Attitudes Toward Stimulant Treatment of Offspring of Adult Patients with Attention-Deficit/Hyperactivity Disorder

Abstract

Aim:

The objective of this study was to investigate how adult patients with attention-deficit/hyperactivity disorder viewed the testing and use of stimulants in their children.

Methods:

Using a qualitative approach, we interviewed 32 outpatients from a special care unit of a university hospital.

Results:

Emerging themes centered around concerns about the right age to test children and opinions about stimulant treatment ranging from unreserved agreement to reluctance, as well as the need for a shared decision with the child.

Conclusions:

Our results suggest that better psychoeducational programs are needed, especially for adults with attention-deficit/hyperactivity disorder, in which long-term consequences of the disorder, areas of impairment, and possible treatment effects in their children are explained and concerns about unknown side effects and the right time to test and treat are addressed.

Introduction

Although attention-deficit/hyperactivity disorder (ADHD) was once thought to remit during adolescence or early adulthood (Hill and Schoener 1996), a growing body of literature suggests high rates of persistence into adolescence and adulthood (Barkley et al. 2002; Kessler et al. 2005; Fayyad et al. 2007; Spencer et al. 2007; Kooij et al. 2010; Ginsberg et al. 2014). The clinical picture may evolve over the years, with some symptoms becoming less visible (Wolraich et al. 2005; Kooij et al. 2010), but increasing educational and social demands potentially leading to greater impairments. This view of ADHD as a life span disorder highlights the importance of early diagnosis and treatment (Kooij et al. 2010; Fiorillo et al. 2013; Bolea-Alamañac et al. 2014).

Children and adults with ADHD face various difficulties associated with the disorder (Harpin 2005), among them impaired social (Hoza 2007; Bunford et al. 2015; Miranda et al. 2015; Humphreys et al. 2016; Wiener et al. 2016), academic, and occupational functioning (Harpin 2005; Asherson et al. 2012; Biederman et al. 2012; Harpin et al. 2016); a higher risk for substance use and other comorbid disorders (Kessler et al. 2005; Spencer et al 2007; Kooij et al. 2010; Lee et al. 2011); difficulties at work (Halmøy et al. 2009; Gjervan et al. 2016); sleep disturbances and driving problems (Barkley and Cox 2007; Sung et al. 2008); higher costs for patients, families, and third-party payers (Matza et al. 2005); and poor quality of life (Escobar et al. 2005).

A further domain of functioning where patients with ADHD appear to be impaired is parenting (Harvey et al. 2003; Johnston et al. 2012). Because of the strong genetic component of the disorder, parents with ADHD have a higher probability of having children with the same disorder (Johnston et al. 2012). High levels of parental ADHD may in turn, due to parenting difficulties, hamper treatment for their children (Sonuga-Barke et al. 2002) and interaction with them (Babinski et al. 2014).

Stimulant and psychotherapeutic treatments appear to be well-established treatments for ADHD in both children and adults, the first being supported by stronger evidence in several age groups (Ebert et al. 2003; Barkley 2004; National Institute for Health and Care Excellence 2008; Van der Oord et al. 2008; Kooij et al. 2010; Subcommittee on Attention-Deficit/Hyperactivity Disorder et al. 2011; Seixas et al. 2012; Bolea-Alamañac et al. 2014). Stimulant treatment has been shown to reduce symptoms and improve social behavior and academic functioning, self-esteem, and self-rated depression (Schachter et al. 2001; Abikoff et al. 2004; Hechtman et al. 2004; Van der Oord et al. 2008; Moriyama et al. 2013; Harpin et al. 2016). Halmøy et al. (2009) also found that stimulant therapy in childhood was the strongest predictor of future employment as an adult.

Despite the evidence supporting stimulant treatment and the knowledge of worse outcomes across domains without treatment, many patients or their parents remain sceptical about long-term medication use, causing concerns about adherence (Thiruchelvam et al. 2001; Krain et al. 2005; Bussing et al. 2011). In a literature review, Adler and Nierenberg (2010) found that among children and adults, 13.2% to 64% discontinued their treatment.

Understanding the reasons for undertreatment—whether for a lack of treatment initiation or for nonadherence—thus becomes an important public health question (Subcommittee on Attention-Deficit/Hyperactivity Disorder et al. 2011). Since ADHD is a lifelong disorder and parents often function as gatekeepers of help seeking in children, their attitudes toward ADHD and its therapy may be crucial for diagnosing ADHD as well as for initiation and adherence to treatment.

