Pregnancy and Physical Disability
By: Shona Kamps
Tags: Healthcare, Pregnancy, Disability

A lack of accessibility in the healthcare industry

“More than 60% of pregnancy-related deaths in the United States are preventable” (Slomski, 2019) . Poor data tracking, medical errors, lack of care coordination and harmful hospital cultures have resulted in the United States reporting the worst maternal mortality rate in the Global North. Spanning from prenatal care to postpartum care, mothers have struggled to gain the cultural and technical requirements for a safe pregnancy. The overlap between the sections of technical innovation and culture is interesting. The Alliance for Innovation on Maternal Health (AIM) has called for nation-wide “bundles” of best practice to be implemented in U.S hospitals, such as emergency carts prepared with the required drugs and equipment for maternal hemorrhaging (Slomski, 2019). The required drugs and equipment for maternal hemorrhaging does not differ from any other hemorrhaging. The difference is that young, healthy women uncommonly show typical bleeding signs, but the likelihood of the circumstance is greater than for those who are not pregnant. An emergency cart for maternal hemorrhaging is not a technical innovation, it is a change in the hospitals culture, reflecting patient safety prioritization. Luckily, Canada reports a lower rate of maternal mortality, at 7.3 per 100 000 live births, compared to 26.4 in the United States (Slomski, 2019). These improved numbers may be due to a variety of factors — potentially greater access to healthcare or longer maternity leaves. However, focusing on the technological overlap with social factors of poor maternal care in the United States presents a strong comparison to a more specific group, within North America as a whole: pregnant women with disabilities.

My interest in healthcare, women’s empowerment and biomechanical engineering all tied together last year when I contacted the author of a paper related to unmet needs of pregnant women with disabilities and the director of a local pregnancy clinic specialized for accessibility. Both women were extremely passionate about improving the health of women with disabilities and provided thoughtful insight into the required societal and technical shifts for improved access to healthcare. These contacts opened up to a network of technologists, nurses, and a mother with cerebral palsy, all involved with pregnancy and disability. These streams of information made it clear that the gap in North American healthcare for pregnant women with disabilities was built on the overlap between cultural and technological needs, and strongly reflect current issues with maternal health in the United States.

The Culture

When researching issues within pregnancy and disability on paper, minimal information can be found. Throughout research, a mother commented that, as modern medicine improves quality and longevity of life, more women are choosing to have children. The circumstances of pregnancy and mothers with disabilities is now overlapping at a higher frequency than in the past. The lack of attention on pregnancy with disabilities may have caused a lack of education for healthcare professionals. A study done on the unmet needs of women with disabilities during pregnancy included the reflections of several women’s experiences. One woman reported being thought of as “asexual, incapable of bearing children and being a mother” (Mitra et al., 2016). Another reflection stated “You have to advocate, you have to do your homework, you have to know, you know, what you need so that you can explain it to them and know when they’re off base.” (Mitra et al., 2016). Lastly, the mother I connected with commented that healthcare workers are geared to cure those who are unhealthy. Training to care for those who do not require a cure is an unbeaten path. A need for improved education on disability awareness is essential in healthcare settings. The requirement for women to self-advocate and remain assertive throughout their pregnancy cries for more education of healthcare workers on the subject.

The Technology

Women with physical disabilities are at higher risk for preterm birth. Transvaginal ultrasounds are an effective measure to help proactively identify risk to take preventative medical action. Currently, to receive a transvaginal ultrasound, women bend their knees and put their feet either on the ultrasound table or onto flimsy foot supports that extend from the table. With no actual leg support, women with limited mobility require 2 extra assistants for support, in addition to the ultrasound technologist. That’s 3 medical professionals for a procedure that otherwise would only require 1 — talk about room for optimization. Hospital staff have even tried, and failed, to move birthing beds with leg stirrups to the ultrasound room for support. A technical solution is begging to be implemented. Furthermore, think about the mental state of the patient. A transvaginal ultrasound is not a procedure that should be complicated, messy, and popularly attended. When speaking to one mother who has gone through this process, she recalled “You leave your dignity at the door.”

This is one example of the many technical struggles women with disabilities face in the healthcare industry. I consider this comparable to the patient “bundles” implemented in the US. The emergency hemorrhage carts were developed from equipment and medicines that already existed but were not used effectively for the specific group of maternal patients. Similarly, stirrup supports exist in birthing rooms but are not effectively being used in ultrasound rooms. This shows the overlap between technology and culture. Designing for universality would meet the requirements of all patients, yet perhaps a lack of cultural recognition has shadowed the need.

Closing thoughts

Gaps in the healthcare system in maternal health are starting to be addressed in the United States through technical and cultural calls to action, driven through the recognition of a need. Physicians have moved to “catalyze new types of partnerships to listen to women” and organizations such as AIM have started expanding its national maternal safety effort (Slomski, A. 2019). A similar call to action is required for pregnant women with disabilities across North America. Hospitals should be prepared, educated and welcoming to pregnant women with disabilities. Technology should be driven for universality. By learning from past and ongoing examples, we can to bridge the gap between cultural and technical barriers. The lack of accessibility to healthcare for pregnant women with physical disabilities needs to be addressed through both advocacy and innovation.

References

Mitra, M., Long-Bellil, L. M., Iezzoni, L. I., Smeltzer, S. C., & Smith, L. D. (2016). Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disability and Health Journal, 9(3), 457–463. https://doi.org/10.1016/j.dhjo.2015.12.007

Slomski, A. (2019). Why Do Hundreds of US Women Die Annually in Childbirth? JAMA, 321(13), 1239–1241. https://doi.org/10.1001/jama.2019.0714