DOI: 10.1177/01939459261472970 ISSN: 0193-9459

Pregnancy and Early Parenting Experiences of Persons With Disabilities

Jamille Prevete, Kathryn Laughon, Rosemary B. Hughes, Jeanne L. Alhusen
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Background:

Persons with disabilities (PWD) are as likely as their nondisabled peers to become pregnant, yet their experiences of pregnancy and early parenthood remain poorly understood. We aimed to explore the experiences of PWD during pregnancy and the postpartum period, with particular attention to managing their health and their children’s health, and to parenting with a disability.

Methods:

This qualitative descriptive study was part of a mixed-methods study focused on psychosocial risks and maternal-infant outcomes among PWD. We completed semi-structured interviews with 45 PWD who were currently or recently pregnant.

Findings:

We identified 3 interrelated themes. Pregnancy-Related Changes Shaping Disability Experiences and Psychological Well-Being described how pregnancy destabilized strategies for managing disability symptoms, leading to symptom exacerbation and uncertainty with limited disability-informed health guidance. Forced Tradeoffs Between Maternal Health, Functioning, and Fetal or Infant Well-Being captured participants’ experiences weighing medication use, mobility, and symptom control against risks to fetal development and infant safety, often without clear clinical evidence or support. Parenting Within Contexts of Surveillance, Self-Advocacy, and Systemic Gaps in Support reflected heightened scrutiny, fears of child protective services involvement, and reliance on self-advocacy and informal networks to compensate for gaps in formal supports.

Conclusion:

Together, these findings demonstrate that perinatal and early parenting experiences for people with disabilities are shaped by interacting social, clinical, and structural barriers. For nurses, these findings underscore the importance of disability-informed perinatal systems that integrate accessible clinical guidance, inclusive care practices, and structural supports that value the expertise and parenting capacities of PWD.

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