2), 105–112. 10.1111/j.1468-3156.2010.00625.x [DOI] [Google Scholar]
Crabb C, Owen R, & Heller T (2020). Female Medicaid enrollees with disabilities and discussions with health care providers about contraception/family planning and sexually transmitted infections. Sexuality and Disability, 38(2), 299–312. 10.1007/s11195-019-09599-y [DOI] [Google Scholar]
Ditchman N, Kosyluk K, Lee E-J, & Jones N (2016). How stigma affects the lives of people with intellectual disabilities: An overview. In Scior K & Werner S (Eds.), Intellectual disability and stigma: Stepping out from the margins (pp. 31–47). Palgrave Macmillan UK. [Google Scholar]
Ekwempu CC (1988). The influence of antenatal care on pregnancy outcome. Tropical Journal of Obstetrics Gynaecology, 1, 67–71. [PubMed] [Google Scholar]
Frawley P, & Wilson NJ (2016). Young people with intellectual disability talking about sexuality education and information. Sexuality and Disability, 34(4), 469–484. 10.1007/s11195-016-9460-x [DOI] [Google Scholar]
Frost JJ (2013). U.S. women's use of sexual and reproductive health services: Trends, sources of care and factors associated with use, 1995–2010. Guttmacher Institute. [Google Scholar]
Gardner M, Suplee PD, Bloch J, & Lecks K (2016). Exploratory study of childbearing experiences of women with Asperger syndrome. Nursing for Women's Health, 20(1), 28–37. 10.1016/j.nwh.2015.12.001 [DOI] [PubMed] [Google Scholar]
Gipson JD, Koenig MA, & Hindin MJ (2008). The effects of unintended pregnancy on infant, child, and parental health: A review of the literature. Studies in Family Planning, 39(1), 18–38. 10.1111/j.1728-4465.2008.00148.x [DOI] [PubMed] [Google Scholar]
Goddard W, & Melville S (2001). Research methodology: An introduction. Juta. [Google Scholar]
Gruber KJ, Cupito SH, & Dobson CF (2013). Impact of doulas on healthy birth outcomes. The Journal of Perinatal Education, 22(1), 49–58. 10.1891/1058-1243.22.1.49 [DOI] [PMC free article] [PubMed] [Google Scholar]
Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, & Welch VA (Eds.). (2019). Cochrane handbook for systematic reviews of interventions (2nd ed.). John Wiley & Sons. [Google Scholar]
Höglund B, & Larsson M (2013). Struggling for motherhood with an intellectual disability—A qualitative study of women's experiences in Sweden. Midwifery, 29(6), 698–704. 10.1016/j.midw.2012.06.014 [DOI] [PubMed] [Google Scholar]
Höglund B, & Larsson M (2014). Professional and social support enhances maternal well-being in women with intellectual disability: A swedish interview study. Midwifery, 30(11), 1118–1123. 10.1016/j.midw.2014.03.018 [DOI] [PubMed] [Google Scholar]
Höglund B, & Larsson M (2015). Midwives' comprehension of care for women with intellectual disability during pregnancy and childbirth: An open-ended questionnaire study in Sweden. Women and Birth, 28(3), E57–E62. 10.1016/j.wombi.2015.03.002 [DOI] [PubMed] [Google Scholar]
Höglund B, & Larsson M (2019). Midwives' work and attitudes towards contraceptive counselling and contraception among women with intellectual disability: Focus group interviews in Sweden. The European Journal of Contraception & Reproductive Health Care, 24(1), 39–44. 10.1080/13625187.2018.1555640 [DOI] [PubMed] [Google Scholar]
Höglund B, Lindgren P, & Larsson M (2012). Pregnancy and birth outcomes of women with intellectual disability in Sweden: A national register study. Acta Obstetricia et Gynecologica Scandinavica, 91(12), 1381–1387. 10.1111/j.1600-0412.2012.01509.x [DOI] [PMC free article] [PubMed] [Google Scholar]
Höglund B, Lindgren P, & Larsson M (2013). Midwives' knowledge of attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: A cross-sectional study in Sweden. Midwifery, 29(8), 950–955. 10.1016/j.midw.2012.12.002 [DOI] [PubMed] [Google Scholar]
Holmes LG, Himle MB, Sewell KK, Carbone PS, Strassberg DS, & Murphy NA (2014). Addressing sexuality in youth with autism spectrum disorders: Current pediatric practices and barriers. Journal of Developmental and Behavioral Pediatrics, 35(3), 172–178. [DOI] [PubMed] [Google Scholar]
Homeyard C, Montgomery E, Chinn D, & Patelarou E (2016). Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review. Midwifery, 32, 45–57. 10.1016/j.midw.2015.10.002 [DOI] [PubMed] [Google Scholar]
Homeyard C, & Patelarou E (2018). To what extent ARE midwives adapting antenatal information for pregnant women with intellectual disabilities? A survey of NHS trusts in England. Public Health, 158, 25–30. 10.1016/j.puhe.2018.01.034 [DOI] [PubMed] [Google Scholar]
