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.
Attention-deficit/hyperactivity disorder (ADHD) is a common neurobehavioral disorder that affects children and adolescents.1 ADHD results in impairment of academic, social, and family functioning. Parenting a child with ADHD is stressful2, 3 and can lead to feelings of inadequacy and self-blame.4–6 In addition, different conceptualizations of ADHD among parents can be a source of conflict as fathers more often than mothers tend to resist the label of ADHD and treatment with medication.4, 5, 7–9 Similar to other pediatric chronic conditions, parents play a key role in implementing treatment plans that are made during visits with their child's doctor. Despite the efficacy of medication to reduce ADHD symptoms,10 medication initiation is variable,1 and medication continuity is poor because many children stop taking medicine and/or have extended gaps in medication supply.11, 12 Although studies have identified child characteristics (eg, age, race)11–16 and medication management factors (eg, dosing regimen)11, 16 related to medication continuity, factors that influence family decision-making have not been fully elucidated. The objective of this study was to better understand how parents make decisions about treatment for their child or adolescent with ADHD. We used qualitative research methods, because they are often useful in exploring complex, multi-faceted questions that may not be readily understood by more direct, close-ended quantitative survey methods. The methods were used to generate a theoretical framework for how parents approach ADHD treatment decision-making and not to test specific hypotheses.17–19
PARTICIPANTS AND METHODS
With Cincinnati Children's Hospital Medical Center institutional review board approval, we conducted 12 focus groups with parents of children and adolescents with ADHD in July and August of 2006.
Parents were eligible to participate if their child had been diagnosed with ADHD, was between the ages of 6 and 17 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. Children (n = 3596) were identified through a billing database. We stratified by gender and age (6–9, 10–12, 13–15, and 16–18 years of age) and randomly sampled an equal number from each stratum. This procedure enhanced sample variability by ensuring that parents of boys and girls at a full range of ages would have an equal opportunity to participate. Subsequently, parents (n = 233) received a letter from their child's doctor inviting them to participate in the study. Thirteen parents indicated that they did not want to be contacted. The remaining parents received a follow-up telephone call. Ninety-eight parents could not be reached. Of the parents contacted by telephone (n = 122), 71% expressed interest in participating. Secondary telephone screening ensured that the sample included only the “parent” (eg, biological parent, legal guardian, etc) who identified herself or himself as the child's primary caregiver to ensure that participants had relevant experience making ADHD treatment decisions.
During recruitment, each parent answered a brief telephone screening questionnaire that included questions about the diagnosis and treatment of their child with ADHD as well as demographics. Parents provided written informed consent before participating in the focus group. Focus group sessions were held at Cincinnati Children's Hospital Medical Center and 3 community-based outpatient centers. The focus groups averaged 1.5 hours in duration and were audiotaped. Each parent was reimbursed $50 for their time and travel expenses.
Focus groups were led by 1 of the investigators (Dr Sherman), 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. Broad, open-ended questions were followed by more specific, probing questions to clarify the participants' responses and to narrow the discussion. The questions were designed to explore parent experiences making decisions about management of their child with ADHD. The question guide was modified slightly in an iterative process as the focus groups progressed to accommodate new issues that were raised by parents. A consensus was reached by the investigators that thematic saturation (ie, point at which new observations yielded no new information to challenge or elaborate the framework)17, 20 was achieved by the conclusion of the 12th focus group and recruitment was terminated. Therefore, 52 of the 122 eligible and interested parents participated in the study. A copy of the focus group guide is available on request.
Each focus group session was transcribed verbatim and entered in a computerized transcript database. We used a grounded theory approach to our data,21 whereby 4 investigators (Drs Brinkman, Sherman, and Visscher, and Ms Zmitrovich) read the transcripts and collaboratively identified emerging themes. Then, through group sessions, we labeled themes and constructed a codebook. Each reader then independently coded parent responses using the codebook. Group meetings were held to discuss the codes assigned to statements and to arrive at consensus. Use of >1 investigator to analyze the raw data, such that the findings emerge through consensus between investigators, is a method to prevent the personal or disciplinary biases of a single researcher from excessively influencing the findings.17, 20, 22 A total of 501 unique supporting comments corroborated 8 major and 33 minor themes. By 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 = 71).
A total of 52 parents participated in 1 of 12 focus groups. Participant characteristics are presented in Table 1. Parents were predominantly mothers (82%), although 4 fathers, 3 grandmothers, 1 aunt, and 1 foster parent also participated. Self-reported race of participants was similar to the Cincinnati/Northern Kentucky general population; 32% reported a high school education or less. Nearly all children (96%) had tried medicine for ADHD.
Domain 1: Context of Decision-Making—Parent Stressors
Table 2 delineates the emotional context of decision-making for parents of children with ADHD. The themes of parental self-doubt, daily struggles at home and school, parental conflict with each other, and the emotional burden of decision-making impact the process parents experience in making treatment decisions for their children.
