Living with ADHD: A Meta-Synthesis Review of Qualitative Research on Children’s Experiences and Understanding of Their ADHD

ABSTRACT

ADHD is a disability characterised by hyperactivity, impulsivity and difficulties maintaining attention. Despite extensive research on ADHD, the effects of existing treatments are moderate and inconsistent. Knowledge regarding children’s and adolescents’ everyday experiences of Attention Deficit Hyperactivity Disorder (ADHD) and their understanding of these experiences is valuable for the further development of interventions. The aim of the following study was to systematically search for and review qualitative research on children’s and adolescents’ everyday experiences and understanding of their ADHD, and to suggest an integrative synthesis of the results. In total, 16 published and unpublished qualitative studies on the subject were identified. The analysis identified four categories: (1) experiences related to one’s body and psychological abilities: lack of control, having difficulties, and the biological determination of these experiences; (2) ambivalent experiences related to one’s own psychological needs: a need to adjust oneself and a need to be accepted as ‘who I am’; (3) ambivalent experience related to social others: demands and expectations are a problem, experiencing lack of belonging and stigma, but also receiving help from close social others; and (4) experiences related to the formation of personal identity. Erikson’s psychosocial theory of personal identity is suggested for an understanding of the results.

KEYWORDS:

• ADHD
• adolescents
• identity formation
• lived experience
• qualitative meta-synthesis
• qualitative research

Introduction

Attention Deficit Hyperactivity Disorder (ADHD) is a diagnosis characterised by severe difficulties maintaining attention, coupled with impulsivity and hyperactivity (American Psychiatric Association, 2013). Other related secondary symptoms of ADHD may be social, emotional and learning impairments (Wehmeier, Schacht, & Barkley, 2010), and comorbidity with psychiatric disorders such as disruptive behavioural disorders, depression and anxiety disorders is relatively high (Pliszka, 2003). The worldwide prevalence of ADHD among children and adolescents is estimated to be three to seven per cent (Rohde & Polanczyk, 2007), with two to nine times higher prevalence among boys than girls (American Psychiatric Association. DSM-5 Task Force, 2013).

There is relatively strong consensus in the scientific community that ADHD is biological in nature (Barkley, 2002; Houghton, 2006). However, some scholars suggest an integrative approach for the aetiology of ADHD, emphasising the need for the inclusion of social and cultural factors (Singh, 2002).

The treatment of ADHD includes pharmacological treatments (Reichow, Volkmar, & Bloch, 2013) and psychosocial interventions such as cognitive therapy (Cortese et al., 2015), behavioural therapy (Daley et al., 2014) and parental training (Zwi, Jones, Thorgaard, York, & Dennis, 2011). Generally, the effects of existing treatments are moderate and inconsistent (Chan, Fogler, & Hammerness, 2016; Fabiano, Schatz, Aloe, Chacko, & Chronis-Tuscano, 2015; Prasad et al., 2013), and the predictors of treatment response remain largely unknown (Warikoo & Faraone, 2013). Due to the moderate and inconsistent effect of suggested treatments, there is a need for further development of interventions that will help children and adolescents with the disorder.

In order to develop effective interventions, several researchers underscore the need for knowledge concerning children’s own experiences and understanding of their life (Mason & Watson, 2014; Soffer & Ben-Arieh, 2014). According to this perspective, research in which children are the source of information about their life has high methodological value, as it contributes first-hand contextual information about the child’s experience, knowledge which is valuable from a clinical perspective (Ben-Arieh, 2005).

Lately, numerous qualitative studies have been conducted in order to understand children’s perception and understanding of their ADHD. Qualitative research methods allow for an open-ended exploration of the complexity of experiences, but also enable us to understand the actual manifestation of children’s behaviours in everyday situations and the contextual aspects related to these behaviours (Saini & Shlonsky, 2012). Thus, the purpose of this paper is to systematically search for and identify existing qualitative studies on the subject and to suggest an integration of their findings. The intended result of such integration would be to make sense of the available literature, to provide a broader, more context-sensitive and integrative understanding of how children and adolescents with ADHD experience their ADHD in everyday life and how they perceive these experiences.

