Six stages of engagement in treatment of Attention-Deficit/Hyperactivity Disorder (ADHD) have been reported by researchers at Boston Medical Center based on a diverse study, inclusive of parents of predominantly racial and ethnic minority children with ADHD. Published in PediatricsThis new framework is based on the experiences of parents during the various stages of treatment. It also includes the interplay between families, communities, and the systems and services that their child receives, including healthcare, education, and support.
ADHD is a common neurodevelopmental disorder in childhood that can continue into adulthood. It is treatable but families of racial/ethnic minorities experience disproportionate barriers in obtaining treatment engagement.
This study is the first to provide a comprehensive framework and a developmental path for parents and providers. Researchers discovered that the typical measures of treatment engagement (such as missed appointments or filled prescriptions) do not capture the full extent and involvement of families in care.
“This framework is family-centered and focuses on breaking down the obstacles that families face from before diagnosis to preparing their children with ADHD for the future,” Andrea Spencer, MD, director, Reach for ADHD Research Program, director, Pediatric Integrated Behavioral Health and a child and adolescent psychiatrist at Boston Medical Center. This framework can be used to help develop engagement interventions that are more beneficial for families.
The six stages of engagement identified by the research team are:
- Normalization & Hesitation
- Stigmatization & Fear
- Action & Advocacy
- Communications & Navigation
- Care & Validation
- Preparation & Transition
These stages of engagement occur in families in a similar fashion to a normal developmental process. However, providers and parents are at different stages. Stage mismatch is a problem that can lead to conflict and difficulties, which can hinder the engagement process. Researchers found that patients who experience difficulties in resolving early stages of the engagement process can make it difficult to navigate later stages.
Interventions could be offered at each stage to support families as they move to the next phase. Stage Two saw parents explain that discrimination based upon race or ethnicity caused delays in receiving care. Interventions would target discrimination among healthcare providers and address misconceptions about ADHD in families and communities.
Spencer, an assistant professor of psychology at Boston University School of Medicine, states that parents are more successful if support is provided in a way that matches the stage of their engagement. “Using the Six Stages framework could help the health system better match ADHD children’s needs with their families at different stages of the engagement process.”
The study involved 41 urban, low-income families from diverse backgrounds. It also included youth of ethnic and racial minorities, who are more likely to have difficulty engaging in care. To help researchers understand how families come to be involved in their children’s treatment, families who speak English, Spanish, and Haitian Creole answered questions. In-depth interviews were conducted between June 2018 and October 2019 with families whose children, ages three to 17, were receiving ADHD treatment. Open-ended questions were used to explore the journey of ADHD diagnosis, treatment, community attitudes, and other factors that influence treatment access and decision-making.
Future research should include perspectives from families with undiagnosed, untreated children. Include the years of treatment, age of diagnosis, as well as how families may progress through each stage. This could help to inform the model.
This study was funded by the Gordon and Betty Moore Foundation grant 5300 and the National Institute of Mental Health grant K23MH118478.
Materials provided by Boston Medical Center. Note: Content may be edited to improve style and length.