Horner-Johnson W (2019). Shining a light on reproductive health care needs of women with disabilities. Journal of Women's Health, 28(7), 888–889. 10.1089/jwh.2018.7629 [DOI] [PubMed] [Google Scholar]
Horner-Johnson W, Biel FM, Caughey AB, & Darney BG (2019). Differences in prenatal care by presence and type of maternal disability. American Journal of Preventive Medicine, 56(3), 376–382. 10.1016/j.amepre.2018.10.021 [DOI] [PMC free article] [PubMed] [Google Scholar]
Horner-Johnson W, Dissanayake M, Wu JP, Caughey AB, & Darney BG (2020). Pregnancy intendedness by maternal disability status and type in the United States. Perspectives on Sexual and Reproductive Health, 52(1), 31–38. 10.1363/psrh.12130 [DOI] [PMC free article] [PubMed] [Google Scholar]
Kahan BC, Rehal S, & Cro S (2015). Risk of selection bias in randomised trials. Trials, 16, 405–405. 10.1186/s13063-015-0920-x [DOI] [PMC free article] [PubMed] [Google Scholar]
Lum M, Garnett M, & O'Connor E (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder. Research in Autism Spectrum Disorders, 8(12), 1713–1721. 10.1016/j.rasd.2014.09.009 [DOI] [Google Scholar]
Malouf R, Henderson J, & Redshaw M (2017). Access and quality of maternity care for disabled women during pregnancy, birth, and the postnatal period in England: Data from a national survey. BMJ Open, 7(7), 016757. 10.1136/bmjopen-2017-016757 [DOI] [PMC free article] [PubMed] [Google Scholar]
Malouf R, McLeish J, Ryan S, Gray R, & Redshaw M (2017). ‘We both just wanted to be normal parents’: A qualitative study of the experience of maternity care for women with learning disability. BMJ Open, 7(3), 015526. 10.1136/bmjopen-2016-015526 [DOI] [PMC free article] [PubMed] [Google Scholar]
McCann E, Marsh L, & Brown M (2019). People with intellectual disabilities, relationship, and sex education programmes: A systematic review. Health Education Journal, 78(8), 885–900. 10.1177/0017896919856047 [DOI] [Google Scholar]
McGarry A, Stenfert Kroese B, & Cox R (2015). How do women with an intellectual disability experience the support of a doula during their pregnancy, childbirth and after the birth of their child? Journal of Applied Research in Intellectual Disabilities, 29(1), 21–33. 10.1111/jar.12155 [DOI] [PubMed] [Google Scholar]
Medina-Rico M, López-Ramos H, & Quiñonez A (2017). Sexuality in people with intellectual disability: Review of literature. Sexuality and Disability, 36(3), 231–248. 10.1007/s11195-017-9508-6 [DOI] [Google Scholar]
Mitra M, Parish SL, Clements KM, Cui X, & Diop H (2015). Pregnancy outcomes among women with intellectual and developmental disabilities. American Journal of Preventive Medicine, 48(3), 300–308. 10.1016/j.amepre.2014.09.032 [DOI] [PubMed] [Google Scholar]
Mitra M, Parish SL, Clements KM, Zhang J, & Simas TA (2018). Antenatal hospitalization among U.S. women with intellectual and developmental disabilities: A retrospective cohort study. American Journal on Intellectual and Developmental Disabilities, 123(5), 399–411. 10.1352/1944-7558-123.5.399 [DOI] [PMC free article] [PubMed] [Google Scholar]
Mosher W, Hughes RB, Bloom T, Horton L, Mojtabai R, & Alhusen JL (2018). Contraceptive use by disability status: New national estimates from the national survey of family growth. Contraception, 97(6), 552–558. 10.1016/j.contraception.2018.03.031 [DOI] [PMC free article] [PubMed] [Google Scholar]
Mueller BA, Crane D, Doody DR, Stuart SN, & Schiff MA (2019). Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability. Disability and Health Journal, 12(3), 452–459. 10.1016/j.dhjo.2019.01.004 [DOI] [PMC free article] [PubMed] [Google Scholar]
National Institutes for Child Health and Human Development. (2016). Intellectual and developmental disabilities (intellectual and developmental disabilities): Condition information. https://www.nichd.nih.gov/health/topics/idds/conditioninfo/default
Office on Women's Health (OASH). (2017). Prenatal care. https://www.womenshealth.gov/a-z-topics/prenatal-care
Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, & Soares CB (2015). Guidance for conducting systematic scoping reviews. International Journal of Evidence-Based Healthcare, 13(3), 141–146. 10.1097/XEB.0000000000000050 [DOI] [PubMed] [Google Scholar]
Phillippi JC (2009). Women's perceptions of access to prenatal care in the United States: A literature review. Journal of Midwifery & Women's Health, 54(3), 219–225. 10.1016/j.jmwh.2009.01.002 [DOI] [PubMed] [Google Scholar]
