2025 Theses Doctoral

Perinatal Health Experiences and Outcomes Among Black and Hispanic Women with Disabilities

Harkins, Sarah Elizabeth

BACKGROUND:
A long and continued history of systemic racism in the United States has contributed to stark racial and ethnic disparities in adverse perinatal health outcomes. Women with disabilities also experience a high burden of adverse perinatal health outcomes and continue to encounter disability-based discrimination (i.e., ableism) in healthcare. However, little is known about the perinatal health of Black and Hispanic women with disabilities. This is a significant gap in knowledge, as women who experience the compounded influence of racism and ableism may have an increased risk of adverse perinatal health outcomes. Therefore, the overall purpose of this dissertation was to study the pregnancy and postpartum experiences and outcomes of Black and Hispanic women with disabilities. The aims were to: (1) synthesize studies describing the perinatal healthcare experiences of people with physical, sensory, and/or intellectual and developmental disabilities to identify shared and unique care needs; (2) examine the associations between maternal disability status and adverse pregnancy outcomes among Black and Hispanic women; and (3) examine the associations between maternal disability status and attendance at a four-to-six-week postpartum health visit among Black and Hispanic women.

METHODS:
We conducted three studies in this dissertation: (1) a meta-synthesis of the qualitative literature following Sandelowski and Barroso’s methods to synthesize the perinatal healthcare experiences of people with disabilities in the United States and Canada; (2) a secondary analysis of Pregnancy Risk Assessment Monitoring System (PRAMS) surveys and multivariable logistic regression to estimate the odds of preterm birth, low birthweight, and small for gestational age by overall disability, reported level of difficulty, and disability type; (3) a secondary analysis of PRAMS surveys and multivariable logistic regression to estimate the odds of attendance at a four-to-six-week postpartum health visit also by overall disability, reported level of difficulty, and disability type. In the quantitative Aims 2 and 3, disability was measured with the Washington Group-Short Set of Questions on Functioning (WG-SS), a self-report survey which asks respondents to rate the level of difficulty they experience in six domains of functioning (i.e., vision, hearing, mobility, cognition, self-care, and communication).

RESULTS:
In Aim 1, we identified 21 studies and synthesized three overarching themes: (1) Pervasive Ableism, (2) An Uninformed and Unaccommodating Experience, and (3) Resilience in the Face of Ableism. We also identified subthemes describing unique experiences by disability type, such as the nature of perinatal healthcare inaccessibility. In addition, we found that minoritized people with disabilities often reported stigmatizing experiences with clinicians. In Aim 2 (N=8,747), we found no statistically significant differences in the odds of preterm birth or low birthweight by overall disability, reported level of difficulty, or type of disability, including multiple disabilities. Women with any disability were 44% less likely to have a small for gestational age infant compared to women without disabilities. The odds of having a small for gestational age infant were significantly higher among women who reported ‘some difficulty’ to any WG-SS item compared to women who reported ‘no difficulty’ to all items. However, we did not observe this association among women who reported ‘a lot of difficulty’ on the WG-SS. In addition, women who reported a communication disability were 70% less likely to have a small for gestational age infant compared to women without disabilities. Further, Black women with any disability were 50% less likely to have a small for gestational age infant compared to Black women without disabilities. There were no significant differences in small for gestational age among Hispanic women with and without disabilities. In Aim 3 (N=9,034), we found that women with any disability were 62% less likely to attend a four-to-six-week postpartum health visit compared to women without disabilities. We also observed a significant decrease in the odds of attending the visit as women’s reported level of difficulty increased. Specifically, women who reported ‘some difficulty’ to any WG-SS item were 28% less likely to attend, while women who reported ‘a lot of difficulty’ were 67% less likely to attend the visit compared to women who reported ‘no difficulty’ to all items. In analyses by disability type, women who reported blindness/low vision, cognition disability, communication disability, or multiple disabilities were significantly less likely to attend the visit relative to women without disabilities. In within-group analyses, Black women with any disability were 52% less likely to attend compared to Black women without disabilities. Hispanic women with any disability were 72% less likely to attend compared to Hispanic women without disabilities.

CONCLUSIONS:
Our findings suggest that Black and Hispanic women with disabilities experience stigmatizing encounters with clinicians and this intersectional oppression may contribute to perinatal health inequities. Although we found inconsistent evidence supporting the associations between maternal disability and adverse pregnancy outcomes, there were stark inequities in attending a four-to-six-week postpartum health visit by disability status in all analyses. Therefore, there is an urgent need to understand the barriers to postpartum healthcare for Black and Hispanic women with disabilities to prevent maternal morbidity and mortality. This dissertation contributes to the sparse published literature on the perinatal health of Black and Hispanic women with disabilities and provides preliminary evidence to inform clinical practice, policy, and future research to advance perinatal health equity.