Utilizing the Common-Sense model of illness representations to explore children’s perceptions of, and coping with ADHD

Abstract

Background

Attention Deficit Hyperactivity Disorder (ADHD) among children is associated with difficulties in everyday functioning. According to the Common-Sense Model of Illness Representations (CSM), individuals’ beliefs about their illness condition guide their attempts to cope with it. The model suggests five dimensions of illness representations: beliefs regarding the identity of the symptoms, its duration, causes, consequences, and one’s ability to achieve control over it.

Aims

The study aimed to explore the validity of the CSM-dimensions of illness representations for children with ADHD, while also exploring the possible relationships between types of beliefs and coping strategies.

Method

A deductive qualitative content analysis was used for analyzing data constructed from semi-structured individual interviews with 14 children diagnosed with ADHD.

Results

The results have shown that there is a variation in children’s beliefs regarding their ADHD. Those beliefs are, for the most part, captured by the five CSM-dimensions. An additional dimension of ‘Uniqueness’ is suggested, which reflects children’s beliefs on the way ADHD distinguishes them from other children. Patterns regarding types of beliefs and types of coping strategies were identified.

Conclusions

The CSM is a useful theoretical model to understand children’s beliefs of, and coping with their ADHD.

Keywords:

• ADHD
• Children
• Common-Sense Model
• Coping
• Illness representations
• Qualitative study

Introduction

Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder characterized by hyperactivity, substantial difficulties to regulate attention and an impaired ability to control impulses (American Psychiatric Association, 2013).

The implications of ADHD for everyday life functioning of children who live with the disorder have been demonstrated in various contexts. Academically, children with ADHD have difficulties to complete school assignments and organize their work, as well as to follow classroom-rules (DuPaul, Morgan, Hillemeier, Maczuga, & Farkas, 2016). Within the family, children with ADHD experience more arguments and negative communication with their parents (Edwards, Barkley, Laneri, Fletcher, & Metevia, 2001), along with impaired relationships with siblings (Mikami & Pfiffner, 2008). In their relationships with peers, they experience more conflicts (Gardner & Gerdes, 2015) and are more vulnerable to being an object of bullying or being a perpetrator of bullying (Zic Ralic, Cvitkovic, & Sifner, 2016).

In addition, children with ADHD are more prone to develop a mental health disorder such as disruptive behavior disorders, depression and anxiety disorders (Mitchison & Njardvik, 2019; Pliszka, 2003) as well as to perceive their well-being and quality of life as low (Danckaerts et al., 2010; Peasgood et al., 2016).

According to the cognitive-perceptual approach for illness, in order to understand the psychosocial impact of a medical condition, we have to understand the individual’s interpretations, beliefs and the personal meaning related to the condition the individual lives with (Hagger & Orbell, 2003). The Common-Sense Model of Illness Representations (CSM) is a cognitive-perceptual theoretical model that address the relationship between illness-cognitions, coping and health-outcomes (Leventhal, Meyer, & Nerenz, 1980; Hagger & Orbell, 2003). According to the theory, illness-representations guide individuals’ attempts to cope with their health condition, which, in turn, would affect health outcomes such as functioning-level as well as psychological distress and well-being (Hagger & Orbell, 2003; Leventhal et al., 1980).

The Common-Sense Model suggests that there are five dimensions of cognitive illness-representations: (1) identity, which includes beliefs about how the condition is identified, what experiences are expressions of the illness and what experiences are not, as well as how those experiences are labelled; (2) timeline, which are beliefs related to the duration of the illness, when it began and when it will end; (3) consequences, or beliefs people have about the impact that the health condition has on their life; (4) cause or underlying mechanism is a category of beliefs related to the perceived reasons for the development of the illness and the mechanism behind the manifestation of the symptoms; and (5) control, which includes the individual’s beliefs of how much he or she has the ability to manage or control the illness and its symptoms as well as representations of how control should be achieved (Hagger & Orbell, 2003; Leventhal, Phillips, & Burns, 2016).

An important aspect of the model to consider here is that each illness condition has a characteristic set of components that constitute the illness representations with the unique features of the particular condition (Hagger & Orbell, 2003; Leventhal et al., 2016).

