Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities

Abstract

Background Effective provider-patient communication is a key element of quality health care, including perinatal care. What constitutes “effective communication” in perinatal care may vary according to the population seeking care, such as women with intellectual and developmental disabilities (IDD) and sensory disabilities. Research broadly indicates that communication issues are among the barriers to perinatal care experienced by women with disabilities. However, few studies have explicitly explored their communication experiences in this context. The purpose of this study was to understand the communication experiences of birthing people with IDD and/or sensory disabilities in perinatal care. Methods We conducted semi-structured interviews with 17 people with IDD (e.g., autism, cognitive delay) and/or sensory disabilities (e.g., d/Deaf, blind) in Ontario, Canada, who had recently given birth, to explore barriers to and facilitators of effective communication in perinatal care. A combination of deductive and inductive thematic analysis guided data analysis. Results We found that birthing people with IDD and/or sensory disabilities encountered multiple barriers to effective communication in perinatal care, namely, lack of policies and guidelines, lack of provider experience, lack of provider effort, as well as ableism and provider assumptions. Facilitators included knowledgeable, aware, and supportive providers; access to communication aids and services; tailoring information to patients’ disability-related communication needs; empathic communication; and, communication among providers. Conclusion Unmet communication needs may contribute to negative health and social outcomes for birthing people with disabilities and their newborns. Accessibility policy implementation and practice change are needed to meet the communication needs of people with IDD and/or sensory disabilities in perinatal care to ensure positive experiences and outcomes.

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

“…First, the accessibility needs of people with disabilities must be met. This includes care spaces that are accessible to people with physical and sensory disabilities (e.g., post‐birth recovery room, NICUs, paediatrician's offices) (Tarasoff, 2017), ASL interpreters and tactile or technological resources for people with sensory disabilities, and multiple communication options for people with intellectual/developmental disabilities (e.g., simple sentences, image‐based materials) (Andrews et al, 2021; Saeed et al, 2022). Second, care should be multidisciplinary, with coordination across perinatal and allied health care providers, disability‐specific providers (e.g., rheumatologists), and disability and social services (Mitra, 2017).…”

“…Specifically, we followed a reflexive thematic analysis approach, wherein we aimed to “provide a coherent and compelling interpretation of the data, grounded in the data,” while accounting for our active role in the knowledge production process (Braun et al, 2018, p. 6). As a research team comprised of peer researchers and senior and junior researchers with expertise in public health, psychology, perinatal health, and disability, we were reflexive of our lived experiences and knowledge of related research, including prior research conducted by our team (e.g., Saeed et al, 2022; Tarasoff, 2017), during data collection and analysis.…”

“…Qualitative studies conducted in numerous countries, including the United States, Canada, Ireland, Nepal, and Cameroon, have documented care‐related challenges experienced by people with disabilities in pregnancy (Heideveld‐Gerritsen et al, 2021; Kazembe et al, 2022; Malouf, McLeish, et al, 2017); barriers to prenatal care experienced by people with disabilities include fragmented care, unmet physical accessibility and communication needs, and negative provider attitudes (Saeed et al, 2022;). Few studies have focused on postpartum care specifically.…”

Depressive symptoms during the perinatal period by disability status: Findings from the United States Pregnancy Risk Assessment Monitoring System

“…Women with disabilities also face multiple unremitting barriers to receiving equitable care including physical or health system barriers such as inaccessible medical facilities and equipment, lack of interpreter services and other communication barriers, financial limitations and widespread discriminatory attitudes and biases of providers who question their ability for pregnancy, childbirth and parenting (Saeed et al, 2022 ; Tarasoff, 2017 ). Moreover, clinical tools may not be accessible to them.…”

Reducing preventable adverse events in obstetrics by improving interprofessional communication skills – Results of an intervention study

“…Faulty communication behavior is exacerbated by rapid team changes, high workloads, and lack of mutual respect. Lack of communication training and awareness of its importance leads to loss of essential information and compromises patient safety [ 7 , 8 ]. PAEs can be attributed to inadequate communication in up to 70% of cases [ 9 ].…”