This study is the first one to provide a comprehensive framework with a developmental trajectory navigated by parents and providers together.
“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 Boston Medical Center.
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This study included 41 diverse, urban, low-income families with racial and ethnic minority youth, who are most likely to experience difficulty engaging in care.
In-depth interviews were conducted with families whose children aged three to 17 years old were in treatment for ADHD between June 2018 and October 2019.
Open-ended questions were also asked to explore the journey of ADHD diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making.
Based on these interviews, researchers identified the six stages of engagement:
• Normalization & Hesitation
• Stigmatization & Fear
• Action & Advocacy
• Communications & Navigation
• Care & Validation
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• Preparation & Transition
These stages of engagement unfold in families in a similar way to a typical developmental process, hampered by providers and parents being at different stages in the process.
Researchers also found that any difficulty patients feel in resolving earlier stages in the engagement process could interfere with successfully navigating later stages of the process.
Within each stage, interventions could be offered to support families in that phase and help them journey successfully to the next.
Interventions would target discrimination and bias 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 stage of engagement”, says Spencer, also an assistant professor of psychiatry at Boston University School of Medicine.
Using these six stages framework can allow the healthcare system to match the needs of children with ADHD whose families are at different stages of their engagement process.
Future research should include the perspectives from families with undiagnosed and untreated children, with the inclusion of the years of treatment and age of diagnosis.
Source: Medindia
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