In their own words: adolescent views on ADHD and their evolving role managing medication.

OBJECTIVE: Up to 90% of adolescents with attention deficit hyperactivity disorder (ADHD) remain functionally impaired, yet less than half continue to take medication. The objective of this study was to gain a detailed understanding of how adolescents with ADHD contribute to medication treatment decisions. METHODS: Forty-four adolescents with ADHD aged 13 to 18 years old participated in 1 of 7 focus groups. An experienced facilitator used a semi-structured focus group guide to prompt discussion which was audio-recorded and transcribed verbatim. We coded transcripts using an inductive approach. Thematic saturation was reached after the seventh focus group. RESULTS: Adolescents assumed increased responsibility for managing medication as they matured and developed insight into the functional impact of ADHD and medication on their lives. Insights were often formed by contrasting time spent on and off medication. ADHD impacted functioning in the following domains: academics, social interactions and relationships, creativity, and driving skills. Select domains were relevant for some adolescents but not others. Adolescents described different roles that they played in managing medication as well as strategies they used to exert autonomy over medication use. Side effects were common and contributed to negative feelings toward medication. Some adolescents had begun to use medication selectively. Many expressed uncertainty about future use of medication. CONCLUSIONS: Adolescents assume an increasing role in managing medication for ADHD. Well-structured and coordinated trials stopping medication and measuring outcomes relevant to adolescents, parents, teachers, doctors, and/or other stakeholders may help ensure a developmentally appropriate transition from family to self-management of ADHD.

Parental angst making and revisiting decisions about treatment of attention-deficit/hyperactivity disorder.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurobehavioral conditions of childhood and adolescence. Despite availability of effective treatment options, initiation of treatment is variable and persistence with therapeutic regimens is poor. OBJECTIVE: We sought to better understand how parents make decisions about treatment for their child or adolescent with ADHD. METHODS: We conducted a qualitative study among parents of children and adolescents; 52 parents participated in 1 of 12 focus groups. Parents answered questions about decision-making, information sharing, and sources of conflict and uncertainty. Sessions were audiotaped and transcribed verbatim. Themes were coded independently by 4 of the investigators, who then agreed on common themes. RESULTS: Parents in our study made decisions about treatment for their child with ADHD in the midst of experiencing a variety of emotions as they witnessed child functional impairments at home and at school. In addition, parents felt stress as a result of their daily efforts to manage their child's struggles. Multiple factors influenced the decision to initiate medication. Subsequently, revisiting the decision to give their child medicine for ADHD was common. Many parents contrasted time on and off medicine to help inform management decisions. Trials stopping medication were almost always parent- or child-initiated. CONCLUSIONS: Decisions about medication use for children and adolescents with ADHD are made and frequently revisited by their parents. Choices are often made under stressful conditions and influenced by a variety of factors. Striking a balance between benefits and concerns is an ongoing process that is often informed by contrasting time on and off medication. Development of strategies to support families across the continuum of decisions faced while managing ADHD is warranted.