Children’s Perspective on Living With ADHD
An important and relatively neglected area of research on ADHD concerns learning how children with the disorder experience their lives. Because an essential aim of ADHD treatment is to go beyond reducing symptoms to improving the quality of children’s lives at home, at school, and with friends, learning how children with ADHD experience their lives is quite important. What makes this especially true is that children’s self-perceptions may be quite different from the views held by their teachers and parents.
The limited research in this area has yielded mixed findings. When examining parent reports, children with ADHD have been found to have lower quality of life (QoL) than children with other mental health conditions and children with other chronic conditions such as asthma. However, when researchers have considered children’s own reports, some have found that children with ADHD report lower QoL than peers without ADHD, while others have found no differences.
It is also the case that a body of research has identified what some researchers refer to as a ‘positive illusory bias’ in youth with ADHD, whereby they provide unexpectedly positive reports of their own competence. And, some research has indicated that children with ADHD most overestimate their competence in the domain of their greatest deficit. In these studies, parents and/or teachers’ reports are regarded to reflect children’s actual competence, and reports from children that exceed these levels are presumed to reflect unrealistic child appraisals.
Prior studies have not carefully examined what the discrepancies in competence or QoL reports between children with ADHD and their parents actually mean, however, and this is an interesting question to pursue. This is one of the questions addressed in a recently published study titled ‘The Child’s Experience of ADHD that appeared in a recent issue of the Journal of Attention Disorders [Sciberras et al., (2010). The child’s experience of ADHD. Journal of Attention Disorders, published online in December, 2010].
Participants were 47 8 to 18-year-old youth diagnosed with ADHD and their parents. Forty-five were males and only 2 were females. All were recruited from outpatient clinics at the Royal Children’s Hospital in Melbourne, Australia. At the time of the study, nearly 90% were being treated with stimulant medication.
To learn about child and parent perceptions of children’s QoL, participants completed the Pediatric Quality of Life Inventory, a 23-item measure that assesses quality of life in six domains: physical, emotional, social, school, psychosocial, and overall functioning. This is a well-validated and established measure of child QoL. Parents also completed a behavior rating scale to indicate the severity of their child’s ADHD symptoms and behavior problems.
In addition, children completed the Harter Self-Perception Profile for Children. This measure assesses children’s feelings of their own competence in six domains: scholastic competence, social acceptance, physical appearance, behavioral conduct, and global self-worth.
Finally, children completed a measure titled ‘What am I like?’ that was designed to assess their perspective on their symptoms and behaviors. Sample items include” ‘I have lots of energy’, ‘I have ADHD’, ‘Taking medication helps me’, ‘I think I’m stupid’, ‘I can be anything I want to be when I grow up’. For each item, children rated whether they agreed or disagreed on a 4-point scale. As is evident from the examples, the items covered a variety of issues ranging from awareness of symptoms and difficulties, to feelings about taking medication, to optimism about the future.
– Results –
The most striking result from this study was that in every QoL domain except for ‘physical’ children reported significantly higher QoL ratings than their parents. These differences were not only statistically significant, but of generally large magnitude. Thus, it is clear that children with ADHD report feeling much better about their academic, social, and emotional lives than their parents believe is the case.
In seeking to understand the meaning of differences between parent and child QoL ratings, the researchers focused on the psychosocial domain, as this reflects the broadest QoL scale. On this scale, 77% of children reported higher QoL than their parents did. Interestingly, there was no difference in the severity of either ADHD or oppositional symptoms between children who reported higher vs. lower QoL in this domain than their parents. However, children reporting lower QoL than parents showed lower scores on the global self-worth scale on the Harter Self-Perception Profile for Children.
Results from the ‘What am I like?’ measure also yielded interesting findings. The majority of children, i.e., at least 70%, agreed with statements that indicated an awareness of hyperactive, inattentive, and impulsive behaviors. For example, 76% of children agreed that they found it hard to concentrate. Thus, most children willingly acknowledged their difficulties in these areas.
