Parenting a child with ADHD can be challenging. ADHD can affect how the child does at home and school, affects relationships in the family and with friends. Parents often express worry about how their child does at school and their general wellbeing, or “quality of life. ”

Related: ADHD Impact on Quality of Life (ADHD Institute)

It is common for pediatric doctors to consider ADHD. Once ADHD is a possibility, families consider a variety of options: medications, behavioral therapy, parenting and educational supports. Treatment will depend on a variety of factors:

  • child’s age
  • how frequent and severe symptoms are
  • how symptoms affect the child at home and school

The landmark study, the Multimodal Treatment of ADHD, followed almost 600 children for 14 months and then at periodic intervals thereafter (last update was 16 years after!). Children received either medication only, behavioral therapy only, combination treatment (medication + behavioral therapy) or “usual care” (care given by doctors not following study protocol). Initial results found children getting medicine or combined treatment did best. Over time, most children who started on medications were no longer taking them. Children with ADHD continued to have more problems in school and with peers later in life, even into adulthood.

Wait, what?

If you are a parent of a child with ADHD, you might wonder, “Well why should I even start treatment in the first place?” or “Why all the focus on medicine if it won’t matter in the long run?”

We know that medicine and combination treatment can improve symptoms early on in treatment. And while medication can lessen symptoms over time, families continue to report stress and worry. We also know children who had initial improvements and were able to continue to make progress 2 years later fared the best.

So what can we do?

Starting treatment is key to helping children and families learn how to help the child feel capable and preserve their self-esteem. We want them to enjoy learning and being a kid. However, there is not a “one size fits all approach.” I use the analogy of a pizza with families when discussing treatment options. We need to figure out what essential ingredients are needed now and how much of it we need. We determine this by weighing how much ADHD symptoms are affecting the child, the family and relationships at large.

That’s where Design, Collaboration & Research Comes In

We used design research strategies and partnered with families to understand their ongoing struggles, worries and challenges. This work led to the development of IMPACT 1.0 Scale. IMPACT stands for Impact Measure of Parenting-related ADHD Challenges and Treatment. It is our hope that this scale is a step towards helping families and their child’s doctor to talk about every day life challenges when raising a child with ADHD.

Using Design Research to Understand Family Needs When It Comes to ADHD Care

In our work, parents wanted to talk more about general misbehavior, concerns about school, and relationships with siblings and others. They also wanted to talk about how ADHD made them feel they had less time for:

  • other children in the family
  • household tasks
  • themselves

Read the full report here: Assessment of the Effects of Pediatric Attention Deficit Hyperactivity Disorder on Family Stress and Well-Being: Development of the IMPACT 1.0 Scale

Work is still ongoing with the IMPACT scale with families with children with and without ADHD. However, in the meantime, we hope that the IMPACT 1.0 scale helps “jumpstart” conversations about what support the family needs to have more “good days than bad.”

Families should expect ADHD treatment to change over time as school demands and responsibilities increase with age.

Doctors are thinking about your quality of life, even if they don’t ask you directly. But, they may not learn about specific concerns or worries if they have limited time or if they use more general questions, “How are things going?” Families can bring up specific concerns, but if they forget or don’t feel they can, the opportunity to talk about what the family needs is lost.

It is our hope that if families and doctors use the IMPACT 1.0 scale to talk about every day challenges during follow up visits, treatment can be tailored and support can be sought.

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Written by

Nerissa Bauer

I am a behavioral pediatrician, consultant, child advocate and blogger. I am a wife, mommy to 2 amazing children and 2 golden retrievers. Love cooking, travel, reading, tap and creating.