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Up to 90% of adolescents with 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.
44 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.
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 employed 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.
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.
The American Academy of Pediatrics (AAP) recommends that primary care providers educate children about ADHD in a developmentally appropriate manner and involve them (as well as parents and teachers) when specifying target outcomes, selecting treatment strategies, and monitoring progress toward goals.1 As with any chronic health condition, it is expected that a child’s role in this process will increase as they mature.2 Child efforts to exert greater control over medication management can lead to conflicts with their parents and/or clinicians. For children with ADHD, many dislike taking medication due to lack of perceived need for or improvement from medication, experience of social stigma and/or side effects.3–11 Indeed, many adolescents argue with their parents, refuse to take medication, and/or covertly dispose of medication.4,9 Given that up to 90% of adolescents with ADHD remain functionally impaired,12 it seems likely that many could benefit from medication.13 Yet less than half of adolescents with ADHD continue to take medication.14
The objective of this study was to gain a detailed understanding of how adolescents with ADHD contribute to medication treatment decisions. This information is needed to help guide clinician and family efforts to optimize management of ADHD. We used qualitative research methods because they are often useful in exploring complex, multi-faceted issues that may not be readily elicited by more direct, close-ended quantitative survey methods. The methods were used to better understand how adolescents contribute to ADHD medication treatment decision-making and not to test specific hypotheses.15–17
Adolescents were eligible to participate in one of seven focus groups if they had been diagnosed with ADHD, were between the ages of 13 and 18 years, and had been seen for ADHD in the past 2 years at 1 of 10 community-based pediatric practices in the Cincinnati/Northern Kentucky region. Adolescents (n=1,694) were identified through a billing database. Recruitment was stratified by sex and age (13–15 and 16–18 years). We randomly sampled an equal number from each stratum. This procedure enhanced sample variability by ensuring that boys and girls at a full range of ages would have an equal opportunity to participate. The parents of 283 adolescents received a letter from their child’s doctor inviting them to participate in the study. This number was chosen to ensure an adequate sample of participants. Only one child per family was eligible to participate (no siblings). Of 283 parents, 16 indicated via a returned postcard that they did not want to be contacted. The remaining families received a follow-up telephone call, but 83 families could not be reached. Of those contacted by telephone (n=184), 63% expressed interest in participating. Subsequently, these eligible and interested adolescents were scheduled to participate based on their availability to attend focus groups. The Cincinnati Children’s Hospital Medical Center (CCHMC) Institutional Review Board reviewed and approved this study. Adolescents provided assent and parents provided written consent prior to participation.
During recruitment, each parent answered a brief telephone screening questionnaire to confirm study eligibility. The questionnaire asked about the diagnosis and treatment of their adolescent with ADHD. To describe the sample, parents also reported their adolescent’s race/ethnicity using investigator-defined categories. Focus group sessions, which included adolescents from all age and sex strata, were held at CCHMC, located in urban Cincinnati as well as 3 CCHMC-affiliated suburban locations during afternoon and evening hours in order to increase participation rates and enhance sample variability. The focus groups averaged 1.5 hours in duration and were audio-taped. Each adolescent was reimbursed $50 for their time and travel expenses.
Focus groups were led by one of the investigators (S.N.S.), an experienced focus group facilitator. The prompting questions used in the focus groups were developed during group meetings with all investigators and informed by the extant literature (Table 1). Broad, open-ended questions were followed by more specific, probing questions to clarify the participants’ responses and to explore the context of the responses. The semi-structured questions and focus group format allowed the participants to elaborate on their experiences and initiate discussions about issues that might not have been anticipated by the research team. The questions were designed to explore adolescent involvement in making decisions about continued use of ADHD medications including factors that influence decisions and practical aspects of medication taking. Questions also explored adolescent perceptions of the impact of ADHD on creativity and driving skills. The focus group guide was pre-tested with the target population to ensure the questions were easy to understand and elicited substantive discussion about the research topic. Research team members observed the session to identify opportunities to clarify the wording of questions and/or to augment with new questions worthy of inclusion. Participants were asked at the end of the session if there were any other related questions not discussed that they thought should be included in future groups. The research team met to debrief and modify the focus group guide to incorporate feedback from the team and the participants. Subsequently, the question guide was modified slightly in an iterative process as the focus groups progressed to accommodate new issues that were raised by adolescents. During the last few groups, the investigators reached a consensus that focus group discussions yielded no additional information about the impact of ADHD on adolescent's lives and insight about medication treatment decisions. This determination was based on concurrent data analysis, as described below. As thematic saturation had been reached,18 recruitment of participants for the focus groups was suspended with 44 of the 184 eligible and interested adolescents having participated in the study.