In light of this, the authors surveyed adult ADHD patients in continuous treatment about their experience with treatment and their attitude toward ADHD treatment for children. Since the evidence for stimulant treatment is particularly strong and psychotherapeutic interventions seem to be better accepted in children (Krain et al. 2005; Stroh et al. 2007), the authors focussed the investigation on psychopharmacological treatments.

Methods

Study design

This study was designed with an exploratory qualitative approach and is reported according to the consolidated criteria for reporting qualitative research (COREQ) guidelines (Tong et al. 2007). We conducted a series of semistructured interviews with adult patients with ADHD. Approval of the study was obtained from the Cantonal ethics committee of Zürich (Application No. E-04/2005). Recruitment followed purposeful sampling procedures among outpatients being treated in a specialized unit for ADHD diagnosis and treatment at the university hospital in Zürich.

Participants

The participants for this study were subjects with a diagnosis of having ADHD according to the 10th revision of the International Classification of Diseases (World Health Organization 1992), aged at least 18 years, and who had previously been referred to Zürich's Psychiatric University Hospital for diagnosis and treatment. Only patients with sufficient command of German language were included.

A total of 184 subjects were identified by their treating psychiatrists and then approached by letter. A member of the research group then approached 49 interested candidates by telephone, of whom 17 agreed to participate, 20 were not interested in the study, and 12 declined because of lack of time. In a second stage, 12 more participants were referred directly to the research group by their treating physicians. Special care was taken to procure a sample with sufficient diversity in gender, age, duration of treatment, comorbidity, and occupational status.

In all, 32 subjects agreed to participate and provided their written informed consent for digital recording of the interview. The participants' medical history and charts were made available by the clinic. A member of the research group who was not involved in treatment and therefore unknown to the participants then made the appointments for the interviews by telephone. To avoid response bias, the interviews were not available to the treating psychiatrists.

Procedure

A semistructured flexible interview was developed to explore experiences with treatment and attitudes toward treatment of children with ADHD. Sample questions were as follows: Do you take stimulants? What effects have you noticed? Would you treat your child? Why? How? According to standard procedures in qualitative research, narrative questions were used to open the interviews and followed by open-ended questions and nonjudgmental and nonleading probes to help avoid response bias. Ambiguous statements were clarified by paraphrasing and summarizing the main points.

The interviews were conducted in Swiss German, an Alemannic dialect used in the German-speaking parts of Switzerland. A.B. and C.C., both psychiatrists (medical degree) with experience in ADHD treatment and qualitative research and working at the Psychiatric University Hospital, conducted the interviews on a one-to-one basis and took field notes. To foster an atmosphere in which patients could speak freely, the interviews were conducted in offices outside the treatment setting and with only the participant and the interviewer present. Before the interview, participants were informed that it would address their view of the disorder, its treatment, and other related topics and that the interviewers had experience in ADHD treatment and were interested in doing research on these questions.

The interviews lasted between 45 and 90 minutes. They were digitally recorded using an Olympus DS-7000 and then transcribed verbatim into standard German. Since Swiss German is, in fact, a spoken language not usually used for writing, and standard German is the officially written language in Switzerland, the interviews were automatically transcribed into standard German. All potentially identifying information was removed before a code number was assigned. There were no repeat interviews and the transcripts were not returned to the participants.

The interviews were analyzed separately and blindly by M.L., A.B., and C.C. The researchers approached the collected data according to Mayring's qualitative content analysis (Mayring 2001) without assumptions. After familiarizing themselves with the transcripts, coding and analysis were done using an inductive approach. A word processor (Microsoft Word for Windows 2013) was used to manually code and analyze the collected data.

Regular meetings were scheduled to discuss the data and the themes that had been identified and, where necessary, to redefine the categories obtained. The first themes to emerge were the opinions about treatment of children. According to recommendations for qualitative research, the authors decided to adapt the following interviews to further investigate the aforementioned research questions. Codes were compared and discussed, with M.L. applying the final code. The most apt quotes were then chosen to be included in the article. They were next translated into English by C.C. and afterward translated back into German by A.B. and M.L. During the subsequent discussion, the translations were reviewed and corrected as necessary with M.L. choosing the most accurate translation. Since quotes were transcribed verbatim, they were then corrected grammatically to improve comprehension. Proofreading by a native English speaker helped to improve comprehensibility.

According to standard procedures in qualitative research, recruitment continued until saturation had been reached. Usually, saturation is defined as the point when no new themes can be found.