Pohl AL, Crockford SK, Blakemore M, Allison C, & Baron-Cohen S (2020). A comparative study of autistic and non-autistic women's experience of motherhood. Molecular Autism, 11(1), 1–12. 10.1186/s13229-019-0304-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
Redshaw M, Malouf R, Gao H, & Gray R (2013). Women with disability: The experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy and Childbirth, 13(1), 174. 10.1186/1471-2393-13-174 [DOI] [PMC free article] [PubMed] [Google Scholar]
Residential Information Systems Project. (2020). FY 2017 RISP Infographics: How many people with intellectual or developmental disabilities live in the United States?. https://publications.ici.umn.edu/risp/2017/infographics/people-with-idd-in-the-united-states-and-the-proportion-who-receive-services
Rowlands S, & Amy JJ (2019). Sterilization of those with intellectual disability: Evolution from non-consensual interventions to strict safeguards. Journal of Intellectual Disabilities, 23(2), 233–249. 10.1177/1744629517747162 [DOI] [PubMed] [Google Scholar]
Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo H, & Durkin M (2020). Pregnancy complications and maternal birth outcomes in women with intellectual and developmental disabilities in Wisconsin Medicaid. PLoS One, 15(10), 0241298. 10.1371/journal.pone.0241298 [DOI] [PMC free article] [PubMed] [Google Scholar]
Shaw JC (2013). The medicalization of birth and midwifery as resistance. Health Care for Women International, 34(6), 522–536. 10.1080/07399332.2012.736569 [DOI] [PubMed] [Google Scholar]
Sonfield A, Hasstedt K, & Gold RB (2014). Moving forward: Family planning in the era of health reform. Guttmacher Institute; 56. [Google Scholar]
Steel A, Frawley J, Adams J, & Diezel H (2014). Trained or professional doulas in the support and care of pregnant and birthing women: A critical integrative review. Health & Social Care in the Community, 23(3), 225–241. 10.1111/hsc.12112 [DOI] [PubMed] [Google Scholar]
Sucharew H (2019). Methods for research evidence synthesis: The scoping review approach. Journal of Hospital Medicine, 14(7), 416. 10.12788/jhm.3248 [DOI] [PubMed] [Google Scholar]
Tarasoff LA, Murtaza F, Carty A, Salaeva D, Hamilton AD, & Brown HK (2020). Health of newborns and infants born to women with disabilities: A meta-analysis. Pediatrics, 146(6), 1–13. 10.1542/peds.2020-1635 [DOI] [PMC free article] [PubMed] [Google Scholar]
Tarasoff LA, Ravindran S, Malik H, Salaeva D, & Brown HK (2020). Maternal disability and risk for pregnancy, delivery, and postpartum complications: A systematic review and meta-analysis. American Journal of Obstetrics and Gynecology, 222(1), E1–E27. 10.1016/j.ajog.2019.07.015 [DOI] [PMC free article] [PubMed] [Google Scholar]
Tarkka M, Paunonen M, & Laippala P (2000). Importance of the midwife in the first-time Mother's experience of childbirth. Scandinavian Journal of Caring Sciences, 14(3), 184–190. 10.1111/j.1471-6712.2000.tb00582.x [DOI] [PubMed] [Google Scholar]
Tomsa R, Gutu S, Cojocaru D, Gutierrez-Bermejo B, Flores N, & Jenaro C (2021). Prevalence of sexual abuse in adults with intellectual disability: Systematic review and meta-analysis. International Journal of Environmental Research and Public Health, 18(4), 1–17. 10.3390/ijerph18041980 [DOI] [PMC free article] [PubMed] [Google Scholar]
Tsui AO, McDonald-Mosley R, & Burke AE (2010). Family planning and the burden of unintended pregnancies. Epidemiologic Reviews, 32(1), 152–174. 10.1093/epirev/mxq012 [DOI] [PMC free article] [PubMed] [Google Scholar]
Verlenden JV, Bertolli J, & Warner L (2019). Contraceptive practices and reproductive health considerations for adolescent and adult women with intellectual and developmental disabilities: A review of the literature. Sexuality and Disability, 37(4), 541–557. 10.1007/s11195-019-09600-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
Vollset SE, Goren E, Yuan C, Cao J, Smith AE, Hsiao T, Bisignano C, Azhar GS, Castro E, Chalek J, Dolgert AJ, Frank T, Fukutaki K, Hay SI, Lozano R, Mokdad AH, Nandakumar V, Pierce M, Pletcher M, … Murray CJ (2020). Fertility, mortality, migration, and population scenarios for 195 countries and territories from 2017 to 2100: A forecasting analysis for the global burden of disease study. The Lancet, 396(10258), 1285–1306. 10.1016/s0140-6736(20)30677-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
Zablotsky B, Black LI, Maenner MJ, Schieve LA, & Blumberg SJ (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. National Health Statistics Reports, 87, 1–20. https://www.ncbi.nlm.nih.gov/pubmed/26632847 [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