The utility of the CSM for understanding the psychosocial implications of physical illness has been demonstrated in different types of conditions (Hagger & Orbell, 2003) such as asthma (Achstetter, Schultz, Faller, & Schuler, 2019), cancer (Postolica, Iorga, Savin, Azoicai, & Enea, 2018), and brain injuries (Snell, Hay-Smith, Surgenor, & Siegert, 2013). In addition, there has been a growing interest in using the CSM in the context of mental illness (Antoniades, Mazza, & Brijnath, 2017; Scerri, Saliba, Saliba, Scerri, & Camilleri, 2019).

Even though developmental disabilities are not being categorized as illnesses, some researchers have suggested that CSM can be applied to understand the psychosocial implications of such disabilities (Mire, Brewton, Raff, McKee, & Tolar, 2018). In the field of ADHD, the model was used to investigate the relationships between individuals’ representations and adherence to medication (Emilsson, Gustafsson, Öhnström, & Marteinsdottir, 2017; Kosse, Bouvy, Philbert, de Vries, & Koster, 2017). Those studies have shown that adherence to medical treatment is associated with beliefs regarding the consequences of ADHD for their lives (Emilsson et al., 2017) and the ability to achieve control over the symptoms by taking medications (Kosse et al., 2017).

Wong and colleagues (Wong, Hawes, Clarke, Kohn, & Dar-Nimrod, 2018) have suggested that the model may help us to understand psychosocial outcomes of ADHD in children. In a systematic review of qualitative and quantitative studies on children’s perceptions of their ADHD, the researchers categorized the results of those studies according to the CSM dimensions in order to explore characteristics and possible implications of those perceptions. The researchers have found heterogeneous views regarding children’s beliefs on what the symptoms of ADHD are, the duration of the disorder, the causes for it, as well as their perceived control and the consequences it has for their lives. However, even if the researchers concluded that perceptions of ADHD among children have been captured overall by the dimensions suggested by the CSM, the limited number of studies may not capture the richness of those representations and their implications (Wong et al., 2018).

Yet, while researchers have highlighted the potential of the model to improve our understanding of individuals’ management of their illness conditions it has also been suggested that there may be differences between representations of physical illness and mental conditions and that the model may fail to capture domains of representations that are central for mental illness (Petrie, Broadbent, & Kydd, 2008).

Thus, the aims of this study were: (1) to explore the manifestation of the CSM-dimensions of illness representations among children with ADHD; (2) to explore if there are illness representations of ADHD among children which are not captured by the model; and (3) to search for patterns of relationships between types of representations and types of strategies to cope with the symptoms.

The results of such analysis may be particularly useful in developing illness representations questionnaires modified for children with ADHD and for developing hypotheses on the relationships between children’s beliefs and their coping with their condition. In addition, identifying children’s’ representations of their ADHD as well as children’s coping strategies may help health care professions to better understand the child’s own perspective on his/her condition.

Methods

Study design

This is a qualitative study, employing in-depth and semi-structured individual interviews with children with ADHD. The decision to apply a qualitative approach was taken in order to capture the context and the complexity of the participants’ illness representations and management strategies (Sandelowski, 1995). A deductive qualitative content analysis was used as a method for analyzing data. This method is particularly suitable when the goal of the study is to validate or conceptually extend a theoretical framework (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005).

Ethical approval

The study was reviewed and approved by the Regional Ethics Committee in Stockholm; approval number 2016/683-31.

Recruitment procedure and study participants

Recruitment of participants was done via psychologists working in schools in the city of Stockholm. Parents who agreed to their child’s participation were contacted by the author and were informed about the study, as well the conditions of confidentiality and anonymity. After parents’ approval, information about the study and terms of participation were sent to the child. Participants were not offered compensation for their participation.

The inclusion criteria were children aged seven to nineteen years of age and who had been clinically diagnosed with ADHD. To maximize variation in the data, an effort was made to enroll both male and female participants, as well as to include variation in terms of the child’s age at the time of the interview and at the time when they received the diagnosis, as well as treatment experiences. However, concerning socioeconomic background, the group is relatively homogenous, as parents to all children have an academic education and work in full time.