Parents experience a wide and complex variety of stressors as they decide how to help their child with ADHD. Many parents begin to doubt their parenting skills and/or blame themselves for the difficulties encountered by their child (theme 1). Parenting skills are challenged on a daily basis and parenting becomes very taxing and largely punitive rather than rewarding (theme 2). Many parents have stressful conflicts with their child about homework completion and following instructions. Stress also results from the shear amount of effort required to parent a child with ADHD and the ineffectiveness of those efforts. Parents report that issues surrounding their child's struggles at times permeate their immediate and extended families and often their personal lives, resulting in tumult, dissension, and dysfunction. In addition, parents are stressed by their child's struggles at school and/or feel external pressure from school personnel to take action (theme 3). For some parents, ADHD is a divisive issue, with mothers and fathers coming to different conclusions about the nature of their child's behavior and the appropriateness of treatment (theme 4). Parents experience a gamut of emotions when deciding about treatment for their child with ADHD. Emotions include anger, disappointment, desperation, and ambivalence (theme 5). Some parents identified 1 of these stressors, whereas others cited the cumulative effect of multiple stressors.
Domain 2: Factors That Influence the Decision to Initiate Medication (Table 3)
Many factors influence whether parents choose to initiate medication for their child with ADHD. Parents described factors that supported the initiation of medicine (theme 6a) as well as factors that delayed their decision to do so (theme 6b). These factors are contrasted in Table 3. Recognition that their child is suffering from functional impairments is a key factor that prompts parents to initiate medication. Many parents stated they had been in denial that their child had a problem. Communication with the child's teacher impacted problem recognition for many parents. Parents reported that acceptance of the diagnosis of ADHD was an important factor. Stories from personal and/or third party experiences with ADHD and medication are often influential. Physician and family support are very influential factors as well. Information from a variety of media was also important. For some parents, espousing belief in a biomedical model for ADHD facilitated initiation of medication. For others, concern about stigma was a barrier to treatment. Parents also reported many concerns that delayed initiation of medication, including a general reluctance to use medicine, the belief that medicines should not be relied on as a solution for behavioral problems, and fears about drug addiction and adverse effects. Facilitators of medication initiation included failure of nonmedication treatment modalities, parent awareness of potential long-term consequences of ADHD, and viewing stimulants as an established medication. Viewing the initiation of medication as a time-limited trial was a strong facilitator. Many parents reported that their child's doctor introduced the idea of trying medicine for a month to see if it would helpful for their child. This approach reduced anxieties for many parents. Parents report that experiences during the trial of medicine help to inform subsequent decisions about whether to continue medication. Perceived benefits were weighed against the adverse effects experienced. For some, the decision to continue medicine became easy, because the benefits far outweighed the adverse effects. For others, uncertainty persisted as they tried additional dosages and/or medications after experiencing inadequate benefit or intolerable adverse effects. This led to frustration and disillusionment about medication treatment for some families.
Domain 3: Continued Doubt and Uncertainty (Table 4)
Many parents reported revisiting the decision of whether to keep giving their child medication for ADHD (theme 7). Many parents had lingering concerns about medication despite perceived efficacy. Some parents revisited the decision because of conflicts with their child about taking medicine. Many parents wondered how long their child would need medication with some hoping their child would outgrow ADHD and others worried that the need for medication would continue. Many parents reported uncertainty about the continued need for medication.
An unexpected theme that emerged from the focus groups was that many parents reported that contrasting their child's experiences on and off medication helped inform decisions about whether to persist with medication (theme 8). This theme was not a part of the interview guide, yet it appeared as parents spontaneously shared their thoughts about revisiting decisions. For some, time off medicine was unintentional and the result of their child forgetting to take the medicine. For many, medicine was intentionally discontinued as a trial to see if the child still benefited from the medicine. Parents reported trials stopping medicine that were doctor-, parent-, and child-initiated. It is noteworthy that such trials were seldom coordinated by the child's doctor. Trials stopping medicine convinced some parents of their child's continued need for treatment, whereas others found that their child could function well without medicine. Regardless, the trial lessened parent uncertainty about the proper course of action.
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.
This study has several limitations. First, the findings were from a sample of mainly mothers who were white or black. Also, nearly all parents had tried medicine for their child with ADHD. Perspectives may or may not differ from those of fathers or parents of other cultural backgrounds and parents who do not initiate medication. In addition, it is difficult to separate parent views of diagnostic uncertainty, labeling terms, and conceptualization of the disorder, because these feelings and perceptions coalesce and impact decisions about treatment. Qualitative research offers a rigorous alternative to armchair hypothesizing in areas for which insight may not be well established or for which conventional theories seem inadequate.17 In this case, what was not well understood was how parents make decisions about treatment for their child or adolescent with ADHD. Using focus groups, we probed, in-depth, the perspectives of a group of parents of children and adolescents with ADHD. Interpretations of the parents' statements were made by consensus of a group of readers with varying perspectives. Together, the authors developed an explanation of how parents make ADHD treatment decisions. This study was not meant to produce any conclusion about the phenomenon under study that could be generalized to all parents of children with ADHD. Opportunities exist for quantitative investigations to test the implied hypotheses about relationships between variables identified that influenced parents in our study.17
It is possible that the group setting may have inhibited some parents from participating in these focus groups. It is also possible that parents who struggled were more likely to choose to participate. For many parents the group discussion seemed to have a cathartic effect. Some parents yielded an unanticipated source of support as they exchanged information about ADHD-related resources and/or exchanged telephone numbers after the focus group concluded. Despite these limitations, this study suggests that a variety of factors influence the decision to initiate medication. Our analysis of parent comments corroborates previous work in this area and provides a far more comprehensive collection of factors than previous studies.4–7, 23–35 Previous efforts implementing the American Academy of Pediatrics clinical practice guidelines for the diagnosis and treatment of ADHD demonstrated a need to augment the time-constrained efforts of physicians to educate and support parents.36 Future studies are needed to develop and test systems to support parents facing treatment decisions for their child newly diagnosed with ADHD.
