Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents

Abstract

BACKGROUND Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in children. Although ADHD is treatable, barriers remain to engagement in treatment, especially among socioeconomically disadvantaged and racial and ethnic minority families. Our goal was to examine the process by which families engage in ADHD treatment and to identify targets for an intervention to improve engagement in care. METHODS We conducted in-depth semistructured qualitative interviews with 41 parents of diverse youth aged 3 to 17 years old in treatment of ADHD at an urban safety net hospital. Parents were asked about their journey through diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making. Transcripts were analyzed by using thematic analysis. RESULTS Of children with ADHD, 69.2% were male, 57.7% were Black or African American, and 38.5% were of Hispanic, Latino, or Spanish origin. Parents were 92.7% female, were 75.6% English speaking, and had a median income of $20 000. Parents described 6 stages to the process of engaging in care for their child’s ADHD, which unfolded like a developmental process: (1) normalization and hesitation, (2) fear and stigmatization, (3) action and advocacy, (4) communication and navigation, (5) care and validation, and (6) preparation and transition. Barriers often occurred at points of stage mismatch between parents and providers and/or systems. Difficulty resolving an earlier stage interfered with the progression through subsequent stages. CONCLUSIONS The 6 stages framework could be used to develop new strategies to measure engagement and to design family-centered interventions to facilitate engagement in ADHD treatment.