Overall, 14 children/adolescents were interviewed in the study. Table 1 describes characteristics of the participants.

Table 1. Characteristics of the participants.

Characteristic
Female/male	6/8
Age at time of interview
Mean age ± SD (years)	12.9 ± 2.6
Mode age (years)	12
Range age (years)	8–16
Age when received the diagnosis
Mean age ± SD (years)	9.9 ± 3
Mode age (years)	10
Parental arrangement
Two-parent homes	11
Joint physical custody^a	3
Siblings
No siblings	2
Have siblings	12
Type of school
Mainstream, no extra support	8
Mainstream with special adjustments	5
Non-mainstream	1
Treatment experiences
None	4
Medication	10
Cognitive behavioral therapy	2

^aChildren living alternatively, and about equally, with both parents after a parental divorce.

Data collection

The purpose of the data collection was to achieve rich descriptions of children’s beliefs, reflections, and interpretations related to their ADHD. Particular emphasis was put on ADHD experiences in the context of everyday life. The interview guide was treated as a flexible tool, and was revised according to the content of the interview.

The data collection started in November 2016 and finished in April 2019. Interviews were conducted at locations that were convenient to the participants including their homes and schools. All interviews were conducted by the author and lasted 20–60 minutes. The interviews were audio-recorded and transcribed verbatim by the author.

Data analysis

The aims of the data analysis were to explore the manifestations of the CSM-dimensions in the interview transcriptions, to identify illness representations which were not represented in the model, as well as to explore possible relationships between illness representations of ADHD symptoms and behaviors aimed to manage them.

In order to validate the CSM, the analysis involved three stages (Elo & Kyngäs, 2008). In the first stage, a categorization matrix was developed identifying themes corresponding to the illness-representations proposed by the CSM. In the second stage, all data were reviewed and broken up into their component parts in order to define their meanings. Meaning units which corresponded with the CSM-dimensions were coded under the suitable theme in the categorization matrix. In the third stage, data that did not correspond with the CSM-dimensions were analyzed inductively and categorized into new dimensions. The analysis focused on the semantic content of what the participants said and was supported by QSR International’s NVivo 10 software.

Explorations of possible relationships between types of beliefs and types of strategies to manage ADHD symptoms have been done through a comparison between participants and a search for patterns (Charmaz, 2006).

The researchers’ positioning as a clinical psychologist at a child and adolescent psychiatric clinic may have had an impact on the analysis process. In order to increase the validity of the data analysis, internal peer reviews were applied in the form of two seminars in which five reviewers received, in advance, a transcript of an interview, as well as the author’s categorization of those interviews. During the seminars reviewers gave their feedbacks on the author’s categorization. Reviewers were both researchers with extensive experience in qualitative research methods and clinical psychologists working within child and adolescent psychiatric clinics.

Results

Overall, the dimensions of illness representations suggested by the CSM—identity, timeline, consequences, cause/underlying mechanism and control—have shown to be useful in categorizing children’s representations of ADHD (see Table 2). An additional dimension was identified, “the uniqueness of ADHD”, which refers to representations related to the way the ADHD symptoms differentiate individuals who live with the disorder and the manner in which the symptoms are experienced by other people (see Table 3).

Table 2. A sample of interview questions.

Examples of initial questions

What does it mean for you to have ADHD? How do you know that you have ADHD? Have you told anyone about your ADHD? What did you say? Tell me about a regular day in your life?

Examples of intermediate questions

Tell me about (specific everyday activities, such as having a dinner together/ preparing for school/taking care of your child/ helping your child with homework). What do you do? What do you think? How do you feel? What do you think about your behavior? Do you think that having ADHD plays a role in this situation? In what way? Do you think about ADHD when acting that way? Tell me about a specific situation that you think works well for you. How does it look like? What do you do? How do you think and feel? Do you think ADHD plays a role here? Why do you think this situation works well? Do you think that those situations are different for you than other children?