Method

Study Design

The method that was used as a guide for the synthesis of the qualitative studies is the one suggested by Sandelowski and Barroso (2007). This broadly used method in the context of health-care research (Saini & Shlonsky, 2012) aims to systematically review and integrate the findings from various qualitative research reports and to suggest an understanding of the phenomenon in a manner entailing more than merely the sum of all the studies’ results (Sandelowski & Barroso, 2007). The method consists of three stages: firstly, a systematic search for and retrieval of qualitative research reports; secondly, a critical appraisal of the identified reports according to inclusion criteria; and thirdly, an interpretative integration of the findings of those studies regarded as eligible by creating a categorisation of these findings.

Systematic Search for and Retrieval of Research Reports

The inclusion criteria (see Table 1) were defined as studies on children’s and adolescents’ experiences and understanding of their ADHD, whereby qualitative methods were used for collecting and analysing data. The children and adolescents, diagnosed with ADHD, had to be under 19 years of age at the time the study was conducted. A systematic search in 15 electronic bibliographic databases was performed in order to find research relevant to the aim of the study (see Figure 1). With the intention of finding a wide sample of reports, the search included peer-reviewed published articles as well as unpublished doctoral dissertations. The reason for the inclusion of doctoral-level theses in the search is that they are often an important source of knowledge in the area of health research (Olsson, Sundell, & Olsson, 2016), and are generally of satisfactory scientific quality as they are reviewed and assessed by an examination committee (Holbrook, Bourke, Lovat, & Dally, 2004).

Table 1. Inclusion criteria for studies in the meta-synthesis.

1. Children diagnosed with ADHD

2. Participants were aged 19 years and under at the time the study was conducted

3. Children were the only source of the collected and analysed data

4. The methods used for collecting and analysing data were qualitative

5. Peer-reviewed studies or studies at a doctoral level

6. Studies were written in English

Figure 1. A PRISMA diagram showing the article screening process.

The parameters that were set in order to find studies regarding children were: ‘Children’ OR ‘Teenagers’ OR ‘Adolescence’ OR ‘Youth’ OR ‘Teens’. The search parameters that were set for ADHD were: ‘ADHD’ OR ‘Attention Deficit Hyperactivity Disorder’ OR ‘Attention deficit’ OR ‘Hyperactivity disorder’. Following the recommendations of Sandelowski and Barroso (2007), the methodological parameters that were set in order to find qualitative studies were: ‘Constant comparison analysis’ OR ‘Content analysis’ OR ‘Descriptive study’ OR ‘Discourse analysis’ OR ‘Ethnography’ OR ‘Exploratory analysis’ OR ‘Field observation’ OR ‘Field study’ OR ‘Focus group’ OR ‘Grounded theory’ OR ‘Hermeneutic’ OR ‘Interview study’ OR ‘Interpretative Phenomenological Analysis’ OR ‘Narrative’ OR ‘Naturalistic’ OR ‘Participant observation’ OR ‘Phenomenology’ OR ‘Qualitative methods’ OR ‘Qualitative research’ OR ‘Semiotics’ OR ‘Thematic analysis’.

The search was defined to look for the parameters in the studies’ abstracts. No temporal parameters were set besides the endpoint of the search process, which was April 2017. Due to practical restraints, the search for studies was limited to those that were written in English. The search process was undertaken with continuing consultation with a reference librarian.

Critical Appraisal of Studies

The critical appraisal of the studies consisted of two stages. In the first stage, in order to determine whether the report met the inclusion criteria, the titles, and if necessary the abstracts as well, were read and evaluated to determine overall relevance. Articles deemed relevant according to the inclusion criteria were exported to the reference management software Refworks©. Duplicate studies were identified by the software. Subsequently, the selected articles were closely read in their entirety to determine their relevance, again according to the inclusion criteria. At the end of this stage, an assembly of studies to be included in the meta-synthesis was completed. In the second stage of the critical appraisal, a cross-study tabular display with information from each study regarding different aspects of the study was constructed. These aspects were: location of the study, purposes and questions, characteristics of participants, conceptual and theoretical frameworks, methods for collecting and analysing data, and the study’s findings. This summary of research characteristics enabled increased comprehension of each individual study and made it easier to compare between the studies and search for patterns. To ensure validity of critical appraisal, continuous consultation was undertaken with a researcher supervisor with extensive experience in qualitative research.

Considering the lack of agreement regarding quality assessment of qualitative research and the intra-reviewer inconsistency related to the use of such assessments (Mays & Pope, 2000), no critical appraisal of research quality was applied. In line with the method suggested by Sandelowski and Barroso (2007), the critical appraisal of studies presented here ‘emphasizes differences in kind between qualitative findings as presented in research reports, not differences in quality between qualitative studies’ (p. 138).

