Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurodevelopmental disorders of childhood—a chronic pediatric condition that can persist into adulthood. The condition is treatable, but children of color and their families experience disproportionate barriers to treatment engagement.
A new, racially and ethnically diverse study, led by researchers at Boston Medical Center (BMC) aimed to define the most effective ways to engage children and their families in ADHD care—specifically for patients of color, who are most likely to experience difficulties engaging in care.
Researchers conducted in-depth interviews with 41 diverse, urban, low-income families with children, aged 3 to 17, who were in treatment for ADHD between June 2018 and October 2019. The families were asked open-ended questions to explore the journey of ADHD diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making. The study was accessible to families who speak English, Spanish, and Haitian Creole.
As a result, BMC researchers identified six stages of engagement in treatment for ADHD. Published in Pediatrics, the study is the first to provide a comprehensive framework with a developmental trajectory navigated by parents and providers together.
A framework for engagement in pediatric ADHD treatment
Researchers suggest that typical measures of treatment engagement, such as missed appointments or prescriptions filled, do not capture the full extent of family engagement in care. Instead, this new framework has been informed by the experience of parents throughout the many stages of care that families must navigate—from diagnosis through the treatment process—and the interplay among themselves, their families, their communities, and the systems serving their child, most notably healthcare and education,
"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," says Andrea Spencer, MD, director of the Reach for ADHD Research Program, director of Pediatric Integrated Behavioral Health, and a child, adolescent, and adult psychiatrist at BMC. "This framework can help serve as a model to develop engagement interventions that will be more beneficial to families."
The six stages of engagement that the research team identified are:
- Normalization & Hesitation
- Stigmatization & Fear
- Action & Advocacy
- Communications & Navigation
- Care & Validation
- Preparation & Transition
These stages of engagement unfold in families in a similar way to a typical developmental process—but it can be hampered by providers and parents existing at different stages in the process at one time. Known as "stage mismatch," this can cause difficulty and conflict, which interferes with engagement in treatment. Researchers found that any difficulty pediatric patients feel in resolving earlier stages in the engagement process could interfere with successfully navigating later stages of the process.
Understanding that, as families navigate the process, care providers should offer supports and interventions specific to each stage to help them journey successfully to the next. For example, during Stage 2 (Stigmatization & Fear) parents explained that racism and bias intersected with ADHD stigma in their communities, which led to delays in care. Interventions should target this discrimination among healthcare providers, as well as address misconceptions about ADHD within families and communities.
"Parents were successful when support was provided in a way that matches their own stage of engagement," says Spencer. "Using the six stages framework could allow the health system to better match the needs of children with ADHD whose families are at different stages of their engagement process."