search criteria

NIHMS1851994-supplement-search_criteria.docx^{(20.6KB, docx)}

Data Availability Statement

Data sharing not applicable - no new data generated.

[R1] Akobirshoev I, Mitra M, Parish SL, Moore Simas TA, Dembo R, & Ncube CN (2018). Racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 63(4), 313–326. 10.1111/jir.12577 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R2] Barros H, Tavares M, & Rodrigues T (1996). Role of prenatal care in preterm birth and low birthweight in Portugal. Journal of Public Health, 18(3), 321–328. 10.1093/oxfordjournals.pubmed.a024513 [DOI] [PubMed] [Google Scholar]

[R3] Bingham D, Strauss N, & Coeytaux F (2011). Maternal mortality in the United States: A human rights failure. Contraception, 83(3), 189–193. 10.1016/j.contraception.2010.11.013 [DOI] [PubMed] [Google Scholar]

[R4] Birkebaek N, Crüger D, Hansen J, Nielsen J, & Bruun-Petersen G (2002). Fertility and pregnancy outcome in Danish women with turner syndrome. Clinical Genetics, 61(1), 35–39. 10.1034/j.1399-0004.2002.610107.x [DOI] [PubMed] [Google Scholar]

[R5] Biro MA (2011). What has public health got to do with midwifery? Midwives' role in securing better health outcomes for mothers and babies. Women and Birth, 24(1), 17–23. 10.1016/j.wombi.2010.06.001 [DOI] [PubMed] [Google Scholar]

[R6] Brown H, Cobigo V, Lunsky Y, & Vigod S (2019). Reproductive health in women with intellectual and developmental disabilities in Ontario: Implications for policy and practice. Healthcare Quarterly, 21(4), 6–9. 10.12927/hcq.2019.25748 [DOI] [PubMed] [Google Scholar]

[R7] Brown HK, Chen S, Guttmann A, Havercamp SM, Parish S, Ray JG, Tarasoff LA, Vigod SN, Carty A, & Lunsky Y (2020). Rates of recognized pregnancy in women with disabilities in Ontario, Canada. American Journal of Obstetrics and Gynecology, 222(2), 189–192. 10.1016/j.ajog.2019.10.096 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R8] Brown HK, Cobigo V, Lunsky Y, Dennis C, & Vigod S (2016). Perinatal health of women with intellectual and developmental disabilities and comorbid mental illness. The Canadian Journal of Psychiatry, 61(11), 714–723. 10.1177/0706743716649188 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R9] Brown HK, Lunsky Y, Wilton AS, Cobigo V, & Vigod SN (2016). Pregnancy in women with intellectual and developmental disabilities. Journal of Obstetrics and Gynaecology Canada, 38(1), 9–16. 10.1016/j.jogc.2015.10.004 [DOI] [PubMed] [Google Scholar]

