Providing Care for Women With Disabilities During the Perinatal Period

Purpose

Women with disabilities account for approximately 12% of the childbearing population and a substantial number intend to have children and experience the role of mother. However there are substantial barriers to achieving this goal for the majority of women with disabilities. Disabilities include physical, intellectual, sensory, and/or developmental. This presentation discusses the impact of disabilities on care during the perinatal period and how midwives and other health care providers can meet this growing and understudied need.

Methods

This evidence-based program was developed from available peer reviewed literature published in healthcare, legal and sociological journals and national and international government and non-governmental organization studies.

Findings

Greater than 1 million women of childbearing age in the U.S. report that they require assistance to complete activities of daily living Women who are disabled are greater risk for interpersonal violence (IPV), to live in poverty and to not complete their education Women with physical disabilities have lower rates of screening for breast and cervical cancer and are more likely to have unmet sexual and reproductive health care needs In fact women who are disabled are generally thought of as asexual. These ideas about women with disabilities are pervasive in society, even among health care providers. As such, providers rarely discuss sexual and reproductive health issues like contraception and pregnancy with their disabled patients. Equally, it is not uncommon for women with physical disabilities to experience negative reactions to their pregnancies from family members and health care providers. Many women with physical disabilities report receiving or finding little information about how their disability might affect their pregnancy/labor. The literature also suggests that many health care providers lack knowledge about the interaction of pregnancy, labor/birth, and disability.

Related to this, many of the participants in the reviewed studies noted that there was little communication between their perinatal care providers and those who provided them with disability-specific care (e.g., rehabilitation therapists), and, as a result, their care was very fragmented, as if their pregnancy and disability did not exist within the same body.

When providers are uneducated (or have negative attitudes about women with disabilities), care may be inadequate and lead to situations that can cause harm For instance, treating all women with physical disabilities as “high risk” and thus in need of increased medical intervention (e.g., assuming that a woman with a spinal cord injury must have a cesarean section) might not always be appropriate.

Many health care providers lack the appropriate information and training to adequately care for women with physical disabilities during the perinatal period and the overemphasis or ignorance of disability may be problematic.

In addition to attitudinal and informational barriers, many women with physical disabilities report encountering physical accessibility barriers during the perinatal period. Many women with physical disabilities report the absence of ramps, physically inaccessible delivery rooms, narrow doorways, and inaccessible ultrasound and examination tables and delivery beds (i.e., nonadjustable) and washrooms (particularly toilets and showers) as barriers to perinatal care.

Conclusion

Recommendations to made as a result of this review of the experience of women with disabilities during the perinatal period can be divided as follows:

Policy recommendations include assuring that accommodations for all women with disabilities be made available to access quality, cost effective care. This would include transportation with appropriate equipment, childcare, equipment for examinations that reduce the discomfort and allow for all exams to be completed efficiently and with minimal stress to the woman. Women with disabilities must have a voice at the table when laws and regulations are being considered to reflect the reality of the experience of people with disabilities.

Educational recommendations include incorporating useful and accurate information about what is known about disabilities, their impact on the perinatal period and interventions that improve health outcomes.

Research implications include further development of studies that evaluate the impact of healthcare interventions to improve health outcomes for women with disabilities, their children and families. Currently a dearth of studies exist.