For each of the nine guidelines in Galvan and Galvan’s Chapter 11, detail how the authors met the guideline. Provide a response with specific explications/examples/illustrations from the article, including page citations in APA format.
When you have completed the analysis, consider what the most important take-away is from the review of the literature you analyzed. Said another way, what have you learned that you will apply to your own literature review? Guideline 11.1
Guideline 11.2
Guideline 11.3
Guideline 11.4
Guideline 11.5
Guideline 11.6
Guideline 11.7
Guideline 11.8
Guideline 11.9
What we have learned to apply to our own literature review?
article copy
Perceptions of ADHD Among Diagnosed Children and Their Parents: A Systematic Review Using the Common‐Sense Model of Illness Representations
Iana Y. T. Wong1 · David J. Hawes1 · Simon Clarke2,3,4 · Michael R. Kohn2,3,4 · Ilan Dar‐Nimrod1
Published online: 27 October 2017
© Springer Science+Business Media, LLC 2017
Abstract Research on children and parents’ experiences of ADHD has grown in recent years, attracting attention to their subjective perception of ADHD as a disorder. Theoreti- cal accounts of illness perception suggest that it is multi- dimensional, consisting of at least fve core constructs (see the common-sense model of illness representations or CSM: Leventhal et al., in: Rachman (ed) Medical psychology, Per- gamon, New York, vol 2, pp 7–30, 1980, in: Baum, Taylor, Singer (eds) Handbook of psychology and health: social psychological aspects of health, Earlbaum, Hillsdale, vol 4, pp 219–252, 1984). We suggest that the application of CSM in children/adolescents with ADHD and their parents may play an important role in understanding their coping behavior, treatment adherence, and emotional well-being. A systematic search identifed 101 eligible studies that investi- gated the perception of ADHD among diagnosed children/ adolescents and their parents. In general, these studies sup- port the existence of the multiple facets of illness represen- tations proposed by the CSM in both diagnosed youngsters and parents indicating substantial variability among both
Electronic supplementary material The online version of this article (doi:10.1007/s10567-017-0245-2) contains supplementary material, which is available to authorized users.
• Iana Y. T. Wong ywon8532@uni.sydney.edu.au
1 School of Psychology, University of Sydney, Sydney, NSW 2006, Australia
2 Brain Dynamics Centre, The Westmead Institute for Medical Research, The University of Sydney, Westmead, Australia
3 Adolescent and Young Adult Medicine, Westmead Hospital, Sydney, Australia
4 Centre for Research into Adolescents’ Health (CRASH), Sydney, Australia
parents and youngsters on each of these facets. The compre- hensive assessment of the representations of ADHD indi- cates imbalance attention to the diferent representations of ADHD in the literature; disproportional research attention has been paid to the perceived efectiveness of treatment (i.e., treatment control dimension) compared to other ill- ness representations (e.g., timeline, consequence, and coher- ence), despite research showing their relevance to treatment adherence among other implications. The review identifes the limitation of existing relevant research, needed foci for future studies, specifc testable hypotheses, and potential clinical implications of the multifaceted representations of ADHD among youngsters and carers alike.
Keywords Attention-defcit/hyperactivity disorder · Illness perception · Children · Adolescents · Common- sense model · Parents
Introduction
Attention-defcit/hyperactivity disorder (ADHD) is a neu- rodevelopmental disorder, characterized by a persistent pattern of inattention and/or hyperactivity/impulsivity that interferes with functioning or development (American Psy- chiatric Association 2013). It is the most common childhood behavioral disorder, afecting 3–7% of school-aged children (American Psychiatric Association; Pineda et al. 1999). As a condition with diverse manifestations, it has profound efects on the lives of children and families in academic, family, and social aspects. Although research on children and parents’ experience of ADHD has grown in recent years, relatively little is known about their subjective perceptions of ADHD as a disorder and the role of such perceptions in conferring risk versus amelioration. According to the common-sense
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model of illness representations (CSM: also known as the self-regulation model), individuals actively form common- sense beliefs about their illnesses and symptoms in order to understand and cope with health-related threat (Leventhal et al. 1980, 1984).
Leventhal’s CSM proposes that when one encounters a health threat (e.g., symptoms and diagnosis), an individual develops two parallel, yet interrelated, cognitive, and emo- tional representations of the stimulus (Leventhal et al. 1980, 1984). These representations guide the formation and selec- tion of coping strategies, including emotion- (e.g., avoid- ance) and problem-focused coping (e.g., using prescribed medication), and the appraisal of the coping outcomes is then used to modify the representations and further coping eforts. The CSM identifes at least fve core dimensions of the cognitive representations of the illness. These dimen- sions are: (1) identity, or how the illness and its symptoms are identifed and labeled; (2) cause, or the perceived rea- sons why an illness develops; (3) timeline, or the ideas about how long it will last; (4) consequences, or the emotional or functional efects on life; and (5) control/cure, or the extent to which a patient believes how controllable an illness is by the treatment and by themselves. Recent studies have added two additional dimensions: (6) emotional representations, which comprise emotional responses toward the illness, and (7) coherence, or how much individuals believe they under- stand their illness (Moss-Morris et al. 2002). The CSM has been widely applied to individuals with physical illnesses and has enhanced understanding of illness-self-management in a range of clinical populations (see Hagger and Orbell 2003, for a meta-analytic review).
Although the CSM was originally developed to capture patients’ perception of physical illnesses, there has been an increased interest in applying this model with regard to the role of illness representations in individuals with mental health problems (e.g., Lobban et al. 2004; Petrie et al. 2008). Initial work has suggested that individuals with mental ill- nesses, such as schizophrenia (Lobban et al. 2004), depres- sion (Fortune et al. 2004), and anorexia nervosa (Holliday et al. 2005), are similar to those with physical conditions in that they also form a range of distinct cognitive repre- sentations of their conditions. Moreover, research in indi- viduals with mental illnesses has demonstrated relationships between their illness beliefs and the health-related outcomes. For instance, Watson et al. (2006) found that a perception of more severe consequences of the having psychosis was related to increased depressive symptoms; a perception of having more symptoms of psychosis was related to greater level of anxiety; and a perception of longer timeline of and less personal control over the condition were related to lower self-esteem in these patients. Moreover, examining illness perceptions in relation to uptake of cognitive-behav- ioral therapy among patients with psychosis, Freeman et al.
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(2013) found that a shorter perceived course of the illness was associated with a reduced perceived control that led to an increase in drop-out rates from treatment; in contrast, a stronger belief in psychological causes was related to better attendance.
The CSM has proven to be highly useful in relation to adult illnesses (Hagger and Orbell 2003), and there is emerging evidence supporting its applicability for children. Healthy preschool children are able to identify the fve origi- nal CSM’s dimensions of common physical illness (Gold- man et al. 1991). These dimensions seem even more use- ful for diagnosed children; children who had experienced asthma had more sophisticated conceptualizations of this illness along the dimensions of the cause, timeline, and control/cure than those without experience with this illness (Paterson et al. 1999). Moreover, a study with children aged 5–11 years found a developmental trend in the children’s perception of mental illness (e.g., depression and schizo- phrenia), that is, an increase in age was associated with their understanding of the dimension of causes, consequences, curability, and timeline of mental illness (Fox et al. 2008). These fndings suggest that children’s beliefs about illnesses also map onto those captured by CSM.
Patients’ illness representations are not the only perti- nent beliefs to be associated with health outcomes. The beliefs of caregivers also appear to play an important role in health-related outcomes among themselves and patients. A study that evaluated carer–patient dyads found that car- egivers tended to have more pessimistic illness perceptions of psychosis than the diagnosed patients, and their discrep- ant views on illness consequences were related to greater anxiety, depression, and lower self-esteem in the patients, while discrepant views on controllability were associated with greater stress, depression, and lower self-esteem in the caregivers (Kuipers et al. 2007). Likewise, a study that con- ducted with patients with schizophrenia and their relatives found that when the relatives had divergent illness percep- tions with the patients, they were more likely to have high expressed emotion (i.e., being critical, hostile to, and emo- tionally over-involved in patients) and to maximize negative outcomes in patients (Lobban et al. 2006).
In the context of ADHD, considerable findings in diagnosed children and adolescents and their parents have already highlighted the importance of their cogni- tions in relation to the treatment-related outcomes and psychological well-being. A systematic review on the adherence of medication among patients with ADHD, including children and adolescents, found that the most common cause for discontinuation of medication was the perception of adverse effects; other common reasons included their perceptions of inadequate effectiveness and social stigma associated with medication (Gajria et al. 2014). This suggests the importance of a perception of the
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treatment control (i.e., perceived effectiveness of medi- cation) among children and adolescents with ADHD, as this construct seems to affect their treatment adherence. Moreover, a review of the self-perception of children with ADHD demonstrates that diagnosed children exhibit an inflated perceptions of self-competence in comparison to adults’ perception (Owens et al. 2007), and this positive illusory perception seems to provide a short-term buffer against depression (Vaughn 2007); yet, it may also pre- vent them from recognizing and remediating their func- tional deficits (Owens and Hoza 2003). Furthermore, the parental attributions (e.g., locus of control, stability) of their child’s ADHD symptoms have received research attention in previous studies (e.g., Gerdes and Hoza 2006; Huang et al. 2014; Johnston et al. 2010; Johnston and Patenaude 1994). These parents’ perceptions of control- lability and stability of child’s behavior are relevant to the cure/control and timeline dimensions; however, we propose that parents’ complete representations of ADHD as a disorder instead of the child’s specific behavior may provide a broader and more comprehensive perspective in understanding the outcomes related to the disorder.
Whereas different dimensions of perception of ADHD have already been investigated by previous studies, to our knowledge there have been no studies that assessed all seven dimensions simultaneously in diagnosed young- sters or their parents, let alone the overlap between their perceptions. Given that ADHD is a highly heterogene- ous and chronic condition, and that there is mounting evidence to indicate that illness perceptions play a key role in shaping health outcomes, we believe an applica- tion of the illness representation framework among youth with the disorder and their parents can enhance treatment- related outcomes as well as inform future psychoeduca- tion efforts. Thus, our aim was to conduct a systematic search and review of the evidence available concerning the perceptions of ADHD among youth with the disorder and their parents, and to summarize the evidence show- ing the relationships between their illness representations and coping behavior, treatment adherence, and emotional well-being. Moreover, we examined the overlap between children and parents’ perceptions of ADHD when avail- able and highlighted the potential implications of any dis- cordance. Through the review of the relevant research in this manuscript, it became clear that CSM may provide a valuable framework for eliciting and conceptualizing the subjective perceptions of children with ADHD, in line with recommendations regarding the need for such children to have a voice in clinical processes (Arora and Mackay 2004; American Academy of Pediatrics 2001).
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Methods
Data Sources
A comprehensive literature search, using PsycINFO, Med- line, and ERIC, was conducted in May 2017. Search terms used in the title and abstract felds included: “view*”or “perce*” or “knowledge” or “belie*” or “attribut*” or “understand*,” or “expect*,” or “interpret*,” or “conce*,” in all possible combinations with “parent*” or “child*” or “adolescent*” as a second search term and “attention defcit disorder,” or “Hyperkinesis,” or “hyperkinetic disorder,” or “ADHD,” as the third search term. In addition, the reference lists of all included articles were hand searched.
Studies’ Selection
Any studies that looked at the perception of ADHD among diagnosed children and adolescents and/or their parents were considered for inclusion. This meant the studies needed to examine at least one dimension of the illness representations. To be included in the review, the articles had to be written in English, published in peer-reviewed journals and be primary studies. Moreover, the children/adolescent participants in the studies needed to be under the age of 18 and they needed to have an ADHD diagnosis, since this is a prerequisite to measure their perceptions of this disorder. Studies that did not specify the participants were cognizant of the diagnosis (e.g., studies that examined the children/adolescents’ ADHD symptoms using parents and/or teachers’ reports without specifying whether the youngsters had received an ADHD diagnosis) were excluded. Moreover, studies that contained a sample with less than 50% children/adolescents with ADHD (or parents with diagnosed youngsters) were also excluded.
The frst author conducted the initial search, screening of titles, and identifcation of relevant abstracts. This reviewer then read the full-text of articles identifed through the screening process to detect studies for inclusion. The initial search produced 15,986 results. Titles and relevant abstracts were screened, and those not pertinent were excluded. After reading the full-texts of 459 studies, 362 were excluded. The search of reference lists of these articles identifed 16 additional potentially relevant studies, and four of them were included in the review, resulting in a total of 101 studies presented in this review.
For the purpose of a reliability check, three trained research assistants screened a combination made out of 10% (n = 46) of the (randomly selected) titles and abstracts of the identifed studies and 2.0% (n = 303) of the (ran- domly selected) titles and abstracts of the unselected studies (a combined sample of n = 349). In addition, two trained research assistants also read 20% (n = 92) of the (ran- domly selected) full-texts of articles identifed through the
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screening of titles and abstracts. Any discrepancies found during this process were resolved through discussion. There was a substantial agreement for the screening of titles and abstracts (kappa = 0.80) as well as the screening of full- texts (kappa = 0.68) using the criteria above. Discrepancies between the raters were settled through a consensus reached through a discussion; this consensus converged on the frst author’s assessment in all cases but one. Only one study (in the screening of full-texts) resulted in a consensus in line with the research assistant’s assessment rather than the frst author.
Of the 101 studies included in this review, 21 investi- gated children and adolescents’ perspectives, 61 examined parents’ perspectives, and 19 of them involved both. More- over, 46 are qualitative studies, 40 are cross-sectional, nine are of longitudinal cohort designs, three are clinical tri- als, and three studies used a mixed of methods. Figure 1
Fig. 1 Flow diagram demon- strating the study selection pro- cess for the systematic review
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indicates the number of articles determined at each point of the procedure and the reasons for exclusion. Details of each included study are found in the supplementary online materials.
Data Extraction
The following data were extracted for each study: country of the study, number of children/adolescents and/or parent participants, gender and age range of children/adolescent participants, presence of ADHD diagnosis, the measure and fndings related to any dimension of illness representa- tions, and the measure and fndings related to any poten- tial outcome of illness representations. The data extrac- tion procedure was adapted from the Cochrane Public Health Group Data Extraction and Assessment Template (Cochrane Public Health Group).
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Quality Assessment
The quality of qualitative studies represented in the review was assessed using 10 items from the checklist of the Criti- cal Appraisal Skills Programme (CASP; Milton Keynes Primary Care Trust). Sample items include “Was there a clear statement of the aims?” and “Was the data analysis sufciently rigorous?” and the appraisal could be indicated by “yes,” “no,” or “can’t tell.” For cross-sectional studies and longitudinal cohort studies, the quality assessment was conducted using the eight and 11 questions in the Joanna Briggs Institute Critical Appraisal Checklists for analyti- cal cross-sectional studies and cohort studies, respectively, (The Joanna Briggs Institute 2016). Sample items for the former checklist include “Were the study subjects and the setting described in detail?” and “Were confounding factors identifed?” and latter include “Was the follow-up time reported and sufcient to be long enough for out- comes to occur?” and “Was follow-up complete, and if not, were the reasons for loss to follow-up described and explored?”. For clinical trials studies, nine items in the Joanna Briggs Institute Critical Appraisal Checklists for quasi-experimental studies were used to assess the quality of the research. Sample item include “Was there a control group” and “Were there multiple measurements of the out- come both pre and post the intervention/exposure?”. The choices of answers in these three checklists were “yes,” “no,” “unclear,” or “not applicable.” Studies that were of low quality were not excluded from the review, but they were given less weight in the review and its limitations were stated in the interpretations of the fndings. The qual- ity evaluation of each of the primary studies used in this review is provided in Supplementary Table 1.