[R10] Brown HK, Ray JG, Liu N, Lunsky Y, & Vigod SN (2018). Rapid repeat pregnancy among women with intellectual and developmental disabilities: A population-based cohort study. Canadian Medical Association Journal, 190(32), E949–E956. 10.1503/cmaj.170932 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R11] Centers for Disease Control and Prevention. (1999). Achievements in Public Health, 1900–1999: Family Planning. 1073–1080. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm4847a1.htm

[R12] Chrastina J, & VečDeřová H (2018). Supporting sexuality in adults with intellectual disability—A short review. Sexuality and Disability, 38(2), 285–298. 10.1007/s11195-018-9546-8 [DOI] [Google Scholar]

[R13] Conder J, Mirfin-Veitch B, Sanders J, & Munford R (2011). Planned pregnancy, planned parenting: Enabling choice for adults with a learning disability. British Journal of Learning Disabilities, 39(2), 105–112. 10.1111/j.1468-3156.2010.00625.x [DOI] [Google Scholar]

[R14] Crabb C, Owen R, & Heller T (2020). Female Medicaid enrollees with disabilities and discussions with health care providers about contraception/family planning and sexually transmitted infections. Sexuality and Disability, 38(2), 299–312. 10.1007/s11195-019-09599-y [DOI] [Google Scholar]

[R15] Ditchman N, Kosyluk K, Lee E-J, & Jones N (2016). How stigma affects the lives of people with intellectual disabilities: An overview. In Scior K & Werner S (Eds.), Intellectual disability and stigma: Stepping out from the margins (pp. 31–47). Palgrave Macmillan UK. [Google Scholar]

[R16] Ekwempu CC (1988). The influence of antenatal care on pregnancy outcome. Tropical Journal of Obstetrics Gynaecology, 1, 67–71. [PubMed] [Google Scholar]

[R17] Frawley P, & Wilson NJ (2016). Young people with intellectual disability talking about sexuality education and information. Sexuality and Disability, 34(4), 469–484. 10.1007/s11195-016-9460-x [DOI] [Google Scholar]

[R18] Frost JJ (2013). U.S. women's use of sexual and reproductive health services: Trends, sources of care and factors associated with use, 1995–2010. Guttmacher Institute. [Google Scholar]

[R19] Gardner M, Suplee PD, Bloch J, & Lecks K (2016). Exploratory study of childbearing experiences of women with Asperger syndrome. Nursing for Women's Health, 20(1), 28–37. 10.1016/j.nwh.2015.12.001 [DOI] [PubMed] [Google Scholar]

[R20] Gipson JD, Koenig MA, & Hindin MJ (2008). The effects of unintended pregnancy on infant, child, and parental health: A review of the literature. Studies in Family Planning, 39(1), 18–38. 10.1111/j.1728-4465.2008.00148.x [DOI] [PubMed] [Google Scholar]

[R21] Goddard W, & Melville S (2001). Research methodology: An introduction. Juta. [Google Scholar]

[R22] Gruber KJ, Cupito SH, & Dobson CF (2013). Impact of doulas on healthy birth outcomes. The Journal of Perinatal Education, 22(1), 49–58. 10.1891/1058-1243.22.1.49 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R23] Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, & Welch VA (Eds.). (2019). Cochrane handbook for systematic reviews of interventions (2nd ed.). John Wiley & Sons. [Google Scholar]

[R24] Höglund B, & Larsson M (2013). Struggling for motherhood with an intellectual disability—A qualitative study of women's experiences in Sweden. Midwifery, 29(6), 698–704. 10.1016/j.midw.2012.06.014 [DOI] [PubMed] [Google Scholar]

[R25] Höglund B, & Larsson M (2014). Professional and social support enhances maternal well-being in women with intellectual disability: A swedish interview study. Midwifery, 30(11), 1118–1123. 10.1016/j.midw.2014.03.018 [DOI] [PubMed] [Google Scholar]

