Pregnancy care for women with disabilities in Ontario: Patient and provider perspectives

Abstract

Objectives Increasing numbers of women with disabilities are becoming pregnant, and they are more likely than other women to experience perinatal complications. This study aimed to understand the pregnancy and delivery care experiences and needs of women with disabilities, from the perspective of patients and care providers. Methods Semi-structured interviews were conducted with a purposive sample of women with physical (n=10), sensory (n=3), and intellectual/developmental (n=7) disabilities in Ontario who had given birth within the last 5 years, and with providers (e.g., obstetrician-gynecologists, nurses, family physicians, n=12). Patient interviews investigated care experiences, including what services were accessed, if services met their needs, and recommendations to improve care. Provider interviews examined care provision experiences and challenges. We conducted thematic analysis to identify commonalities across patient and provider interviews. Results Women with disabilities identified care barriers and unmet needs during pregnancy and delivery, including a lack of coordinated care and providers with limited knowledge about disability. Several of these issues were also identified by providers; notably, most providers had not received any formal disability-related training and many shared that coordinating obstetrical care with disability-related care and services (e.g., rheumatology, respirology, transportation) for women with disabilities was challenging, especially in (financial and human) resource-limited care settings. Conclusions This study highlights provider- and system-level barriers to obstetrical care for women with disabilities, including lack of care coordination and disability training for providers. Addressing these barriers may improve care experiences for women with disabilities, ultimately improving their pregnancy and delivery outcomes. Increasing numbers of women with disabilities are becoming pregnant, and they are more likely than other women to experience perinatal complications. This study aimed to understand the pregnancy and delivery care experiences and needs of women with disabilities, from the perspective of patients and care providers. Semi-structured interviews were conducted with a purposive sample of women with physical (n=10), sensory (n=3), and intellectual/developmental (n=7) disabilities in Ontario who had given birth within the last 5 years, and with providers (e.g., obstetrician-gynecologists, nurses, family physicians, n=12). Patient interviews investigated care experiences, including what services were accessed, if services met their needs, and recommendations to improve care. Provider interviews examined care provision experiences and challenges. We conducted thematic analysis to identify commonalities across patient and provider interviews. Women with disabilities identified care barriers and unmet needs during pregnancy and delivery, including a lack of coordinated care and providers with limited knowledge about disability. Several of these issues were also identified by providers; notably, most providers had not received any formal disability-related training and many shared that coordinating obstetrical care with disability-related care and services (e.g., rheumatology, respirology, transportation) for women with disabilities was challenging, especially in (financial and human) resource-limited care settings. This study highlights provider- and system-level barriers to obstetrical care for women with disabilities, including lack of care coordination and disability training for providers. Addressing these barriers may improve care experiences for women with disabilities, ultimately improving their pregnancy and delivery outcomes.