Classifying Studies’ Findings: Identifying Categories and Interpretative Integration

The purpose of this stage of the analysis was to inductively identify categories and underlying conceptual relationships between themes that were found in the different studies. The classification of themes was done based on semantic relationships between them, such as ‘X is a type of Y’, ‘X is a reason for doing Y’, ‘X is a consequence of Y’ and ‘X is a part of Y’. In the taxonomic analysis, it was not the prevalence of the appearance of a theme that was significant but rather the theme’s contribution to the conceptual understanding of the categories and the relations between them.

The interpretative integration aimed to suggest a comprehensive understanding of the categories identified through the taxonomy analysis, and how the different categories may be related to each other. To ensure validity of the suggested categories and the interpretative synthesis, internal peer reviews were applied during the integration procedure. These peer-review procedures were carried out in the form of three seminars, at which the different possible interpretations of the data as well as the validity of these interpretations were discussed. Internal peer reviewers were both experts in research methodology and individuals with clinical knowledge in the subject area.

Ethical Approval

All studies included in the synthesis had been approved by an ethics committee. Ethical approval for the present study was not required, as it involved the synthesis of existing literature based on studies conducted with ethical approval.

Results

The systematic search for studies (see Figure 1) generated 1,654 articles, and exclusion due to duplication and the initial screening of titles and abstracts resulted in a remaining 81 articles. These articles were read in their entirety and assessed for eligibility, resulting in a total of 16 articles, which were used in the meta-synthesis. Critical appraisal of these 16 studies included in the meta-synthesis (see Table 2) showed that 12 were published, peer-reviewed articles, and four were unpublished doctoral dissertations. Most studies were conducted in the UK (44%) and in the US (18%), and the majority used semi-structured interviews (81%). Methods of data analysis varied from discourse analysis, constant comparative analysis, thematic data analysis and content analysis to interpretative phenomenological analysis. In total, an aggregate of 205 participants were involved in the studies, 149 boys (73%) and 56 girls (27%) ranging from six to 19 years old. Most of the children and adolescents were taking medication regularly or had experience of taking medication.

Table 2. Summary of papers included in meta-synthesis by aims, methodological design, data analysis, participants, and results.