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Table 1 Qualitative and quantitative studies investigating the identity dimension in diagnosed children/adolescents and their parents
Results
Identity
The identity dimension of CSM concerns what an individual thinks is their problem and the signs/symptoms that the indi- vidual experiences (Leventhal et al. 1980, 1984). Twenty- fve studies examined these perceptions among children/ adolescents with ADHD and their parents (see Table 1). Of these studies, only fve of them have investigated the impli- cations of perceived symptoms.
Children/Adolescents (n = 8 studies)
Despite some inconsistencies in the literature, it seems that most children and adolescents with ADHD are at least somewhat cognizant of the core symptoms of the disorder. Emilsson et al. (2017) found that adolescents with ADHD reported a limited number of ADHD symptoms when asked about their perception. Using structured interviews, Kaidar et al. (2003) found no signifcant diferences between chil- dren with and without ADHD in self-reported ADHD symp- toms among 32 children; however, with a larger sample of 152 children, Wiener et al. (2012) found that children with ADHD self-reported signifcantly more ADHD symp- toms than children without ADHD. Likewise, a study that involved 268 children with ADHD found that they reported more inattentive and hyperactive symptoms than peers without ADHD (Gau et al. 2010). Similar results were also found by Klimkeit et al. (2006), in which the children with ADHD reported experiencing more disorganized, disruptive, and impulsive behaviors compared with their peers without ADHD. Furthermore, interviews indicated that the majority of children and youth with ADHD described their problems
Participants
Children/adolescents Parents
Both
Qualitative studies
Brinkman et al. (2012) Kendall et al. (2003)
Bull and Whelan (2006) Ho et al. (2011)
Jackson and Peters (2008) Perry et al. (2005)
Singh (2003) Wilcox et al. (2007)
Stewart et al. (1973)
Quantitative studies
Emilsson et al. (2017) Gau et al. (2010) Kaidar et al. (2003) Klimkeit et al. (2006)
Bennett et al. (1996)
Bussing et al. (2011) Graziano et al. (2011) Harrison and Sofronof (2002) Huang et al. (2014)
Jiang et al. (2014)
Mash and Johnston (1983) Park et al. (2013)
Sollie and Larsson (2016) Xiang et al. (2009)
Wiener et al. (2012) Volpe et al. (1999) Hogue et al. (2014)
Mixed methods
Mukherjee et al. (2016) –
–
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in behavioral terms, acknowledging their greater propen- sity to be hyperactive, unable to concentrate, and easily distracted (however, some of the participants rejected their diagnosis altogether or were not aware of their symptoms) (Brinkman et al. 2012; Kendall et al. 2003; Mukherjee et al. 2016).
Parents (n = 14 Studies)
Some qualitative research found that parents’ description of their children’s difculties is out of step with the DSM- V’s criteria (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition: American Psychiatric Associa- tion 2013). Parents described their children’s ADHD by alluding to the “unmanageable or problematic behaviors” (Ho et al. 2011, p. 46), and “not well-behaved or following instructions” (Singh 2003, p. 311). Moreover, two studies found that some parents were skeptical about their children ADHD diagnosis (Jackson and Peters 2008; Wilcox et al. 2007). However, substantially more research with parents of children with ADHD found that parents’ perceptions of their child’s problems are in line with the DSM-V (Ameri- can Psychiatric Association). Parents reported their child’s problems were difculties with attention and concentration, hyperactivity, impulsivity, and distractibility in qualitative interviews (Bull and Whelan 2006; Perry et al. 2005). Tak- ing a quantitative approach, Bennett et al. (1996) found that most of the parents of children with ADHD (82%) identi- fed their children’s attention and hyperactivity problems (for similar fndings see Jiang et al. 2014). Wiener et al. (2012) found that such parents perceived more ADHD symptoms in their ofspring compared with parents of typically devel- oping children (similar fndings were reported by (similar fndings were reported by Huang et al. 2014; Xiang et al. 2009). Emphasizing clinical aspects, another survey with 100 mothers of children with ADHD found that the mean score of parents’ rating on the Child Behavior Checklist (CBCL; Achenbach 1991) fell in the clinical range (Harrison and Sofronof 2002, similar results were found by Graziano et al. 2011; Sollie and Larsson 2016).
Summary
The accumulated research seems to suggest that the majority of diagnosed children/adolescents and their parents identify the symptoms of ADHD. That said, some youngsters and parents seem to rebuf the diagnosis.
Although both youngsters and parents seem to identify the symptoms, studies that compared their perceptions of symptoms found limited agreement between them. An ear- lier study found high agreement between diagnosed adoles- cents and their parents on their perceptions of core symp- toms of ADHD (Stewart et al. 1973). However, later research
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by and large demonstrated mostly discrepancies. Volpe et al. (1999) found that the majority of children in their sample (83.1%) did not self-report clinically signifcant levels of ADHD symptomatology, whereas most of their parents (and teachers) did. More recent research converges on demon- strating that children underestimated the number and extent of ADHD symptoms in a structured interview as compared to parents’ and/or teachers’ ratings of their symptoms (Bus- sing et al. 2011; Hogue et al. 2014; Wiener et al. 2012).
Implications
Children/Adolescents
Unfortunately, we could not identify any study that directly examined the potential implications of perceptions of ADHD symptoms among diagnosed children/adolescents. However, we located one related study that might be helpful to illu- minate the potential outcome. Volpe et al. (1999) compared the children who identifed themselves as having ADHD with those who were only identifed by adults as having ADHD. They found that children who identifed themselves as having ADHD reported signifcantly more internalizing symptoms such as anxiety and worry than did the children who were identifed as having ADHD by adults only. These fndings suggest that youngsters’ identifcation of ADHD symptoms may take a toll on their emotional well-being. However, another plausible explanation is that youngsters who experience internalizing symptoms are more likely to recognize their ADHD symptoms. The impact of recogni- tion of ADHD symptoms on their psychological well-being deserves further clinical and research attention.
Even though a number of studies suggest diagnosed chil- dren/adolescents tend to underestimate their ADHD symp- toms (Bussing et al. 2011; Hogue et al. 2014; Wiener et al. 2012), we could not locate studies that examined the poten- tial consequences of such underestimation. One potential source for such underestimation is a positive illusory bias (PIB) and its related construct of optimism. PIB is a dispar- ity between self-report of competence and actual compe- tence (Hoza et al. 2002; however, see Laird and De Los Reyes 2013 for a critique on the use of diference scores to measure informants’ discrepancies). Although such beliefs appear to be somewhat normative in moderation, the PIB found in children with ADHD seems to difer from the overly positive cognitions found in the general populations (Owens et al. 2007; however, see Jiang and Johnston 2017 for a fnding of no PIB in children with ADHD). Thus, a testable hypothesis worth exploring is whether children with ADHD who exhibit this bias may deny their problems to reduce distress, and may overrate their abilities to protect their self-image compared to those who have a more realistic perception (Ohan and Johnston 2002).
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We suggest that the underestimation of ADHD symp- toms of diagnosed children/adolescents may be beneficial to their emotional well-being on one hand, but it may be detrimental to the improvement of behavioral problems on the other hand. Mikami et al. (2010) have illustrated the protective function of PIB finding that children diag- nosed with ADHD who had more positive views about their competence compared to adults’ ratings had larger reductions in self-reported depressive symptoms after receiving a behavioral treatment. Similarly, research on a related construct, optimism, has found that posi- tive expectations are associated with better psychologi- cal well-being (Cederblad et al. 1995; Giltay et al. 2006) and quality of life (Bain et al. 2003; Wrosch and Scheier 2003) among people with mental and/or behavioral dis- orders and the general population, respectively. However, it has been frequently found that individuals in a positive mood would underestimate the likelihood or frequency of negative events and overestimate their chances of attain- ing good outcomes (Johnson and Tversky 1983; Salovey and Birnbaum 1989; Schwarz and Bohner 1996; Wegener et al. 1994). Further probing the detrimental impact of the overly positive views held by children/adolescents with ADHD, Hoza et al. (2004) have noted that there may be negative long-term consequences associated with the inability to recognize one’s deficits, as the ability to rec- ognize deficits is often a motivating factor in treatment. Empirical support for such a suggestion was demonstrated by Mikami et al. (2010) who found that diagnosed chil- dren with a more positive perception of their competence responded more poorly to behavioral treatment for ADHD than those with a less positive self-perception. In a similar fashion, an earlier study found that diagnosed children with a more positive view of their personality showed less improvement in socially relevant treatment outcomes than those with dimmer views (Hoza and Pelham 1995). Con- sequently, children and adolescents who underestimate their ADHD symptoms may experience better emotional well-being than those who perceive their symptoms more realistically, but may be more lax in their approach to treatment as a result.
Finally, we could not locate any studies directly inves- tigating the outcomes of denial of having ADHD among diagnosed children/adolescents. Research in people with mental illnesses suggests that individuals who identified themselves as having a mental illness were more likely to be compliant with medication (Bartkó et al. 1988; Nageotte et al. 1997) and had better treatment outcomes (McEvoy et al. 1989, 1984). Therefore, we speculate that accepting the ADHD diagnosis would be associated with better outcomes due to increased treatment compliance.
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Parents
Among parents who accept their ofspring’s ADHD diagno- sis, Bussing et al. (2011) found that parental ratings of their children’s inattention, but not of hyperactivity/impulsivity, were associated with the use of mental health services for their child in the past year. Moreover, Park et al. (2013) found that parents who perceived their children’s inattentive symptoms as severe in baseline were more likely to perceive subjective improvement after treatment (although objective improvement did not occur), and parents who perceived their children’s inattentive symptoms as mild in baseline were more likely to deny subjective improvement (although objec- tive improvement did occur). These fndings suggest that parental perception of their child’s ADHD symptoms is not only associated with their treatment pursuit for their child, but also their perception of the child’s improvement.
Beyond treatment-related outcomes, Graziano et al. (2011) found that parents’ perception of the severity of their children’s hyperactivity/impulsivity symptoms, but not inattention, was related to parenting stress. However, Mash and Johnston (1983) found that parents’ perception of the distractibility of their diagnosed children was associ- ated with higher level of parenting stress. Moreover, Xiang et al. (2009) found that parents’ perception of the severity of hyperactivity and inattention symptoms in the children was correlated with the parents’ quality of life. In other words, parents’ perception of diferent symptoms seems to infuence their emotional well-being diferently.
Lastly, we could not identify studies investigating the impact of parents’ denial of their ofspring’s ADHD. The difficulty to obtain such information is understandable because parents who do not identify their ofspring as having ADHD are not likely to participate in related studies. Having said that, we argue that the assessment of the identity dimen- sion may be even more important in the case of ADHD because of its controversial diagnosis, as there have been ongoing debates about the over diagnosis of ADHD (e.g., Angold et al. 2000; Bartkó et al. 1988; Bogus 1997; Conrad and Bergey 2014; LeFever and Arcona 2003; Timimi et al. 2004), which were also featured prominently in the public eye (Brazelton and Sparrow 2003; Haber 2000). As a result, parents are likely to form their own unique interpretation of their ofspring’s difculties and a special efort should be directed toward exploring the implications of diagnosis rejection of parents.
Summary
The outcomes of the perception of ADHD symptoms in diagnosed children and youngsters remain largely unknown. However, based on relevant findings, we postulate that their underestimation of symptoms may be a double-edged
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sword, such that those who underestimate their symptoms may experience better emotional well-being; yet, they may employ a less active coping style and have poorer treatment compliance than those who share similar perceptions with their parents. That said, these speculations await investiga- tions of future research.
In parents, the fndings suggest their perception of their ofspring’s ADHD symptoms seems to have important links with their pursuit of treatments for their children and own emotional well-being. Moreover, we suggest the implica- tions of denial of the existence of ADHD among diagnosed children/adolescents and their parents necessitate greater attention given the controversial nature of this disorder.
Finally, we could only locate one study that examined the implication of perception of ADHD symptoms in both diagnosed children/adolescents and their parents. Hogue and colleagues (2014) found the perceptions of inattention/disor- ganization (I/D) symptoms, but not hyperactivity/impulsiv- ity (H/I) symptoms, predicted the perceived need for ADHD treatment on the part of both teens and caregivers. Moreover, the study found that caregivers and teens were uniform in reporting higher levels of I/D symptoms compared to H/I symptoms, which was consistent with research showing that I/D is far more prevalent than H/I among youth (e.g., Sibley et al. 2012; Todd et al. 2008). The fndings of this study illustrate that the perception of diferent symptoms of ADHD may have a diferent infuence on coping strategies. However, this study did not examine the impact of potential discrepant views of symptoms. We speculate that divergent views of symptoms between parent and children/adolescents may undermine the quality of life of both as such discrepant views may introduce increased parent–child conficts. Dis- crepant views may also impair the adherence to treatments
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because of difering views on the need for treatments. None- theless, these predictions require future research.
Cause
In CSM, the cause dimension refers to the individuals’ beliefs regarding the factors that are responsible for causing the illness (Leventhal et al. 1980, 1984). This dimension has been examined with regard to ADHD in 26 studies to date (see Table 2).
Research to date has found no single cause for ADHD and the risk factors that have been identifed so far appear to be somewhat non-specific (e.g., Thapar et al. 2012). ADHD appears to be highly heritable (e.g., Biederman 2005; Lichtenstein et al. 2010; Sprich et al. 2000; Thapar et al. 1999), and the behavioral characteristics of ADHD are believed to arise from complex interactions and transactions between environmental and neurobiological factors (e.g., Thapar et al. 2013; Hinshaw and Ellison 2015).
Children/Adolescents (n = 7 Studies)
Qualitative research on youngsters’ perceived causes of ADHD shows mixed results. In-depth interviews with diag- nosed children and adolescents found that some participants believed in biological causes of the disorder such as factors of genes and brain abnormality, whereas some ascribed to environmental causes such as TV watching or experience of tragedies. Some participants did not consider their ADHD as an illness/disorder altogether, but a normal part of their identity or a diferent way of process thoughts (Kendall et al. 2003; Mukherjee et al. 2016). Likewise, two other inter- views also found that while some youngsters viewed ADHD
Table 2 Qualitative and quantitative studies investigating the cause dimension in diagnosed children/adolescents and their parents
Participants
Children/adolescents Parents
Qualitative studies
Honkasilta et al. (2016) Kendall et al. (2003) Krueger and Kendall (2001) McMenamya et al. (2005)
Brinkman et al. (2009) Davis et al. (2012) Dennis et al. (2008) Ghosh et al. (2016) Harborne et al. (2004) Hughes (2007)
Kildea et al. (2011) Lin and Chung (2002) Lin et al. (2009) Moen et al. (2011) Perry et al. (2005) Singh (2003)
Wilcox et al. (2007) Yeh et al. (2014)
Charach et al. (2014)
Quantitative studies
–
Chen et al. (2008)
Johnston and Freeman (1997) Ghanizadeh (2007)
Johnston et al. (2005)
Bowen et al. (1991)
Mixed methods
Mukherjee et al. (2016) dosReis et al. (2009)
Both
–
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as a physical condition or disorder, others saw ADHD as their personality characteristics (Charach et al. 2014; Krue- ger and Kendall 2001). Only one qualitative study found that the majority of youth clearly saw the disorder as a biological condition (Honkasilta et al. 2016).
