Pregnancy recommendations from women with intellectual and developmental disabilities to their peers

As recent as the mid-twentieth century, eugenics practices on women with intellectual and developmental disabilities were commonplace. Deinstitutionalization has led to an increasing proportion of women with intellectual and developmental disabilities living in the community and becoming pregnant. Previous research has reported barriers to maternal health care (i.e., perceived provider stigma, inadequate communication, stress surrounding child protective services involvement, and financial strain). Research shows that this population is at increased risk of adverse outcomes including preterm delivery, low birth weight babies, and maternal mortality.

This study aimed to explore recommendations from mothers with intellectual and developmental disabilities for other women to potentially improve pregnancy experiences for this population.

We conducted semi-structured individual interviews among 16 women with intellectual and developmental disabilities. Data were coded using a content analysis process and iteratively analyzed using inductive and deductive techniques to determine emergent themes.

Participants offered recommendations for navigating pregnancy to their peers who are pregnant, or thinking about becoming pregnant. Themes included: (1) planning for birth; (2) advocating at the point-of-care; (3) seeking supports and services; (4) interacting with child protective services; (5) communicating with providers; and (6) exhibiting resilience.

Our study highlights recommendations for improving pregnancy experiences of women with intellectual and developmental disabilities. Informed by the lived pregnancy experiences of our participants, these recommendations can inform clinician training, new guidelines, and services to support and improve pregnancy experiences for women with intellectual and developmental disabilities.