Navigating the world with a physical or intellectual disability is hard enough. But for the 1 million American women living with disabilities who are of childbearing age, navigating the labyrinth of reproductive care, family planning and health care can leave them feeling frustrated, humiliated and unheard.
As a result, women in this group face a troubling lack of access to quality reproductive and family planning care that can have dire consequences for their well-being, and the well-being of their babies. It’s precisely the narrative that Jeanne Alhusen – an associate professor in the University of Virginia’s School of Nursing who earned a $1.9 million National Institutes of Health grant to study these women’s experiences – hopes to change.
“People often ignore the fact that many, many women living with disabilities both want to and are having children,” said Alhusen, who spent the last three years documenting the experiences of women with disabilities, and earned funding from the Eunice Kennedy Shriver National Institute of Child Health in late March. “But because getting reproductive care is either so onerous it’s avoided, or so perfunctory that it’s ineffective, these women and their children are suffering the consequences while pregnant, after birth and well beyond.”
About 12% of American women of childbearing age live with some kind of disability, from physical disabilities, like a spinal cord injury or cerebral palsy, to intellectual disabilities, like Down syndrome, to sensory disabilities, like blindness and deafness. Alhusen’s previous NIH-funded research, which provides the foundation for her new grant, found that women with disabilities lack access to reproductive care and family planning for a variety of reasons, including provider bias and discomfort, a lack of privacy, financial limitations, and inaccessible equipment, like exam tables and examination tools.
Proving optimum care for this understudied group of women, Alhusen said, requires clinicians to have a more nuanced understanding and acknowledgement of the issues they face. Women with disabilities experience dramatically higher rates of psychosocial stress, including exposure to physical and sexual violence, and mental health issues like depression and other mood disorders. They’re 1.4 times more likely to experience an unintended pregnancy than women without disabilities, a factor that increases these women’s risk of negative outcomes, including preterm birth and low birth weight babies, and infants who require NICU admission, have cognitive delays, and experience difficulty with bonding and attachment.
Nearly one-third of the disabled women Alhusen interviewed attributed their unintended pregnancy to sexual violence, including forced sex and reproductive coercion, but said care providers never asked them about it and rarely inquired about or acknowledged depressive symptoms. One woman told Alhusen her clinician “missed every flag I was so desperately trying to wave,” while others described the lack of access to safety planning resources, one of the mostly widely recommended interventions for people experiencing intimate partner violence.
Working with co-investigator Kathryn Laughon, an associate professor of nursing and violence expert, Alhusen’s new study will examine the association between exposure to violence and mood disorders and adverse birth outcomes in women with disabilities. Using population-based data, she will examine these relationships by disability type. Her team will also explore the range of barriers these women face, and, through in-depth interviews, explore care providers’ attitudes, understanding and experiences treating women with disabilities. Unintended pregnancy is strongly associated with intimate partner violence and Alhusen plans to examine the unique risks women with disabilities encounter and how health care providers can better care for these women.
Alhusen’s ultimate goal is to improve the quality of the pre- and post-natal care this group of women receive, ultimately framing systems and policy solutions to improve their access to care and best practices for clinicians to treat them.
The first-of-its-kind analysis will add to the knowledge base built from Alhusen’s previous studies, which found that disabled women are more than 2.5 times more likely to have sterilization procedures, 43% less likely to use an oral contraceptive, and nearly two times more likely than their non-disabled peers not to use any contraceptive method at all.
The study will run through 2026.