Cross-sectional studies also indicate that diagnosed chil- dren and adolescents have diverse beliefs about the causes of ADHD, although the majority seems to endorse biological causes more than others. Among diagnosed children (mean age = 11.9) who were taking stimulant medication for their ADHD, Bowen et al. (1991) found that most (72.7%) attrib- uted their ADHD to physiological causes, while less than half (40%) attributed it to difculties of schoolwork, about a quarter attributed to the infuence of other children and teach- ers, and an even smaller portion (22.8%) blamed themselves.
Age diferences in the etiological beliefs held by diag- nosed children have been directly investigated in one study. Using open-ended interview, younger children (7–8 years old) were found to endorse either psychology or biol- ogy as the sole cause of ADHD, whereas older children (11–12 years old) provided mostly biological explanations (McMenamya et al. 2005). The authors in this study sug- gested that the integration of biological principles into the explanation of ADHD might refect a shift from belief in psychological causes to biological causes. However, the result of this research has to be interpreted in light of its small sample size (16 participants in each of the two age groups). Despite that, this fnding resonates with the results of a more recent qualitative study with 60 diagnosed chil- dren, which found that older children reporting more attribu- tions to biological causes of ADHD than younger children (Mukherjee et al. 2016).
Parents (n = 17 Studies)
Research on parents’ explanations for their children’s ADHD shows mixed results. On the one hand, a num- ber of interviews with parents found that the majority of them consider ADHD as a physical/medical illness and they attribute their ofspring’s ADHD to biological causes such as genes and chemical imbalance in the brain (Charach et al. 2014; Harborne et al. 2004; Moen et al. 2011; Perry et al. 2005; Ghosh et al. 2016). This is con- sistent with two cross-sectional studies that showed the most common etiological explanation of their ofspring’s ADHD was biological causes (Bowen et al. 1991; Lin and Chung 2002). In a study that examined parents’ attribution of children’s behavior using written analogue question- naire and recalled incident interview, Johnston and Free- man (1997) found that parents of diagnosed children saw inattentive–overactive and oppositional-defant behaviors as more internally caused, less controllable by the child, and more stable compared with parents of children without
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behavioral disorders. The attribution pattern of the par- ents of diagnosed children was generally consistent with the neurobiological nature of the disorder and the widely adopted chronic disease models (Barkley 1991), such that they did not ascribe blame to children.
On the other hand, some qualitative fndings reveal that some parents of diagnosed children are reluctant to accept the biomedical explanatory model of ADHD or consider their child’s difficulties as an illness, attributing their child’s problems instead to learning and memory difcul- ties, insufcient or indulgent parenting of self or spouse, or developmental characteristics that would gradually dissipate (Davis et al. 2012; Lin et al. 2009; Singh 2003; Wilcox et al. 2007). Along this line, a questionnaire study with 119 parents of diagnosed children found that less than half of them (47.7%) believed ADHD was due to biologi- cal and genetic vulnerabilities, whereas more than half of them (52.2%) considered ADHD to be the result of poor parenting practices and parents’ indulgence (Ghanizadeh 2007). Finally, one study has found that parents of diag- nosed children believed in the equal importance of bio- logical and psychosocial causes of ADHD. Utilizing focus groups to interview 46 parents, the results showed that the dominant view among the parents was to attribute ADHD to a combination of biological and environmental causes such as genes and factors in the diet (Dennis et al. 2008). Similarly, Kildea et al. (2011) reported parental uncertainty in attributing their child behaviors to being “bad” or “ill” and whether they, as parents, were to blame or not.
Diferences between mothers and fathers in their etiologi- cal beliefs have been suggested by one cross-sectional study. In a sample of 36 mother–father dyads, the results showed that mothers tended to see ADHD as a biologically based disorder, whereas fathers were more likely to endorse psy- chological factors such as lack of efort of the child (Chen et al. 2008). Although the result of this study has to be inter- preted with caution because of its small sample size, such fndings on the diferences in the etiological beliefs between mothers and fathers are in line with several qualitative stud- ies (Hughes 2007; Lin et al. 2009; Singh 2003).
To compound these reported inconsistencies in attri- butions, the stability of these causal perceptions is also questionable. Davis et al. (2012) found that about a third of the parents of diagnosed children in their study shifted from a developmental and/or non-pathological attribution for their child’s symptoms to one that involved biological or genetic explanations.
Summary
Overall, both children/adolescents and their parents seem to hold heterogeneous views of causes of ADHD. In diagnosed children/adolescents, some of them consider ADHD as an
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illness/disorder, while some consider ADHD as a diferent way of thinking or as a part of their personality. In parents, some research seems to suggest that the majority of them endorse a biomedical model of ADHD and attribute the dis- order to biological causes, whereas other fndings suggest their preferences for psychological causes or developmental trajectories. In addition, there are a small portion of parents who attribute equal importance to biological and psycho- social causes. Moreover, both youngsters and parents seem to experience a shift toward the endorsement of biological causes with time.
Despite the considerable attention to etiological beliefs, little research has compared the perceptions of diagnosed children/adolescents and their parents; we could only iden- tify one such study. Bowen et al. (1991) reported that diag- nosed children and parents generally had 68–85% agreement regarding their perceptions of physiological, external, and personal causes of ADHD, with the highest agreement on the factor of injury or illness of a child as causing the dis- order. However, only descriptive information was reported in this study and no signifcance tests were conducted to examine their agreement. Moreover, the children in the study completed the questionnaires with their parents present and the perceptions of causes were assessed by dichotomous measures. Future research that utilizes continuous, inde- pendent measures of etiological beliefs would be more help- ful to delineate the degree of their agreement.
Implications
Children/Adolescents
We could identify only two studies that examined the impli- cations of diferent etiological beliefs of ADHD held by diagnosed children/adolescents. Honkasilta et al. (2016) qualitative study found that youth’s belief in the biological basis of ADHD was related to their perception of limited control of their behavior. This fnding also resonates with Mukherjee et al. (2016) who found that children who did not label ADHD as a disorder felt more in control of their behav- ior than those who did. Moreover, one study in individuals with mental illness found that people who attributed their mental illness to biological sources as opposed to psycholog- ical ones had a better-perceived quality of life, and reported less personal stigma and greater self-esteem (Mechanic et al. 1994). However, another study in adolescents with mental illnesses (44% of which were diagnosed with ADHD) found that a belief in biological causes was signifcantly correlated with self-stigmatizing attitudes, although biological attribu- tions were not found to be a signifcant independent predic- tor of self-stigma (Moses 2010).
Putting these fndings into a larger context, we postu- late that the etiological beliefs held by children/adolescents
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are likely to infuence the way they cope with the disor- der. In health psychology, biological attributions for one’s condition have been associated with prognostic pessimism, which is the perception that psychopathology is immuta- ble, determined, and beyond one’s control (Brown et al. 2007; Dar-Nimrod et al. 2014; Lebowitz et al. 2013, 2014) as predicted by relevant theoretical accounts (Dar-Nimrod and Heine 2011; Haslam 2011; Heine et al. 2017). Indeed, existing fndings suggest that youngsters who believe in the biological causes of ADHD also seem to experience limited control over their behavior (Honkasilta et al. 2016; Mukher- jee et al. 2016). This prognostic pessimism could afect suf- ferers’ symptoms’ reductions because outcome expectancies are a key determinant of actual prognosis and response to treatment (Greenberg et al. 2006; Mondloch et al. 2001). Such a prediction is consistent with the attributional theory of motivation (Weiner 1994), which holds that individu- als who view their negative behavior and characteristics as uncontrollable and pervasive are unlikely to feel that they can change, and are therefore unmotivated to pursue efortful change. Predicting from these theories and fndings, chil- dren/adolescents with ADHD who believe in the biological causes of the disorder may have a more pessimistic outlook on their prognosis and thus employ a less active coping strat- egy than those who do not endorse a biomedical view of ADHD.
Prognostic pessimism may undermine the adherence to treatment because the fatalism promoted by prognostic pessimism may potentially decrease motivation to adhere to treatment, even if the perceived efectiveness of phar- macotherapy benefts from the biological attributions (Leb- owitz 2014). To allow for a more precise understanding of biological attributions and medication adherence, Lebowitz recommended future research directly and separately meas- ure perceived efectiveness of medication, and the perceived duration of disorder/illness (i.e., the timeline dimension). Furthermore, as the efect of perceived etiology of health beliefs and behavior seems to work through activation of diferent essentialist biases that afect diverse processes (see Cheung et al. 2014), specifc attention should be directed to the understanding of the actual mediators through which causal explanations afect ADHD-related outcomes in a manner that can lead to translational benefts. For exam- ple, perceived biological causation (essentialism) increases deterministic beliefs that in turn may have positive efects such as reduced blame (Dar-Nimrod et al. 2011; Phelan 2005) but also have negative effects such as increased unhealthy behavior (Dar-Nimrod et al. 2014). Thus, future research should focus on psychological processes and inter- ventions that are designed to decouple the endorsement of biological causes from undesirable psychosocial processes such as fatalism (Gould and Heine 2012) that may facilitate undesirable ADHD-related outcomes.
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Parents
Existing studies suggest that parental etiological beliefs are related to their beliefs in treatments for their ofspring’s ADHD. Yeh et al. (2014) found that parents’ belief in physical causes of ADHD was positively associated with medication usage, whereas their belief in sociological causes of the disorder was negatively associated with such use of medicine. Likewise, Lin and Chung (2002) found that par- ents’ attribution to biological causes of ADHD was linked to their willingness to accept medication treatment. Qualitative research supports these fndings as parents described that a belief in a biomedical model for ADHD had facilitated their initiation of medication for their diagnosed children (Brinkman et al. 2009; dosReis et al. 2009). In a similar fashion, Davis et al. (2012) found that parents who believed the children’s symptoms were caused by poor parenting or lack of discipline did not endorse medication strongly as a treatment option. That said, parents’ belief in other non- biological causes does not seem to predict their treatment use for their ofspring, as a cross-sectional study found that parents’ beliefs in psychological causes were not signif- cantly related to the use of child/family psychotherapy for their diagnosed children (Johnston et al. 2005).
Beyond treatment compliance, we speculate that parents’ perception of causes may infuence the way they cope with the disorder. Moen et al. (2011) and Ghosh et al. (2016) qualitative studies found that parents’ attribution to a genetic explanation for their children’s ADHD had reduced their own feelings of guilt and frustrations. To further explore this phenomenon, we suggest that an assessment of illness representations of both parents instead of only one might be helpful in exploring how their agreement on the causes of ADHD afects coping strategies. This is particularly rel- evant when some existing studies suggested that mothers and fathers seem to hold diferent etiological beliefs regarding their ofspring’s ADHD (Chen et al. 2008; Lin et al. 2009; Singh 2003). Taking into account the perceptions of ADHD of each family member would allow a more accurate and comprehensive understanding of the management of the disorder in the family as a unit. Sufcient knowledge on this aspect might potentially help improve their ofspring’s adherence to treatment and the design of psychoeducation families with ADHD in the future.
Finally, the current literature and research exploring the etiology of ADHD emphasized a biopsychosocial model to understanding the disorder (Rapport et al. 2001). Future research should examine whether there are more benefts associated with a balanced view of causes of ADHD (e.g., whether it is related to a more optimal coping style, better treatment adherence, or greater emotional adjustment than those who endorse solely biological or psychosocial causes of ADHD).
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Summary
The implications of etiological beliefs of ADHD in diag- nosed children/adolescents remain largely underexplored. Based on related fndings, we postulate that attribution of causes afects emotional well-being and coping strategies. In particular, biological attributions for the disorder may lead to prognostic pessimism, which may bring forth a relatively passive coping strategy. That said, associations of physi- ological causes with medicalization may impede the adher- ence to medication treatment (Lebowitz 2014). In parents, existing research suggests that their endorsement of bio- logical causes of their ofspring may provide them with an emotional reprieve. That said, we posit that a direct measure of prognostic pessimism, an assessment of both spouses’ ill- ness representations, and investigations of the outcomes of endorsement of a biopsychosocial view of ADHD are still underdeveloped.
Finally, little is known about the implications of divergent etiological beliefs held by diagnosed children/adolescents and their parents. Based on the existing studies, we hypoth- esize that parents may have somewhat stronger belief in bio- logical causes than diagnosed children. That said, it remains to be investigated how discrepant etiological beliefs between parents and children infuence disorder-related outcomes.
Timeline
ADHD is a chronic disorder that the majority of diagnosed children continue to struggle with their symptoms into ado- lescence and up to 65% into adulthood (Barkley et al. 2008; Kessler et al. 2006; Wender 1998; Wender et al. 2001; Wol- raich et al. 2005). The expectations regarding the timeline, that is, the perceived course of the illness (Leventhal et al. 1980, 1984), among children and adolescents with ADHD and their parents have been investigated by 16 studies to date, of which only one of them had examined the outcomes of such perceptions (see Table 3).
Children/Adolescents (n = 4 Studies)
Some studies suggest that diagnosed youngsters perceive a short course of ADHD. Wiener et al. (2012) compared 86 children with ADHD (mean age = 11.5 years) with 66 typically developing children (mean age = 11.8 years), and found that these two groups were not signifcantly difer- ent on their perception of duration, stability, and future occurrence of the most problematic behaviors (see also Kaidar et al. 2003). In contrast, other fndings suggest chil- dren and adolescents with ADHD perceive a long course of ADHD. In a recent study conducted with 101 adoles- cents with ADHD (mean age = 15.6 years), Emilsson et al. (2017) found that participants perceived a long duration of
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Table 3 Qualitative and quantitative studies investigating the timeline dimension in diagnosed children/adolescents and their parents
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Participants
Children/adolescents Parents
Both
Quantitative studies Mixed meth-
ods
Emilsson et al. (2017) – Kaidar et al. (2003)
Wiener et al. (2012)
Chen et al. (2008) – Freeman et al. (1997)
Ghanizadeh (2007)
Gerdes and Hoza (2006)
Huang et al. (2014)
Johnston and Freeman (1997) Johnston et al. (2010)
Zima et al. (2013)
– –
persist for the entire life. Similarly, Huang et al. (2014) found no diferences in the beliefs of future occurrences of ofspring’s hyperactive/impulsive behavior between moth- ers of children with ADHD and mothers of typical children.
Summary
The fndings on the perception of the course of ADHD among diagnosed children are mixed. Some youngsters per- ceive a lifelong course, but others do not believe that their problem behaviors will persist into the future. In parents, a number of studies suggest they expect a chronic duration of ADHD, however, other studies suggest they tend to view ADHD as a temporary condition. To our knowledge, there has been no study that compared their perception on the duration of ADHD. The heterogeneous nature of the avail- able fndings suggests the need to explore moderating vari- ables, that is, what are the characteristics that diferentiate individuals’ perceptions of ADHD timeline.
Implications
Children/Adolescents
We could identify only one study that examined the impli- cations of the perception of duration of ADHD among diagnosed youngsters. Emilsson et al. (2017) found that participants’ expectation of a long course of ADHD was positively correlated with intentional non-adherence, that is, an active decision not to take the medication as prescribed. This fnding demonstrates the importance to understand youngsters’ perception of the time course of ADHD, which has received only minimal research atten- tion to date.
