Obstetrics
Pregnancy in Women With Intellectual and Developmental Disabilities

https://doi.org/10.1016/j.jogc.2015.10.004Get rights and content

Abstract

Objective

Our objectives were to describe the general fertility rate (GFR) and age-specific fertility rates (ASFRs) of women with intellectual and developmental disabilities (IDD) and the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD.

Methods

In this population-based retrospective cohort study using linked Ontario health and social services administrative data, we identified 18- to 49-year-old women with IDD (N = 21 181) and without IDD (N = 990 776). The GFR and ASFRs (2009) were calculated for both groups and compared using rate ratios (RR) and 95% confidence intervals (CI). Among women with a singleton live birth (N = 423 with, N = 42 439 without IDD), social and health characteristics were compared using Pearson's Chi square tests.

Results

The GFR in women with IDD (20.3 per 1000) was lower than that in women without IDD (43.4 per 1000) (RR 0.47; 95% CI 0.43 to 0.51). ASFRs in 18- to 24-year-olds were similar in both groups. Among women with a singleton live birth, those with IDD were younger and had higher rates of poverty, epilepsy, obesity, and mental health issues. They also had high rates of medication use during pregnancy.

Conclusion

In the largest study of fertility in women with IDD to date, we found that ASFRs are similar in young women with and without IDD. Women with IDD with a singleton live birth experience significant social and health disparities during pregnancy. These findings suggest the need to develop services to support the reproductive health of this vulnerable group.

Résumé

Objectif

Nous avions pour objectif de décrire le taux de fécondité général (TFG) et les taux de fécondité propres à l'âge (TFPA) des femmes présentant des déficiences intellectuelles et développementales (DID), et de décrire les caractéristiques sociales et sanitaires de celles qui accouchaient d'un enfant vivant (à la suite d'une grossesse monofœtale). Nous avons par la suite comparé ces femmes à des femmes ne présentant de DID, en se fondant sur ces paramètres.

Méthodes

Dans le cadre de cette étude de cohorte rétrospective en population générale fondée sur des données administratives ontariennes liées et issues des services sociaux et de santé, nous avons identifié des femmes de 18 à 49 ans qui présentaient (n = 21 181) et qui ne présentaient pas (n = 990 776) des DID. Le TFG et les TFPA (2009) ont été calculés pour les deux groupes et ont été comparés au moyen de rapports de taux (RT) et d'intervalles de confiance à 95 % (IC). Chez les femmes ayant accouché d'un enfant vivant à la suite d'une grossesse monofœtale (n = 423 en présence de DID, n = 42 439 en l'absence de DID), les caractéristiques sociales et de santé ont été comparées au moyen de tests de chi carré de Pearson.

Résultats

Le TFG était plus faible chez les femmes qui présentaient des DID (20,3 sur 1 000) que chez les femmes qui n'en présentaient pas (43,4 sur 1 000) (RT, 0,47; IC à 95 %, 0,43 à 0,51). Les TFPA chez les 18 à 24 ans étaient semblables dans les deux groupes. Chez les femmes ayant accouché d'un enfant vivant à la suite d'une grossesse monofœtale, celles qui présentaient des DID étaient plus jeunes et connaissaient des taux accrus de pauvreté, d'épilepsie, d'obésité et de problèmes de santé mentale. Elles présentaient également des taux élevés de recours à la médication pendant la grossesse.

Conclusion

Dans le cadre de la plus importante étude à ce jour sur la fécondité des femmes qui présentent des DID, nous avons constaté que les TFPA des femmes présentant des DID étaient semblables à ceux des femmes ne connaissant pas de tels problèmes. Les femmes présentant des DID qui accouchent d'un enfant vivant à la suite d'une grossesse monofœtale connaissent des disparités sociales et sanitaires considérables pendant la grossesse. Ces constatations semblent indiquer que nous devons élaborer des services pour soutenir la santé génésique des femmes de ce groupe vulnérable.

Introduction

Intellectual and developmental disabilities (IDD) are common, affecting one in every 100 individuals.1 These neurodevelopmental disorders are marked by limitations in cognitive skills and communication, social skills, and executive functioning.2 Historically, many women with IDD were institutionalized and/or sterilized.3 With establishment of community-based living and recognition of the rights of persons with disabilities,4 these practices are no longer common.5 Although studies of parenting skills in women with IDD date back to the 1940s,6 research on reproductive health is minimal.7 Accurate estimation of fertility rates in women with IDD and the social and health characteristics of those who give birth is critical for developing clinical programming and public health policy surrounding sexual health and contraception as well as care during pregnancy when support needs are likely intensive.

There is no current, valid estimate of the yearly fertility rate in women with IDD. Two clinical studies in the United States in the 1980s documented the occurrence of live births among women with IDD over an unknown number of years. A medical clinic survey of 11- to 23-year-olds with IDD (N = 87) reported three live births8; a gynaecological surgery clinic chart review noted six live births to 300 women with IDD (average age 38.4 years).9 To our knowledge, only the small population-based study reported by Weiber et al. determined a yearly fertility rate.10 These authors used a special education register to identify 98 women with IDD aged 15 to 33 years in a small Swedish county. They found an average yearly fertility rate of 20.4 live births per 1000 women with IDD (vs. 79.5 per 1000 for 15- to 33-year-olds in the county overall).

