Helping Families Navigate the ADHD Treatment Process

ADHD is one of the most common behavioral disorders among children and teens in the U.S. Data from the Centers for Disease Control published in 2016 and 2019 show the prevalence of ADHD among children age 3-17 increased between 2003 and 2011, then decreased between 2011 and 2019:

ADHD Diagnoses in Children: 2003-2019

• 2003: 4.4 million
• 2007: 5.4 million
• 2011: 6.4 million
• 2016: 6.1 million
• 2019: 5.4 million

This is good news for parents and children alike. It’s good news because children and teens with ADHD also show increased risk and prevalence of additional mental health and behavioral disorders.

Percentage of Children and Teens With ADHD + Mental Health/Behavioral Disorders

• Any Additional Disorder + ADHD: 64%
• Behavior/Conduct Problem + ADHD: 52%
• Anxiety + ADHD: 33%
• Depression + ADHD: 17%
• Autism Spectrum Disorder +ADHD: 14%

Mental health experts do not yet understand why rates of ADHD diagnoses decreased over the past ten years. However, it’s logical to conclude that several factors are at play. First, awareness of mental health issues among children has increased dramatically over the same period. This awareness includes an understanding of risk factors for ADHD and how parents can manage the symptoms of ADHD. Next, treatment for ADHD has become less stigmatized and more widespread.

Here are the statistics on ADHD treatment from 2016.

ADHD Treatment: National Parent Survey

Among children and teens diagnosed with ADHD:

• 77% received treatment. Among these:
  • 30% took medication
  • 15% received behavioral treatment
  • 32% received medication and behavioral treatment.
• 23% of children with ADHD received neither medication nor behavioral treatment

The fact that over three-quarters of children and teens in the U.S. with ADHD engaged in treatment is a positive step forward. However, the remaining children need help and support, too. A recent study published by researchers at the Boston Medical Center contains information that can help us close this gap in treatment. The team in Boston identified six stages of engagement in ADHD treatment. Their paper discusses how knowledge of these stages can help parents, children, teens, and mental health professionals increase both treatment adherence and treatment completion for children and teens with ADHD.

We’ll talk about this new study, then share the six stages of engagement researchers defined.

ADHD: The Importance of This New Study

We’ll back up for just a moment because we used treatment jargon above, and we want to make sure everyone understands what we meant. To clarify, treatment adherence means staying with a prescribed course of treatment and treatment completion means finishing a prescribed course of treatment. If you know that already, our apologies. If that’s new information for you, then that’s great: we’re on the same page.

Now, about this new study.

It’s important for many reasons. Here’s the first: in the past, the overall path of a child or teen with ADHD during treatment – called the treatment trajectory – was largely defined and described by clinicians and researchers. This study, though, enlisted the input of parents, children, and therapists in order to understand the path most youth with ADHD take on their treatment journey.

The second reason this study is important is that it includes new metrics to determine treatment adherence and completion. In the past, metrics like missed appointments and number of filled or unfilled prescriptions determined treatment adherence and completion. This study is different in that it included qualitative measures that reflect the family situation more realistically than simple tallies of appointments missed or prescriptions filled.

These new measures led to a fresh framework for understanding how families navigate ADHD treatment.

In the words of Dr. Andrea Spencer, a lead investigator on the study:

“This framework is family-centered, focused on breaking down the barriers that families face from before diagnosis to preparing children with ADHD for the future. [It] can help serve as a model to develop engagement interventions that will be more beneficial to families.”

Another important aspect of this new study is the participants. Many studies under-represent minority and low-income populations. This study, on the other hand, included 41 families from these demographics, which means the framework more closely matches the real-world demographic characteristics of children and families of children with ADHD.

ADHD Treatment: A New Framework for Understanding How Families Engage

We’ll now have a look at the stages the researchers identified. One function of this study is to define ways treatment providers can intervene to help families understand the treatment path, and help eliminate any barriers to access or obstacles to understanding the both the big picture and the daily details related to support and care for children and teens with ADHD.

1. Normalization and Hesitation.

During this stage, providers should help parents, children and teens understand that ADHD is a common diagnosis, and that a wide range of treatments for ADHD are effective. The goal is to help people understand that a diagnosis for a behavioral condition like ADHD is no different than a diagnosis for a physical condition. Once you receive a diagnosis, you follow an evidence-based treatment path, monitor progress, and adjust the treatment as necessary.

2. Stigmatization and Fear.

This stage describes and addresses the biases and prejudices that many people have – and fear others may have – around behavioral and mental health disorders. At this stage, providers should help parents understand the medical model of mental health. Parents and families need to know that a mental health condition is a health condition like any other. A child with an ADHD diagnosis is not a bad child or a failure. Parents of children are not bad parents or failures as parents. Kids with ADHD are kids with medical condition. Parents of kids with ADHD are parents of kids with a medical condition – nothing more, nothing less.

3. Action and Advocacy.

This stage describes and addresses barriers to care for families who may require assistance securing treatment and support for children and teens with ADHD. Providers should connect families with appropriate community supports that help overcome barriers to care and help navigate any existing obstacles to treatment.

4. Communications and Navigation.

This stage addresses the need for targeted communication with families and the need for support throughout the treatment journey. For families with no experience with mental health issues or their treatment, providers can help prepare families for what’s ahead. They can explain what to expect, how to monitor treatment progress and engage with therapists, and clear up and remaining questions about the upcoming treatment process.

5. Care and Validation.

This stage describes the need for parents and children to establish “long-term, trusting relationships” with providers who genuinely care for the wellbeing of both children and family. When trust is absent and providers change often, it’s difficult for families to have faith in the process. However, ongoing, compassionate support and care increase engagement and adherence. It’s critical for providers to manage relationships mindfully, and ensure consistency and continuity of care for children and teens with ADHD.

6. Preparation and Transition.

This stage describes what comes next: parents learn to prepare their child for life with ADHD. During this stage, it’s important for providers and families to review the course of treatment and clarify what works for the child or teen with ADHD. Some kids do well with medication.  Some kids do well with lifestyle changes and therapy. Others benefit from healthy doses of both. To move forward, it’s important for everyone involved to understand how to manage ADHD over the long term – not just for the rest of their school years, but into early adulthood and beyond.

Researchers point out that unresolved conflicts or misunderstanding in early stages can prevent successful treatment engagement in later stages. For instance, if providers don’t explain what ADHD is and how treatment can help, then families may never consider treatment. Likewise, if providers don’t dispel stigma and address fears a family may have regarding treatment, then that family may not engage fully in treatment. Finally, if families and providers do not establish long-term, compassionate, and trusting relationships, then the likelihood a child will complete a prescribed course of treatment decreases.

How This Helps Families

In closing, we’ll offer another quote from Dr. Andrea Spencer:

“We propose that this family-centered six stage framework could be used to develop new strategies to measure and facilitate engagement in ADHD treatment.”

We agree with Dr. Spencer. This framework presents a realistic template for increasing ADHD treatment for kids who need it. It’s practical. It’s based on the lived experiences of families typically excluded from studies on mental health treatment. But the thing we like the most is that it revolves around three things we value most: awareness, communication, and compassion.