Apart from adherence to treatment, research in indi- viduals with mental illnesses suggests that a perception of a long course of the disorder is related to the experience of
Qualitative studies
Singh et al. (2010)
Charach et al. (2014) Dennis et al. (2008) Hansen and Hansen (2006) Perry et al. (2005)
ADHD symptomology. The heterogeneous fndings were also refected in Singh et al.’s (2010) interviews with 16 diagnosed children and adolescents (aged between 9 and 14), in which some of them felt that they would grow out of ADHD, whereas others viewed ADHD as a lifelong illness.
Parents (n = 12 Studies)
Some studies suggest parents see ADHD as a chronic disor- der (e.g., Charach et al. 2014). Qualitative research reveals that parents perceived a long duration of ADHD, as they considered ADHD to be chronic and reported their child would not “grow out” of it, it was “long term,” and there was no “cure… just control” (Perry et al. 2005, p. 318). Quantita- tive research also points to similar perceptions. In a study that measured parents’ attribution for children’s behavior, Johnston and Freeman (1997) found that parents of children with ADHD saw inattentive–overactive behavior as more stable than parents of children without behavior disorders. In another study, Gerdes and Hoza (2006) found that moth- ers of children with ADHD attributed inattentive–impulsive behavior to more stable factors than mothers of undiagnosed children when viewing video-clips of their own children or a confederate child (but not when reading vignettes). However, other cross-sectional studies that examined parents’ attribu- tions using written scenarios found that parents tended to see their ofspring’s ADHD as a relatively chronic disorder (Chen et al. 2008; Johnston et al. 2010).
Other fndings suggest that some parents do not view ADHD as a chronic afiction (Dennis et al. 2008; Hansen and Hansen 2006). In a study conducted with 529 parents of children with ADHD (mean age = 10.0 years), results showed that half of the parents did not think that ADHD regularly persists into adolescence or adulthood (Zima et al. 2013). Ghanizadeh et al. (2007) survey collected from 119 parents of children with ADHD found that only 6.1% reported expectations that ADHD-related difculties would
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depression (Jolley and Garety 2004; Watson et al. 2006). We speculate that such efects may also exist among indi- viduals with ADHD. We also speculate that dispositional optimism, a stable tendency to believe that, in the future, good things are more likely to happen than bad things, may moderate the relationship between the timeline expec- tations and health outcomes. Dispositional optimism is associated with active coping with stressors (Nes and Segerstrom 2006), better psychological adjustment in chronically ill patients (Fournier et al. 2002), as well as better psychological well-being (Cederblad et al. 1995; Giltay et al. 2006) and less depressive symptoms (Giltay et al. 2006) among individuals with mental disorders. We predict that children and adolescents who have a higher level of optimism may employ more adaptive coping and enjoy better emotional health than those with a lower level of optimism even though both of them may perceive a long course of ADHD. Future research that explores children’s perception of the time course of ADHD and its related outcomes should integrate a measure of optimism to test this proposition.
Parents
Unfortunately, we could not identify any studies that exam- ined the outcomes of parents’ perception of the course of ADHD of their ofspring. Nevertheless, a study that exam- ined this dimension among parents of children with autism spectrum disorder (ASD) may be helpful to postulate such potential outcomes. The results of that study found that par- ents’ perception of a cyclical timeline (i.e., beliefs of a cyclic or episodic course of illness/disorder) of their children’s ASD was associated with their use of medication and infor- mation sources (Al Anbar et al. 2010). That is, parents’ per- ception of the unpredictable timeline predicted an increased use of medication; however, it predicted a lower use of training programs and reviews as the information source of ASD. Moreover, although the Al Anbar et al. found no signifcant correlations between parents’ perceived duration of the disorder and treatment use, they found that parents’ perception of duration of ASD was highly correlated with their perceived consequences of ASD for the children and themselves. This suggests an emergence of illness percep- tion pattern that remains to be investigated among parents of children with ADHD.
Summary
A long perceived course of ADHD of diagnosed youngsters seems to undermine their adherence to treatment, and we postulate it may also take a toll on their emotional well- being. As for parents, extrapolating from research on parents
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of children with ASD, we predict from that their perception of an unpredictable timeline may be related to increased use of medication treatment. That said, future research is needed to test these predictions.
Moreover, since the findings suggest that diagnosed youngsters and their parents seem to have heterogeneous expectations of the course of ADHD, we recommend future research to explore potential moderators to explain these inconsistencies. We also suggest to examine the agreement of child–parent dyads’ perceptions and investigate the impli- cations of any discrepant views. Given that their respective expectations of timeline seem to be associated with treat- ment-related outcomes, any discrepant perceptions between them may contribute to parent–child confict and may poten- tially adversely afect the treatment adherence.
Consequence
Research shows that ADHD could impact many aspects of an individual’s life, such as academic endeavors (Faraone et al. 2001), social interactions (Bagwell et al. 2001), par- ent–child relationships (Johnston and Mash 2001), and gen- eral quality of life and self-esteem (Pastor and Reuben 2006; American Academy of Pediatrics 2000; Klassen et al. 2004; Strine et al. 2006). Moreover, ADHD does not impact only the child but also parents and siblings, causing disturbances to family and marital functioning (Harpin 2005; King et al. 2016).
The consequence dimension of the CSM assesses what the individual believes will be the consequences of having the disorder on their lives (Leventhal et al. 1980, 1984). This perception in parents/caregivers is subdivided into the perceived consequences for the child and for themselves (Barrowclough et al. 2001). There are 37 published studies that investigated this dimension in diagnosed children/ado- lescents and their parents (Table 4). Of these studies, many are qualitative studies, and only four have investigated or reported the outcomes of such perceptions.
Children/Adolescents (n = 17 Studies)
Existing fndings suggest the majority of diagnosed children/ adolescents perceive adverse consequences of ADHD on their lives. A cross-sectional study found that adolescents with ADHD (mean age = 15.6 years) perceived that ADHD afects their life to a moderate extent (Emilsson et al. 2017). Across a number of interviews, diagnosed youngsters indi- cated that ADHD impacted their life in various manners, particularly afecting their academic performance and social relationships, introducing difculties with sustaining atten- tion at class and homework completion, problems with com- prehension, slower rate of learning, negative treatment from teachers, and difculties pertaining social interactions and/
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Table 4 Qualitative and quantitative studies investigating the consequence dimension in diagnosed children/adolescents and their parents
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Participants
Children/adolescents
Parents
Qualitative studies
Avisar and Lavie-Ajayi (2014) Brinkman et al. (2012) Charach et al. (2014)
Cheung et al. (2015)
Hallberg et al. (2010) Kendall et al. (2003) Liontou (2016)
Singh et al. (2010) Walker-Noack et al. (2013) Wiener and Daniels (2016)
Brinkman et al. (2009) Charach et al. (2006) Davis et al. (2012) Dennis et al. (2008) Harborne et al. (2004) Ho et al. (2011)
Perry et al. (2005)
Peters and Jackson (2009) Singh (2011)
Kildea et al. (2011)
Lin et al. (2009)
McIntyre and Hennessy (2012) Moen et al. (2011)
Wilcox et al. (2007)
Moen et al. (2014) Sikirica et al. (2015)
Quantitative studies
Bussing et al. (2011) Emilsson et al. (2017) Kaidar et al. (2003) Wiener et al. (2012)
Caci et al. (2014) Ghanizadeh (2007) Jiang et al. (2014) Norvilitis et al. (2002) Mikami et al. (2015)
Mixed methods
Mukherjee et al. (2016)
–
Both
––
or forming friendships (Brinkman et al. 2012; Cheung et al. 2015; Kendall et al. 2003; Sikirica et al. 2015; Walker-Noack et al. 2013; Wiener and Daniels 2016; Mukherjee et al. 2016). Moreover, many children felt being stigmatized and bullied because of the disorder (Brinkman et al. 2012; Cheung et al. 2015; Kendall et al. 2003; Moen et al. 2014; Sikirica et al. 2015; Singh et al. 2010; Walker-Noack et al. 2013), and wanted to hide the ADHD diagnosis from others (Hallberg et al. 2010; Honkasilta et al. 2016). Wiener et al. (2012) also found that diagnosed children viewed their self-iden- tifed most problematic behavior as more stigmatizing than peers without ADHD using a quantitative measure. Apart from stigma, interviews with diagnosed youngsters revealed they perceived consequences related to disruption of their family relationship, which include difculties getting along with parents and siblings (Cheung et al. 2015; Sikirica et al. 2015; Walker-Noack et al. 2013), and difculties with tak- ing medication, especially in terms of the physical and emo- tional side efects, such as dizziness, sleep problems, expe- rience of depressive state, and loss of identity (Avisar and Lavie-Ajayi 2014; Kendall et al. 2003; Sikirica et al. 2015; Walker-Noack et al. 2013). Such detrimental perceptions of the consequences of ADHD do not seem to invariably afect all children. Kaidar et al. (2003) did not fnd that children with ADHD were more likely to view their most problem- atic behavior as stigmatizing than peers without ADHD. However, the result of this study has to be interpreted in the context of its small sample size, in which there were only 16
children in the experimental and control group, respectively. Nonetheless, qualitative data also reveal that some diagnosed youngsters do not perceive problems resulted from ADHD (Brinkman et al. 2012) nor view the disorder as impairing as they characterized ADHD as “normal” (Charach et al. 2014, p. 4). Similarly, Kendall et al. (2003) and Liontou (2016) found that some of the diagnosed children and adolescents did not think ADHD afects their family.
Interestingly, a small portion of diagnosed children and adolescents seem to perceive positive consequences of ADHD. The benefts they perceived include having an outgoing and social personality, sense of humor, increased energy, and reduced need for sleep (Kendall et al. 2003; Walker-Noack et al. 2013).
Parents’ Perception of Consequences on Their Ofspring (n = 12 Studies)
Cross-sectional studies indicate that parents perceive adverse consequences of ADHD on their diagnosed ofspring. Jiang et al. (2014) found that most parents indicated that their children’s ADHD symptoms interfered with their home or school functioning from “often” to “very often” (p. 536). Likewise, a large sample parents of diagnosed children/ado- lescents found that the parents report a range of negative impacts of ADHD on their ofspring’s daily life and activi- ties, social life, relationships, and their self-esteem (Caci et al. 2014).
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Qualitative data also show that parents perceive con- siderable negative consequences of ADHD on diagnosed children/adolescents. In a number of interviews, parents recounted impairments in their ofspring’s academic and social functioning as a result of ADHD; these impairments included learning difculties, behavioral and disciplinary problems, and difculties in getting along with peers that sometimes resulted in social exclusion (Davis et al. 2012; Ho et al. 2011; McIntyre and Hennessy 2012; Peters and Jackson 2009; Sikirica et al. 2015; Wilcox et al. 2007; Ghosh et al. 2016). Some parents also perceived their ofspring’s ADHD had resulted in increased conficts with parents and siblings (Lin et al. 2009; Sikirica et al. 2015), increased emotional distress and lower self-esteem (Davis et al. 2012; Ghosh et al. 2016; Sikirica et al. 2015), being misunderstood (Charach et al. 2006; Moen et al. 2011; Moen et al. 2014), and having adverse side efects of their medication (Charach et al. 2006; Davis et al. 2012; Sikirica et al. 2015).
Similar to the unexpected fndings among children, a small portion of parents perceive positive consequences of ADHD for their ofspring. For instance, qualitative data show that some parents described ADHD as a strength that bestowed their children with energy and “incredible capac- ity for knowledge about sport” (McIntyre and Hennessy 2012, p. 77) or “high physical energy levels and cognitive abilities” (Ghosh et al. 2016, p. 4) that they articulated many well-known intelligent people such as Aristotle and Einstein also experienced ADHD symptoms. Other parents perceived positive qualities resulting from ADHD, describing their children as “bubbly,” “very social,” having “great personal- ity,” and being “bright” (Charach et al. 2006, p. 78), and “fun” (Ghosh et al. 2016 p. 4).
Parents’ Perception of Consequences on Themselves (n = 16 Studies)
By and large, fndings indicate that parents of diagnosed children/adolescents perceive considerable adverse conse- quences of their ofspring’s ADHD on themselves. Many interviews reported that parents recount challenges in meet- ing the needs of the demanding nature of their diagnosed ofspring, and they often describe the physical and emo- tional strain on themselves such as tiredness and feelings of frustration and helplessness (Ho et al. 2011; Kildea et al. 2011; Lin et al. 2009; McIntyre and Hennessy 2012; Peters and Jackson 2009; Sikirica et al. 2015; Ghosh et al. 2016). Moreover, parents also indicate that ADHD has negatively impacted their relationship with the diagnosed children and their spouses due to the demanding behavior of their diagnosed children and/or increased conficts over its man- agement (Dennis et al. 2008; Kildea et al. 2011; McIntyre and Hennessy 2012). Moreover, some parents report their own social lives were restricted because of their children’s
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disruptive behavior (McIntyre and Hennessy 2012; Peters and Jackson 2009; Sikirica et al. 2015). Further, some par- ents reported adverse efects on their work life as they tried to meet the demanding needs of the diagnosed ofspring (Ho et al. 2011; McIntyre and Hennessy 2012; Sikirica et al. 2015), and some reported experiencing fnancial burdens as a result (Dennis et al. 2008; Ho et al. 2011; Wilcox et al. 2007).
Social evaluations seem also to be endured by parents. Interviews indicate that parents feel stigmatized and targets of blame from others, which include extended family mem- bers, other parents at schools, teachers, friends, people in the public, and/or health professionals, who casted doubts about the parents’ parenting practices (Charach et al. 2006; Harborne et al. 2004; Ho et al. 2011; McIntyre and Hen- nessy 2012; Moen et al. 2011; Moen et al. 2014; Perry et al. 2005; Peters and Jackson 2009; Sikirica et al. 2015). This is consistent with fndings on the perception of stigma from two quantitative studies. Mikami et al. (2015) found that parents of children with ADHD perceived a moderate level of afliate stigma. Norvilitis et al. (2002) found that mothers of diagnosed children believed that parents without ADHD held more negative views on ADHD than themselves.
However, a small portion of parents perceive positive consequences of ADHD for themselves. Interview fndings show that a few parents indicate that they achieved personal growth through the caregiving process and they had gained more “competence, mental maturity in problem-solving with family situations and difculties” and “better commu- nication and relationships with family members, the child and other relatives” (Ho et al. 2011, p. 50). Other parents describe their children with ADHD as “a joy to have” (Den- nis et al. 2008; p. 26). In addition, a few parents noted that their child/adolescent’s ADHD did not negatively impact their relationship with their partners, and some even noted that the disorder had tightened the bond with their spouse (Sikirica et al. 2015).
Summary
Taken together, the fndings on the perceived consequences of ADHD were more heterogeneous in diagnosed children/ adolescents than among their parents. Among the diag- nosed youngsters, some perceive adverse consequence of ADHD on multiple aspects of their lives, while a smaller portion does not perceive impairment from disorder and a few even perceive positive consequences of the disorder. As for parents, fndings suggest the majority of them perceive considerable adverse consequences for their ofspring and for themselves, while a small minority perceives positive impacts of the disorder.