Likewise, there is limited understanding of the social and health characteristics of women with IDD who give birth. Women with IDD face multiple disparities: they are more likely than women without IDD to live in poverty,11 to have chronic health conditions12 and mental health issues,13 and to have poor access to primary care.14 They are also more likely to take multiple prescription medications, including psychotropics.15 Although these factors are predictors of maternal and neonatal morbidity,16, 17 only one recent study examined the characteristics of pregnant women with IDD.18 This American retrospective cohort study found that women with IDD (N = 703, identified in 1998–2009) were more likely to be young, less educated, and unmarried. Important health characteristics (e.g., pre-existing health conditions, medication use) were unmeasured.18 Thus, it is unknown to what extent pregnant women with IDD in Canada face social and health disparities which could put their pregnancy at risk.

Our objectives were: to describe the general and age-specific fertility rates of Ontario women with IDD in the 2009 fiscal year as well as the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD.

Section snippets

Methods

We conducted a retrospective cohort study in Ontario, which is Canada's most populous province, with over 13 million residents and 140 000 births per year.19 We obtained data from the Institute for Clinical Evaluative Sciences (ICES). ICES is an independent, non-profit organization that houses databases containing administrative, socio-demographic, and clinical information gathered through health care utilization of Ontario residents, all of whom receive universal health care coverage. These

Results

In Ontario in the 2009 fiscal year, there were 21 181 women with IDD aged 18 to 49 years who had a total of 430 live births. The GFR was 20.3 live births per 1,000 women (95% CI 18.4 to 22.2) in women with IDD and 43.4 live births per 1000 women (95% CI 43.0 to 43.8) in women without IDD. This resulted in a RR of 0.47 (95% CI 0.43 to 0.51) comparing the GFRs in the two groups.

ASFRs peaked earlier in women with IDD, with the highest ASFR among 25- to 29-year-olds (42.3 live births per 1000

Discussion

In this study, the largest population-based study of fertility in women with IDD to date, we found that the GFR in women with IDD was 20.3 live births per 1000 women. Although this is half the GFR in women without IDD, it is clinically significant; in one year alone, we observed 430 live births to women with IDD. Over time, this could have a substantial population impact, with nearly 1000 children being born to women with IDD every two years in an area with the population size of Ontario.

Conclusion

We found that although women with IDD have a lower GFR than their peers without IDD, ASFRs are similar in young women with and without IDD. Moreover, women with IDD with a singleton live birth experience higher rates of social and health disparities than those without IDD. They also have high rates of medication use during pregnancy. Our findings suggest an urgent need to focus on reproductive and perinatal health in women with IDD and to develop appropriate services and policies to support

Acknowledgements

This study was funded by the Ministry of Health and Long Term Care Health Services Research Fund program award and is part of the Health Care Access Research and Developmental Disabilities Program. The study was also supported by the Institute for Clinical Evaluative Sciences, which is funded by an annual grant from the Ontario Ministry of Health and Long Term Care. Hilary Brown is funded by a Canadian Institutes of Health Research Postdoctoral Award. The opinions, results, and conclusions

References (45)

  • A. Chamberlain et al.

    Issues in fertility control for mentally retarded female adolescents: Sexual activity, sexual abuse, and contraception

    Pediatrics

    (1984)
  • S.G. McNeeley et al.

    Gynecologic surgery and surgical morbidity in mentally handicapped women

    Obstet Gynecol

    (1989)
  • I. Weiber et al.

    Children born to women with intellectual disabilities: 5-year incidence in a Swedish county

    J Intellect Disabil Res

    (2011)
  • E. Emerson

    Poverty and people with intellectual disabilities

    Ment Retard Dev Disabil Res Rev

    (2007)
  • P. Noonan Walsh et al.

    Women with disabilities aging well: A global view

    (2002)
  • Y. Lunsky et al.

    Women's mental health

  • N.G. Lennox et al.

    Primary health care and people with an intellectual disability: The evidence base

    J Intellect Disabil Res

    (1997)
  • J.N. Stortz et al.

    Lessons learned from our elders: How to study polypharmacy in populations with intellectual and developmental disabilities

    Intellect Dev Disabil

    (2014)
  • J. McCarthy et al.

    A framework for analyzing the determinants of maternal mortality

    Stud Fam Plann

    (1992)
  • W.H. Mosley et al.

    An analytical framework for the study of child survival in developing countries

    Pop Dev Rev

    (1984)
  • Statistics Canada

    Births, estimates, by province and territory

    (2013)
  • J.I. Williams et al.

    Summary of studies on the quality of health care administrative databases in Canada

  • Cited by (57)

    • Barriers and requirements for parenting supports and mental health care among mothers with intellectual disabilities: Health and social service-provider perspectives

      2022, Research in Developmental Disabilities
      Citation Excerpt :

      Women with ID have higher rates of depression and anxiety than their peers (Cooper et al., 2007; Lunsky, 2003; Richards et al., 2001). Half of women with ID have mental illness before pregnancy (Brown et al., 2016), and they are 10 times more likely than women without ID to have a postpartum psychiatric hospitalization (Brown et al., 2017). High rates of depression are also seen in parents with ID with older children (Emerson & Brigham, 2013; McGaw et al., 2007).

    • Prenatal Care Adequacy Among Women With Disabilities: A Population-Based Study

      2022, American Journal of Preventive Medicine
      Citation Excerpt :

      Fears about the involvement of child protective services may also result in women with disabilities being hesitant to access prenatal care.45 Among women with intellectual/developmental disabilities, a particularly marginalized group, additional barriers may include limited access to sexual health education,46,47 leading to delayed recognition of pregnancy.10 By contrast, intensive prenatal care in some women with physical, sensory, and multiple disabilities may reflect previous findings that these groups are likely to plan their pregnancies (e.g., if using fertility treatments or planning pregnancies around disease activity) and may already be connected with the healthcare system, seeking care earlier.48,49

    View all citing articles on Scopus
    View full text