A significant percentage of children also acknowledged having concerns in related areas. Thus, 44% felt that problems in their family were their fault, 53% felt that they disrupted their class, 32% felt that they were ‘stupid’, and 46% reported that they ‘worry a lot’.
Despite these findings, it was also the case that many children agreed with statements that conveyed optimism about themselves and their future. Thus, 79% thought their ADHD ‘would get better’ and that they could ‘be anything I want to be when I grow up’. More than 60% thought they can ‘learn things quickly’, 66% thought they were ‘cool’, and 83% agreed that they ‘get along with other kids’.
Results specific to ADHD and its treatment were also interesting. The majority (70%) didn’t mind taking medicine, 85% agreed that medicine helped them, and only 20% reported worrying that ‘tablets might cause me harm’. Forty-four percent were ‘upset about having ADHD’ and only 23% agreed that ADHD is an ‘illness’.
– Summary and Implications –
Results from this study provide strong evidence that youth with ADHD tend to view their lives more positively than their parents do. Some researchers have suggested that this reflects a ‘positive illusory bias’ on the part of children with ADHD that serves an important self-protective function but which may undermine their motivation to address important difficulties in their lives. In other words, these more positive views may be problematic rather than ‘protective’.
On the other hand, these authors found that children with less positive QoL ratings than their parents had significantly lower self-worth, which suggests negative affects associated with viewing their lives less positively. Clearly, it is not possible to learn from this study alone what the likely implications are of youth with ADHD tending to report more positive QoL then their parents do, and the meaning of these discrepancies will certainly vary across individual parent/child pairs. As the authors note, additional research on this issue that follows children over time is required to better understand the possible significance of the discrepancy that they found.
Despite their more positive QoL ratings, it is not the case that youth with ADHD were unaware of their difficulties. The majority acknowledged difficulties pertaining to core ADHD symptoms and a substantial minority reported feeling worried, blaming themselves for family difficulties, feeling stupid, and feeling that they disrupted their class. This highlights the importance of assessing carefully for these types of issues, as concerns of this nature should certainly be addressed in a child’s treatment.
One finding that I found striking is that such a small percentage of youth – only 23% – regarded ADHD as an illness. The conception of ADHD as a disorder with important biological underpinnings is certainly the predominant view in the field, but this does not appear to be consistent with how many children view their condition. It would certainly be interesting to know what children believe ADHD to be, and I am not aware of research that has examined this basic issue.
There are a number of limitations to this study which the authors are careful to about acknowledge. First, the sample was almost entirely males, and the extent to which the findings would apply to girls is not clear. Second, the sample was relatively small, was clinic rather than community based, and was recruited from a single geographic location. The extent to which these findings would apply to a more representative sample of youth with ADHD is thus uncertain.
It also would have been interesting if the authors compared findings for youth according to their medication status to learn whether self-perceptions may be influenced by this treatment. The age range of participants, 8-18, is also quite broad and examining self-perceptions in more narrowly defined age groups to learn would allow one to test for developmental changes in self-perceptions.
Finally, and most importantly, there was no comparison group of youth without ADHD in this study. Thus, the extent to which perceptions of QoL differ in youth with and without ADHD cannot be determined.
While these limitations are all important, the findings from this work certainly suggest a number of interesting and important questions to be pursued in subsequent research. The study also provides a nice reminder of the value of attending to the life experiences of children with ADHD and how children themselves regard those experiences.
David Rabiner, Ph.D.
Dept. of Psychology & Neuroscience
Durham, NC 27708
(c) 2015 David Rabiner, Ph.D.
This article was originally published in Attention Research Update, an online newsletter written by Dr. David Rabiner of Duke University that helps parents, professionals, and educators keep up with new research on ADHD and related areas. Â You can sign up for a complementary subscription at www.helpforadd.com
Reprinted with permission.Â All rights reserved.
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