Each focus group session was transcribed verbatim and entered in a computerized transcript database. “Comments” were defined as any uninterrupted utterance in response to a question and each comment was assigned a unique identification number in the database. We used an inductive approach to coding whereby the research team allowed ideas and patterns of ideas to emerge from the transcripts without any pre-conceived constructs.18 Following each focus group, each of the 4 investigators, trained in 4 different (academic) disciplines (W.B.B., S.N.S., A.R.Z., M.O.V.), first read the transcripts independently and identified repeating ideas or patterns of ideas as themes. Collaboratively, the investigators labeled themes and constructed initial codes. During the second stage, the research team conducted focused coding, whereby the major and minor themes and their properties were described, categorized, and organized into a codebook. Each reader then independently coded participants’ comments utilizing the codebook which was revised as coding progressed. Regular group meetings were held to discuss the codes assigned to comments for each transcript and to arrive at consensus. This collaborative, reflective process allowed for the expression and discussion of multiple perspectives and prevented the personal or disciplinary biases of a single researcher from excessively influencing the findings.15,19,20 A total of 477 unique supporting comments corroborated 4 major and 21 minor themes. Using the transcript database, the investigators generated a list of all verbatim quotations supporting each of the themes and together selected the most representative comments for presentation here (n=86).
A total of 44 adolescents participated in 1 of 7 focus groups. The mean age of participants was 15.1 years (standard deviation [SD] = 1.6), and 41% were 16 years of age or older. Parent-reported race of participants was predominantly Caucasian (68.2%) and African American (25%), which is similar to the Cincinnati/Northern Kentucky general population. Consistent with the purposeful sampling method, a similar number of males (n = 24) and females (n = 20) participated. On average, adolescents had been diagnosed with ADHD 8.7 years (SD = 3.3) prior to focus group participation. Nearly all children (97%) had tried medication for ADHD, and based on adolescent reports during the focus group, 68% continued to take medication for ADHD.
Adolescents used a variety of terms to describe the meaning of ADHD in their lives. For many, ADHD was defined in behavioral terms (minor theme 1a):
“To me it’s always meant that I was hyperactive and couldn’t pay attention when people are talking to me.”
“…I used to feel so unfocused. It was like watching everybody else in a play. I sort of felt kind of cut-off.”
“I do think I am different because I notice a difference in my behavior and the way I think and the way I do things, but it’s not bad the way I do things. I kind of like the way I do things.”
Others defined ADHD using more abstract terms and concepts (minor theme 1b):
“It’s just a different way of processing thoughts.”
“Every human being has their own mental quirks, and it’s not always ADHD and it’s not always a mental illness or disease. Sometimes it’s just something funny that makes us different.”
For some, ADHD held no personal meaning as they denied that they had ADHD (minor theme 1c):
“I don’t know. I don’t feel that I have it. Sometimes I deny having it because don’t feel it is necessary or whatever.”
“I don’t think I got it. If I want to do my work, I will do it.”
The functional impact of ADHD and medication on multiple facets of adolescent lives was discussed in depth. Adolescents were able to assess and describe these impacts by contrasting their experiences with and without medication. Such contrasts were possible for many adolescents as medication use had been inconsistent and/or they were not currently taking medication. The key domains of functioning were: school, social interactions and relationships, personality, creativity, and driving. Select domains were relevant for some adolescents but not others. Comments in the left column of Table 2 are from teens who perceived problems from ADHD and/or benefit from the use of medication. Comments in the right column are from teens who did not perceive problems from ADHD and/or benefit from the use of medication. The relative frequency of contrasting teen comments presented is representative of the underlying distribution of responses in the raw data.