[R26] Höglund B, & Larsson M (2015). Midwives' comprehension of care for women with intellectual disability during pregnancy and childbirth: An open-ended questionnaire study in Sweden. Women and Birth, 28(3), E57–E62. 10.1016/j.wombi.2015.03.002 [DOI] [PubMed] [Google Scholar]

[R27] Höglund B, & Larsson M (2019). Midwives' work and attitudes towards contraceptive counselling and contraception among women with intellectual disability: Focus group interviews in Sweden. The European Journal of Contraception & Reproductive Health Care, 24(1), 39–44. 10.1080/13625187.2018.1555640 [DOI] [PubMed] [Google Scholar]

[R28] Höglund B, Lindgren P, & Larsson M (2012). Pregnancy and birth outcomes of women with intellectual disability in Sweden: A national register study. Acta Obstetricia et Gynecologica Scandinavica, 91(12), 1381–1387. 10.1111/j.1600-0412.2012.01509.x [DOI] [PMC free article] [PubMed] [Google Scholar]

[R29] Höglund B, Lindgren P, & Larsson M (2013). Midwives' knowledge of attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: A cross-sectional study in Sweden. Midwifery, 29(8), 950–955. 10.1016/j.midw.2012.12.002 [DOI] [PubMed] [Google Scholar]

[R30] Holmes LG, Himle MB, Sewell KK, Carbone PS, Strassberg DS, & Murphy NA (2014). Addressing sexuality in youth with autism spectrum disorders: Current pediatric practices and barriers. Journal of Developmental and Behavioral Pediatrics, 35(3), 172–178. [DOI] [PubMed] [Google Scholar]

[R31] Homeyard C, Montgomery E, Chinn D, & Patelarou E (2016). Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review. Midwifery, 32, 45–57. 10.1016/j.midw.2015.10.002 [DOI] [PubMed] [Google Scholar]

[R32] Homeyard C, & Patelarou E (2018). To what extent ARE midwives adapting antenatal information for pregnant women with intellectual disabilities? A survey of NHS trusts in England. Public Health, 158, 25–30. 10.1016/j.puhe.2018.01.034 [DOI] [PubMed] [Google Scholar]

[R33] Horner-Johnson W (2019). Shining a light on reproductive health care needs of women with disabilities. Journal of Women's Health, 28(7), 888–889. 10.1089/jwh.2018.7629 [DOI] [PubMed] [Google Scholar]

[R34] Horner-Johnson W, Biel FM, Caughey AB, & Darney BG (2019). Differences in prenatal care by presence and type of maternal disability. American Journal of Preventive Medicine, 56(3), 376–382. 10.1016/j.amepre.2018.10.021 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R35] Horner-Johnson W, Dissanayake M, Wu JP, Caughey AB, & Darney BG (2020). Pregnancy intendedness by maternal disability status and type in the United States. Perspectives on Sexual and Reproductive Health, 52(1), 31–38. 10.1363/psrh.12130 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R36] Kahan BC, Rehal S, & Cro S (2015). Risk of selection bias in randomised trials. Trials, 16, 405–405. 10.1186/s13063-015-0920-x [DOI] [PMC free article] [PubMed] [Google Scholar]

[R37] Lum M, Garnett M, & O'Connor E (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder. Research in Autism Spectrum Disorders, 8(12), 1713–1721. 10.1016/j.rasd.2014.09.009 [DOI] [Google Scholar]

[R38] Malouf R, Henderson J, & Redshaw M (2017). Access and quality of maternity care for disabled women during pregnancy, birth, and the postnatal period in England: Data from a national survey. BMJ Open, 7(7), 016757. 10.1136/bmjopen-2017-016757 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R39] Malouf R, McLeish J, Ryan S, Gray R, & Redshaw M (2017). ‘We both just wanted to be normal parents’: A qualitative study of the experience of maternity care for women with learning disability. BMJ Open, 7(3), 015526. 10.1136/bmjopen-2016-015526 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R40] McCann E, Marsh L, & Brown M (2019). People with intellectual disabilities, relationship, and sex education programmes: A systematic review. Health Education Journal, 78(8), 885–900. 10.1177/0017896919856047 [DOI] [Google Scholar]

