Introduction

Attention-deficit/hyperactivity disorder (ADHD) is characterized by a persistent pattern (6 months or more) of inattention and/or hyperactivity and impulsive behavior that is more frequent and severe than what is typically observed in others at a comparable developmental level (American Psychiatric Association, 2013). There are three types of ADHD in DSM V: the predominately inattentive type, the predominately hyperactivity/impulsive presentation, and the combined type. Out of nine possible symptoms for each, six symptoms have to be fulfilled to meet the criteria for that type of ADHD. If criteria are met for both, then the combined type is chosen.

In 2011, 6.4 million children in the United States ages 4–17 years old had a diagnosis of ADHD. The rate of diagnosis is 11% of youth, and it has increased in recent years from 7.8% in 2003, to 9.5% in 2007, and to 11.0% in 2011 [Centers for Disease Control and Prevention (CDC), 2015]. This represents an average annual increase of 5% per year since 2003.

The majority of youth (two-thirds) who are diagnosed with ADHD in childhood will continue to meet criteria into adolescence (Wolraich et al., 2005). About a third (36%) of childhood cases continue into adulthood, with 8.1% of adults meeting diagnostic criteria, according to the National Co-Morbidity Replication Study (Kessler et al., 2005a).

Adults with ADHD tend to have more problems in the work and social arenas. In a study following children with ADHD into young adulthood, a third (32%) had failed to complete high school, and far fewer were in college compared to the “normal” control group (Barkley, Fischer, Smallish, & Fletcher, 2004). In addition, young adults with hyperactivity had fewer friends and had more difficulty keeping friends. Sexual risk-taking, in terms of number of partners and unprotected sex, was also indicated. Moreover, adults with ADHD show impaired work performance, and this effect is particularly evident among blue-collar workers (Kessler et al., 2005b). People with ADHD have more car accidents, citations, and speeding tickets than people without ADHD, although they do not perceive themselves as poor drivers (Knouse, Bagwell, Barkley, & Murphy, 2005).

A recent, population-based, longitudinal study also found that the odds of having an alcohol or drug-dependent disorder increased in adulthood if a child had been diagnosed with ADHD (Levy et al., 2014). Finally, ADHD is a risk factor for self-harm (Allely, 2014) and suicidality, including ideation and attempts (Impey & Huen, 2011).

Along with quantitative research, that can tell us about prevalence and risks associated with ADHD, qualitative research is ideally poised to relay the personal experience, as well as the meaning people give their attempts to make sense of their suffering.

Despite the advantages of qualitative research, there are also limitations, namely the lack of generalizability beyond the small sample that is typically studied. To make up for this limitation and to contribute to knowledge building that qualitative research can so vitally contribute, meta-synthesis has recently developed. Meta-synthesis is designed to systematically review and integrate results of primary qualitative studies that have been conducted on a similar topic (Finfgeld, 2003; Sandelowski & Barruso, 2006; Paterson, Thorne, Canam, & Jillings, 2001). Meta-synthesis is a valuable way to build knowledge in a particular area of study. By drawing on all the relevant studies at once, it may offer new interpretations of findings. Thus, the knowledge of a given subject may become more substantive than if only individual studies were examined (Finfgeld, 2003). Because of its small scope, qualitative research is not as likely to be funded and can be marginalized. However, through the accumulation of such knowledge that can be found through meta-synthesis, qualitative research can contribute to service delivery and policy changes (Finfgeld, 2003).

Meta-synthesis developed in nursing (Paterson, Thorne, Canam, & Jillings, 2001; Noblit & Hare, 1988; Sandelowski & Barruso, 2006), and as a result, health-related topics were the initial focus of study. However, social work has more recently contributed to its perspective (Aguirre & Bolton, 2014; Saini & Shlonsky, 2012), and over the last couple of years meta-syntheses on mental health topics have emerged (e.g., Mollard, 2014).

A prior meta-synthesis focused on parenting decisions about treatment of their children with ADHD medication (Ahmed, McCaffery, & Aslani, 2013). Eleven published studies involving 335 parents of children were located, and four major themes emerged: confronting the diagnosis, external influences, apprehension regarding therapy, and experiences with the healthcare system.