Limited research has compared parents’ and children’s perceptions of consequences of ADHD. One qualitative
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study found considerable agreement regarding their per- ceived impacts of ADHD on themes that included aspects of school functioning and medication adverse efects (Sikirica et al. 2015). However, this study has to be interpreted in the context of its extremely small sample size of the six partici- pating adolescent–parent dyads.
Implications
Children/Adolescents
There are two studies that examined the implications of diagnosed youngsters’ perceived consequence of ADHD. Emilsson et al. (2017) found that such perceived conse- quences were associated with unintentional treatment non- adherence, that is, adolescents who perceived that ADHD only marginally afected their life adhered less to medica- tions. This fnding is consistent with the research on indi- viduals with mental illnesses, which has found that the per- ception of greater negative consequences of one’s disorder is associated with more efortful attempts to cope (Brown et al. 2001) and greater medication adherence (Budd et al. 1996). However, research also shows that perception of increased efects of mental illness is related to experiencing depres- sion (Birchwood et al. 2009; Lobban et al. 2004) and lower perceived quality of life (Lobban et al. 2004). Extrapolating from these studies, diagnosed children and adolescents who perceive minimal consequences of ADHD may, on the one hand, have worse adherence to treatment and employ less active coping, on the other hand, they may experience better emotional well-being than those who perceive more perva- sive consequences. That being said, the emotional impact of the perceived consequences of ADHD among diagnosed youngsters has yet to lead to published investigations.
Focusing on one specifc consequence of ADHD stigma, Bussing and colleagues (2011) found that among adoles- cents who were diagnosed or screened for ADHD, the per- ception of reduced ADHD public stigma was associated with increased use of mental health services in the past year. They also found that such increased services’ use was predicted from their perception of increased emotional and behavioral impairment and positive view of medications. The fndings of this study suggest that youngsters’ perception of conse- quences may interact with their perception of other dimen- sions of illness representation (e.g., treatment control) to infuence the way they cope with the disorder (e.g., seeking professional support).
Parents’ Perception of Consequences on Their Ofspring
We could identify only two studies that investigated the implications of parents’ perceived adverse consequences of
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ADHD for their diagnosed ofspring. Using cross-sectional design, Jiang et al. (2014) found that mothers’ perceived level of impairment from ADHD symptoms was positively associated with the acceptability and efectiveness of com- bined treatments for a hypothetical child; however, such perceived level of impairment did not predict their rat- ings of the efectiveness of behavioral strategies for their own child. Brinkman et al. (2009) interviews with parents reported that their perceptions of their children’s functional impairments related to ADHD, together with their accept- ance of the ADHD diagnosis, were key factors of medica- tions’ initiation. These two studies suggest that parents’ perceived impairment from ADHD may influence their attitudes toward and the pursuit of diferent treatments for their ofspring. Relatedly, research with parents of children diagnosed with autism (mean age = 13 years) has found that parents’ perception of serious consequences of the dis- order was associated with their use of interventions, which included behavior or social skills therapy (Al Anbar et al. 2010). This fnding further supports the connection between parents’ perception of the severity of impairment and their initiation of treatment. That said, given the paucity of the relevant research, additional eforts are needed to elucidate how parents’ perceived level of severity of consequences of ADHD for their ofspring are associated with their beliefs, uptake, and adherence to diferent treatments for their chil- dren’s ADHD.
Apart from the treatment-related outcomes, parents’ per- ceived consequences for their diagnosed ofspring may also infuence their own experiences. Barrowclough et al. (2001) found in carers of individuals with schizophrenia that per- ceptions of graver consequences for the patient were asso- ciated with not only increased sufers’ psychopathology’s symptoms, but also increased animosity between the patients and themselves. Since the existing fndings seem to suggest parents of children/adolescents with ADHD perceived con- siderable adverse consequence of ADHD, we postulate that parents’ perceived consequence may also have similar impli- cations on their ofspring’s symptoms and their relationship with the children/adolescents. That said, future research is needed to test these predictions.
Parents’ Perception of Consequences on Themselves
We could not identify any studies that examined the impli- cations of parents’ perceived consequence of ADHD for themselves, but we detected studies that investigated the impacts of parents’ perception of stigma and caregiving burden. Mikami et al. (2015) found that controlling for chil- dren’s severity of ADHD symptoms, parents’ perception of greater afliate stigma associated with their children’s ADHD predicted more parental negativity in their interac- tion with the child. Moreover, parents’ perceived stigma may
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potentially have an adverse impact on ofspring’s experience of self-stigma and the parents’ psychological well-being. In a sample of 60 adolescents (mean age = 14.8 years) diag- nosed with afective and/or behavioral disorders (44% of which were diagnosed with ADHD), Moses (2010) found that parents increased perception of stigma was associated with adolescents’ experience of more self-stigma. Although this study was not conducted exclusively with parents of children/adolescents with ADHD, this fnding suggests that the outcome of parental perception of afliate stigma of their ofspring’s ADHD may not only link with parental negativ- ity, but may also contribute to their ofspring’s experience of self-stigma.
Qualitative research also points to the adverse outcomes of parents’ perception of the caregiving burden in relation to their own psychological well-being. Interviews with parents indicate that many think that the difculties they experienced in taking care of their diagnosed ofspring have an adverse impact on their emotions (Davis et al. 2012; Harborne et al. 2004; Kildea et al. 2011). For instance, parents experienced “the relentless pressure of the constant attention and dis- cipline required to ensure the best possible outcome their children with ADHD” (Peters and Jackson 2009, p. 65), and described they felt “shocked,” “troublesome,” “painful,” and “disappointed” at times in caregiving (Ho et al. 2011, p. 48). Along with this line, research conducted with caregiv- ers of individuals with schizophrenia found that caregivers’ perception of more negative consequences for themselves was associated with caregivers’ experience with increased depression and perceived subjective burden (Barrowclough et al. 2001). Future research that examines the specifc attri- butions of carer burden, for example, whether it is related to their perceived consequence of ADHD or another dimen- sion for their ofspring and/or for themselves, may enable clinicians to provide guidelines to improve the psychological well-being of parents of children/adolescents with ADHD.
Summary
The implications of the perception of consequences of ADHD among diagnosed children/adolescents and their par- ents are not sufciently understood. In diagnosed youngsters, fndings suggest their perception of minimal consequences of ADHD is related to reduced treatment adherence; how- ever, such perception may also enhance their emotional well- being. Moreover, fndings suggest their reduced perceptions of stigma are associated with the use of mental health ser- vices. As for their parents, studies suggest their perceived severity of impairment of ADHD in their ofspring may infuence their initiation of treatment. Moreover, extrapo- lating from other illnesses, parents’ perception of serious consequences of ADHD may adversely afect their psycho- logical well-being and their relationship with their ofspring.
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Finally, to our knowledge, there has been no published research directed at the implications of agreement or diver- gence of the perceived consequences of ADHD between parents and their ofspring. Given the developmental difer- ences between children/adolescents and their parents and the heterogeneous perceived consequences among diagnosed youngsters, we postulate that diagnosed youngsters may per- ceive fewer consequences of ADHD than their parents. To procure testable hypotheses for the efects of (dis)agreement about ADHD consequences we resort to evaluate related research. In a sample of 82 carer–patients dyads, Kuipers et al. (2007) found that caregivers of patients with psychosis who were more optimistic about the consequences of psy- chosis compared with the patients predicted greater anxiety, depression, and lower self-esteem in the patients. Further research is needed to evaluate whether similar efects occur in the context of ADHD.
Cure/Control
In CSM, the cure/control dimension refers to the beliefs about how the symptoms of an illness can be controlled (Leventhal et al. 1980, 1984). It is further subdivided into beliefs about control by treatments and control by the person (Moss-Morris et al. 2002).
Treatment Control
Treatment control refers to the beliefs about the poten- tial for various treatments to control unwanted symptoms (Moss-Morris et al. 2002). This belief has received the most research attention among all the illness beliefs, such that we identifed 57 studies reporting on this dimension among chil- dren/adolescents and parents, and 22 of them have examined the implications of such perceptions (see Table 5).
Reviews (Chronis et al. 2004; MTA Cooperative Group 1999; Swanson et al. 1995) and the large-scale Multimodal Treatment for ADHD (MTA Cooperative Group 1999) reported relatively large efects of medication on the symp- toms of ADHD. However, maximum behavioral improve- ments appear to arise from treatments that combine medi- cation and behavioral interventions (Conners et al. 2001; Swanson et al. 2001). Although the relative efcacy and efectiveness of medication versus behavioral treatment alone are debated, most researchers tend to agree that medi- cation or multicomponent treatments that include medica- tion generally show superiority over behavioral treatments ofered alone (Johnston et al. 2008).
Children/Adolescents (n = 18 Studies)
Findings from cross-sectional studies indicate that most chil- dren and adolescents with ADHD perceive medication as
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Table 5 Qualitative and quantitative studies investigating the treatment control dimension in diagnosed children/adolescents and their parents
Participants
Children/adolescents
Parents
Qualitative studies
Avisar and Lavie-Ajayi (2014) Brinkman et al. (2012) Cheung et al. (2015)
Hallberg et al. (2010)
Kendall et al. (2003) Knipp (2006)
Singh et al. (2010) Walker-Noack et al. (2013)
Brinkman et al. (2009)
Bull and Whelan (2006) Charach et al. (2006) Coletti et al. (2012)
Davis et al. (2012)
Dennis et al. (2008)
Friars and Mellor (2007) Ghosh et al. (2016)
Hansen and Hansen (2006) Jackson and Peters (2008) Leggett and Hotham (2011) Perry et al. (2005)
Wilcox et al. (2007)
Charach et al. (2014) Flannagan et al. (2002) McElearney et al. (2005) Moen et al. (2014) Sikirica et al. (2015) Wan et al. (2016)
Quantitative studies
Emilsson et al. (2017)
Moline and Frankenberger (2001)
Berger-Jenkins et al. (2012) Bennett et al. (1996)
Chen et al. (2008)
Corkum et al. (1999) Concannon and Tang (2005) dosReis et al. (2003) dosReis et al. (2006) dosReis et al. (2017)
Hébert et al. (2013)
Huang et al. (2013)
Ghanizadeh (2007)
Johnston et al. (2005)
Johnston et al. (2008)
Johnston et al. (2010)
Krain et al. (2005)
Lin and Chung (2002)
MTA Cooperative Group (1999) Sinha and Efron (2005)
Toomey et al. (2012) Berger et al. (2008)
Bowen et al. (1991)
Efron et al. (1998)
Harpur et al. (2008)
McNeal et al. (2000)
Thorell and Dahlström (2009)
Mixed methods
–
dosReis et al. (2009)
Both
Bussing et al. (2012)
helpful (Berger et al. 2008; Efron et al. 1998; McElearney et al. 2005); however, many of them also negatively experi- ence adverse side efects of this treatment (e.g., Moline and Frankenberger 2001). In a sample of 45 diagnosed children and adolescents (mean age = 11.9 years) who had been taking medication on average for 3.3 years, Bowen et al. (1991) found that most (89%) felt medications were helpful and almost all of these children (97.8%) reported at least one beneft from taking medication such as improvement in concentration and ability to sit still; however, as many as 82.2% of these children also reported at least one side efect such as sleep difculties and feeling something was wrong with them. Despite that, most of them (88.9%) indicated they were willing to continue taking the medications (see Emils- son et al. 2017 for similar rates). Similarly, a study with 79 diagnosed children (mean age = 13.1 years) found that the majority of participants reported ameliorating efects of medication in terms of their improved concentration abil- ity (83%) and ability to sit still and to complete homework (73%); however in this study, less than half (43%) reported at least one negative efect related to medication, and a
relatively small portion (20%) indicated they wanted to dis- continue taking it if it were up to them to decide (Thorell and Dahlström 2009). The fndings of these two studies have to be interpreted in the context of the potential bias related to parents’ presence in children’s completion of the study, and the psychometric properties of the measures were unknown. Nonetheless, a study in which 50 high-school students (mean age = 15.1 years) completed the questionnaire independently of parents also reported somewhat similar fndings. The results showed that most participants perceived an above average efectiveness of medications on their ability to pay attention, to control their behavior, and to socialize with par- ents and teachers. That said, more than half of them (64%) perceived some side efects of the medication, and about a third (35%) wanted to discontinue taking it (Moline and Frankenberger 2001).
Qualitative research reveals a more mixed perception regarding youngsters’ perception of treatment control. Kendall et al. (2003) found that many youngsters (mean age = 11.2 years) acknowledged the medication was helpful in controlling their hyperactivity, increase their
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concentration, and improve their grades and behavior, whereas only a few of these youngsters wanted to stop tak- ing the pills even though many experienced side efects or the fear and shame associated with medication to control behavior (see also Knipp 2006; Singh et al. 2010; Wan et al. 2016; Hallberg et al. 2010). However, other studies found a relatively divided view on medications. Cheung et al. (2015) interviewed 40 diagnosed adolescents and young adults (aged between 16 and 23) and found the participants had varying views on the efectiveness of medications for ADHD, with some youngsters viewing medications as inef- fective. Likewise, Charach et al. (2014) interviewed 12 ado- lescents with ADHD and found varying levels of satisfaction with the medication, with some participants wishing treat- ment secession. Moreover, Avisar and Lavie-Ajayi (2014) found that among 14 diagnosed adolescents, half indicated that the medication was helpful in improving their abil- ity to concentrate and school performance; yet, the other half thought it did not help or even disrupted their studies because it depleted their energy and/or produced disruptive side efects. Furthermore, Sikirica et al. (2015) interviews with 28 adolescents with ADHD found that all of the par- ticipants perceived the efectiveness of medications as inad- equate, as they still experienced the core symptoms such as difculty concentrating, impulsivity, and hyperactivity while taking medication. In addition, two other studies found that most youngsters in their samples prioritized the negative aspects of medication over any perceived benefts associated with the treatment (Brinkman et al. 2012; Walker-Noack et al. 2013).
Only a handful of qualitative studies have examined diag- nosed children and adolescents’ perception of the helpful- ness of non-pharmacological treatments. The fndings of these studies suggest the youngsters generally consider these treatments as inefective. Cheung et al. (2015) found that most of their participants who had taken part in an ADHD training that involved learning emotional control and social skills (n = 20) indicated that the efects were short-lived. Similarly, Walker-Noack et al. (2013) focus groups with diagnosed youth reported that only two of the six groups identifed behavioral interventions as a means of helping youth with ADHD, and even the participants in these two groups expressed that rewards and reinforcement were mostly unhelpful for managing the ADHD symptoms. Like- wise, Singh et al. (2010) found that only a few youngsters reported experiences of non-pharmacological interventions that were memorable or helpful, with two out of 16 indicat- ing it was helpful (although still less than medication).
Parents (n = 34 Studies)
Whereas the majority of the fndings suggest that parents of children and adolescents with ADHD generally think
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medications are helpful, some parents cast doubt on their efectiveness (e.g., Bowen et al. 1991; Ghanizadeh 2007; Lin and Chung 2002). Moreover, several qualitative studies reveal that parents constantly evaluate the efectiveness of medication and revisit the decision whether to use medica- tion treatment for their diagnosed ofspring, suggesting the dynamic nature of this construct (e.g., Brinkman et al. 2009; Charach et al. 2006; Davis et al. 2012).