Examples of ending questions

Is there anything you would like to say to other children with ADHD? Do you have some suggestions for them?

Table 3. Illness representation among children with ADHD.

Dimensions	Content of dimension	Examples from interviews
Beliefs about the identity	Impulsivity	“I interrupt people in the middle of a conversation”
	Hyperactivity	“It feels like I want to run. It feels like that in my body” “I move my feet a lot, I move a lot.”
	Inattention	“…all of a sudden I can just sit still and just be quite and zoom out”
	Negative emotions	“ADHD do that I become more scared to talk in front of other people” “I feel irritated and angry with people”
	Emotional dysregulation	“I become very easily very very angry or very sad”
	Learning difficulties	“It is difficult for me to read and it is difficult for me with math”
	Superpower	“My inner-ADHD is like a super power inside my body”
	Creativity	“ADHD means that I think outside the box, that I am creative”
Beliefs about the timeline of ADHD	Lifelong: Born with it. Will have it for the rest of my life.	“This is something I was born with and will have for the rest of the life”
	Limited to a specific period: Received it some years ago. Will disappear when I will be older.	“I have got it when I was five or something, this is when you get ADHD. It disappears when you are fourteen or something”.
Beliefs about the consequences of ADHD	Self-esteem: Beliefs that ADHD has negative, positive or no consequences for their self-esteem.	“I started to feel bad about myself” “It helps me, I feel more confidence about myself with spots. I feel more, yes, you can do it.”
	Academic: Mostly negative consequences. Positive consequences for performance in gymnastic classes.	“Homework is difficult, independently what subject it is…it feels strange and difficult to focus” “because I want to move all the time it is difficult to sit still and study” “It may be does that I have good grads in gymnastic”
	Neutral and negative consequences on functioning in daily routines/ procedures.	“I wake up in the morning, brush my teeth, eat breakfast, and go to school. Just like that nothing special” “I always take extra time in the morning, something like extra half an hour that I will have time with everything. I don’t want to feel press to come late to school or something like that”
	Positive and negative consequences of ADHD on social interactions with peers and participation in social activities.	“It is like more conflicts, it is like I am on people when we play, I force myself on the other” “It is very easy for me to make new friends most of the children at school that have a diagnosis like my way of being” “I have no energy to meet friends.”
	Positive and negative consequences of ADHD on social relationships within the family.	“ADHD do that there is something common between me and my father, it is something that makes us closer” “It feels like my parents dont trast me. Maybe because of my ADHD.”
	Positive and negative consequences of ADHD for pursuing hobbies or leisure-time activities.	“It was one time during a football match that went quiet well…I was speeded during the match, I was like everywhere all the time.” “I think that I am very com and have this type of energy that animals feel and become com by me.”
Beliefs about the causes/underlying mechanisms of ADHD	ADHD is a result of a constant dysfunction within me: A disease/ something from outside that effects my body. A genetic disability—I have received it from someone in the family. Dysfunction in my brain.	“I have a disease, it sits in my nerves” “it is about how my brain functions” “it is like hereditary and is not often contagious, I have an aunt who seems to have it” (det är såhär ärftligt och smittar inte så ofta… Jag har en moster som verkar ha det.”)
	ADHD is a result of a temporary dysfunction within me: Temporary tiredness, lack of energy. Hunger, thirst. Temporary boredom, lack of interest, lack of motivation.	“I hit others if I don’t eat or if I am very tired. Or if I am very tiered and thirsty” “It is not that I always cannot sit still… sometimes when I am maybe tired” “…t is a problem of interest. If it is something I am not interested in, it is difficult for me to focus on that” “…hen I don’t have something to do I become hyper.”
	ADHD is a result of a lack of skills that can be learned.	“I have like to learn how to ignore my anger”
	ADHD is a result of factors in the environment: Messy and noisy environment. The task is too demanding.	“it is very loud in dinners in my father’s place. We are seven people that sit by the same table. The it is difficult for me to focus”
	My personality/ who I am/ a part of my character/ a trait.	“I believe that ADHD is my personality. Without that I would have been a completely different person”. “it makes what type of person I am. If I am kind or inpatient, or if I am harsh or quiet or everything that defines me. Special how other people se me. What is their first impression of me…ADHD is part of who I am.”
Beliefs about the ability to control ADHD	Perceived ability to achieve control by trying hard and making a strong effort to control themselves.	“…if I really really have to sit still, so I think it will work” “Although I really try hard so it becomes like that”
	Perceived ability to achieve control by avoiding problematic situations.	“When we needed to read loud in the classroom, I didn’t need to read loud…I didn’t have the same pressure on me.”
	Perceived ability to achieve control by receiving help from others.	“So sometimes I need someone to pull me to the ground and just ‘take it easy’”
	Perceived ability to achieve control by making changes in the environment.	“It is another room that I usually go to when it comes to matte lesson. And then I can sit there and then I can take it easy.”
	Perceived ability to achieve control by satisfying bodily needs like eating, drinking or resting.	“I force myself to eat. Otherwise, I become restless.” “If I can't work more, then I can go out into the corridor and take a break.”
	Perceived ability to achieve control by taking ADHD medications.	“I take medicine to be more calm, without this medicine I become irritated.”
	Perceived no need to control ADHD.	“If I feel like I want to run I do it. It feels good then”
Beliefs about the uniqueness of ADHD.	There is a quantitative difference between how much I have the symptoms and how much other people have them. Others also have the same experiences but I have them more often or more intense.	“The others need to study just the day before an exam that the material will go in, but I need to study one week before.”
	There is a qualitative difference between my experiences and others. People with ADHD experience things in a different way. Those who do not have ADHD do not experience those experiences.	“ADHD means to me to be special … I do different things in a different way from the others” “These things are things that only I have difficulty with, or only people with ADHD have difficulty with”

