Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities

Abstract

Aim: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives.

Design: A qualitative study with semi-structured interviews.

Methods: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes.

Results: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance.

Conclusion: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns.

Impact: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required.

Reporting method: Consolidated criteria for reporting qualitative research (COREQ).

Patient or public contribution: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

Keywords: accessibility; breastfeeding; care experiences; disability; mental health; newborn care; nursing; postpartum care; women with disabilities.