More specifcally, Bowen et al. (1991) found that almost all parents of diagnosed children (97.8%) noticed children’s improvement in concentration and a large majority of par- ents (86.7%) perceived their children were better able to sit still with the use of medication (see A. Huang et al. 2013; McElearney et al. 2005; Thorell and Dahlström 2009 for similar indications for improvement; Ghosh et al. 2016). A smaller percentage of parents ofered a more holistic endorsement of the efectiveness of medication: Ghanizadeh (2007) cross-sectional study with 119 parents of younger diagnosed children (mean age = 8.4 years) found that just over a half of the parents (60.4%) believed that ADHD could be treated and managed with proper medication (see also Berger et al. 2008).
Endorsement of medications does not imply that the par- ents are blind to negative efects of medications. S. dosReis et al. (2003) surveyed 247 parents whose diagnosed children had been taking medication in the past 12 months for ADHD and found that although most were overall satisfed with the medication (83%) and believed that stimulant use had long-term benefts in improving their ofspring’s behavior (70%), half of them (50%) still reported they were hesitant to use stimulants. However, a number of other studies found that parents perceived adverse side efects of medications were outweighed by their perceived benefts (Coletti et al. 2012; Davis et al. 2012; Hansen and Hansen 2006; Perry et al. 2005).
Although this general pattern of acknowledging that the improvement outweighs the costs, even parents who notice improvements may discontinue treatment in light of side efect. For example, Toomey et al. (2012) found that although the majority of parents of diagnosed children (86%) perceived the medication worked well, some (21%) have decided to discontinue the use of ADHD medica- tion for their children (see Leggett and Hotham 2011 for similar fndings). Likewise, qualitative research found that some parents perceived medications’ benefts but saw the adverse efects of medication as outweighing the benefts of the treatment (Brinkman et al. 2009), or viewed medica- tion as unacceptable (dosReis et al. 2009).
Qualitative research also reveals a more nuanced paren- tal view of the actual efectiveness or utility of medication (e.g., Dennis et al. 2008; Sikirica et al. 2015; Wilcox et al. 2007). For example, Bull and Whelan (2006) found that while some parents saw medications as a crucial aid in
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managing their children with ADHD, others judged the efectiveness to be inadequate or even believed that the medication exacerbated their child’s disruptive behavior (see also Jackson and Peters 2008).
The perception of side efects of medication may also lead to preferences for less efective treatments. For exam- ple, Johnston et al. (2008) found that mothers of boys with ADHD rated medication as more efective than behavioral strategies with their own children, but rated behavioral parent training as a more acceptable treatment for children with ADHD than medication in hypothetical scenarios. Parents’ more favorable dispositions toward pharmacol- ogy-free treatments over medication have been extensively demonstrated in the literature (Corkum et al. 1999; John- ston et al. 2005; Krain et al. 2005; Lin and Chung 2002; MTA Cooperative Group 1999), particularly among par- ents whose children were newly diagnosed with ADHD (dosReis et al. 2017). That said, not all non-pharmaco- logical treatments are viewed similarly; mothers seem to have more faith in behavioral management than fathers, whereas fathers seem to prefer psychological treatments for ADHD than mothers (Chen et al. 2008). Furthermore, dosReis et al. (2006) found that while 88% of the 57 par- ents of diagnosed children who had been taking medi- cation for 2.6 years believed medications improved the ADHD symptoms, less than half (46%) preferred medica- tion to counseling.
Despite the general positivity toward behavioral and psy- chological treatments, studies seem to suggest that some par- ents are not very impressed with their efectiveness. Whereas Sikirica et al. (2015) found that among a third of the parents whose ofspring were receiving behavioral therapy, only a few of them (8%) reported it was inefective, others have found reduced perceived efcacy of such treatment (Davis et al. 2012; Dennis et al. 2008). Moreover, Berger et al. (2008) found that the majority of parents (74%) believed that stimulants together with educational or psychological support were the most efective treatment for their children with ADHD (see also dosReis et al. 2003; Ghosh et al. 2016). Reduced perceived treatment efectiveness was even more pronounced for parents’ evaluations of diet and vitamin interventions for their ofspring’s ADHD (e.g., Concannon and Tang 2005; Johnston et al. 2005; Leggett and Hotham 2011; Sinha and Efron 2005). For example, Huang et al. (2013) found that only a minority of parents (one out of six who have used it) rated dietary supplement as helpful.
Summary
The fndings suggest most children and adolescents with ADHD and their parents perceive medication as efective means to reduce the symptoms of ADHD; yet, they also have a varying degree of concerns and experiences of the related
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adverse efects. Among the diagnosed youngsters, many judges the benefts of medications to outweigh their adverse efects, whereas others believe medications have inadequate efectiveness or that the adverse efects outweigh the ben- efts. It seems like medication discontent is more commonly found among older children evaluated in existing research; younger children tend to appreciate medication more than adolescents and young adults. Longitudinal, quantitative studies may help in formally exploring the role of matura- tion and potentially assess the predictors of such a shift in perception if evidence for such a shift is obtained. In parents, many fndings suggest they perceive the benefts of medica- tions outweigh its costs, but some judge the efectiveness of medications as inadequate and even inefective or otherwise perceive the costs to outweigh the benefts.
Apart from medications, both diagnosed youngsters and their parents seem to view non-pharmacological treatments as less objectionable if mostly inefective. Nonetheless, both diagnosed youngsters and their parents tend to endorse the efectiveness of treatments that combined medication with non-pharmacological interventions.
Studies that directly compared the perceived efectiveness of medications in both children and parents reveal mixed fndings. Some studies suggest the diagnosed youngsters and their parents have a good agreement. Bowen et al. (1991) found a substantial overlap between parents and their diag- nosed children on the perceived benefts of medications as well as the perceived side efects. Similarly, Thorell and Dahlström (2009) found few diferences in medications’ perceived positive efects, but they also found that parents perceived signifcantly more negative efects of medications (but see McNeal et al. 2000 for an opposite pattern of fnd- ings). However, the perceived overlap of these studies should be interpreted cautiously as the presence of parents during children’s completion of the study may have afected these results. Corroborative evidence for a considerable overlap between parents and diagnosed children on the efectiveness of medication for ADHD can be gleaned from studies in which parental presence was not a concern as well (Flanna- gan et al. 2002; Moen et al. 2014). That said, this high level of agreement between parents and children is challenged by other research.
McElearney et al. (2005) found signifcantly more parents (n = 36/40) than children (n = 24/40) reporting positive change associated with medication usage. Likewise, other studies found that children reported fewer benefts (e.g., improved school functioning) and more costs (e.g., physi- cal side efects) than their parents (Harpur et al. 2008) and showed lower willingness to use medications or psychoso- cial treatments for ADHD than adults’ (including parents) in hypothetical vignettes (Bussing et al. 2012).
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Implications
Children/Adolescents
Studies suggest diagnosed youngsters’ perceptions of the efectiveness of medications a related to their adherence to medication treatment. Emilsson et al. (2017) found that adolescents’ overall perception of medication benefts was associated with a higher self-reported adherence to medica- tion treatment (see Bussing et al. 2012 for similar fndings).
Youngsters’ perception of adverse efects of medications may also be associated with their willingness to adhere to medications. Charach et al. (2014) reported that adolescents’ experience of adverse efects led them to adjust the dose or decide to discontinue treatment. Moline and Frankenberger (2001), however, found that adolescents’ experience of side efects was not correlated with their willingness to continue the use of their medication. That said, the latter study only evaluated physical side efects, whereas the former study included both physical and psychological ones (e.g., mood swings, feeling of personality change). In a similar vein, Bowen et al. (1991) found that children’s perception of the embarrassment about receiving medication and their per- ception of medication making them feel as if something was wrong with them signifcantly predicted their dislike of treatment.
As medications’ side efects seem to play a role in treat- ment adherence, only assessing the perceived efectiveness of medications, as proposed by the CSM, might not be suf- fcient in the context of the control/cure dimension. We endorse previous calls (e.g., Bussing et al. 2012) to add a measure of perceived adverse efects of medications that include both perceived negative physical and psychological efects. In fact, a measure that assessed the relative impact of beliefs about the benefts versus risks of medication in relation to adherence has been used already to measure the perceptions of medicines among adolescents with ADHD (Emilsson et al. 2017). The integration of this holistic assessment of medication may also explain parent–child discordance on the use of medication (Charach et al. 2014).
Parents
Existing fndings on the relationships between parents’ perceived efectiveness of treatments and their children adherence are mixed. Corkum et al. (1999) found that parents who had a higher opinion of medications were more likely to have children who used medication (see also Coletti et al. 2012; Johnston et al. 2005; Toomey et al. 2012); however, parents’ opinions of treatments were not related to adherence (Corkum et al. 1999). That said, other research found that perceived efectiveness of medication was a positive predictor of adherence (Hébert et al. 2013).
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A similar efect was observed with non-pharmacological treatment, in which a small sample study found that par- ents who dropped out from a parenting program were less convinced that the strategies proposed in the program were useful to help manage their children than parents who completed the program (Friars and Mellor 2007).
Relatedly, parents’ acceptability of treatments and its association with a subsequent pursuit of treatments also reveals mixed fndings. Bennett et al. (1996) found that acceptability of medication treatment and counseling did not predict parents’ pursuit of either treatment. Likewise, Johnston et al. (2010) found that mothers’ acceptability of the behavioral strategies was not correlated with their current use of such treatment for their children. However, Krain et al. (2005) found that parents’ acceptability of treatment predicted their pursuit of medication treatment.
Moreover, some fndings suggest parents’ perceptions of the negative efects of medications are associated with adherence to treatment. Parents’ concerns about medica- tion, including stigma and the side efects of medications, predicted reduced utilization of stimulants for their chil- dren with ADHD (Berger-Jenkins et al. 2012). Resorting to even more extreme measures, Charach et al. (2006) and Sikirica et al. (2015) found that parents’ perception of medications’ adverse physical (e.g., insomnia, stom- achache) and psychological (e.g., loss of personality) efects on their children led some to complete secession of medication. Toomey et al. (2012) also found similar efects but only for psychological side efects (e.g., mood changes, irritability, depression, personality changes), and not physical side efects (e.g., loss of appetite and sleep difculties).
Given the inconsistent fndings in parents’ beliefs of treatments and the pursuit of and adherence to treatments, we posit that a narrow assessment of parents’ perceived efectiveness of current treatment may not be sufcient in evaluating the holistic attitudes toward treatments available for ADHD. In addition to measuring the perceived adverse efects of medications, we suggest that assessing parents’ perceived efectiveness of an array of available treatments (e.g., medication, dietary treatment, behavioral therapy, and counseling) simultaneously might be useful in obtain- ing a complete parental view on the control/cure dimension and their implications. In addition, as some studies suggest mothers and fathers have difering views on treatments, an assessment of both of their views and an investigation of their agreement may also be helpful to understand how do spouses as a unit cope with their ofspring’s ADHD.
Summary
Overall, both the perceived effectiveness of medications of diagnosed youngsters and a perception of less adverse
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effects appear to be associated with their treatments’ willingness and adherence to medication. However, the findings in parents are more mixed. Some studies sug- gest their positive views of treatments and less perceived adverse effects are related to their usage of and adher- ence to treatments, but some studies fail to demonstrate such associations. We posit that more refined research is needed among both parents assessing the perceived physical and psychological adverse effects, in addition to their evaluation of an array of available treatments, may allow for better prediction of treatment utilization for their offspring.
Surprisingly, we could not identify any studies that examined potential outcomes of the divergent perceptions of treatments between diagnosed youngsters and parents, even though several studies had assessed such an agree- ment. Since some studies suggest diagnosed youngsters view the benefts and costs of medication use diferently than their parents, we believe it is important to understand the outcomes of this discrepant perception. One study has illustrated the relationship between parents’ perception of treatment and that of their diagnosed children. Hébert et al. (2013) found that parents’ perceived psychosocial benefts of medication were predicted by the child’s perceived psy- chosocial benefts of medication, suggesting that parents’ perception may be infuenced by youngsters’ perception. Moreover, even though the participation and engagement of both children/adolescents and their parents are under- stood to be vital for optimal adherence in the treatment of ADHD (Charach and Fernandez 2013; Gearing et al. 2011), it remains empirically unexplored as to whether sharing per- ceptions on treatment may increase adherence.
Personal Control
This sub-dimension refers to the appraisals of controllability of symptoms by the individuals (Moss-Morris et al. 2002). It is further divided into the perception of personal control
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of the individuals experiencing the disorder and parents/car- egivers’ perception of their ofspring’s control and their per- ception of their own control over their ofspring’s disorder (Barrowclough et al. 2001). Sixteen published studies inves- tigated this sub-dimension among diagnosed children/ado- lescents and/or their parents (see Table 6). Of these studies, only fve have investigated the outcomes of such perceptions.
Children/Adolescents (n = 9 Studies)
In general, fndings suggest diagnosed children and adoles- cents believe that they have some control over the ADHD symptoms. Emilsson et al. (2017) found that participants reported moderate levels of control over their ADHD (6.6 on a 10-point scale; 0 = absolutely no control, 10 = extreme amount of control). That said, difculties in controlling their behavior often surface in interviews with diagnosed young- sters (Honkasilta et al. 2016; Kendall et al. 2003; Mukherjee et al. 2016; Singh 2007). Such difculties may lead to the common fndings that diagnosed children experience less control over their behavior compared with undiagnosed youngsters. Wiener et al. (2012) compared the attributions of 86 children with ADHD and 66 typically developing chil- dren and found that diagnosed children viewed their self- identifed most problematic behavior as signifcantly more uncontrollable than the control group (see Kaidar et al. 2003, for similar fndings).
Treatment seems to afect the sense of personal control. Johnston and Leung (2001) found that diagnosed boys evalu- ated a child displaying ADHD symptoms (in a video clip) as having more control over the ADHD symptoms when the protagonist was shown to receive ADHD treatment (espe- cially involving a behavioral component) compared to no treatment. In a similar vein, diagnosed children/adolescents often indicate that medicine helps them gain control (Kend- all et al. 2003; Singh et al. 2010) or attribute their inability to control their behavior to a lack of medication (Singh 2007).
Table 6 Qualitative
and quantitative studies investigating the personal control dimension in diagnosed children/adolescents and their parents
Participants
Children/adolescents Parents
Both
Qualitative studies
Honkasilta et al. (2016) Kendall et al. (2003) Singh (2007)
Singh et al. (2010)
–
–
Quantitative studies
Kaidar et al. (2003) Emilsson et al. (2017) Wiener et al. (2012)
Freeman et al. (1997)
Gerdes and Hoza (2006) Harrison and Sofronof (2002) Huang et al. (2014)
Johnston and Patenaude (1994) Johnston and Freeman (1997) Johnston et al. (2000)
Johnston et al. (2010)
Johnston and Leung (2001)
Mixed method
Mukherjee et al. (2016) –
–
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Parents’ Perception of Ofspring’s Controllability (n = 9 Studies)
Mothers of children and adolescents with ADHD do not completely dismiss their ofspring controllability over their ADHD symptoms, giving intermediate evaluations of con- trol in response to such a probe (2.9 on a 6-point Likert scale; 1 = not at all controllable and 6 = completely control- lable: Harrison and Sofronof 2002). Similar fndings were found with other parents (Freeman et al. 1997; Johnston et al. 2010; Johnston and Patenaude 1994). Using varying methodologies, mothers of children with ADHD attributed inattentive–impulsive behavior to less controllable and less intentional factors than mothers of children without ADHD (Gerdes and Hoza 2006). However, Huang et al. (2014) did not fnd signifcant diferences in controllability assessment between mothers of diagnosed versus non-diagnosed chil- dren. These inconsistent fndings may arise from methodo- logical diferences and the elevated levels of anxiety among the mothers of diagnosed children in Huang et al.’s study— an element that was not controlled for in the analyses.