Confronting the diagnosis involved coming to terms with the diagnosis itself, often after a period of denial and skepticism about the validity of the disorder, especially considering sensationalized media reports and the brief nature of the initial evaluation that led to a diagnosis. Parental disagreement about these matters was common at this point, and family and friends opinions—both for and against—weighed in. The school system had an influence on decision-making with parents feeling some pressure from teachers to put their child on medication due to the child’s poor academic and behavioral performance at school. Parents were worried about side effects of medication, the potential for addiction, the cost of medication, and whether there would be long-term consequences from medication use. For some parents, the noticeably positive impact of medication on children’s behavior outweighed these issues, but other parents discontinued their children’s medication because of them. Another influence on treatment decisions was the availability of support and information from the healthcare system, which parents often found sketchy. Many parents wanted to exhaust other treatment options first—usually behavioral management programs and natural remedies—before they decided to use medication.

The purpose of the current meta-synthesis was to conduct a comprehensive review of both the published and unpublished qualitative studies involving the experience of parents raising children diagnosed with ADHD. Part I involved the personal impact on parents in terms of the stress and emotional reactions expressed. Part I of the meta-synthesis focused on the first major theme, which was the emotional burden of taking care of children with ADHD (Corcoran, Schildt, Hochbrueckner, & Abell, 2016). Part II details the major theme of the processes parents have to work through in first, accepting the diagnosis, and second, deciding whether or not to use medication as treatment.

Methodology

Inclusion Criteria and Search

The inclusion criteria for studies was that they were qualitative studies on the experience of parents raising a child diagnosed with ADHD. The child had to be under 18. Studies were excluded if they involved medical or social service providers and did not report results separately for parents. Only studies in English were included, unless a translation was available. The search was pre-planned, and there were no initial date parameters put on the search that ended April 2015. A graduate level research assistant was trained on the search process by the principal investigator and a reference librarian, who constructed the search strings. The following databases relevant to the topic were searched: Academic Search Complete, AMED, Child Development and Adolescent Studies, CINAHL, Family Studies Abstracts, Social Work Abstracts, Social Sciences Abstracts, Social Services Abstracts, Health Source, Master FILE Premier, Psychology and Behavioral Sciences Collection, SocINDEX, Psychinfo, PubMed, and Dissertations and Theses Global. Search terms were as follows: (“personal reflection” OR “personal experience” OR “lived experience” OR phenomenology* OR qualitative) AND (mother* OR father* OR caregiver* OR parent* OR family*) AND (“attention deficit hyperactivity disorder” OR “attention deficit disorder” OR “ADHD”). The total number of “hits” on the search terms for all the databases was 1217.

Meade and Richardson (1997) developed a three-step process for study selection, which allows for narrowing the results of the search based first on title alone, then the abstract, and lastly the entire text if needed. After his review, the graduate level research assistant identified 348 studies that appeared to fit the criteria. One hundred and eighty-nine were found to be duplicates. After reviewing the abstracts, the principal investigator believed 159 to fit the criteria, and the full text of the studies was obtained. Two other graduate level research assistants, along with the principal investigator, screened the full text of the studies, and narrowed them to 80 (see Table 1). Please contact the first author for more details on the search.

Table 1 Themes by study
Full size table

Data Analysis

Data from the primary studies were extracted from the results section of the studies. The data was analyzed for themes within the broad framework of Aguirre and Bolton’s (2014) conceptualization that each study’s themes become woven as “part of a web of knowledge about the topic where a synergy among the studies creates a new, deeper and broader understanding” (p. 283). More specifically, the methodological framework provided by Noblit and Hare (1988), which they call “meta-ethnography,” was used for the synthesis, following an inductive method. Noblit and Hare (1988) suggest making lists and tables of the important phrases, metaphors, and other key findings from each study, and then making comparisons of the main ideas to determine overlap and commonality. Noblit and Hare (1988) discuss the importance of communicating the synthesis through tables listing themes and providing supporting quotes from the original studies.

