Attention Deficit/Hyperactivity Disorder (ADHD) is a chronic, often lifelong, psychiatric disorder with onset in early childhood. ADHD treatment disparities for affected African-American youth and for girls have been consistently documented, but the contributing factors in the help-seeking process are poorly understood. The Institute of Medicine, in its recent recommendations on improving quality of care, stresses the importance of ensuring that patient values guide clinical interventions. This competing renewal seeks to follow a cohort of youth into their adolescent years and to conduct a parallel quantitative and qualitative study to achieve the following three objectives: 1) To test three sets of hypotheses addressing predictors of continuities or discontinuities of ADHD treatment status from childhood to adolescence, and relevant adolescent outcomes on multiple levels (symptoms, functioning, consumer perspectives, environments, and systems). 2) The qualitative study component seeks to describe elements and experiences that have helped or hindered help-seeking for ADHD for two underserved groups: girls and African-American youth with ADHD. Special emphasis will be given to the interplay between ADHD knowledge, the social network consultation process, and values and treatment preferences, to identify interventions aimed at reducing treatment disparities that respect patient values. 3) Intervention options identified in the qualitative study, along with professional treatment guidelines, will be tested for acceptability, feasibility, and perceived benefit in a survey to the entire cohort and randomly selected health and education professionals. To achieve Objective 1, a longitudinal observational study, collecting parent, youth and teacher data will be conducted among a high-risk cohort of youth that have already been followed over the past 4 years. The first two study phases will focus on treatment continuity and discontinuity in adolescence, and the last phase on outcomes. For this last phase, a matched group of low-risk youth will be recruited from the original screening cohort of our first study. To achieve Objective 2, experience sampling method (ESM) with eight youth, their parents and teachers will be used to develop themes and questions for 10 focus groups (FG), four for parents, four for youths, and two for teachers. Cohort participants will be sampled for ESM and FG based on criterion sampling (ADHD treatment status, gender, and race). Feedback forums after each data collection phase will enhance validity and trustworthiness of findings. A framework of critical theory will guide open coding, domain analysis, critical incident method and political analysis, which represent the qualitative data analysis methods used in this study. In addition, the focus will be on perceived beneficial steps that could be taken to improve the help-seeking experience from the perspectives of the youth, parents, and teachers, culminating in a summary of suggested intervention options to improve equitable access to treatment. For Objective 3, these intervention options, along with a summary of professional treatment guidelines for ADHD, will be presented to the entire study cohort, school district teachers, and medical treatment providers in the form of a survey for assessment of acceptability, feasibility, and perceived benefits. Survey findings will be processed in feedback forums in preparation of pilot interventions. The study occurs in partnership with the school district and an advisory board of school professionals, parents, and youth. The research team has an extensive track record of success with similar study designs and will use innovative technologies to adhere to an efficient management plan.
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