Identity

Identity is the dimension that captures beliefs related to what experiences are considered as ADHD. There were two types of experiences that were attributed to ADHD. The first type were physical sensations that the participants experienced within their bodies and which could not be observed by others. Such experiences were sensations of agitation and an urgency to act. The second type of experiences were behavioral ones. Those experiences could also be observed by others and were behaviors such as walking around in the classroom or leaving the dining table frequently.

Both internal sensations and behaviors, which were identified as symptoms, could be categorized into the core criteria of the diagnosis: hyperactivity, impulsivity and inattention. However, several children also included other types of experiences into what they perceived as symptoms of ADHD. Such experiences included having learning difficulties and difficulties to regulate emotions, but also experiences of being creative and enthusiastic.

In several interviews there was an inconsistency in the participants’ representations of whether or not an experience is a manifestation of ADHD. For example, while in some situations experiences of hyperactivity, such as feelings of corporal discomfort and restlessness, have been perceived and labelled as ADHD, those experiences have not been attributed to ADHD in other situations.

Cause/underlying mechanism

A variation of representations regarding the underlying mechanism for the symptoms of ADHD have been expressed by the participants. Some children believed that the reason for ADHD is a constant defect within themselves, in their whole body or limited specifically to their brain. Other participants also perceived the reason for their symptoms as a defect within themselves, but as a temporary one such as being hungry, tired, being bored or lacking motivation. Another type of beliefs on the reasons for ADHD was that the symptoms occur due to lack of a learned skill such as knowing how to regulate emotions. Some participants believed that their personality, their self and who they are is the reason for ADHD and that behaviors such as excessive talking, talking loudly and being hyperactive are parts of their self.

Consequences

This dimension describes a broad variation of representations related to the impact of ADHD on the participants’ lives. Whereas participants believed that ADHD had consequences in several domains in their lives, for their self-esteem, for their academic achievements, for their social participation, in pursuing a hobby and for performing daily routines, they differed in their beliefs on the quality and the degree of those effects. Some believed that the consequences of ADHD were positive while others believed they were negative. Some believed the effects were minor while others perceived those effects as prominent. In addition, children varied in how they perceived the personal meaning of the consequences. For example, even though some children believed that ADHD has a large effect on their social behaviors, they have not perceived it as a problem. Other participants, on the other hand, believed that ADHD was the reason for their social exclusion.