After initiating treatment, stopping and restarting medicine for ADHD is common.11, 37, 38 Qualitative methods, such as those employed in the current study, are essential to develop a richer understanding of this phenomenon. Parents in the current study and others6, 7, 39, 40 continue to experience fears and worries related to the potential for long-term adverse effects, even if their child shows marked improvement. This phenomenon is especially pertinent given ongoing public discussion of the effect of stimulant medications on growth41, 42 and the possible linkage between sudden cardiac death and the use of ADHD medications.43–47 Past and present experience of adverse effects is also a cause for concern. In some cases, lack of child willingness to take medicine is a significant challenge. It is noteworthy that child refusal to take medication continues to be a significant issue despite the advent of extended release preparations that eliminate the need for a daily visit to the school nurse's office and thereby remove much of the stigma of taking medication for ADHD. Parents weigh medication concerns and challenges against the functional improvements seen at home and at school. It is expected that children and adolescents and their parents question whether their goals can be achieved without medication. Contrasting time on and off medication is a rational way to inform decisions about the continued necessity of treatment. Although this may run counter to traditional ideas about “adherence” and lead to some second guessing for those whose problems recur off medication, such trials are likely to reduce a great deal of anxiety and uncertainty on the part of children and adolescents, their parents, and physicians.
Given the low rates of ADHD medication follow-up that have been documented,48–52 it is not surprising that parents in this study rarely reported physician involvement in trials stopping medication. To our knowledge, there are no estimates in the literature for how often physicians coordinate such trials. The American Academy of Pediatrics clinical practice guideline for the treatment of ADHD53 emphasizes the importance of ongoing monitoring of target outcomes and adherence to the treatment plan, but does not explicitly discuss trials of medication discontinuation. Recently, authors of the Multimodal Treatment Study of ADHD in Children have recommended this practice to determine if there is continued need for medication or if symptoms have remitted.54, 55 Recently updated ADHD treatment guidelines from the American Academy of Child and Adolescent Psychiatry56 and the Institute for Clinical Systems Improvement57 provide guidance for the conduct of such trials stopping medication: “(1) consider annually when stable and doing well; (2) best when there are few transitions or demands (eg, midschool year); (3) avoid at beginning of any school year, especially at the start of junior/senior high school; and (4) try discontinuing medications for 2 to 4 weeks with close monitoring of target outcomes.” Anecdotally, some families who stop treatment on their own face a crisis (eg, school failure, delinquency, etc) before they resume medication. This begs the question, how much struggle is necessary to raise awareness of the continued need for medicine? Future studies should test whether physician-directed trials of medication discontinuation can identify children and adolescents with ADHD who continue to suffer from functional impairments in a timely manner and avert undesirable outcomes. Studies are also needed to identify additional reasons why children with persistent ADHD symptoms stop and/or restart medication treatment. The current study elicited the parent perspective on ADHD treatment decision-making. Additional studies are needed that elicit the perspectives of children and adolescents with ADHD as well as the views of their primary care doctor.
This study provides evidence that decisions about medication for children and adolescents with ADHD are made and frequently revisited by their parents. Choices are often made under stressful conditions and a variety of factors influence these decisions. 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. Future studies are needed to determine the efficacy of such interventions and guide their implementation in clinical practice.
This study was funded by Eli Lilly and Company.
We acknowledge the community-based practices that recruited participants for this study. We also acknowledge David Schonfeld, MD, for assistance developing the focus group guide and Jeffery Epstein, PhD, for helpful feedback on the manuscript.
- Accepted December 3, 2008.
- Address correspondence to William B. Brinkman MD, MEd, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, ML 7035, Cincinnati, OH 45229-3039. E-mail:
Financial Disclosure: The authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject:
Initiation of medication for ADHD is variable and persistence with therapeutic regimens is poor. Parents play a key role in managing medication use for their child with ADHD.
What This Study Adds:
This study identifies factors that influence parent decision-making about the initiation and continuation of medication treatment. Awareness of these factors may help physicians address the concerns of families while managing ADHD.
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- Copyright © 2009 by the American Academy of Pediatrics