Children of Disabled Mothers Often Do Not Receive Proper Medical Care: Study

Doctors need to understand and adapt to the barriers disabled mothers face at getting preventative care for their children, researchers warn.

Mothers with intellectual or developmental disorders (IDD) are more likely to face difficulties ensuring their children receive regular well-child visits, immunizations and other preventive care, according to the findings of new research.

In a study published this week in the journal of the American Academy of Pediatrics, a team of Canadian researchers evaluated the access to such preventive care among children of mothers without disabilities, compared to those of mothers with:

• Physical disabilities, including congenital anomalies like spina bifida, club foot or congenital heart disease
• Musculoskeletal disorders, such as osteoarthritis, rheumatoid arthritis and sarcopenia
• Neurologic conditions, like epilepsy, Alzheimer’s disease and brain tumors
• Permanent injuries, such as traumatic brain injury, amputation and nerve damage
• Sensory disabilities, like hearing or vision loss
• Intellectual or developmental disorders, including autism spectrum disorder, chromosomal anomalies and fetal alcohol spectrum disorder

The findings show that women who experience these types of disabilities face barriers to maintaining ongoing preventive care for their children, such as trouble remembering appointments, following up for immunizations, and securing transportation to and from appointments.

Researchers from the University of Toronto Scarborough, led by Dr. Hilary K. Brown, compared well-care visits and routine immunizations for children born to women with disabilities and women without disabilities. The study compared data from children born in Ontario, Canada from 2012 to 2019.

Roughly 56% of children born to mothers with intellectual or developmental disorders received regular well-care visits compared to 63% of children born to mothers without disabilities. The same thing was seen for routine immunizations, with about 44% of children born to mothers with disabilities receiving regular immunizations by the age of two, compared to 54% of children born to women with no disabilities.

When comparing enhanced 18-month developmental assessments, 52% of children of disabled mothers received the assessments compared to 61% of children whose mothers did not have disabilities.

The same was seen for children receiving any type of developmental screening. Only about 55% of children born to moms who had a disability received the screenings compared to 63% of children born to moms who did not have disabilities.

Better Access to Healthcare Needed for Disabled Mothers

In its conclusions, Brown’s team emphasized the need for future research focused on providing better access to care for these families.

“Women with IDD experience many barriers to preventive health care, including social (eg, poverty), structural (eg, negative provider attitudes, lack of accessible education to understand the benefits of preventive health care), and practical issues (eg, lack of transportation),” the researchers determined. “Difficulties with organizational skills and memory may also make it challenging to remember appointments, particularly when providers do not facilitate access through supports such as reminders. Although these barriers have only been studied in the context of preventive health care for women, it is possible these barriers extend to child preventive health care.”

The researchers recommended training for doctors who deliver preventive care to better understand the needs of mothers with disabilities, and called for the establishment of programs that offer practical assistance like appointment reminders and transportation vouchers.