As parents, we do our best to keep our kids healthy and protect them from activities that may risk their health and safety. This is particularly true now with Covid 19, as we have all paid more attention to healthier habits like wearing masks and handwashing. For us as parents, this is of even greater concern because adults with disabilities experience healthcare disparities and poorer health outcomes than people without disabilities. We all know it’s important to be healthy, and we have learned lots of behaviors that promote a healthy lifestyle. But, people often forget, or may have never been told, why being healthy is so critical for their quality of life. One of the best ways we can bolster better health outcomes for the future is to begin now, so that our kids will be prepared for a healthy future.
Some families have been with the same pediatrician from the time they were newborns through adolescence. Moving from pediatric care to a healthcare provider for adults is daunting, especially when some pediatricians have become integral parts of our family’s healthcare and have provided sound advice over years to our growing children. It’s hard to move on, but research indicates that thoughtful and comprehensive planning can mitigate health risks associated with the transition from a pediatrician to an adult healthcare provider. But how do we start the process?
What is Health Literacy?
Let’s begin with a term called health literacy. Most people have been taught a great deal about healthy habits, such as proper diet and exercise, but how much time have we spent explaining the meaning of common medical terms, like high blood pressure, depression, or cholesterol, and how poor health can prevent us from enjoying our day to day lives? The Center for Disease Control defines personal health literacy as, “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
Although we rely on doctors to provide us with options, as non-medically trained people, we are often overwhelmed by the choices and decision making. This is when we may do some formal or informal research–talking to others, using the internet, or consulting with a different medical professional for a second opinion. Few people actually make important health-related decisions without brainstorming with someone else first. Usually, things are talked over with a family member, health professional or a caring friend. In a training that we developed to teach people with intellectual disabilities to become better health advocates, we named this individual a “health partner.” For someone with a disability, this partnership can often lead to abdicating healthcare decisions to the partner, and having little involvement in understanding how and why healthcare decisions are made. Reminding kids that ultimately, they are responsible for their own health is a critical component of being a good health partner. Involving our kids in their healthcare decisions requires providing information that can be explained in ways that make sense to them. We may first need to ask doctors to explain things several times, or take notes in order to understand the concepts ourselves. Then, while a doctor is present, you may need to re-explain the information in words that are meaningful for your child. Don’t get hung up on being technical with medical terms or diagrams in your explanation. For example, when referring to her cancer treatment, one story teller I heard talked about the healthy cells in her body going to kung fu school so that they could beat the cancerous cells. I loved the mental picture of her cells doing high kicks and punching the cancer cells! After making the explanation, ask the doctor to confirm that your version was accurate and get verification that you are on the right track of breaking down the information for your child. You may end up teaching your physician something new about explaining a diagnosis to others.
What are Your Child’s Health Priorities?
One of the best ways to establish an investment in health literacy is to think about how good health is necessary to enjoy the things that we like doing. Why is good health necessary to play sports, socialize or enjoy television or video games? In addition to needing our five senses working well to participate in our hobbies and interests, we also need active internal organs like our brains, hearts, lungs, and digestive systems to keep us going. Because these body parts are not obvious, their importance may be unrecognized. How would your child’s day-to-day enjoyment of the things they love to do be impacted by an illness or injury?
Mental health is a health priority because mental health and physical health are closely connected. For people who have never experienced mental health challenges, it may be overlooked or minimized. Depression and anxiety are two of the most common mental health challenges. Depression and anxiety are not temporary change in mood or a sign of weakness. They are real medical conditions with many emotional, physical, behavioral, and cognitive symptoms such as aches and pains and exhaustion. If mental health is compromised, quality of life can be severely impacted.
Planning for better health literacy does not require arduous lifestyle changes, but making some minimal adjustments and considerations can allow our children to become more invested in their healthcare decisions. This is the first in a series of articles that will focus on empowering our kids to make informed choices and become more empowered about their health. Coming up next, “Empowering Your Child for Better Communication with Healthcare Providers” [1].
About the authors: Molly Dellinger-Wray, MS Ed. and Parthy Dinora Ph.D are part of The Partnership for People with Disabilities at Virginia Commonwealth University, a university center for excellence in developmental disabilities. Together with the VCU School of Social Work, Molly and Parthy developed an evidence based project to teach adults with intellectual disabilities about healthy relationships called LEAP: Leadership for Empowerment and Abuse Prevention. They are both moms of successful children who benefitted from special education services.
Helpful Articles
- How to Protect Your Mental Health During Coronavirus [2]
- 6 Ways Help Special Needs Families During The Pandemic [3]
- How Does a Patient Portal Benefit My Child? [4]
- “Transition” Healthcare Responsibilities [5]
- Medwaiver Program How the Waiver Can Help Your Child [6]
- Tech Tips to Support Your Family’s Physical & Mental Wellness [7]
- Good Record Keeping is a Must! Tips on Organizing your Medical Records [8]
- My Child’s Medical Provider List Contact Information [9]
- PSN My Child’s Medications Form [10]
- Medical Tech Support [11]
- Overcoming Bias [12]
This post originally appeared on our January/February 2022 Magazine [13]