Most of the adolescents recalled that medication was recommended by teachers and/or physicians in order to achieve academic success. Most of these adolescents observed improvement in their performance at school while taking medication, though some did not report noticing a difference on or off medication (Table 2, minor theme 2a). Among those who reported academic improvement, most cited an enhanced ability to focus on schoolwork and achieve favorable outcomes.
The importance of peer influence and social acceptance was a prominent theme as adolescents discussed their perceptions of the impact of ADHD and medication use on their social lives (Table 2, minor theme 2b) and personality (Table 2, minor them 2c). Some identified specific improvements in their social interactions when taking medication while others felt that medication had a negative impact on their social lives and/or personality. Some described feeling “like a robot” only interested in completing school work. Others felt medication took away a feeling of exuberance that was part of their identity. As a result, these adolescents and, in some cases, their peers did not like who they were when they took medication. Peer assessment of the impact of medication was influential with some adolescents.
Many of the participants reported sharing their diagnosis with friends and that for some “having ADHD wasn’t a big deal.” However, stigma was still manifest in various forms and did impact them (Table 2, minor theme 2d). Most of the stigma was felt at school, and was related to social acceptance by peers. Adolescents also expressed a variety of views on how ADHD and/or medication impacted their creativity (Table 2, minor theme 2e). Insights were mixed as adolescents discussed ADHD’s impact on their writing, artistic, and computer gaming skills. Several student-athletes reflected on ADHD medication’s effect on their skills on the playing field with both positive and negative effects noted.
We presented participants with information about driving risks associated with ADHD. Few of the ≥ 16 year old adolescents were aware that they were at increased risk for automobile accidents compared to adolescents without ADHD or that medication had been shown to improve performance in driving simulators. Subsequently, some questioned the validity of these findings. Adolescents commented on the perceived impact of ADHD and medication on their driving skills (Table 2, minor theme 2f). Among the small minority of drivers who reported past citations and/or collisions, all denied that ADHD was a factor in the incident (e.g. “It was not my fault.”).
Participants commented on the consequences of medication side effects (e.g. appetite suppression and resultant weight loss, delay in sleep onset, irritability, etc.) and their experiences with changing dosages and/or medications. Many adolescents cited their experiences with side effects as a major reason they disliked medication and wanted to discontinue use. Participant comments from this subtheme were common (n = 38), but they did not shed new light on the experience.4,11 Therefore, we chose to exclude these verbatim quotations from Table 2.
Adolescents described involvement in discussions and decision-making with their parents and doctor that increased over time (Table 3). Teens describe being a silent bystander at the time of diagnosis (Table 3, subtheme 3a). Subsequently, some become ambivalent reporters (Table 3, subtheme 3b) and others more active reporters of symptoms and side effects during doctor visits and at home (Table 3, subtheme 3c). Some teens described having a role, along with their parents, in deciding which dosage was best for them (Table 3, subtheme 3d). While some teens seemed to be content with their level of involvement (Table 3, subtheme 3e), it was clear that others didn’t feel listened to by their parents or doctor because medication was continued despite their vocal protests (Table 3, subtheme 3f).
Teenagers described parental involvement in medication taking that ranged from providing direct supervision, to reminders, to providing no supervision (Table 3, subtheme 3g). Many adolescents acknowledged that forgetting to take their medication was an issue (e.g. “Sometimes I forget and sometimes I don’t.”). Some adolescents exerted autonomy over medication decisions through covert medication disposal (e.g. throwing away medication when parents weren’t looking) (Table 3, minor theme 3h) and overt trials on and off medication (e.g. convincing parent to let them stop taking medication for some period of time) (Table 3, minor theme 3i). Many teens reported that as they became more independent in decision-making regarding medications, they tested efficacy or continued efficacy of the medication. Some experimented over the summer months so they did not have to jeopardize their schoolwork.