[R41] McGarry A, Stenfert Kroese B, & Cox R (2015). How do women with an intellectual disability experience the support of a doula during their pregnancy, childbirth and after the birth of their child? Journal of Applied Research in Intellectual Disabilities, 29(1), 21–33. 10.1111/jar.12155 [DOI] [PubMed] [Google Scholar]

[R42] Medina-Rico M, López-Ramos H, & Quiñonez A (2017). Sexuality in people with intellectual disability: Review of literature. Sexuality and Disability, 36(3), 231–248. 10.1007/s11195-017-9508-6 [DOI] [Google Scholar]

[R43] Mitra M, Parish SL, Clements KM, Cui X, & Diop H (2015). Pregnancy outcomes among women with intellectual and developmental disabilities. American Journal of Preventive Medicine, 48(3), 300–308. 10.1016/j.amepre.2014.09.032 [DOI] [PubMed] [Google Scholar]

[R44] Mitra M, Parish SL, Clements KM, Zhang J, & Simas TA (2018). Antenatal hospitalization among U.S. women with intellectual and developmental disabilities: A retrospective cohort study. American Journal on Intellectual and Developmental Disabilities, 123(5), 399–411. 10.1352/1944-7558-123.5.399 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R45] Mosher W, Hughes RB, Bloom T, Horton L, Mojtabai R, & Alhusen JL (2018). Contraceptive use by disability status: New national estimates from the national survey of family growth. Contraception, 97(6), 552–558. 10.1016/j.contraception.2018.03.031 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R46] Mueller BA, Crane D, Doody DR, Stuart SN, & Schiff MA (2019). Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability. Disability and Health Journal, 12(3), 452–459. 10.1016/j.dhjo.2019.01.004 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R47] National Institutes for Child Health and Human Development. (2016). Intellectual and developmental disabilities (intellectual and developmental disabilities): Condition information. https://www.nichd.nih.gov/health/topics/idds/conditioninfo/default

[R48] Office on Women's Health (OASH). (2017). Prenatal care. https://www.womenshealth.gov/a-z-topics/prenatal-care

[R49] Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, & Soares CB (2015). Guidance for conducting systematic scoping reviews. International Journal of Evidence-Based Healthcare, 13(3), 141–146. 10.1097/XEB.0000000000000050 [DOI] [PubMed] [Google Scholar]

[R50] Phillippi JC (2009). Women's perceptions of access to prenatal care in the United States: A literature review. Journal of Midwifery & Women's Health, 54(3), 219–225. 10.1016/j.jmwh.2009.01.002 [DOI] [PubMed] [Google Scholar]

[R51] Pohl AL, Crockford SK, Blakemore M, Allison C, & Baron-Cohen S (2020). A comparative study of autistic and non-autistic women's experience of motherhood. Molecular Autism, 11(1), 1–12. 10.1186/s13229-019-0304-2 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R52] Redshaw M, Malouf R, Gao H, & Gray R (2013). Women with disability: The experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy and Childbirth, 13(1), 174. 10.1186/1471-2393-13-174 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R53] Residential Information Systems Project. (2020). FY 2017 RISP Infographics: How many people with intellectual or developmental disabilities live in the United States?. https://publications.ici.umn.edu/risp/2017/infographics/people-with-idd-in-the-united-states-and-the-proportion-who-receive-services

[R54] Rowlands S, & Amy JJ (2019). Sterilization of those with intellectual disability: Evolution from non-consensual interventions to strict safeguards. Journal of Intellectual Disabilities, 23(2), 233–249. 10.1177/1744629517747162 [DOI] [PubMed] [Google Scholar]

[R55] Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo H, & Durkin M (2020). Pregnancy complications and maternal birth outcomes in women with intellectual and developmental disabilities in Wisconsin Medicaid. PLoS One, 15(10), 0241298. 10.1371/journal.pone.0241298 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R56] Shaw JC (2013). The medicalization of birth and midwifery as resistance. Health Care for Women International, 34(6), 522–536. 10.1080/07399332.2012.736569 [DOI] [PubMed] [Google Scholar]

[R57] Sonfield A, Hasstedt K, & Gold RB (2014). Moving forward: Family planning in the era of health reform. Guttmacher Institute; 56. [Google Scholar]