Results

Of the eighty studies in the meta-analysis, the majority of parents who participated were married mothers, although fathers were at times the focus of studies (e.g., Singh, 2003), and single parents were featured in Hancock (2003). The majority of the participants in the studies were white, although a few studies were specifically focused on Latino parents (e.g., Oquendo, 2013), and Deries and colleagues published a number of reports on a study with African-American mothers. A wide range of socioeconomic status was found across studies. The vast majority of the children in the studies were male, and most were between 5 and 12 years old.

The majority of studies were conducted in the U.S., with other developed countries represented (U.K., Australia, Ireland, Norway)/Reports were presented in both published journal articles and unpublished dissertations. The primary methodology involved individual interviews, and the themes that are presented that emerged from the studies involves two processes with which parents struggled: figuring out their children’s behaviors and how the label of ADHD explained it; and deciding whether or not to use medication. Forty-nine studies in total contained these two themes.

Process of Acceptance of Diagnosis

The process of coming to terms with the diagnosis was often described as a series of stages (see Table 1). Parents struggled to understand their children’s behavior, ofte2003n seeing problems from a very early age (Hancock, 2003; Himmell, 2013; Roosa, 2003; Taylor, 1999), but eventually accepting a biomedical explanation of ADHD (Bull & Whelan, 2006; Perry, Hatton, & Kendall, 2005; Klasen & Goodman, 2000; Lewis-Morton, Dallos, McClelland, & Clempson, 2014). For some parents, a “genetic explanation for the ADHD diagnosis was seen as a way of explaining the child’s behavior, and the feelings of guilt and frustration were replaced with a sense of relief” (Moen, Hall-Lord, & Hedelin, 2011, p. 450). Relief was also named in Kendall (1998), as well as reduced self-blame (Wilcox, Washburn, & Patel, 2007). However, parents’ understanding of the biomedical reasons was often sketchy and superficial (Ahmed, Aslani, Boarst, & Yong, 2014; Harborne, Wolpert, & Clare, 2004; Roosa, 2003).

Many parents, as a result of accepting the diagnosis of ADHD, shifted their attributions of the reasons for their children’s behaviors from being ones they won’t control to ones they can’t control (Roosa, 2003; Villegas, 2007). As a parent put it in Arcia and Fernandez (1998), “But the moment comes when you have to say, ‘Stop.’ And he can’t stop. He can’t. I used to think that he didn’t want to. That is, could he be deaf? Could he have a problem that he doesn’t...? But, the point is that he can’t stop. He starts and it is tralalalala. Without being able to, he cannot control himself. That is what I now see” (p. 342).

Roosa (2003) summarized her participant responses as the parents changing their views of their children. Instead of child defiance or parenting deficits as the source of difficulties, it is the children’s neurological impairment. As a result, parents may modify their expectations to realize that children are not capable of as much. “Once they set up expectations that were realistic for the individual child, their child’s ability to achieve success was enhanced and the parents’ frustration at the child was diminished” (p. 183).

There was a cultural piece found in the Latinas comprising Qquendo’s (2013) sample as “bad parenting” was the attribution given to ADHD-type behaviors. As one mother revealed, “‘I was the type of parent that thought that ADHD was not a valid thing and I thought that it was bad parenting’” (p. 95). Therefore, mothers felt shame when the diagnosis was given, “…well like my parenting skills were not working or, you know I felt like a failure basically. Oh believe me they make you feel like you’re the worst person in the world’” (Oquendo, 2013, p. 95).

These attitudes were not limited to Latino samples. Funes de Hernandez (2005) spoke of mothers not wanting to get help because it would mean they had failed at their parenting role. As one mother said, “’I think the main thing is they don’t think you can control your children. They think you’re putting a label on something that isn’t really there and you really don’t know what you’re talking about’” (p. 85). The “invisible nature” of ADHD was seen as a barrier to people’s understanding (Wilder, Koro-Ljungberg, & Bussing, 2009). In Funes de Hernandez (2005), a mother said, “’Saying your child has ADHD is a stigma because people are saying it’s just a cop out to excuse his behavior. It’s hard to accept that your child sometimes can’t help what he’s doing. You can see a physical disability like a broken leg but it’s hard to accept a child with a disability in the brain’” (p. 85).

