Few people make important healthcare decisions without talking it over with a trusted family member or a caring friend. But for someone with a disability, this partnership can often lead to handing over healthcare decisions to someone else and having little involvement in understanding how and why healthcare decisions are made. In our last article (January/February 2022 [1]), we discussed the importance of including your child in determining their health priorities and understanding their health care options. This month, we’d like to explore how to empower our loved ones to better communicate with healthcare providers.
Planning for the appointment
For family members, knowing how much or how little to be involved in a medical appointment is the first step to empowering the patient to take the lead in communication. This usually requires some planning. Before the appointment, take a moment to review what will happen step-by-step from the time you sign in with the receptionist until the time you depart the visit. Then ask your loved one how they would like you to be involved in the visit. Would they prefer that you wait in the waiting area while they are seen by the medical professional or accompany them to the examination room? It may be hard for a young person to be comfortable on their own at first, especially if this is always something that a family member has managed. Their participation may have to be small at first and gradually increase as they become more confident.
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When a physician asks, “How are you doing?”, your loved one’s first inclination may be to provide a one-word response, “Fine.” It’s common to omit specific ailments during an appointment because they may be anxious and forget them or because the symptoms are not occurring at that exact time. Take a minute to write down health concerns in a relaxed setting before the visit. This will ensure that nagging issues are not neglected.
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What part does your child enjoy about the appointment? What parts might go better? Are there minor adjustments that can make your child more comfortable? Making a simple request for a low-stakes demand can be a starting point and bolster confidence for more important advocacy in the future. For example, if getting dressed and undressed during a visit is too difficult or time-consuming, encourage your child to ask if they could remain partially undressed or wear a sweater or jacket over a hospital gown. Some children may have specific preferences about being touched in a certain way or need other accommodations. The person who makes the appointment should mention requested accommodations and then follow up with a reminder when you arrive at the appointment.
[4]Everybody poops. Although we teach our kids that some topics are not to be mentioned publicly, it’s important to feel comfortable talking about anything with a healthcare professional. Many preventable health issues occur because patients are too embarrassed to say something. It might be helpful to practice talking about sensitive topics, including sexual health, with a trusted adult who is not a family member. No one should feel uncomfortable speaking with a healthcare professional about what is going on with their body.
Speaking up
How would you feel if you went to a restaurant with a friend and the server spoke only to your friend about what you would like to order? Would you feel unimportant or invisible? For children with disabilities, that happens frequently. It’s hard to speak up for yourself if you are not considered part of the conversation. Well-meaning health care professionals may overlook speaking directly to the child and talk only to family members. Have a conversation with your child about how they would like information to be communicated. Sometimes, the child may need a translator to be understood. Regardless of the communication method, to self-advocate it is important that your child be addressed directly. Professionals may need a gentle reminder that questions should be asked directly to the patient, not the care provider.
Regardless of who gives input, being sure that the doctor has adequate information to provide necessary care is very important. Support your child in providing accurate information, or include them in the conversation. If your child often avoids eye contact, wiggles, or moves around the room, it’s still respectful to include them in the conversation. If they are not being included, and you feel the need to respond, you may say something like, “The nurse is asking about your headaches. Is it okay if I tell her about how many you had last week?” or, “We are talking about your treatment plan. The doctor is suggesting _______. Is that okay with you?” Likewise, you may want to gently nudge the patient to provide details to the health care staff about an incident that occurred, or ask permission to share it yourself. For example, you may say, “Can you tell the doctor about what happened when you fainted yesterday?” or “May I tell the doctor about what happened when you fainted yesterday?”.
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Following up
There may be instructions or advice to follow before the next visit, and it’s important to tune in to what’s being said. What works for your child to remember the information? Asking, “Would you like me to write this down for you?” and being sure that the information is understood before leaving the room is critical. Avoid asking your child yes/no questions such as, “Did you understand what the doctor said?” Instead, with support from the healthcare staff, you may need to rephrase the information in ways that you know your child will understand but be sure to confirm that you have accurately described the information. If your child has excluded you from the conversation, it would not be unreasonable to ask if they would like to tell you about what was recommended, but be respectful if the answer is no.
Starting these conversations at a young age is great. Still, it’s never too late to involve your family member in being informed and active in making healthcare decisions and honest communication with healthcare professionals.
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 they worked on the CHAT Project: Communication and Health Advocacy Training for people with IDD. They are both moms of fabulous children who benefitted from special education services.
Helpful Articles
- How Does a Patient Portal Benefit My Child? [6]
- Planning for Better Health [7]
- “Transition” Healthcare Responsibilities [8]
- Medwaiver Program How the Waiver Can Help Your Child [9]
- Tech Tips to Support Your Family’s Physical & Mental Wellness [10]
- Good Record Keeping is a Must! Tips on Organizing your Medical Records [11]
- My Child’s Medical Provider List Contact Information [12]
- PSN My Child’s Medications Form [13]
- Medical Tech Support [14]
- Overcoming Bias [15]
You May Also Like
- Talk with Me: Enhancing Communication through Natural Family Routines [16]
- Back Talk: 5 Ways to Help Your Child Practice Communication Skills at Home [17]
- Use Your Words Replacing Problem Behavior with Communication [18]
This post originally appeared on our March/April 2022 Magazine [19]