Guest post by Nabanita Hossain
As a fourth year medical student going into pediatrics, I can tell you a lot about ADHD. Throughout medical school, I received many lectures on how children with ADHD present in office or in their classrooms. I was taught how to diagnose and treat ADHD and learned how to be an advocate for children with ADHD who have difficulty focusing in school. I also discussed how to advocate for parents who are taking care of these children. We spend a lot of time focusing on ADHD in medical school, especially when it comes to pediatrics, but we do not spend nearly as much time on other developmental issues or disabilities.
Medical school did not teach me how to properly advocate for children with different disabilities, such as cerebral palsy or motor disabilities. I did not learn any care-giving techniques to teach parents who take care of children with other intellectual or developmental disabilities. I believe that medical education must include more information on people with disabilities and on how we as physicians can advocate for their needs.
People with disabilities account for 26 percent of the general population in the United States, making them the largest minority group in this country (1). This statistic includes people with mobility issues, cognitive disabilities, difficulties with independent living and self-care, difficulty hearing, and vision issues. They can be affected by their disabilities when it comes to accessing food, education, and even healthcare. According to the CDC, adults living with disabilities are more likely to have obesity, smoke, heave heart disease, and have diabetes (1). Even though they are more likely to have these health problems, 33 percent of adults with disabilities do not have a regular healthcare provider and 25 percent did not have a routine checkup in the past year (1). Therefore, even though people with disabilities have higher rates of health concerns, they are less likely to access healthcare.
Disability affects not just the person with the disability. It also affects caretakers. According to the National Alliance for Caregiving and the AARP, 21.3 percent of Americans are caregivers to an adult or child each year (2). Over 75 percent of these caregivers are female (3). Caregivers spend over 57 hours a week caring for their family members with disabilities, which is more than a paid 40-hour work week (4). They may feel overwhelmed from the amount of care they have to provide, the lost income from this time, and the extra expenses that they incur from taking care of someone else. Disability, therefore, affects more than the aforementioned 26 percent of Americans – it affects those around them as well, and education on disabilities is necessary.
Caregiver education on disabilities has been proven to improve healthcare outcomes for people with disabilities. One study showed that providing education to caregivers regarding oral hygiene actually improved the oral hygiene of the people they were taking care of, who were individuals with intellectual disabilities (5). Another study found that caregivers who received education on how to care for individuals with hemodialysis reported that they felt less burden and improved caregiving outcomes (6). Therefore, caregiver education on disabilities can improve health outcomes.
Caregiver education can also lessen the caregiver burden and improve mental health. A study in Illinois caregivers showed that caregivers with unmet family support needs had an increased caregiving burden and decreased satisfaction. Additionally, caregivers who provided more unpaid care felt more caregiving burden (7). Therefore, if caregivers are given resources that help fill their unmet support needs, then we can decrease their burden and improve mental health. Learning about these resources can occur through resource libraries on the internet and through conversations with professionals who can direct caregivers to the resources that they need.
How can we, as physicians, fix the issues that our patients and their caregivers face if we do not know what questions to ask because we do not know to what extent the disability is affecting both groups of people? Georgetown University School of Medicine’s motto is cura personalis, or care of the whole person. We are taught a lot about the socioeconomic factors that play into health, such as not being able to access healthy foods, or not being able to find safe spaces to exercise in one’s neighborhood. Going forward as a practicing pediatrician, I will educate myself on the way that various disabilities can affect these socioeconomic factors of health. I will ask my patients questions about their health and their disabilities, and I will also ask questions about their education, their ability to socialize and play, and their hopes for the future. I will ensure that I inform myself of resources available to caregivers of patients so that they can decrease their caregiving burden, improve their mental health, and improve health outcomes for my patients. Only when I do this can I ensure that I take care of the whole person.
1 Centers for Disease Control and Prevention. (2020, September 16). Disability and Health Promotion: Disability Impacts All of Us. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
2 AARP and National Alliance for Caregiving. (2020, May). Caregiving in the United States 2020. https://doi.org/10.26419/ppi.00103.001
3 Institute on Aging. (2018). Read How IOA Views Aging in America. https://www.ioaging.org/aging-in-america
4 United Healthcare Community Plan. (2020, November 17). Caregiving for people with disabilities. https://www.uhccommunityplan.com/dual-eligible/caregivers/caregiving-for-people-with-disabilities
5 Flickert, N., and Ross, D. (2012). Effectiveness of a Caregiver Education Program on Providing Oral Care to Individuals with Intellectual and Developmental Disabilities. Intellectual Developmental Disabilities, 50(3), 219-232. https://doi.org/10.1352/1934-9556-50.3.219
6 Alnazly E. K. (2018). The impact of an educational intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and-post test. International journal of nursing sciences, 5(2), 144–150. https://doi.org/10.1016/j.ijnss.2018.03.007
7 Crabb, C., Owen, R., Stober, K., and Heller, T. (2020). Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care. Disability and Rehabilitation, 42(16), 2287-2294. https://doi.org/10.1080/09638288.2018.1557266