Health Care Experiences of Patients With Spinal Cord Injury in the Preconception, Antepartum, and Postpartum Period

Women comprise approximately 20% of all adults living with spinal cord injury (SCI), and incidence of SCI among women continues to increase annually. Despite the profound impact of SCI on women in their reproductive years, there is a paucity of literature on the unique health care needs and concerns in this population. We examined the health care experiences of these patients, spanning the preconception to postpartum period.

Data was obtained from a large online observational questionnaire examining reproductive health outcomes of people with SCI between 2019 and 2021. Overall, 167 women with pre-pregnancy SCI were surveyed across a total of 257 singleton pregnancies resulting in live birth. Quantitative and qualitative survey questions were statistically analyzed.

Over half of respondents felt they had little to no access to informational resources about SCI in pregnancy, and over 34% requested a pre-pregnancy consultation with a health care provider. The most frequently reported positive experiences in the perinatal period revolved around feeling supported by their health care team and having access to specialized, knowledgeable obstetrical providers. The most frequently cited negative experiences were judgment by the health care team and physical accessibility issues in clinics and labour and delivery units. Postpartum, a minority of respondents indicated feeling stigmatized due to their SCI.

Women with SCI face unique challenges and concerns in interacting with the health care system during pregnancy and pregnancy planning. Understanding what health care providers are doing to foster and hinder a positive experience for these patients is the first step in creating a more supportive environment.