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The Process of Engagement in ADHD Care Explained in 6 Stages

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“Most people think ADHD is not a big deal and I think that a bigger awareness needs to be brought out to the community.”

Parent of a child with ADHD. “Video abstract” Pediatrics. October 2021.

For ADHD awareness month, I would like to highlight a recently published paper in Pediatrics where researchers developed a family-centered framework explaining the process of engagement in ADHD care.  

Brief background

A 2016 CDC report shows that 6.1 million children were ever diagnosed with ADHD in the United States, making it one of the most common neurodevelopmental disorder among children. Inattention, hyperactivity, and impulsive behaviors are a few common characteristics among these children.

Treatments for ADHD can include medication and/or behavioral treatment such as therapy. However, 1 in 4 children with an ADHD diagnosis do not receive any type of treatment. Additionally, children from low-income, and racial and ethnic minority background find it particularly difficult to stay engaged in ADHD care.

Dr. Andrea Spencer, the lead author of the paper, and her team, “sought parents’ perspectives to better understand what could be done to improve access to and engagement in ADHD care.”

The research team interviewed 41 parents of children with ADHD at an urban safety-net hospital in Boston between 2018 and 2019. They were from low-income, and racial and ethnic minority backgrounds. Based on these families’ experiences, the research team developed a framework that explains the process of engagement in ADHD care in 6 stages.

ADHD care

The 6 stages

Stage 1: Normalization and hesitation

Parents go through a range of emotions before accepting that there is a “problem” with their child. Parents initially hesitate to seek out treatment but once their child’s symptoms start to get worse, they learn to accept their child’s condition.

“I just kept telling myself he’s gonna grow out of it … Once he gets, you know, older and he starts school and he’s in kindergarten, he has more structure, like, he’ll grow out of it, and he just didn’t.” – Parent of a 7-year-old boy*

Stage 2: Stigmatization and fear

Even after accepting their child’s condition, parents face additional barriers when seeking treatment. The two most common barriers are stigma and fear. Parents feel as if they are being judged for their child’s behavior or putting their child on medication.

“It has always scared me to put him on medication, because … if you give them that, they will stay addicted, or people will call them crazy” – Parent of a 10-year-old boy*

Medication Stigma of ADHD
Stage 3: Action and advocacy

Parents often feel like a “lone wolf” advocating for their child’s care. Parents describe situations where doctors dismissed their feelings of concerns.

“At the end of the day, I’m really going to be the only one that makes sure they get the best care.” – Parent of a 16-year-old girl*

“I have my concern. I expressed it to the doctors, but they were never concerned … They never listen to me.” – Parent of a 10-year-old boy*

Stage 4: Communication and navigation

Navigating ADHD care without support from others is another challenging aspect for parents. They feel overwhelmed and disheartened by the logistical and financial difficulties in coordinating care for their child.

“It takes a village to raise a child. But a child with ADHD needs three or four more villages, and … it’s life consuming.” – Parent of a 10-year-old boy*

Stage 5: Care and validation

Parents appreciate a dependable and trusting relationship with their child’s doctors. They also need to feel validated and comforted for their experiences.  

“They [providers] listen to me. They make me feel comfortable that they’re there for my kids and me at the same time.” – Parent of a 10-year-old girl*

Care of ADHD
Stage 6: Preparation and transition

Parents initiate productive conversation with their children to prepare them for the future. But they remain mindful of their child’s difficulties and encourage discussion around “self-management skills”.

“I want him to always know that, to be confident in yourself with who you are regardless of what anyone around you thinks or regardless of what statistics show about ADHD.” – Parent of a 12-year-old boy*

Concluding remarks from the lead researcher

Dr. Andrea Spencer notes that conflicts arise when doctors and families are on different stages of engagement in a child’s ADHD care. She believes that this framework can be used to target interventions for families in each stage to help them move along the process.

*Citation for all the quotes:

Spencer, Andrea E., et al. “Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents.” Pediatrics, vol. 148, no. 4, 2021.

Additional source: U.S. News

3 Responses

  1. Maria Leech says:

    Great post! Hope to see another on best practices for caring for a child living with ADHD.

  2. Zarin says:

    Really enjoyed reading your post. Super helpful information

  3. […] To learn more about ADHD, please read my recent blog post. […]