Timeline

This dimension classifies representations regarding the duration of ADHD. In this dimension participants were also heterogenic in their beliefs. While some of the children perceived ADHD as a life-long condition, others believed that they have developed ADHD later in life and that it will disappear with age.

Control

Control is the dimension in the CSM that describes representations related to perceived ability to control symptoms. Since a core characteristic of ADHD is the lack of ability to achieve control, and since all children have identified the experiences of difficulty in controlling bodily activity, attention, and impulses as symptoms of ADHD, this dimension consists of beliefs regarding different measures or efforts that should be taken in order to achieve control as well as the perceived ability to achieve control by taking those measures.

In this dimension a variation was also found regarding children’s beliefs for how they can achieve control. Some participants believed, for example, that they can control ADHD by trying very hard and making extra effort, others believed they should avoid or prevent problematic situations. Some children believed that they can achieve control over ADHD by receiving help from others or making changes in the environment. Several believed that they can control ADHD by taking medication.

However, beliefs about knowing what measures to take in order to achieve control over symptoms did not mean that the children believed they have the ability to take those measures. Several participants, for example, stated that they could control their symptoms if other people in their environment will adjust themselves to their needs, but that they did not have any control over receiving such adjustment.

It is important to point out that some of the participants in some situations believed that they did not want, or need, to control their ADHD. According to those perceptions, the symptoms of ADHD were rather positive and empowering, and by controlling them, the individual might miss an advantage.

The uniqueness of ADHD

This dimension captures beliefs regarding the uniqueness of the symptoms for individuals with ADHD and the difference between having and not having ADHD. In this dimension, two types of beliefs have been identified. The first type consists of beliefs that ADHD is a unique category of experiences, characteristic of only individuals with ADHD. In other words, there is a qualitative difference between the experience of individuals with ADHD and those without. The other type of beliefs regard ADHD as a spectrum. Here the difference between individuals with ADHD and those without is quantitative. According to those representations, all individuals experience symptoms of ADHD; the difference between having ADHD and not having ADHD is in the frequency or the intensity of those experiences.

The two types of representations have implications to how the participants positioned him/herself in relation to peers. The first type of representations positions the child in a unique category separate from peers while the second type positions the child in a spectrum in comparison to other.

Even though there was an overlap between participants’ representations of the uniqueness of their ADHD-experiences and their beliefs on the reasons for ADHD, those representations were categorized in a separate dimension since they capture the child’s positioning of him/herself in relation to other more specifically.

Patterns of relationships between representations and coping strategies

A comparison between participants who identified symptoms of ADHD as internal bodily sensations and participants who perceived symptoms as observed behaviors, have shown that participants who perceived ADHD as internal sensations also tended to manage symptoms by trying to control themselves. Those participants were also those who believed that the causes for ADHD were dysfunction in their body due to a medical condition. Those participants who have identified the symptoms of ADHD in terms of observed behaviors had a tendency to ask for help and to achieve control over the symptoms by adjusting their environment.

Regarding beliefs on the reasons for the symptoms of ADHD, participants who believed that ADHD has to do with a lack of ability, temporary or stable, as well as those who believed that they lack a specific skill that can be trained, had a tendency to manage their symptoms by making an effort to control themselves. Participants who perceived ADHD as a personality trait have shown a tendency to make changes in their environment or choosing environments that they believed will better fit their character. In the same way, children who believed that their ADHD has its reasons in environmental factors, have showed tendencies to make changes in their environment.

There was a clear pattern between the participant’s beliefs on how he or she can achieve control over ADHD and the strategy the participant has applied in order to do so. Participants who believed they can achieve control by trying hard, for example, developed strategies to control themselves, such as putting hands in their pockets, or by imagining that they are being physically active. Those participants who believed that they can achieve control over ADHD by making changes in the environment put their efforts in asking for environmental adjustments or avoided situations they perceived as problematic.

Beliefs that ADHD is an experience located on a spectrum, and that all children experience those experiences to a certain degree, have been related to attempts of self-regulation and self-control. Those beliefs have also been related to the beliefs that ADHD had negative implications for their self-esteem. Representations of the experience of ADHD as a separate and unique category, on the other hand, have been related to management of the symptoms by making adjustment in their environment or avoiding problematic situations.

