Experiences of Women With Physical Disabilities Related to Pregnancy

Monday, 31 July 2017: 10:55 AM

Suzanne C. Smeltzer, EdD, MS, RN, ANEF, FAAN
College of Nursing, Villanova University, Villanova, PA, USA
Monika Mitra, PhD
Lurie Institute for Disability Policy, Heller School for Social Policy and Management, Brandeis University, Waltham, MA, USA
Lisa I. Iezzoni, MD
Department of Medicine, Harvard Medical School and Massachusetts General Hospital, Boston, MA, USA
Linda Long-Bellil, PhD
Center for Health Policy and Research, University of Massachusetts Medical School, Shrewsbury, MA, USA
Lauren D. Smith, MPH
Lurie Institute for Disability Policy Heller School for Social Policy and Management,, Brandeis University, Waltham, MA, USA

Purpose:  The purpose of this IRB-approved study was to explore the pregnancy-related experiences of women with physical disabilities by obtaining their descriptions and perceptions of their experiences during the perinatal period as well as their recommendations for obstetric clinicians to improve perinatal care of women with physical disabilities. This study is significant because generations of women with disabilities have experienced barriers to health care, including in accessible offices, problematic interactions with health care providers and negative responses related to pregnancy and childbearing from health care professionals and others (Iezzoni, wint, Smeltzer & Ecker, 2015; Mitra, Long-Bellil, Smeltzer, & Iezzoni, 2015).

Methods:  This qualitative descriptive study (Colorafi & Evans, 2016), which is part of a larger mixed-method study of pregnancy-related experiences of women with physical disabilities, was conducted through telephone interview. Women with physical disabilities were recruited for the study through a variety of social media sites and contacts with community-based disability organizations. Thirty-one women responded to the invitation to participate. Following screening, 25 women who met the inclusion criteria of having delivered a newborn within the last 10 years, having a mobility limitation, and being between the ages of 21 and 55 at the time of the study were interviewed by phone.

Individual interviews were conducted by two members of the research team using a semi-structured interview guide based on literature, a preliminary focus group, and the results of the researchers’ previous research and experience working with women with disabilities. Among other topics related to perinatal experiences, women were asked about their interactions with obstetric clinicians (obstetricians, nurse midwives, nurse practitioners, nurses) during pregnancy; they were also asked for recommendations for clinicians about how to ensure positive perinatal experiences for women with physical disabilities. Traditional content analysis was used to analyze the transcriptions of the interviews. The transcriptions of the interviews were independently read by members of the research team to identify salient points. The research team then used those salient points to identify categories of concerns related to interaction with clinicians and recommendations related to those concerns made by women for the health care providers. The transcriptions were again reviewed to identify specific examples of their interactions and the recommendations provided by the women. Codes were continuously revised and final themes with supporting examples of women’s quotes were identified.

Results: The mean age of women in the study at the time their youngest child was born was 37.4 + 7.0. Fifteen women reported that their pregnancies were planned and ten reported unplanned pregnancies. Women reported diverse disabling conditions causing physical disability. Three themes emerged from analysis of the interview data: 1) clinicians’ lack of knowledge about pregnancy-related needs of women with physical disabilities; 2) clinicians’ failure to consider knowledge, experience and expertise of women about their own disability; and 3) clinicians’ overall lack of awareness of reproductive concerns of women with physical disabilities. Women provided specific recommendations related to each of these themes and warrant attention by clinicians who interact with women of childbearing years who live with physical disabilities.

Conclusion: Women experienced problematic interactions with clinicians related to pregnancy and childbearing. They identified specific recommendations for clinicians to address those problems with the goal of improving perinatal health care for women with disabilities. These recommendations, if followed have the potential to improve the health of women with disabilities during the perinatal period