Results

Demographic characteristics of the sample are provided in Table 1. All participants were in continuous treatment. During the interview, all participants reported having subjectively benefited from stimulant medication and often mentioned in passing their suffering from functional impairments due to ADHD in different areas of life before treatment. Some examples are cited.

Table 1.

Demographic Characteristics

Sex
Female	14	43.75%
Male	18	56.25%
Age
20 years old or less	0	0%
21–30 years old	7	21.88%
31–40 years old	9	28.13%
41–50 years old	8	25%
51 years old or more	8	25%
Age at diagnosis
Childhood (<16 years old)	4	12.5%
16–25 years old	9	28.13%
26–35 years old	4	12.5%
36–45 years old	9	28.13%
46 years old or more	6	18.75%
Employment
Unemployed	3	9.38%
Fully employed	7	21.88%
Part-time employed	7	21.88%
School/University	5	15.63%
No information	10	31.25%
Children
Childless	18	56.25%

…And then, everything turned around 180 degrees. And it worked extremely well. I was 17 and yes, I came top of the class. It all became easy for me, because I could pay attention in class. I never had to study anymore. It was a very good time, I got my matura (certificate of general qualification for university entrance) in one year …VP2” …I was calmer, for sure. Not so impulsive anymore, in a positive and negative sense. I don't suddenly laugh out loud or get mad. It all got minimized… VP4 …If I stop taking pills, it takes about two weeks for the old exhaustion depression to come back and the inability to…thought number 1, thought number 2, thought number 3, eh I have sometimes up to 40 at a time. Sometimes it gets very loud in my head…and I lose my train of thought and I get tired faster. Tired of myself, of my brain and the way it works…VP15 …Basically, it's because of that that I don't want any children. Because I don't want…I don't want this child to have to put up with such a difficult life as I had… VP7

Testing children for ADHD

Nearly all participants agreed on the need for testing children. Interestingly, several implicitly showed certain awareness of possible stigmatization through testing, but claimed to have an open attitude to the topic. The awareness of possible stigmatization by the child's peers was not apparent.

…Yes, immediately!… VP7 …Yes, immediately…Because I just don't see it as a stigma…VP24

Concerning the topic of ADHD, many participants spontaneously referred to their own experiences with the disorder when they emphasized the need for testing and showed concern for the well-being of the child if not properly tested.

…And I think a child needs to be tested, absolutely. A child with ADHD that doesn't know it, faces a very difficult time. I know it from my own experience …VP28 …I think there is nothing worse than showing that you don't care. And not to carry out testing, that's kind of strange for me…VP18

The right time

One of the main themes found was differing opinions about the right time for testing. While some argued for early testing because it made early intervention possible, thus ensuring an easier development for the child, others showed themselves more reluctant and favored testing when the need arose or at a crucial point in development, for example, before starting an apprenticeship. Otherwise, they preferred a more natural development as long as the child did not exhibit major difficulties.

…I believe, that the sooner you get a diagnosis, the sooner you can intervene and influence certain behavioural patterns to accommodate the child's development …VP5 …And I want to do this at the beginning of next year, also because he is looking for an apprenticeship and I don't want it to be for him as it was for me, like, like feeling totally overloaded before even getting there…VP12 …And then, when they told me the diagnosis, I decided to wait with him. I didn't want him to feel that he has a strange disorder or that he is different from others… And I will wait for as long as he gets along. And when I feel that he has difficulties and he doesn't feel comfortable, then I will have the testing done…VP11

Medication

The main themes found when discussing the treatment of children with stimulants were agreement, shared decision-making, and reluctance to use medication other than as a last resort.

Agreement

While none of the participants completely rejected stimulant treatment of children, only a minority spontaneously voiced unreserved agreement.

…It's the same when a child is born with a disability and it needs medication to live a normal life. Then I would also say, o.k., then it just needs it…VP22 … If problems can be solved [with medication], then they should certainly not be fostered, you know what I mean?… VP10

Again, several could relate to their own experiences with and without medication and used this to argue for stimulant treatment.

…Yes, because as I said, I believe it's not only horrible for the parents or the teachers but it's also a burden for the child… VP13 …So, should he (the child) arrive at a point similar to my own, I would start with drugs, or rather even sooner than I did… VP15 …I believe the sooner, the better… (Interviewer: Does that mean, you would have wished for medication, retrospectively?) Yes, surely, a lot would have been different then. And I think that many adults with ADHD, they don't feel better over the years if they aren't treated …VP27

Shared decision-making

A significant proportion of the participants expressed the opinion that the decision about taking stimulant medication should be shared with the child or made by the child.