The efect of taking medication on parental perception of control by the diagnosed youngsters is inconclusive at this time, although there are indications that it exists. John- ston and Leung (2001) evaluated parents’ attributions of controllability of a child displaying ADHD symptoms that were described as receiving either medication, behavioral treatment, a combination of the two, or was not receiving treatment. Results showed that treatments that involved medication resulted in attributions of more children’s con- trol over their ADHD symptoms, compared with the other two conditions. However, another study found that mothers’ ratings of children’s ADHD symptoms as more controllable as a function of medication were only marginally signifcant (Johnston et al. 2000).
Finally, one study suggests that the age of children/ado- lescents may infuence parents’ perception of the youngsters’ control. Johnston and Patenaude (1994) found a signifcant correlation between parents’ perceived children’s control and child’s age, suggesting that parents may attribute more controllability as their ofspring age.
Parents’ Perception of Their Own Controllability (n = 1 Study)
Only one study examined parents’ perception of their own control over their ofspring’s ADHD. Harrison and Sofronof (2002) found that mothers perceived they had moderate con- trol over children’s problem behavior (an average rating of 3.2 on a 6-point Likert scale: 1 = not at all controllable and 6 = completely controllable).
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Summary
Overall, children and adolescents with ADHD appear to experience having little to moderate control over their ADHD symptoms. Parents’ perception seems similar to their diagnosed ofspring. Nonetheless, both of them tend to per- ceive more controllability over the ADHD symptoms when the youngsters are taking medications. Moreover, parents seem to perceive themselves having moderate control over their ofspring’s ADHD behavior (but this fnding needs to be replicated).
Implications
Children/Adolescents
We could identify only two studies that examined the impli- cations of perceived personal control among diagnosed youngsters. Mukherjee et al. (2016) found that diagnosed children who felt a lack of control over their ADHD had lower self-esteem compared to those who felt more con- trol. Emilsson et al. (2017) evaluated adolescents who were on ADHD medication for at least 6 months, and the results showed that their perception of personal control did not have signifcant correlations with the level of adherence to medi- cation treatment. However, it should be noted that this sam- ple of adolescents already perceived moderate levels of con- trol over the ADHD symptoms. As discussed above, other studies found youngsters to experience little personal con- trol. Thus, there is a need for additional research, especially among children who are not currently taking medication, to investigate the potential outcomes of perceived control.
Research among individuals with mental illnesses sug- gests that experiencing limited personal control over the symptoms is associated with distress, hopelessness, poorer functioning (Freeman and Garety 1999), hopelessness (Hofmann et al. 2000), poorer functioning (Broadbent et al. 2008), and use of less active coping strategies (Romme et al. 1992). Conversely, the belief in the personal ability to con- trol the illness is associated with better coping and function- ing, and a more positive attitude to medication (Broadbent et al. 2008). Extrapolating from these fndings, we speculate that the children and adolescents with ADHD who perceive they have little control over the ADHD symptoms will expe- rience worse emotional well-being and employ less active coping compared to those who perceive more personal con- trol. That being said, future research is needed to examine this prediction.
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Parents’ Perception of Ofspring’s Controllability
Several studies suggest that parents’ perceptions of diag- nosed youngsters’ control are associated with their reaction to the ofspring’s behavior and acceptability of treatment. Johnston and Patenaude (1994) found that parental evalua- tion of their child’s behavior as controllable was associated with more negative reactions of parents. However, Johnston and Leung (2001) failed to fnd this association. Plausi- ble explanations for these mixed fndings may be related to statistical power (Johnston and Patenaude’s sample size was more than double that of Johnston and Leung’s) and/ or methodological improvement in Johnston and Patenaude (which used 3 items to evaluate parents’ reactions as com- pared with a single item used by Johnston and Leung). Regarding treatment acceptability, Johnston et al. (2010) found that parents who viewed their children’s ADHD symp- toms as within the child’s control were more likely to view behavioral treatment as acceptable if they perceived ADHD as pervasive/enduring. This fnding suggests parents’ per- ception of child’s control might not infuence their beliefs on treatments on its own, but it might do so in combination with the timeline dimension (i.e., pervasive/enduring).
Parents’ Perception of Their Own Control
Research suggests that parents’ perception of their own control over their ofspring’s behavior is related to their experience of parenting stress and depression (Harrison and Sofronof 2002). Moreover, we speculate that parents’ perception of their own control over their ofspring’s ADHD may infuence the way they cope with the disorder. In a study conducted with parents of children with ASD, Al Anbar et al. (2010) found that parents who perceived a higher sense of control were less likely to use nutritional or phar- maceutical treatments for their child’s ASD, and they were more likely to talk with other parents of children with ASD and with psychologists and to seek information in books. Extrapolating from this study, one can hypothesize that par- ents who perceive that they have high personal control are less likely to use medication treatment for their ofspring’s ADHD and more likely to participate in parent training pro- grams; yet, these predictions await future research.
Summary
Limited research suggests that diagnosed youngsters’ per- ceived personal control is not related their treatment adher- ence. Based on related fndings, we postulate that youngsters who perceive they have little personal control may use a less active coping strategy and experience a worse emotional well-being than those who perceive a higher sense of con- trol, but these predictions require future investigations. In
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parents, perceptions of diagnosed ofspring’s control may be associated with their own reaction to their ofspring’s behav- ior, but additional research is needed to explicate existing inconsistencies in the literature. Moreover, parents’ percep- tion of their own control over their ofspring’s ADHD may also afect their treatment choice in combination with other illness representations.
Finally, we believe future research is needed to examine the agreement on the perceived personal control between the diagnosed youngsters their parents. More importantly, little is known about the outcomes of divergent perceptions on the perceived controllability in relation to the treatment adherence, parent–child interactions, coping, or emotional well-being of both.
Emotional Representations
In CSM, the dimension of emotional representations refers to the emotional reactions in response to the illness (Leventhal et al. 1980, 1984). Eighteen published studies examined this dimension in diagnosed youngsters and their parents (Table 7), but only one of them has examined the outcome of such perceptions.
Children/Adolescents (n = 6 Studies)
Qualitative research suggests that children and adolescents with ADHD have a range of emotional responses to their disorder. Hallberg et al. (2010) and Kendall et al. (2003) reported that some of the participants felt ashamed of hav- ing ADHD, as they were teased by other children at school about the medication they took and the disorder they were diagnosed with. In Kendall et al. interview, many children and adolescents also felt sad and frustrated about not func- tioning as good as their peers at school, being misunderstood and rejected by others, and not feeling welcomed by their extended families. Likewise, Sikirica et al. (2015) found that diagnosed children and adolescents felt embarrassed and shameful about being slower learners than their peers and being perceived by their peers as “disabled” (see also Cheung et al. 2015).
However, other interview fndings suggest some diag- nosed youngsters also experienced some positive emotions toward ADHD. In an interview with 23 diagnosed young- sters, (Singh 2007) found that some diagnosed children/ adolescents felt excited about the “internal jumpiness” or “craziness” (p. 173) in having ADHD and enjoyed the bad behavior.
In light of these qualitative fndings, it is not surprising that youngsters acknowledge the emotional efects of their disorder quantitatively. Emilsson et al. (2017) found that the diagnosed adolescents indicated that their emotions were afected to a moderate degree by ADHD (mean score of 5.0
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Table 7 Qualitative
and quantitative studies investigating the emotional representations dimension in diagnosed children/adolescents and their parents
Participants
Children/adolescents Parents
Both
Qualitative studies
Cheung et al. (2015) Hallberg et al. (2010) Kendall et al. (2003) Singh (2007)
Charach et al. (2006)
Coletti et al. (2012)
Dennis et al. (2008)
Ghosh et al. (2016)
Harborne et al. (2004)
Ho et al. (2011)
Kildea et al. (2011)
McIntyre and Hennessy (2012) Moen et al. (2011)
Perry et al. (2005)
Peters and Jackson (2009) Wilcox et al. (2007)
Sikirica et al. (2015)
Quantitative studies
Emilsson et al. (2017) Lambek et al. (2017)
–
Mixed meth- ods
–
–
–
out of a 10-point scale: 0 = not at all afected emotionally, 10 = extremely afected emotionally).
Parents (n = 14 Studies)
A recent cross-sectional study found that parents of chil- dren with ADHD reported a stronger emotional response to behaviors that can arise from ADHD than parents of typi- cally developing children, and in particular, parents had the strongest emotional response toward the inattention symp- toms (Lambek et al. 2017). Qualitative research also indi- cates that parents of ofspring with ADHD have a wide range of emotional responses toward their ofspring’s ADHD. By and large, interview fndings report that parents feel frus- trated, stressed, depressed, and helpless when they have to meet the competing demands and needs of their diagnosed ofspring and are worried about their ofspring’s future (e.g., Ho et al. 2011; Moen et al. 2011; Peters and Jackson 2009; Sikirica et al. 2015; Wilcox et al. 2007). Moreover, some parents feel guilty about the diagnosis, as they believe it is their genetic and/or behavioral fault for contributing to their ofspring’s disorder (Charach et al. 2006; Coletti et al. 2012; Peters and Jackson 2009). In addition, some parents described feeling angry and disappointed with their diag- nosed ofspring’s disruptive behavior (Ho et al. 2011; McIn- tyre and Hennessy 2012), embarrassed about their children’s behavior (Dennis et al. 2008; Wilcox et al. 2007), and lonely and isolated because of people’s misunderstanding of their children’s behavior (Ho et al. 2011; Moen et al. 2011, 2014).
However, fndings also suggest parents of diagnosed of- spring may experience some positive emotional responses toward ADHD. A number of interviews found that some par- ents felt relieved when their ofspring received the ADHD
diagnosis, as it removed their self-blame and guilt about being bad parents and the diagnosis directed them to seek appropriate help for their child (Dennis et al. 2008; Ghosh et al. 2016; Harborne et al. 2004; Kildea et al. 2011; Perry et al. 2005).
Summary
Studies seem to suggest both diagnosed children and ado- lescents and their parents experience various emotional responses to ADHD. Diagnosed youngsters mostly experi- ence negative afect—feeling ashamed, frustrated, sad, and embarrassed about having ADHD; however, some seem to feel excited and joyful about experiencing the disorder. In parents, studies suggest an even larger range of predomi- nantly negative afect—feeling of frustration, stress, depres- sion, helplessness, guilt, anger, disappointment, embar- rassment, loneliness, and isolation; yet, some of them felt relieved because of the diagnosis.
Implications
Children/Adolescents
The only study that examined the emotional representations of diagnosed adolescents in relation to treatment adherence found there were no signifcant correlations between them (Emilsson et al. 2017). However, we postulate that young- sters’ emotional responses may not infuence their coping on their own; rather, they may interact with other dimensions of illness representations such that certain patterns of percep- tions of ADHD would lead to diferent coping strategies. Previous studies have demonstrated the negative impact of
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emotional representations on the other dimensions of illness; for instance, it was found to be negatively correlated with control/cure and coherence dimension and to be positively correlated with dimensions of timeline and consequence in people with diferent physical illnesses (Moss-Morris et al. 2002). Extrapolating from this pattern of fndings, we pre- dict that youngsters who perceive themselves as having little control over ADHD, poor understanding of ADHD, expect a long course, and perceive severe consequences of the dis- order may have more negative and prominent emotional responses to ADHD. This may lead to the use of suboptimal coping strategies than those who perceive more personal control, a better understanding of ADHD, expect shorter course and perceive minimal consequences of the disorder. That being said, actual relationships between these variables await future empirical investigations.
Parents
We could not identify published studies that examined the implications of parents’ emotional representations of ADHD. Nonetheless, a study conducted with parents of children with ASD found that more negative emotional representations of parents were associated with less use of educative methods for their diagnosed children (Al Anbar et al. 2010). These fndings suggest that parents’ emotional responses to the disorder may infuence their treatment use, which remains unexplored in the context of ADHD.
Summary
The emotional representations of diagnosed youngsters have not been shown to associate with their treatment adherence in the single study that addressed this question. However, we postulate it may infuence the coping strategies of the individuals in combination with other constructs of illness perception. In parents, their emotional responses of their ofspring’s ADHD may infuence their treatment use for the disorder. However, these predictions need to be tested by future research.
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Table 8 Qualitative and quantitative studies investigating the coherence dimension in diagnosed children/adolescents and their parents
Participants
Children/adolescents Parents
Both
Qualitative studies
Avisar and Lavie-Ajayi (2014)
Davis et al. (2012)
Ho et al. (2011)
Kildea et al. (2011)
Lin et al. (2009)
McIntyre and Hennessy (2012) Perry et al. (2005)
–
Quantitative studies Mixed meth-
ods
Emilsson et al. (2017) – Ghanizadeh (2007) –
Tzang et al. (2009)
– –
Coherence
ADHD is a complex, multifaceted disorder. The coherence dimension of CSM refers to the experience of having a com- prehensive understanding of the illness (Leventhal et al. 1980, 1984). This construct has received the least research attention among individuals with ADHD, as there are only 10 published studies that examined this construct and only two of them had reported the related impacts of this dimen- sion (see Table 8).
Children/Adolescents (n = 2 Studies)
Studies suggest that children and adolescents with ADHD have a substantial range of their experience of understand- ing of the disorder. Avisar and Lavie-Ajayi (2014) qualita- tive study found that most of the interviewed adolescents perceived they had little understanding of ADHD and indi- cated they received little explanations about the diagnosis and medical treatments. Addressing this perception quantita- tively, however, Emilsson et al. (2017) found what seems to be a moderate–good understanding among adolescents with ADHD (mean score of 6.7 on a 10-point scale: 0 = don’t understand at all, 10 = understand very clearly).
Parents (n = 8 Studies)
Findings suggest parents perceive having insufcient under- standing of ADHD. Ghanizadeh (2007) found that many of the parents (70%) of children with ADHD self-rated their information about ADHD as very defcient. Across a number of interviews, many parents of diagnosed ofspring also indi- cated they lacked understanding of ADHD and knowledge about how they should manage their children’s disorder (Ho et al. 2011; Kildea et al. 2011; Lin et al. 2009; McIntyre and Hennessy 2012) or reported they received limited informa- tion about what to anticipate in terms of ADHD and treat- ment (Davis et al. 2012). In addition, some parents expressed a desire for more information about ADHD that could help aid them in the decision-making process (Davis et al. 2012;
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Perry et al. 2005). Despite these qualitative fndings, when parents were asked to indicate whether they understood the disorder on a dichotomous item “Do you know what ADHD is?”, only a small minority of them indicated they did not (Tzang et al. 2009).
Summary
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ADHD may infuence their ofspring’s understanding of the disorder as well as their emotional well-being.
Al Anbar et al. (2010) found that parents of children with ASD indicated that a higher sense of coherence was related to greater likelihood of attending conventions to seek infor- mation of ASD. This fnding suggests the self-perceived understanding of ADHD among parents of diagnosed of- spring may infuence the way they cope with the disorder in terms of the use of diferent information sources. That said, this relationship remains unexplored in the context of ADHD.
