Telehealth for families of children with special health care needs
Health care for a child with complex medical needs can be improved through telehealth. Virtual visits give your child the same level of care with less exposure to doctors’ offices and hospitals. That means less stress, less time away from home, and fewer germs. Telehealth allows you and your child to focus on their health care needs from the comfort of your own home.
Telehealth and family-centered care
Family-centered care focuses on collaboration between health care professionals and families. This approach benefits many families, but especially those with children who have special health care needs.
Tip: Here’s what you should know about telehealth visits for your child with special health care needs.
The combination of telehealth visits and family-centered care can greatly improve your family’s health care experience:
You and your child may feel more relaxed attending virtual visits from your own home. Doctor’s offices can be distracting and stressful for children. This means less focus on the conversation with the doctor. Children with special health care needs will likely feel more comfortable in familiar surroundings.
You can have more quality one-on-one time with your child’s doctor. Your child may not need to attend every virtual visit. You can use these child-free virtual visits to discuss sensitive topics you may not want your child to hear. You can also take time to discuss your child’s emotional and social needs.
Virtual visits fit into your schedule. Families with children who have special health care needs often juggle many appointments every week. This could include doctor’s visits, meetings at school, and therapy sessions. Choosing virtual visits means less time driving back and forth. They also cut down on germ exposure for children who are medically fragile.
Read more about family-centered care: The National Survey of Children with Special Health Care Needs Chartbook 2001 - from the Health Resources & Services Administration (HRSA)
Get started with family virtual visits
A series of webinars from Family Voices will help you get connected and get online. You will also learn more about what to expect from family-centered virtual health care.
What to expect during your child’s telehealth exam
The doctor will examine your child a bit differently over telehealth than in person. Your child will still get quality health care through a virtual visit.
Family-centered care means you should feel like an equal partner in your child’s health care. During the virtual visit you should feel free to share your opinions, concerns, and questions.
- You may want to write down important thoughts before the visit
- Keep a pen and a piece of paper handy to write down notes from the doctor
- Ask the doctor to explain anything you or your child may not fully understand
The doctor will ask about your child’s general health and medications. You can prepare this information ahead of the virtual visit. Likely topics include:
- Your child’s approximate weight and height
- Your child’s current medications and dosages, including supplements
- Any medical diagnoses
- Allergies, including food and medication
- Any recent illnesses, hospitalizations, or surgeries
- Social and emotional health
Tip: Dress your child in loose clothing that is easy to move around. This is helpful if the doctor asks to see their skin or a certain part of the body. Clothing that works best includes short sleeves or a jacket that can be easily unzipped, shorts, or pull-on pants.
The doctor should address your child directly during the virtual visit. Your child deserves to be a part of their own health care. There are ways for your child to participate even if it is difficult for them to communicate.
- The doctor should make eye contact with your child and address them by name
- The doctor should include your child in the conversation, even if your child cannot make medical decisions
- Some pediatric doctors use toys, stuffed animals, or drawings to engage your child
Your child’s doctor should discuss the next steps before you end the virtual visit. Ask for more information if you are unclear about what you need to do before your next visit. Next steps could include:
- Scheduling a follow-up visit, either virtual or in-person
- Lab testing or bloodwork
- Referral to another doctor, specialist, or therapist
- Change of medication
- A plan to address behavior, emotional regulation, or social interactions
Share questions, concerns, or preferences with your child’s doctor before the virtual visit
This information can help the doctor better communicate with you and your child during the appointment.
This could include:
- Certain behaviors that might occur during the visit
- Assistive technology your child uses to communicate, such as screen readers or text to speech tools
- Sensitive topics you may want to share with the doctor before your child joins the virtual visit
- Changes in your child’s family, living, or school environment
How to support your child during a virtual visit
Every child reacts to doctor’s visits a little differently. Virtual visits are no exception. It is very common for your child to feel excited, nervous, scared, or even bored.
There are many ways you can help your child feel comfortable during a virtual visit.
Practice the visit ahead of time. You could use another video conferencing platform, such as Zoom, FaceTime, Skype, or Google Hangouts. Roleplay with your child and take turns playing the role of the doctor.
Ask your child what questions they have about the virtual visit. Give them any answers you may have and write down the rest for the doctor to answer.
Attend the virtual visit in a place that is comfortable for your child. This could be their bedroom, the kitchen, their playroom, or a quiet room at school.
Remove distractions for the virtual visit. This includes:
- Other people, including siblings
- Electronics you are not using to communicate with the doctor
- Toys that make noise
A comfort item may be helpful for your child during the virtual visit. The comfort item should be small and quiet. A favorite blanket, stuffed animal, or doll are good options.
Guide your child to participate in the virtual visit, if possible. Help your child advocate for themselves.
- Encourage them to ask questions
- Pause to ask how they feel during the visit
- If they feel shy or are non-verbal, encourage your child to give a thumbs up or thumbs down or a nod of their head, if possible
More information for parents and guardians
Read more about family-centered care: The National Survey of Children with Special Health Care Needs Chartbook 2001 (HRSA)
Get tips to help your child participate in virtual visits (PDF) - from Family Voices
Read more about Telehealth and COVID-19
Download Telehealth for Children and Youth with Special Health Care Needs Infographic (PDF) – from Health Resources and Services Administration (HRSA)
Disclaimer: The reference to named video- and text-based communications software for telehealth is informational and not intended as an endorsement of those services.