The Burden of Treatment: Listening to Stories of Adolescents With ADHD About Stimulant Medication Use

Abstract

Objective: Stimulant medications are considered an effective treatment for attention deficit hyperactivity disorder (ADHD), and their prescription is consistently on the rise. However, research showed a limited adherence to ADHD medication regimens. This study explores the experiences of using stimulant medication from the understudied perspective of adolescents. Method: Fourteen semistructured interviews were conducted with adolescents diagnosed as having ADHD, and the data was analyzed according to the principles of qualitative interpretative phenomenological analysis. Results: Participants were passive actors in the diagnostic process. Following the medical treatment, half of the interviewees described improvement in their concentration while studying and during exams. However, most of the interviewees discussed the difficulties of taking medication especially in terms of emotional side effects, identity loss, and interpersonal relationships. Those who reached high school stopped, fully or selectively, taking the medication on their own initiative. Conclusion: The results of this study points to the importance of considering the burden of treatment for children and adolescents who take stimulant medications.

Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

“…The majority of Group 2 papers were quantitative studies (36 in total) [ 18 , 19 , 23 , 36 – 68 ]. There were also nine qualitative papers [ 22 , 69 – 76 ], and five mixed-method studies [ 20 , 77 – 80 ].…”

“…There were wide variations within these papers with respect to their level of focus on treatment burden. Some papers suggested a focus on treatment burden by their study title, yet upon further inspection only included one or two commonly accepted dimensions of treatment burden such as medication or costs, for example, [ 68 , 69 ]. Some authors calculated treatment burden with respect to the number of treatment episodes or in terms of level of treatment intensity [ 46 , 51 ].…”

“…The most common dimension of treatment burden examined in Group 2 was related to medication use, generally around diabetes management (e.g., blood glucose monitoring), e.g., [ 19 , 38 , 39 , 49 , 79 ], and other chronic diseases, such as asthma [ 71 ], attention deficit hyperactivity disorder [ 69 ] and stroke [ 23 ]. Based on the limited information on survey development in many studies, it appeared that medication burden was measured by asking participants questions related to their experiences of taking medication, including, but not limited to, side effects, inconvenience, e.g.…”

How does psychiatric diagnosis affect young people's self-concept and social identity? A systematic review and synthesis of the qualitative literature

“…In another study of children with ADHD, the diagnosis was conflated with the introduction of pharmaceutical treatment (Cooper and Shea, 1998). Most participants construed access to treatment as a positive effect of diagnosis, although a minority portrayed intervention as intrusive (Avisar and Lavie-Ajayi, 2014;Kendall et al, 2003;Mogensen and Mason, 2015).…”

“…All other cases of social comparison were directed downward to more impaired others, which made oneself appear relatively robust in comparison. Just as young people distanced themselves from more severely impaired individuals, they also took pains to emphasise their similarity to "normal" peers (Avisar and Lavie-Ajayi, 2014;Daley and Weisner, 2003;Elkington et al, 2012;Humphrey and Lewis, 2008;Huws and Jones, 2015;Ingesson, 2007;Mongensen and Mason, 2015;Moses, 2010;Singh, 2011;Wisdom and Green, 2004).…”