Parental Angst Making and Revisiting Decisions About Treatment of Attention-Deficit/Hyperactivity Disorder

Abstract

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.