Research Paper
Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy

https://doi.org/10.1016/j.dhjo.2015.12.007Get rights and content

Abstract

Background

Despite concerns raised in the literature on the adverse pregnancy outcomes of women with physical disabilities, there is little information about unmet needs of women with physical disabilities during pregnancy and childbirth.

Objective

This article provides an in-depth examination of unmet health care needs during and around the time of pregnancy among a sample of women with physical disabilities. It also offers recommendations to other women with physical disabilities who are considering pregnancy.

Methods

Twenty-five phone interviews were conducted with women with physical disabilities from across the United States who had a baby in the past ten years. Individual semi-structured qualitative interviews lasting about 2 h were conducted. Interviews were audio-recorded, transcribed, and analyzed using an iterative, interpretive process.

Results

Women reported a wide range of disabling conditions. Analysis revealed three broad themes related to unmet needs during pregnancy among women with physical disabilities. They included (1) clinician knowledge and attitudes, (2) physical accessibility of health care facilities and equipment, (3) need for information related to pregnancy and postpartum supports. The women also provided recommendations to other women with disabilities who are currently pregnant or thinking of becoming pregnant. Recommendations related to finding a clinician one trusts, seeking peer support, self-advocating, and preparing oneself for the baby.

Conclusions

This study sheds light on the unmet needs and barriers to care of women with mobility disabilities during pregnancy and childbirth. The study findings highlight the need for policy and practice recommendations for perinatal care of women with mobility disabilities.

Section snippets

Methods

The study was approved by the University of Massachusetts Medical School Institutional Review Board.

Participant characteristics

The average age of the women at the time of the youngest child's birth was 32. Nearly half of the women had children between the ages of 5–10, and two were pregnant with their second child at the time of the interview. Fifteen women had a pregnancy which was planned and ten unplanned. Twenty had fathers present in the lives of their child and five fathers were not present (see Table 1).

Women in the study reported a range of disabling conditions including dwarfism, muscular dystrophy,

Discussion

This study used qualitative methodology to examine the perinatal care experiences of US women with physical disabilities. The results of the study highlight their unmet needs for care, information, and support during their pregnancy and at postpartum. Consistent with findings from earlier studies, these women reported several barriers to a positive, healthy pregnancy experience. The barriers included clinicians' lack of knowledge and their attitudes, inaccessible offices and equipment,

Limitations

A major limitation of this study is that the women were all volunteers, which introduces the possibility of selection bias. It may be that women who participated were those who felt good about their experiences with childbirth, despite the challenges they may have encountered. Women who felt less positive about their experiences or had worse outcomes may have chosen not to participate. Since women were recruited using social media, disability-related organizations, and community-based

Conclusion

Just as public policy has evolved in the direction of encouraging individuals with disabilities to work, so it should support the aspiration of many women with disabilities to become parents. Clinicians should be provided the education necessary to prepare them to care for these women and both formal and informal supports should be made more widely available. The study also highlights a critical need for information on the potential impact of disability on pregnancy. In order to address the

References (29)

  • R. Basson

    Sexual health of women with disabilities

    Can Med Assoc J

    (1998)
  • S.L. Welner et al.

    Welner's Guide to the Care of Women With Disabilities

    (2004)
  • L.T. Barker et al.

    Challenges and Strategies of Disabled Parents: Findings From a National Survey of Parents With Disabilities: Final Report

    (1997)
  • M. Nosek et al.

    National study of women with physical disabilities: final report

    Sex Disabil

    (2001)
  • Cited by (87)

    • Obstetric and Gynecologic Care for Individuals with Disabilities

      2024, Obstetrics and Gynecology Clinics of North America
    • Laws Are Not Enough

      2023, Journal for Nurse Practitioners
    View all citing articles on Scopus

    Financial disclosure: Authors have no financial interests to disclose.

    This research is funded by a grant from the National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health & Human Development. Award Number: R01HD074581.

    View full text