COMMENTARY

Women With Intellectual and Developmental Disabilities Are an Invisible Obstetric Population

Hilary K. Brown, PhD; Virginie Cobigo, PhD; Yona Lunsky, PhD; Simone Vigod, MD, MSc, FRCPC

Disclosures

August 19, 2016

Toward Better Outcomes

Most women with IDD receive health services in general practice settings.[14] As the fertility rate among women with IDD continues to increase,[11] ob/gyns are likely to encounter more women with IDD in their practices. There are no guidelines on obstetric care for women with IDD, but efforts from other marginalized groups may be relevant.

Maternal health efforts focused on teenagers and women with low income have improved healthcare provider knowledge and made services more effective.[15,16] Because women with IDD may be overrepresented in these groups, these efforts should be expanded to include strategies that apply to women with cognitive limitations. Ob/gyns who work with these populations in particular should be aware of the varying abilities of their patients. Resources exist for screening for IDD in emergency departments and could be adapted to prenatal care settings.[17]

When IDD is identified or suspected, obstetric care should be modified to address the following:

  1. Health issues: Women with IDD frequently enter pregnancy with multiple issues related to chronic medical conditions, mental health problems, and unhealthy lifestyle behaviors.[3,4,5,6,7] Because these women probably received little preventive healthcare before pregnancy,[18] health promotion strategies, initiated early in pregnancy, will be critical in the prevention of adverse pregnancy outcomes in this population.

  2. Health literacy: Women with IDD often have difficulty following complex medical advice, and text-based information is particularly problematic.[19] Instructions should be delivered using accessible language, and written material should be avoided when possible. Prenatal care visits may need to be longer and more frequent to ensure that advice is followed. Furthermore, ob/gyns should coordinate with formal and informal caregivers who can support the health of women with IDD between medical appointments.

  3. Labor and delivery knowledge: Many women with IDD know little about labor and delivery and may experience high levels of distress during childbirth, which can increase their risks for interventions (eg, cesarean section) and complications.[20] Education about the labor and delivery process should be incorporated into prenatal care. Moreover, ob/gyns should ensure that information about consent for interventions is accessible.

  4. Parental support: Although many women with IDD lose custody of their infant at delivery,[12] resources that support effective early parenting, including accessible advice about newborn care, are available in multiple jurisdictions, including the United States and Canada. Women with IDD should be linked with appropriate supportive services during pregnancy to optimize outcomes after delivery.

Dialogue between healthcare providers and patients with IDD about reproductive health has been hindered by a lack of knowledge among providers about how to manage the complex social and health problems of women with IDD[21]; insufficient instruction on sexual health for young women with IDD in school and at home[22]; and reluctance among women with IDD to disclose their disability to providers, owing to fear of negative attitudes.[23] Given increasing fertility rates and evidence of poor maternal and newborn outcomes in women with IDD, the dialogue needs to be started. It is time to make pregnancy-related health in this invisible obstetric population visible.

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