As Kendall (1998) explained in the results of their qualitative study, “Parents constantly were trying to differentiate between normal child behaviors and ADHD behaviors. Because there were no biological markers making diagnosis assured, and because ADHD is so varied in its presentation, making sense of the disorder was an ongoing activity. Parents yearned for more definitive information, and they struggled to understand what was ‘really going on with their children’” (p. 844). As another researcher described, “Parents continually spoke of trying to understand and make sense of their sons’ ADHD. …‘Maybe that’s his personality, maybe that’s ADHD, maybe ADHD is personality and vice versa, I genuinely don’t know’” (McIntyre & Hennessy, 2012, p. 71).

Some parents struggled with where the line was for “boy behavior” (Himmel, 2013), especially fathers (Singh, 2003) in whom this extended into an internal debate about whether their own boy behavior was symptomatic of ADHD.

I just thought he was—I had ants in my pants. I remember always being behind. It’s just the way it was with me. I did crazy things as a kid. If you had tested me, you’d probably find I had some form of ADD. So I said to [my wife], “Don’t worry. He’s fine.” I just figured [the boy] was the same as me. And I always pulled it out when I had to. I figured he’d do the same (p. 312).

A couple of other studies mentioned a parent as having ADHD as children (Kendall, 1998; Roosa, 2003). These parents “were more understanding and empathic, as well as better able to explain ADHD symptoms to their child and better able to help with homework and other school issues. For these parents, identifying their child’s ADHD allowed them to retell their own history, making sense of their own erratic academic paths and odd behavioral traits” (Roosa, 2003, p. 284).

Attitudes Toward Medication Use

The decision whether to medicate their children was a second theme to emerge from the meta-synthesis on parents’ experience of raising children with ADHD. Not surprisingly with the topic of ADHD, discussions about medication were common, and indeed, some studies centered on this aspect. There was a considerable amount of ambivalence toward medication (see Table 1). A common experience seemed to be initial reservations. One parent reported, “‘I know how difficult it is to decide about medication. I waited 6 months before I allowed my child to try the medication. I didn’t want to try the medication before exhausting other options’” (Clarke & Lang, 2012, p. 255). Another parent decided to use medication to help her child better manage school and social relationships:

…As she got older it was more apparent that I did really need to treat her symptoms to make her function in the classroom better, to feel better about herself, and more functional in our home and even outside our home, socially with peers or anyone, it had to happen (Brinkman et al., 2009, p. 584).

Other parents described medication as “a last resort.” One parent explained, “We wished that we had been able to somehow find a way to manage this without medication, but clearly, that’s not the case. We’ve done our best, given it our best shot, but our son is still suffering. We are gonna give it a trial of medication” (Brinkman et al., 2009, p. 584.)

Some parents reported relief after the child started medication (Singh, 2004). One parent explained, “‘I wouldn’t be without it because he is so difficult without it’” (Bull & Whelan, 2006, p. 669). Most participants found the benefits to medication, particularly the effect it had on school performance, but it was understood not to be a miracle by any means (Bull & Whelan, 2006; Chavarela, 2009; Funes de Hernandez, 2005; Hansen & Hansen, 2006; Ho, Chien, & Wang, 2011; Roosa, 2003; Moen, Hall-Lord, & Hedelin, 2011). Parents, however, were not keen on the side effects, causing them to discontinue medication use entirely in some cases (Bull & Whelan, 2006; Hansen & Hansen, 2006).

Discussion and Applications to Practice

This second part of the meta-synthesis had themes involving the processes of parents coming to terms with the diagnosis and the decision about medication as treatment. These were similar themes to Ahmed, Mccaffery, and Aslani (2013) whose express purpose of a meta-synthesis was to examine the decisions about medication and only involved studies that had this aim. Working more inductively from the qualitative data, we found similar results, highlighting their importance to parents’ experience. Further, our meta-synthesis was nested within a systematic review, unlike Ahmed’s meta-synthesis, which focused on published studies only, and we had about seven times the number of studies included. Therefore, with a greater number of studies available, these themes continued to hold up as important.

