When families face chronic diseases, it is especially important to encourage their active participation with the medical team. This is the hallmark of the “chronic care model,” which encourages medical providers and the patient/family to work together. Chronic diseases often require lifestyle and behavior change to maximize outcomes. This is especially true in pediatrics and behavioral conditions. Published clinical care guidelines for all pediatric behavioral/mental health conditions (such as ADHD) highlight parent training and behavioral interventions as “first line” treatments.
Part of what we do in the ADHD group visit model is to help pediatric providers empower parents and children with knowledge and skills that encourage active monitoring of symptoms and behaviors. It is important to involve children in their own self-care as soon as they are able to understand basic concepts of health and illness, can participate in some aspects of self-care and show self-awareness.
We developed an ADHD group visit curriculum for parents to begin to breakdown elements of ADHD chronic care over 5 sessions–knowledge about ADHD and developmental considerations and treatment options (behavioral considerations and positive parenting, educational supports, and medications). We have a separate child curriculum that includes complementary topics, such as teaching children what ADHD is, along with specific skills to promote self-care and problem solving skills to use in home and school.
One of the things we noticed that happened organically after the group visits was that parents and children were eager to talk to each other about what they had learned or talked about in groups. This is because parents and children participate in group separately. Groups are run at the same time but in different rooms.
One of the tools that has come out of this work is a worksheet designed to help children monitor their feelings and how their bodies feel. This is especially important if a child is on medications for ADHD since potential side effects include headaches, stomachaches and decreased appetite. Helping children learn how to “tune in” to their bodies and thoughts and also how to talk with their parents about it is a important skill.
Together with our Patient Advisory Board and the team of health communication designers, we developed a way for children to track these feelings and thoughts. We printed these as memo pads and distributed them after session 2.
Children can be encouraged to complete these sheets for the first few days after starting or increasing medication as a way to “jump start” self-awareness and conversation. It can also be shared with the child’s doctor.
Click here to download “My Today” in English.
Click here to download “My Today” in Spanish.
*A special thanks to Dustin Lynch, Courtney Moore, Helen Senamatsu and Dr. Sarah Wiehe, as well as the families of our patient advisory board for their assistance in co-developing this tool.
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