Discussion

CSM is a theoretical model that has been extensively used to understand the relationship between illness representations and psychosocial outcomes. Even though the model was originally developed for somatic conditions, the results suggests that it might be useful for categorizing beliefs about ADHD among diagnosed children.

The results have showed that children construct beliefs about the identity of their ADHD, the consequences it has for their life, how long it will carry out and about their ability to control it (if such control is needed). Similar to the results of Wong and colleagues (Wong et al., 2018), it was found that there is a broad variation in those beliefs. This variation makes the CSM particularly useful as a theory as it aims to explain and predict variations between individuals who have similar conditions (Petrie et al., 2008).

The results also suggest that there are logical inter-relationships between the dimensions. Beliefs on the identity of the symptoms overlapped with beliefs on their causes, their persistence over time and with beliefs on the individual’s ability to achieve control. However, there is a risk that since the core symptoms of ADHD are difficulties to control attention, activity level and impulses, it may be difficult to distinguish between the dimension of identity and the dimension of control.

The analysis has also shown that there is a need to modify the model to the specific experiences of ADHD. One such modification is to include an additional dimension which consists of children’s beliefs on the uniqueness of the ADHD experiences, on the way ADHD differs or distinguishes them from others and if whether or not ADHD is a unique experience or if it is a part of being human. Those beliefs are especially interesting in the case of ADHD considering the fact that, whereas ADHD is defined as one category in the clinical use, recent research suggests that it is better viewed as an extreme on a continuum (Larsson, Anckarsater, Råstam, Chang, & Lichtenstein, 2012; McLennan, 2016).

Children’s beliefs on the uniqueness of their ADHD, and in that way their position in relation to others, may have an important contribution for how children cope with the disorder. It might be assumed that when perceiving ADHD as a spectrum, the child positioned him/herself in a ‘worse’ position in comparison to others, what leads to the child’s effort to achieve control on him/herself. On the other hand, by positioning oneself in a category by itself, a comparison with others is avoidable and environmental demands are ought to be adjusted.

Another suggested modification for the model is related to the inconsistency in beliefs within some individuals. The CSM theory assumes that individuals’ representations are relatively consistent within the individual (Leventhal et al., 1980). The results have shown that children have sometimes contradictory beliefs about their disorder, an inconsistency that can be interpreted as a result of confusion or by contextual characteristics of the experience.

Similar to the findings of other studies (Walker-Noack, Corkum, Elik, & Fearon, 2013; Andersson Frondelius, Ranjbar, Danielsson, 2019), also this study has showed that some children in some situations perceive their symptoms as empowering. It is important to explore those perceptions concerning possible contextual aspects related to them and aspects related to characteristics of those children.

The qualitative methods that were used in the study allowed for a nuanced exploration of ADHD-specific representations and resulted in findings that can be used in the development of a research and clinical instruments as well as for theories development. The results of the study may also be useful for practitioners as they increase our understanding of children’s own perceptions, an important aspect to consider in the therapeutic context (Ben-Arieh, 2005).

However, some methodological limitations should be considered when interpreting the results. Firstly, there is relatively little variation among participants regarding parents’ socioeconomic status, as all of them had parents with an academic background and full-time employment. It is possible that children with other socioeconomic backgrounds manifest other representations of ADHD as well as other coping-strategies.

A second methodological issue to consider is that some of the participants, particularly the youngest ones have had some difficulties to articulate themselves and reflect upon their beliefs related their ADHD experiences. Those difficulties, even though mitigated by focusing on concrete experiences from the children’s everyday life during the interview, may mean that important representations among those children were not captured.

Another limitation of the study is that no attention was given during the analysis process to contextual aspects such as family structures, parents’ expectations, treatment experiences, as well as aspects related to school as school norms, teachers’ attitudes and specific measures that were taken at school. Such environmental aspects may play an important role in how children perceive and cope with their symptoms, and need to be addressed by future studies.

Disclosure statement

No potential conflict of interest was reported by the author.