…I think… I think it would be important to allow the child to share in the decision. That the parents don't just tell it to take it.VP1 …And I think it's right, even with medication, that whether somebody wants to take it or not - that it's his decision. A child can say clearly whether it wants something or not… VP26

Reluctance

In spite of their own positive experiences with stimulant treatment, many participants showed a certain reluctance regarding this topic. None of them were completely against stimulant treatment; however, they clearly did not see it as a viable first-line treatment, but as something to be used, in principle, as a last resort.

…Only when the impact on life gets really horrible… I would do it. But only with a very low dose…VP5 …I think I wouldn't give him Ritalin from the start. That's dead wrong…VP1 …Should it have trouble following at school, then yes. Otherwise not… VP9 …Of course, you've got to try as long as you can in a natural way, or whatever. With children you have to try and see how much you can do without medication…VP22

Even in situations where stimulant therapy was perceived as necessary, some participants felt the need to constantly reevaluate the treatment and, if possible, to discontinue it.

…I think it's ok, but I would also look, mmh… I would constantly look, whether it's really necessary, always, whether it's really something it always needs or if there are other options or alternatives… VP26

Clearly some advocated a natural development and were therefore reluctant to use stimulants unless as an option of last resort.

… don't want an honour student. He should do as he pleases, but should I find out that he's starting to doubt himself, then I would perhaps do something with medication…VP11 …And a child should be allowed to be a child…VP6

As with testing, several participants considered the right timing an important factor. Mostly, they were of the opinion that taking medication depended on the academic demands on the child.

…I would surely wait for school and if the marks were bad, I would definitely consider it (medication)…VP3 …After the fourth grade school becomes more demanding… But I just don't see a reason to give a child medication before that…VP6

Concerns about side effects and how thoroughly they have been studied were also reported, as well as a more diffuse anxiety about using chemicals per se and on children in particular.

…The long-term consequences… what a drug can do to a child that is still growing - this I would have to look into some more…VP23 … I would have to read more about this. How it works in a child's body and how…how well the secondary and long-term effects have been investigated… VP16 … Because I have always been against chemicals on principle… And people don't say only good things about stimulants… I mean, this must surely leave an enduring mark…VP7 …There are studies showing that children have growth deficits if they are treated with methylphenidate. I think… I think, I would not treat my children pharmacologically, as long as there are other methods. Only if there are really, eh, I mean really major effects on their lives…VP5

Other reasons for a conservative use of medication included the idea that a child had to learn to cope with the disorder without medication or the fear of pharmacologically adapting a child to social expectations.

… I wouldn't give her drugs (her daughter, five years old)… Just because I think that you have to learn to live with it… VP4 …Maybe because it's, yes, I mean, seen from an ethical viewpoint, it's also… If you give a child pills so that it can adapt better, well, it's debatable…VP3

Discussion

To the authors' knowledge, this is the first study to investigate the opinions and attitudes of adult ADHD patients toward testing and stimulant treatment of children with ADHD. The main theme found when exploring the opinions of participants on testing children were thoughts concerning the right time for testing. With respect to stimulant treatment, the opinions voiced fell into the three main categories of comfort level, involving the child in the decision process, and reluctance to use medication unless as a last resort.

Many of the themes found in our study are consistent with those in the existing literature. In a qualitative study, Hansen and Hansen (2006) explored 10 parents' views and experiences of their children's stimulant treatment and found the dilemma regarding medication to be a dominant theme. Using a qualitative approach, Charach et al. (2014) explored attitudes toward ADHD and its treatment in 12 adolescents and their parents and found that parents were concerned with adverse effects of medication and saw stimulant treatment as a «last resort» option. Berger et al. (2008) discovered that many parents were suspicious of stimulants and feared negative consequences of the treatment. Most had prior negative information about methylphenidate and had sought out nonmedical advisors, but parents as well as children considered the medical explanation the most important factor influencing their opinion.

In an investigation of adolescents and their parents, Bussing et al. (2012b) reached similar conclusions insofar as a medical explanation was regarded as a desirable source of information. Parents and adolescents also had prior knowledge about ADHD from nonmedical sources and reported considerable misconceptions about the disorder and its treatment (Bussing et al. 2012b), a problem that has been found to be an important barrier to help seeking (Wilson et al. 2011).