In our meta-synthesis, an emergent theme was the process parents took to come to terms with the diagnosis, which Ahmed, Mccaffery, and Aslani (2013) described as confronting the diagnosis. In our meta-synthesis, parents spoke of their struggle to identify a reason for their children’s misbehavior and to be able to manage it. Although some parents questioned the diagnosis of ADHD, others seemed relieved by being able to find a reason to explain their children’s problems as biological and the difficulty they had with parenting as a result. Having a label of ADHD for their children tended to reduce parents’ self-blame. Now they understood that some of their children’s behavior was not just willful and oppositional, but beyond their control. Parents often reduced the expectations for child behavior, as a result.

However, parents’ grasp of the theorized biological mechanisms for ADHD was sketchy and superficial. Additionally, parents continued to struggle with the meaning of the diagnosis, made more difficult by the fact that there are no definitive biological tests but only behaviors to define ADHD, and that many different presentations in children fall within the category of what is referred to as ADHD. Parents were also challenged by the line between ADHD (producing behaviors that were beyond the child’s control) and willful misbehavior, as well as the child’s personality and “normal active boy behavior.”

It seemed that one phenomenon that united parents’ varying reactions was the ineffectiveness they felt as parents. A practice implication for providers is to understand how beleaguered parents feel by the time their children are given the ADHD diagnosis. Parents experience a range of stressful emotional reactions (see Part I) in trying to discipline and manage their children’s behavior. Because these efforts so often result in failure, they will tend to see themselves as “bad parents” or ineffective. For some parents, the label of ADHD will reduce this self-blame. They will temper their expectations for their children, but others, particularly Latino participants, saw the label as an excuse that the public labeled as “bad parenting.” These meanings are important for providers to bring out and sensitively explore and provide information for any gaps in knowledge.

Another implication from this study is that practitioners can provide parents with appropriate education about the latest working models of ADHD (e.g., Barkley, 2014) so that parents can more fully understand the presumed biological basis for ADHD. At the same time, there should be acknowledgement of the controversies around the diagnosis of ADHD. Although it is hypothesized to be a neuropsychological disorder, substantive evidence is lacking, and the diagnosis is made on the basis of behaviors rather than biological markers (Johnson, Wiersema, & Kuntsi, 2009).

Our second theme, the process of making a decision to use medication was similar to Ahmed, Mccaffery, and Aslani (2013) results involving parental concerns about medication and the external influences they consulted—family, friends, the school system, and the health care system—to reach a decision. In our study, parents struggled with the decision about whether to medicate their children given side effects, the classification of the medication as a Schedule II drug, and the admission of defeat it appeared to bring. Despite popular notions that stimulant medication is over-used, parents in the meta-synthesis did not take lightly to the use of medication for their children. They were initially very cautious, wanting to explore other treatment options first. Some parents reached the point where they felt they had exhausted other options and were surprised at the benefits their children experienced. However, side effects caused some parents to discontinue their children’s medication.

Generally, social workers should take a critical and ethical stance toward the use of medication, particularly for children, given the field’s emphasis on humanism, strengths, and the person-environment framework (Corcoran & Walsh, 2016). One such program available to social workers and other non-medical mental health providers to foster this stance involves CriticalThinkRx (2009), a web based curriculum on psychotropic medication for non-medical mental health providers. In conversation with parents providers should have full exploration with parents around the potential benefits and risks associated with such treatment, taking into account parents’ preferences. In order to get general practitioners to engage in this process with parents, Brinkman et al. (2009) created a shared decision making intervention, which shows promise. Parents were provided with information about ADHD and various treatments available, as well as their pros and cons. Parents’ experience with behavioral treatment, and their goals, opinions, and values were also elicited in a structured way. In this way, parents selected treatments in a much more informed manner and were more cooperative as a result. Social workers may recommend the use of a similar model with parents so that decisions are made in a systematic way.

Conclusion

This meta-synthesis involved 80 studies on parents’ experience with raising a child diagnosed with ADHD. This article reports Part II of the findings. Rather than making a quick decision to either accept the ADHD diagnosis in their children or to medicate, parents came to these with a great deal of deliberation, careful observation of their children’s behavior, trying other options, weighing the input they received from others, and balancing their ability to cope. Social workers—in health, mental health, and school systems—can use these findings to validate parents for their experience and help them come to decisions in an ethical way that is consistent with social work and that can improve the environment for child adjustment.