Summary
The poor sense of coherence of ADHD in diagnosed young- sters seems to be associated with reduced adherence to medi- cation. We speculate that it may also infuence their emo- tional well-being, but future research is needed to shed light on this relationship. In parents, their sense of incoherence may have an adverse impact on their ofspring’s coherence of ADHD and potentially undermine their emotional well- being. Moreover, we postulate their coherence may infuence their coping of their ofspring’s ADHD but the predictions await future research.
Discussion
We have endeavored to explore the application of CSM (Leventhal et al. 1980, 1984) for ADHD, and we system- atically reviewed the diferent dimensions of the perception of ADHD among diagnosed children/adolescents and their parents as well as their implications. We suggest that the ill- ness representation framework may play an important role in understanding their coping behavior, treatment adherence, and emotional well-being.
Taken together, available fndings seem to support the existence of the multiple facets of illness perception in both diagnosed youngsters and parents, which include identity, causes, timeline, consequences, control/cure, emotional rep- resentations, and coherence. At this time, we cannot make conclusive statements regarding perceptions of ADHD and the related outcomes because of the limited published research and domination of qualitative studies, particularly in diagnosed youngsters. Nonetheless, the current review assembles the relevant research, and in doing so enables the identifcation of both consistent fndings regarding per- ceptions of ADHD among diagnosed youngsters and their parents as well as areas of needed research. It also facilitates making informed, testable predictions about the implications of such perceptions.
Overall, the existing findings on the perception of ADHD among diagnosed children and adolescents and
The limited research on the self-perceived understanding of ADHD among diagnosed youngsters and their parents provides heterogeneous fndings. It seems like qualitative research tends to fnd that both reported a limited under- standing of the disorder, whereas quantitative research seems to indicate that they report at least basic level of understand- ing. Future research is needed to identify the mechanisms that give rise to these mixed fndings.
Implications
Children/Adolescents
The only study that examined the outcome of the sense of coherence among diagnosed adolescents found that it was related with unintentional non-adherence of medication, that is, adolescents who perceived having little understanding of ADHD were more likely to show reduced adherence (Emils- son et al. 2017). This fnding demonstrates the importance of the sense of coherence among the diagnosed youngsters in relation to the adherence of medication treatment, which has received scarce research attention in previous studies.
Apart from the treatment-related outcome, research among individuals with mental illnesses found that coher- ence may be related to emotional well-being, although the fndings are mixed. Some fndings suggest a less coherent understanding of their mental health problems is associated with more depressed mood (Lobban et al. 2004, 2005); how- ever, other studies have found a good sense of coherence is associated with a negative afect (Jackson et al. 1998; McGorry and McConville 1999). Nonetheless, these fnd- ings suggest the sense of coherence of ADHD may have a certain infuence on diagnosed youngsters’ emotional well- being (as well as the existence of moderating variables), which has yet to be investigated by research.
Parents
One qualitative study conducted with parents reported that parents’ struggles in understanding the nature of ADHD had an adverse impact on their ability to help their diagnosed children to make sense of their difculties, which was related to the incoherent feelings in their children (Kildea et al. 2011). This fnding suggests parents’ sense of coherence of
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parents identify varying levels of views on ADHD in all the dimensions proposed by CSM. In youngsters with ADHD, fndings suggest most identify their ADHD symp- toms to some degree; yet, a few reject the diagnosis alto- gether. Most view ADHD as an illness that has a biological cause (a cause that seems to be more endorsed as they age), but some perceive the disorder as an element of their personality or a thinking mode. Diagnosed youngsters vary substantially on the duration they expect the disorder to afect them and the severity of its consequences. Whereas most diagnosed children and adolescents think medica- tions are helpful and express a certain degree of satisfac- tion with them, some of them consider it inefective or perceive the adverse efects of the medication to outweigh the benefts. Moreover, youngsters generally view non- pharmacological treatments as less adverse, even though they also see them as mostly inefective (probably as such treatments do not introduce side efects). As for personal control, evidence suggests that they perceive having little to moderate control over their ADHD symptoms. How- ever, they generally perceive having more control when receiving treatments. ADHD, a disorder that most seem to struggle to understand, seems to trigger mostly an array of negative emotional responses from the diagnosed young.
Parents seem to exhibit mostly similar heterogeneous patterns as the ones reported by diagnosed youngsters. The reviewed fndings suggest most parents identify the ADHD symptoms of their ofspring and many attribute ADHD to biological causes (especially as time since diagnosis passes), although some are reluctant to accept the biomedical explan- atory model, attributing their child’s difculties to psycho- logical or environmental causes. Although the majority of parents report that they understand the disorder in response to dichotomous probes, most seem also to indicate confusion and desire for further knowledge when probed more deeply in qualitative interviews. Parents seem to expect a varying duration of ADHD, ranging from a temporary afiction to a lifelong chronic one. They generally perceive a range of adverse impairment and negative impacts of ADHD on their children/adolescents and on themselves; yet, a small portion of them perceive positive consequences of ADHD. Regard- ing treatment, most parents think medications are efective and perceive the benefts to outweigh the adverse efects; yet, some perceive the costs to outweigh the benefts. Similar to the diagnosed youngsters, parents view behavioral treat- ments and alternative treatments as less adverse, but also less efective. Parents evaluate their diagnosed ofspring as having little to moderate personal control over their symp- toms and tend to view more personal control of the young- sters when they are on medications. They seem to perceive themselves as having a certain level of control over their ofspring’s problem behavior as well and report a wide range of negative emotional responses to their ofspring’s ADHD.
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Relatively little is known about the outcomes of the per- ceptions of ADHD among diagnosed children/adolescents and their parents. In diagnosed youngsters, limited research indicates that an anticipation of a long duration of ADHD and a perception of minimal consequences of ADHD were correlated with the intentional non-adherence to medication treatment, while a perception of the incoherence of ADHD was related to unintentional non-adherence of medication (Emilsson et al. 2017). A belief in biological causes of ADHD was related to a perception of limited personal con- trol of the disorder (Honkasilta et al. 2016; Mukherjee et al. 2016). A higher perceived efectiveness of treatment, less expected side efects, and feeling of more knowledgeable about a treatment were associated with increased willingness to use treatment (Bussing et al. 2012), and their perception that the benefts of medication outweigh the adverse efects predicted better adherence to medication (Emilsson et al. 2017).
Extrapolating from fndings on other mental illnesses and conditions, we ofered a series of hypotheses when no ADHD-related research was available. We postulated that diagnosed youngsters’ identifcation of their ADHD symp- toms may be related to poor emotional well-being but more efortful coping of the disorder, and a belief in biological causes of the disorder may be associated with less active coping and poorer adherence to medication. Moreover, we speculated that a longer perceived course of ADHD, more perceived adverse consequences, and limited personal con- trol of ADHD may undermine their emotional well-being. We also hypothesized that increased negative emotional responses are related to poorer perceived control and under- standing, longer perceived duration and more severe per- ceived consequences of ADHD. That said, these predictions require future research.
In parents, limited evidence suggests that parents’ per- ceptions of inattention are associated with treatment pur- suit for their ofspring (Bussing et al. 2011) and their per- ceived treatment responses of their child (Park et al. 2013); their perceived severity of ADHD symptoms is related to increased parenting stress (Graziano et al. 2011; Mash and Johnston 1983) and poorer quality of life (Xiang et al. 2009). Findings also suggest that parents’ endorsement of biological causes of ADHD is related to medication usage (Yeh et al. 2014), willingness to accept medication treat- ment (Lin and Chung 2002), and initiation of medication (Brinkman et al. 2009) to treat their ofspring’s ADHD. However, their beliefs in psychological causes do not seem to predict increased use of child/family psychotherapy for their diagnosed children (Johnston et al. 2005). Their belief in genetic causes of ADHD seems to provide them some relief from feelings of blame (Moen et al. 2011). In addition, parents’ perception of child’s ADHD-related impairment predicts increased acceptability and perceived
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efectiveness of combined treatments (Jiang et al. 2014) and initiation of medication (Brinkman et al. 2009). How- ever, their faith in the efectiveness of treatments do not seem to have clear relationships with their use and adher- ence to those treatments for their ofspring (e.g., see Ben- nett et al. 1996; Corkum et al. 1999; but also see, Hébert et al. 2013; Johnston et al. 2005; Krain et al. 2005). Par- ents’ perceived personal control over their child’s ADHD behavioral symptoms seems to be associated with more experience of parenting stress and depression (Harrison and Sofronof 2002), and their sense of incoherence of ADHD seems to have an adverse impact on their children’s sense of coherence of the disorder and emotional well- being (Kildea et al. 2011).
Utilizing other theories and extrapolating from find- ings on psychopathologies and neurological conditions, we endeavored to make novel predictions about ADHD. We hypothesized that parents’ perception of an unpredictable timeline of ADHD predicts medication use and adherence; a more severe perceived consequences of ADHD for their ofspring negatively impact their relationships with their children; and an increased perceived personal control over their ofspring’s ADHD predicts reduced use of medica- tion among other predictions. Future research is needed to explore these hypotheses.
This review revealed substantial gaps in our understand- ing of ADHD’s illness representations and their impact. One of the most neglected areas is parent–child dyad’s represen- tation overlap. The relatively little research that compares the perceptions of ADHD in the family unit itself and dis- crepancies among members of the unit (including the diag- nosed child, both parents, and to a lesser extent, siblings) is an area rife for new discoveries. Among the seven illness representations, only for two dimensions, identity and treat- ment control, there are fndings that compared the percep- tions’ agreement between children and their parents. These fndings show that discrepancies exist. Research converges to show that more often children perceive fewer symptoms than their parents (Bussing et al. 2011; Hogue et al. 2014; Volpe et al. 1999; Wiener et al. 2012). However, the fnd- ings regarding the parent–child’s perceived efectiveness and benefts of medications are mixed. Some found they have substantial agreement (e.g., Bowen et al. 1991; Efron et al. 1998; Thorell and Dahlström 2009), whereas others found that parents perceive more benefts than their chil- dren (McElearney et al. 2005; McNeal et al. 2000). These mixed fndings may indicate that there is a moderator worthy of exploring to explain these inconsistent fndings; alterna- tively, they may be due to methodological artefacts, such as the use of diferent measures and/or the presence of parents in children’s participation. Future research is needed to elu- cidate these inconsistent fndings and evaluates the overlap of such perceptions on other dimensions as well.
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Potential implications of agreement/discrepancies of such perceptions may present an even more useful area of future research. Mental illnesses’ research has found that divergent perceptions between patients and caregivers are related to greater anxiety, depression, and lower self-esteem in the patients (Kuipers et al. 2007) and caregivers’ negative reac- tions to patients (Lobban et al. 2006), all of which present additional challenges for a family unit already struggling with other disorder-related challenges. Such discrepancies may be more easily addressed using counseling than other challenges introduced by ADHD, and as such may ofer a good target for interventions.
Finally, this review also demonstrates the importance of attaining a comprehensive understanding of illness represen- tations among diagnosed youngsters and parents to facilitate adherence to medications. Perceptions of treatment efec- tiveness have received the most research attention among all the illness representations. Other illness beliefs such as timeline, consequence, and coherence are also related to their adherence to medication (Emilsson et al. 2017), yet have received much less research attention than the treat- ment control dimension. Isolating a specifc dimension of illness perceptions may reduce the ability to understand coping with the disorder and adherence to treatment as the other dimensions seem to also afect treatment as illustrated throughout this review. Future research that utilizes that Ill- ness Perception Questionnaire-Revised (Moss-Morris et al. 2002) or Brief-Illness Perception Questionnaire (B-IPQ; Broadbent et al. 2006) to assess representations of ADHD can aid in achieving this aim. Some adaptations in these questionnaires to better refect the context of ADHD (e.g., the addition of perception of adverse efects of medications in the treatment control dimension) may further facilitate their research utility.
This review has to be interpreted in the context of a num- ber of limitations of the relevant research corpus. We spe- cifcally highlight the limitations related to the amount of research available on all the dimensions, the limitation of the existing methodologies, the unexplored attention to potential moderators, and sampling issues and representativeness.
Existing research on beliefs about and perceptions of ADHD among diagnosed children and adolescents have not addressed all dimensions to an equal degree. For example, minimal research directly examined children and adoles- cents’ perceptions of timeline, consequences, emotional responses to, and coherence of the disorder. These limited findings may not capture the richness of illness beliefs among the youngsters with ADHD in the population.
A few methodological limitations also plague the reviewed research studies. A number of the potential impli- cations of youngsters’ perception of ADHD are based on one cross-sectional study (Emilsson et al. 2017); thus, the generalizability of the outcomes may be limited by the
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characteristics of that sample (adolescents who had been on medication for an average of 4 years and self-reported high adherence to the medication) and its specifc methodology. Another potential limitation of this review is its reliance on a large proportion of qualitative studies with small sample sizes and other known limitations of the approach (Elliott et al. 1999). This review also consists of a large number of cross-sectional studies, which may hinder the ability to understand the dynamic nature of illness perceptions among youngsters and their parents. Therefore, longitudinal studies that are capable of characterizing trajectories of such beliefs, and related change processes, are warranted.
The current review did not discuss potential mediators and moderators of perceptions of ADHD among diagnosed youngsters and parents, such as the presence of comorbid- ity in youngsters, existence of parental ADHD and mental illnesses, medication status, duration of ADHD diagnosis, and gender diferences in youngsters’ perceptions because of limited published research on such important elements. Fur- ther, potential outcomes of interactions between the difer- ent ADHD illness representations were also very limited in previous research, and hence in this review. Future research that examines these factors can potentially provide a more comprehensive understanding of perceptions of ADHD and their implications.
The ability to generalize the existing findings to the populations of youngsters diagnosed with ADHD and their parents may also be limited. Most of the participants in the studies reviewed were currently taking medication; hence, the fndings might overrepresent the views of those who have a relatively high acceptance of a medical perspective on ADHD and its treatment. On a related note, a considerable volume of the research reviewed was conducted in the USA, UK, and Canada. As such, the role of cultural diferences in illness representations has not been adequately addressed. The examination of illness perceptions in community sam- ples with samples from diverse ethnic and geographical background will ensure greater generalizability.
The investigation of illness representations among chil- dren/adolescents with ADHD and their parents may prove useful in facilitating adaptive coping behavior, improve compliance with treatments among diagnosed youth, and enhance their psychological well-being. Research on physi- cal illnesses has demonstrated that illness perceptions are amenable to manipulation, and that altered illness per- ceptions have resulted in reduced number of symptoms and faster recovery (Petrie et al. 2002). Moreover, some researchers have reported that assessing and discussing their illness beliefs may provide individuals with an opportunity to identify and alter maladaptive beliefs to improve function- ing (Broadbent et al. 2008) and, this process is therapeutic in allowing patients to tell their story, consider new issues, and clarify aspects of their illness (Pollack and Aponte
Clin Child Fam Psychol Rev (2018) 21:57–93
2001). In addition, targeting illness perceptions with both diagnosed individuals and their parents/caregivers warrants further investigation as facilitating greater agreement may be a potential strategy for improving treatment outcomes as well as family functioning (Kuipers et al. 2007). As such, we believe the perceptions of ADHD among diagnosed children/adolescents and parents deserve more clinical and research attention that ofers a promise to introduce transla- tional aspects with clear amelioration benefts.
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