As adolescents assumed increasing independence over management of medication for ADHD, choices became more deliberate (Table 4). Some adolescents began to use medication selectively depending on perceived need to complete daily tasks (e.g. tests, team sports) (Table 4, minor theme 4a). Some who had stopped taking medication questioned whether they should resume. Many adolescents expressed doubt and uncertainty about their future use of medication (Table 4, minor theme 4b). In group discussions, adolescents who viewed academic success as the primary purpose of ADHD medications, perceived little utility in continuing medication once school was finished. Uncertainty was also fueled by the trade-offs of taking ADHD medication recognized by adolescents (Table 4, minor theme 4c).
Based on self-reported data, 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. Select domains of functioning were relevant for some adolescents but not others. Adolescents described different roles that they played in managing medication as well as strategies they employed to exert autonomy over medication use. Peer feedback influenced appraisals of medication for some teens. Some adolescents had begun to use medication selectively. Many expressed uncertainty about future use of medication.
ADHD puts adolescents at risk for impaired functioning in multiple domains (e.g. academics,21 peer relationships,21 family relationships,22 driving23). Our analysis of adolescent comments demonstrates that the key domains of functioning impacted by ADHD were: school, social interactions and relationships, creativity, and driving skills. Select domains were relevant for some teens but not others. This highlights the need to tailor target outcomes and management strategies for the individual teen as recommended by the AAP1 and other authors.24,25 Interventions are needed to help adolescents, parents, and clinicians to negotiate shared goals and treatment plans as well as to monitor progress toward those goals. Goals that are S.M.A.R.T. (i.e. specific, measureable, attainable, relevant, and time-bound) may be more likely to lead to improvement.26 While our study was not designed to determine the accuracy of teen appraisal of impairment, there is strong evidence that children with ADHD have unrealistically high self-views of skills and competence compared to children without ADHD.27 Differences of opinion on functional impairments may be a source of conflict between teens and their parents. Interventions that result in accurate self-appraisals may help teenagers to more effectively manage their ADHD.
Many adolescents described their involvement in discussions and decision-making with their parents and doctors as inadequate. Why might this be? Despite their lobbying efforts, medication is continued. Parents likely know their teen’s opinion but limit their share in decision-making due to worry that he/she lives in the moment and doesn’t prioritize outcomes that are important in the long run. Parents likely fear that their teen will ‘ruin their life’ by missing opportunities that he/she will come to value later (when it’s too late). Based on teen perceptions, some parents and doctors are more successful than others in involving them in a meaningful way in management decisions. Medication use becomes a battle of attrition for parents and teens unable find common ground.
Normal adolescent development is characterized by the pursuit of independence. For teens with a chronic health condition, efforts to exert control over daily life often include aspects of medication management.2 Selective use of ADHD medication described by adolescents in this study mirrors that reported by college students.11 Whether selective use of ADHD medication constitutes effective self-management or misuse of a prescr prescription medication is debatable, but awareness of selective use is important for physicians and parents so that medication can be a continued topic of discussion given the chronic nature of ADHD. Our previous work with parents of children/adolescents with ADHD revealed that trials on and off medication to determine the continued need for medication were common and rarely coordinated by a physician.28 In the current study, adolescents reported similar trials stopping medication. This phenomenon may represent a continuation of the medication usage pattern demonstrated by their parents, curiosity on the part of adolescent patients, or an act of rebellion from teens who feel their voice is not respected by their parents and/or doctor. Regardless, adolescents and their parents may benefit from trials that are more highly structured. The American Academy of Child and Adolescent Psychiatry,29 authors of the Multimodal Treatment Study of ADHD in Children,30 and others31,32 have recommended that physicians coordinate trials stopping medication as follows: 1) consider annually when stable and doing well, 2) best when there are few transitions or demands (e.g. mid-school year), 3) avoid at beginning of any school year, especially at the start of junior/senior high school, 4) try discontinuing medications for 2 to 4 weeks with close monitoring of target outcomes. Structured trials stopping medication have the potential to be a powerful tool to foster productive partnerships between adolescents, parents, and physicians. Such trials can empower teens by legitimizing their preferred option of discontinuing medication, giving them more of a voice in discussions with their parents and doctors. Well-structured trials can also reassure parents by operationalizing a measurement system to detect early struggles before they become crises (e.g. school failure, delinquency, etc.). Use of S.M.A.R.T. goals, discussed previously, may accelerate what adolescents, parents, and doctors learn from trials discontinuing medication. Future studies should test whether physician-directed trials of medication discontinuation can identify children/adolescents with ADHD who continue to suffer from functional impairments in a timely manner and avert undesirable outcomes.
