Advocating for a Care-Based Ethic: Stories of Pregnancy and Birth from Caregivers of Children with Down Syndrome

Authors

• Lydia Ocasio-Stoutenburg, The Pennsylvania State UniversityFollow
• Nayma Sultana Mim, The Pennsylvania State UniversityFollow

Abstract

Down syndrome (DS) impacts about 1 in every 640 childbirths in the United States. While quality of life has improved for people with DS, systemic inequities and deficit-based perceptions have persisted throughout history, with material impacts on people with DS and their caregivers. Researchers have documented how caregivers of children with DS have had negative experiences with healthcare providers and genetic counselors, whose biased views about DS translate into subtle and overt pressures. Few studies explicitly focus on the experiences of Caregivers of Color, multilingual families, as well as families with varying economic experiences who have children with DS. This qualitative inquiry examined nine caregivers’ pregnancy and birth experiences, employing critical and intersectional methodological approaches. We inductively analyzed data collected from interviews, observations, and researcher memos, mapping them onto a cure versus care ethical framework. Four themes illuminated the persistence of cure-seeking and deficit-laden attitudes providers held about DS, which included pressuring mothers to terminate, reprimanding them for refusing invasive testing, and asking intrusive questions that disregarded their emotions, all under the veil of care. These experiences were magnified among Caregivers of Color, who described how their concerns and autonomy were dismissed. This study offers important ethical implications for researchers, health care practitioners, families, and community members who engage caregivers of children with DS, emphasizing that care should not begin or end in the delivery room.

Plain Language Summary

In the United States, 1 in every 640 people have Down syndrome. Health, jobs, and other parts of life are better for people with Down syndrome than they were in the past. But negative views and attitudes toward people with Down syndrome still exist. Medical tests have gotten better, so mothers can find out if they are having a child with Down syndrome. In our study, we talked to nine families of children with Down syndrome. We wanted to learn about their pregnancies and the birth of their children. Some caregivers felt the doctors did not listen to them. Some doctors tried to pressure mothers to not have their children if they had Down syndrome. Some families said other people showed them care. Some families did not even have the chance to test and get care. Families of Color of children with Down syndrome experienced more barriers. We want researchers, doctors, families, and other people to learn from the families who shared their stories in this study, so that they can support families better.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Recommended Citation

Ocasio-Stoutenburg, Lydia and Sultana Mim, Nayma (2026) "Advocating for a Care-Based Ethic: Stories of Pregnancy and Birth from Caregivers of Children with Down Syndrome," Developmental Disabilities Network Journal: Vol. 5: Iss. 2, Article 24.
DOI: 10.59620/2694-1104.1157
Available at: https://digitalcommons.usu.edu/ddnj/vol5/iss2/24