Besides reaching comparable conclusions about the level of knowledge of parents and their information sources, the authors of another study found a more positive attitude toward medication in parents of children with diagnosed ADHD compared with controls, possibly because of past experience with treatment (Stroh et al. 2008). Bussing et al. (2012a) also found increased acceptability of medication in parents with prior treatment experience. Krain et al. (2005) found higher acceptability of nonpharmacological treatments in parents and that the acceptability of pharmacological treatments predicted later adherence.

Fear of adverse effects of the medication seems to be an important factor that has given rise to guidelines detailing the management of adverse effects in stimulant medication (Graham et al. 2011). Among other things, growth deficits, appetite loss, and an increased risk of substance use disorder have been discussed (Schachter et al. 2001; Wilens et al. 2003; Van der Oord et al. 2008).

Although not clearly stated, some participants implied being conscious of possible stigmatization, which is in line with research in children and adults (Law et al. 2007; Martin et al. 2007; Canu et al. 2008; Walker et al. 2008; Coleman et al. 2009; Lebowitz 2016). Fear of stigmatization, be it real or perceived (Bussing et al. 2011), may be a factor influencing acceptability of treatment.

The continuous reevaluation of treatment coupled with an underlying reluctance toward treatment with stimulants could also be said to be in line with research findings, insofar as this behavior may explain the frequently observed adherence problems (Krain et al. 2005; Adler and Nierenberg 2010).

Shared decision-making remains a difficult topic in the treatment of children. Although some guidelines recommend involving children in the decision-making process (National Institute for Health and Care Excellence 2008), the children's role often remains controversial (Coyne et al. 2014).

When interpreting the results of this investigation, it should be considered that the participants differed from those investigated in the aforementioned studies, in that they themselves were suffering from ADHD. All were in continuous treatment and reported benefits from stimulant medication. Furthermore, they all spontaneously reported having suffered from major impairments before diagnosis and treatment to such an extent that some even reported not wanting children to spare them what they had suffered.

Since all had been in treatment for some time, it can be assumed that they had some knowledge about the disorder and its treatment and had received appropriate medical information. It can also be assumed that many had been able to address any misconceptions about the disorder and its treatment due to misinformation. Moreover, they had presumably already weighed the possibility of known and unknown secondary and long-term effects against the possible benefits of stimulant treatment and decided to accept medication.

In light of these points, many participants displayed a surprising amount of reluctance toward stimulant treatment. It has been suggested that these reservations may reflect diffuse fears of possible side effects or stigma (Krain et al. 2005) that are not easily addressed with the usual information. Of those who did not, several spontaneously related what they said to their own negative experiences with the disorder when discussing the treatment of children. Their positive attitude toward medication corresponds to the finding that people with experience of stimulants—even if not personal—exhibit a greater acceptance of medication (Stroh et al. 2008; Bussing et al. 2012a).

The tendency to focus on academic impairments when deciding whether to test or treat children is also interesting, considering that most participants reported having suffered from other kinds of impairments. In addition, most of them had some kind of vocational training or even higher education (university, etc.), so it could be assumed that many had not suffered from major academic difficulties.

Limitations

The findings of this study are limited by the fact that many of the participants, not having children, discussed the research questions in theory only. It is possible that if faced with a real situation, some might show a different attitude. Even though special care was taken to interview the participants outside of their treatment setting, there is still the possibility of a response bias, especially when discussing treatment.

Conclusions

Patients with ADHD face many difficulties during their lives and appear to benefit from stimulant treatment—both facts being readily reported by the participants. Thus, the reasons to initiate and adhere to treatment can be viewed as crucial to successful therapy. The findings of this study argue for better psychoeducational interventions for parents with ADHD, in which the long-term consequences of the disorder and possible effects of the medication—primary, secondary, and long term—are explained. In addition, it may be beneficial to address other areas of impairment or symptoms besides academic functioning and discuss how difficulties in areas other than academic functioning may influence testing and treatment decisions. The wish for a shared decision-making process should be addressed as well as the child's knowledge about these topics.

At the same time, the right time for diagnosis and initiation of treatment should be addressed since this implies being able to recognize the extent of existing symptoms and impairments in the child in question. In this regard, the number of patients who do not receive a diagnosis until adulthood and who report high levels of impairment and suffering should also be considered. Further retrospective research on adults with ADHD may help to clarify how many of them stood out as children.

Clinical Significance

To the authors' knowledge, this is the first study investigating the opinions and attitudes of adult ADHD patients toward testing and stimulant treatment of children with ADHD. The results suggest that even parents with positive stimulant treatment experience may profit from special psychoeducational programs to further the acceptance of testing and treating their offspring with stimulants.

Footnotes

Disclosures

No competing financial interests exist.

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