Many adolescents in our study and previous studies dislike taking medication for ADHD due to side effects, lack of perceived need for or improvement from medication, and/or social stigma.3–11 It is striking that despite the advent of extended-release medications that eliminate the need for a daily visit to the school nurse’s office, these teenagers reported stigma in the school setting as a result of comments or actions of other students and/or their teachers. In addition, social networks and peer acceptance were influential. Positive and negative feedback from peers, some of which was directly solicited, weighed heavily with some adolescents as they appraised the utility of medication. This finding is in contrast to a study by Knipp et al. that reported teens with ADHD did not perceive that their friends noticed a difference when they were on or off medication.10 This may be due to the fact that the previous study included only adolescents currently taking medication whereas one-third of adolescents in our study were no longer using medication.
Very few of the adolescents ≥ 16 years old in our study were aware of driving risks associated with ADHD or that medication can improve driving performance in teens with ADHD.33 Moreover, many adolescents remained skeptical about their personal risk after being presented with this information. The AAP policy statement entitled “The Teen Driver” has highlighted the need for prevention through office-based counseling and other efforts.34 Future studies should examine how adolescents with ADHD process risk information when making decisions about medication use.
This study has several limitations. Information was elicited in focus groups comprised of adolescents who were mainly White or African-American, which was reflective of the region’s racial composition and therefore may not reflect the views of other racial/ethnic groups of teenagers in other regions. Also, the group setting may have inhibited some adolescents from electing to participate in the study. Adolescents who did participate may have been influenced by comments made by others in their group and biased our findings toward consensus view or opposite views.
The strength of qualitative research is that it allows us to gain a deeper understanding of a phenomenon in the words of those who are affected by an experience.15 In this case, what was not well understood was how adolescents with ADHD view the disorder and contribute to medication treatment decisions. Using focus groups and a semi-structured question guide, we probed, in-depth, the perspectives of a group of adolescents living with ADHD. Interpretations of the teens’ statements were made by consensus of a multi-disciplinary team of researchers with varying perspectives. Together, the authors describe how teens contribute to ADHD medication treatment decisions. While efforts were taken to generate a sample with variation in age, gender, race, and urban-suburban residence, this study was not meant to produce any conclusion about the phenomenon under study that could be generalized to all adolescents with ADHD. Opportunities exist for quantitative investigations to test the implied hypotheses about relationships between variables identified that influenced adolescents in our study.15
Adolescents assume an increasing role in managing medication for ADHD, but may benefit from support. Time on/off medication informed perceptions of ADHD and medication. 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. Studies are needed to determine the efficacy of such interventions and guide their implementation in clinical practice.
Select functional domains were relevant for some adolescents but not others, highlighting the need for negotiation of shared treatment goals that are measureable. Structured trials stopping medication are described which may help clinicians support the transition from family to self-management.
The authors have no conflicts of interest to report. Conduct of the study was funded by Eli Lilly and Company. The sponsor reviewed and approved the manuscript for submission without revision. The sponsor had no role in design, conduct, data analysis/interpretation, or manuscript preparation. Dr. Brinkman is supported by a Mentored Patient-Oriented Research Career Development Award from the National Institute of Mental Health (K23 MH083027). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Mental Health or the National Institutes of Health. We acknowledge the community-based practices that recruited participants for this study and David Schonfeld, MD who assisted with development of the focus group guide.
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Potential Conflicts of Interest: None of the authors have a conflict of interest to report. Eli Lilly and Company had no role in design, conduct, data analysis/interpretation, or manuscript preparation. The sponsor reviewed and approved the manuscript for submission without revision.