[R58] Steel A, Frawley J, Adams J, & Diezel H (2014). Trained or professional doulas in the support and care of pregnant and birthing women: A critical integrative review. Health & Social Care in the Community, 23(3), 225–241. 10.1111/hsc.12112 [DOI] [PubMed] [Google Scholar]

[R59] Sucharew H (2019). Methods for research evidence synthesis: The scoping review approach. Journal of Hospital Medicine, 14(7), 416. 10.12788/jhm.3248 [DOI] [PubMed] [Google Scholar]

[R60] Tarasoff LA, Murtaza F, Carty A, Salaeva D, Hamilton AD, & Brown HK (2020). Health of newborns and infants born to women with disabilities: A meta-analysis. Pediatrics, 146(6), 1–13. 10.1542/peds.2020-1635 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R61] Tarasoff LA, Ravindran S, Malik H, Salaeva D, & Brown HK (2020). Maternal disability and risk for pregnancy, delivery, and postpartum complications: A systematic review and meta-analysis. American Journal of Obstetrics and Gynecology, 222(1), E1–E27. 10.1016/j.ajog.2019.07.015 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R62] Tarkka M, Paunonen M, & Laippala P (2000). Importance of the midwife in the first-time Mother's experience of childbirth. Scandinavian Journal of Caring Sciences, 14(3), 184–190. 10.1111/j.1471-6712.2000.tb00582.x [DOI] [PubMed] [Google Scholar]

[R63] Tomsa R, Gutu S, Cojocaru D, Gutierrez-Bermejo B, Flores N, & Jenaro C (2021). Prevalence of sexual abuse in adults with intellectual disability: Systematic review and meta-analysis. International Journal of Environmental Research and Public Health, 18(4), 1–17. 10.3390/ijerph18041980 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R64] Tsui AO, McDonald-Mosley R, & Burke AE (2010). Family planning and the burden of unintended pregnancies. Epidemiologic Reviews, 32(1), 152–174. 10.1093/epirev/mxq012 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R65] Verlenden JV, Bertolli J, & Warner L (2019). Contraceptive practices and reproductive health considerations for adolescent and adult women with intellectual and developmental disabilities: A review of the literature. Sexuality and Disability, 37(4), 541–557. 10.1007/s11195-019-09600-8 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R66] Vollset SE, Goren E, Yuan C, Cao J, Smith AE, Hsiao T, Bisignano C, Azhar GS, Castro E, Chalek J, Dolgert AJ, Frank T, Fukutaki K, Hay SI, Lozano R, Mokdad AH, Nandakumar V, Pierce M, Pletcher M, … Murray CJ (2020). Fertility, mortality, migration, and population scenarios for 195 countries and territories from 2017 to 2100: A forecasting analysis for the global burden of disease study. The Lancet, 396(10258), 1285–1306. 10.1016/s0140-6736(20)30677-2 [DOI] [PMC free article] [PubMed] [Google Scholar]

[R67] Zablotsky B, Black LI, Maenner MJ, Schieve LA, & Blumberg SJ (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. National Health Statistics Reports, 87, 1–20. https://www.ncbi.nlm.nih.gov/pubmed/26632847 [PubMed] [Google Scholar]

PERMALINK

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

Jade I Ransohoff

Prisha Sujin Kumar

David Flynn

Eric Rubenstein

Abstract

Background:

Methods:

Results:

Conclusions:

1 ∣. INTRODUCTION

2 ∣. METHODS

3 ∣. RESULTS

3.1 ∣. Study descriptions

FIGURE 1.

3.2 ∣. Identifying key areas

3.3 ∣. Fertility and fecundity

TABLE 1.

3.4 ∣. Sexual education, contraceptive use and pregnancy timing

TABLE 2.

3.5 ∣. Prenatal care

TABLE 3.

3.6 ∣. Midwife and doula care

TABLE 4.

3.7 ∣. Post-delivery care

TABLE 5.

4 ∣. DISCUSSION

4.1 ∣. Fertility and family planning

4.2 ∣. Prenatal care

4.3 ∣. Midwives, doulas and post-partum care

4.4 ∣. Recommendations

4.5 ∣. Limitations

5 ∣. CONCLUSION

Supplementary Material

ACKNOWLEDGEMENT

Funding information

Footnotes

DATA AVAILABILITY STATEMENT

REFERENCES

Associated Data

Supplementary Materials

Data Availability Statement

ACTIONS

PERMALINK

RESOURCES

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