	Study and location	Aim	Design and data analysis	Sample characteristics	Themes findings
#1	Bradley (2009). UK	To study children’s perceptions of their ADHD and medication	Mixture of semi-structured interviews and drawings. Grounded theory.	N = 5: all boys, 10–13 years of age. All attending mainstream schools. All taking medication.	Emotional ADHD: children’s expression of anger in relation to ADHD. Lack of control over own behaviour. Medication as an external locus of control. ADHD as a permanent condition in their biology. Self-identity: a mixture of elements which are related and not related to ADHD.
#2	Brady (2014). UK	To study children’s understanding and experiences of ADHD, and their health and illness experiences	A mixture of oral, written and artistic contributions was collected. No method of analysis is given.	N = 7: 6 boys, 1 girl, 6–15 years of age. 4 White British, 1 North American, 1 Black British.	Children were active mental health consumers, making choices and accepting responsibility.
#3	Friio (1998). Canada	To study the experiences of adolescents diagnosed with ADHD	Semi-structured interviews. Phenomenological Hermeneutic analysis.	N = 6: 5 boys, 1 girl, 14–19 years of age. 4 attending regular high schools and 2 attending special schools. 3 taking medication regularly.	Lacking control over one’s body. Having a different sense of hearing. Rejection by teachers: teachers’ expectations were unrealistic. Teachers underestimated the participants’ needs and difficulties. Not having a ‘safe place’, a place to find love, comfort, acceptance, and assistance.
#4	Gallichan and Curle (2008). UK	To study the meaning and experience of ADHD from young people’s perspectives with focus on social context.	Semi-structured interviews. Grounded theory.	N = 12: 10 boys, 2 girls, 10–17 years of age. All white British. 5 children attending mainstream schools without extra support, 7 children having received special support at school. 10 taking medication.	Feeling like unconventional ‘square pegs’ attempting to fit into the ‘round holes’ of conventional society. Lack of control when terms were defined by others. Negative sense of self in relation to others. Making sense of their own situation and behaviour. Different ways of adapting, such as medication and coping strategies. Adaption of the environment helps.
#5	Grant (2009). UK	To study the experience of ADHD in the context of family life, and their perception of the support they have received	Semi-structured interviews. Interpretative Phenomenological Analysis.	N = 8: 7 boys, 1 girl, 11–18 years of age. 6 White British. 6 taking medication, all having medication experience. 6 in two-parent families. All attending regular schools.	The importance of belonging. Feeling like an outsider, being a target to blame. Being understood and accepted by a person close to them. Is there more to me than my ADHD? Concerns about the meaning of ADHD for their self-identity: My Hyper Self – as mad, bad, and out of control. Needing medication Capturing positive aspects of the ADHD experience. I can’t do it alone – the need of adult involvement in monitoring behaviours and emotions. Calming myself – using strategies to control emotions and behaviours. Trying to make sense of ADHD: Negotiating family stories about ADHD experience. Adopting a psychiatric framework
#6	Hallberg, Klingberg, Setsaa, and Moller (2010). Sweden and Norway	To study how teenagers with ADHD describe their daily lives, the diagnosis and treatment.	Semi-structured interviews. Grounded theory.	N = 10: 5 boys, 5 girls, 13–18 years of age. 9 were on medication.	Hiding parts of one’s self from others: feeling of lack of normalcy, and fear of being regarded as different. Wishing to be like everybody else. Keeping the medical treatment secret. Feeling worried about the future.
#7	Honkasilta, Vehmas, and Vehkakoski (2016). Finland	To study the way youth account for their ADHD-related behaviour.	Semi-structured interviews. Linguistic Discourse Analysis.	N = 13: 11 boys, 2 girls, 11–16 years of age. 10 children from nuclear families, 1 from a divorced family, 1 from a blended family, 1 from a single-parent family.	Excuses: externalization of personal responsibility of ADHD-related behaviours. Behaviour perceived as uncontrollable, a result of a compulsive biological trait and situational factors. Struggling towards self-reflection and self-governance. Negotiating with social stigma.
#8	Kendall, Hatton, Beckett, and Leo (2003). USA	To study how children perceived the meaning and experiences of ADHD in everyday lives	Semi-structured interviews. Constant- Comparative Analysis.	N = 39: 26 boys and 13 girls, 6 to 17 years of age. 15 African American, 13 Hispanic, 9 Caucasian.	Having problems: getting into trouble, problems with learning and cognition, problems following rules and getting along with others.
#9	Kendall (2016). UK	To study how children with ADHD perceive their diagnosis in the context of school	Semi-structured interviews. A Thematic Data Analysis.	N = 12: 7 boys, 5 girls. 10–15 years of age. All participants were in mainstream schools. 10 children had experience of medication.	Diagnosis is positive: a ‘relief’. Medication is helpful but does not remove symptoms completely. Lack of concentration. Teacher support and understanding changed after diagnosis. Feeling of shame when teachers shouted at them.
#10	Knipp (2006). USA	To study teens’ perceptions regarding adaptation to ADHD as experienced with family and friends.	Semi-structured interviews. A Content Analysis.	N = 15: 10 boys, 5 girls. No data on range of age, except that all participants were teens. 12 were taking medication.	Ambivalent feelings about taking medication: when I take medication, I do better. Medications are a hassle. Self-concept: I’m just an everyday teenager.
#11	Krueger and Kendall (2001). USA	To study adolescents’ experience of living with ADHD in the context of family, peer group, school, and expanding social milieu	In-depth semi-structured interviews. Constant Comparative Analysis. Focusing on aspects of identity. Having a gender perspective.	N = 11: 8 boys, 3 girls, 13 to 19 years of age. All participants were white, 10 from middle-income households, all were taking ADHD medication. 9 were in individual education programmes, 2 in regular classes.	ADHD defined self: description of self in terms of ADHD symptoms. Self was disrupted by others’ expectations. For boys, the self was based in the immediate present, with little connection to past or future. Girls’ past and future were related to the self, with accumulated negative experiences. Boys maintain emotional stability, denying they had a problem or caused problems. Girls were vulnerable to the negative responses of others. Lack of empathy, connection and reciprocity with others. Lack of control and power.
#12	Levanon-Erez, Cohen, Bar-Ilan & Maeir. (2017). Israel	To study the experience of ADHD in the context of academic (a mixed-methods study; here the qualitative part is presented)	Semi-structured interviews. Qualitative Content Analysis.	N = 10: 8 boys, 2 girls, 10–17 years of age. All participants attended regular education schools. All used medication.	Having a strong will to succeed academically. Failing in academic participation: expressions of being rejected. Self-explanation for failing in academic participation with lack of control over behaviours and lack of energy.
#13	Leyland (2016). UK	To study the way the children think and feel about their diagnosis and how the diagnosis impacts on their sense of self	Semi-structured interviews. Interpretative Phenomenological Analysis.	N = 4: 3 boys, 1 girl, 7–11 years of age. All had medication experience.	Emotional dysregulation. Self-protective measures. Management of emotions and emotional arousal. Impact of social norms upon the individual’s experience. Desire to be cared for, interacted with, and disciplined. Wanting to be like a role model. Self-appraisal based on how others perceive them. ADHD identity – defining oneself in terms of ADHD symptoms, not able to separate one’s own identity from the disorder.
#14	Singh et al. (2010). UK	To study children’s perceptions of stimulant medication, the diagnostic process, and the experience of having ADHD	Focus groups and individual interviews using semi-structured questions, games and vignettes. Systematic qualitative coding.	N = 16: 14 boys, 2 girls, 9–14 years of age. All used medication. 15 were white-British, 1 was British of middle-eastern descent.	Medication is necessary for managing everyday situations. Conceptions of identity: a continuous sense of themselves, independent of whether they were on or off medication. Understanding the contextual aspects of their ADHD. Conceptions of personal agency: feeling of agency in situations involving peer-generated social codes. Lack of agency in the classroom. Able to make choices about the future, but also acknowledged their limitations. Experiences of stigma and bullying.
#15	Walker-Noack, Corkum, Elik, and Fearon (2013). Canada	To study youth perceptions of the ADHD experience, barriers to treatment, and social attitudes about ADHD	Focus groups. Open-ended discussion questions. Phenomenological Analysis.	N = 25: 15 boys, 10 girls, 10–21 years of age. 19 were taking medication, 22 came from two-parent families, 3 from single-parent families.	Benefits of ADHD: Increased energy, school adaptations, excuses for behaviour. Difficulties due to ADHD: symptoms, school and home difficulties, dislike of taking medication. Matters requiring assistance: help for ADHD symptoms, help at school and at home. Positive and negative aspects of medication. Positive and negative aspects of behavioural interventions. What other people know: stereotypes about ADHD, other people should not treat us differently.
#16	Wiener and Daniels (2016). Canada	To study the way adolescents with ADHD perceive their lived experience in the context of school and education.	Semi- structured interviews, Grounded theory.	N = 12, 9 boys, 3 girls, 14 to 16 years of age. 8 were taking medication regularly.	Performance deficit: Inadequate and inconsistent study skills. Need of support: awareness of their educational needs. Challenging social engagement: challenges with social relationships, feeling left out, incidents of being bullied. Importance of parental involvement: in terms of advocacy, encouragement, and helping with the educational process. Increased demands for autonomy: taking more responsibility for learning, awareness of rights and needs.

