Struggling to be heard: A scoping review of user participation in ADHD mental healthcare for children and adolescents

Abstract

Background: Growing emphasis is placed on supporting children and adolescents with attention deficit hyperactivity disorder (ADHD) in participating in their own healthcare; however, more knowledge is needed to guide practice. Objective: To review the scientific literature on user participation and opportunities for shared decision-making involving younger people referred for ADHD in mental healthcare services, to provide recommendations for clinical practice and future research. Method: A systematic scoping review was performed. Eligibility was determined in two steps by two and three independent researchers, respectively. Data were extracted and analyzed using qualitative content analysis. The findings were synthesized across the various contexts and participation groups represented in the included studies. In all, the analysis involved three phases: preparation, organization, and reporting. Results: Of the thirty full-text papers identified, five met the inclusion criteria. Four categories and seven subcategories related to user participation and opportunities for shared decision-making involving children and adolescents with ADHD were identified. The four categories were: (1) sidelined from the start, (2) lack of information, (3) trapped in medication, and (4) growing into active decision-makers; these indicate that children with ADHD feel excluded from the diagnostic process, may have limited treatment choices, and may not be heard. This review also discovers a bias in the existing literature on user participation, with a tendency to emphasize caregivers' or clinicians' perspectives over those of the young people. Conclusions: Young people with ADHD experience they have limited opportunities to participate in their mental healthcare services. User participation and shared decision-making by young people with ADHD should be promoted in clinical practice. Accordingly, future research should explore ways to implement user participation among young people themselves when assessing and treating ADHD, not only among clinicians and caregivers.