The interpretation and categorisation of the data generated four categories (see Table 3). The first category relates to experiences of corporeal and psychological abilities of behaviours, emotions and cognitive abilities. The reason for categorising these experiences together is that they express individual internal processes that are often interrelated. This ‘body, behaviours, emotions and cognitions’ category consisted of three subcategories: lack of control; having difficulties; and biological determinates. The ‘lack of control’ subcategory expresses themes related to children’s and adolescents’ experiences of having difficulties controlling their behaviours, of having overwhelming emotions that they experience lacking the ability to control, and having difficulties maintaining focus and controlling their attention. The second subcategory consists of themes related to the notion of experiencing difficulties and living with a disability. The third subcategory, related to experiences concerning corporeal and psychological abilities, is based on their being biologically determinate, a consequence of being biologically different. Interestingly, only one study reports a theme expressing children’s and adolescents’ positive experiences related to their body, behaviours, emotions and cognitions.

Table 3. Categorisation of children’s experiences and understanding of their ADHD.

Category	Subcategory	Content of category	Appears in studies	Examples from studies
Experiences related to own body and psychological characteristics	Lack of control	Lack of control: a feeling of disempowerment at lacking control over their own behaviour, intentions, emotions, and attention.	1, 3, 5, 6, 7, 12, 13, 15	‘That it’s something I can’t control, really. It’s like a part of you, like it’s hard…’ (Kendall et al., 2003, p. 120)
	Having difficulties	Problems with learning and cognition: difficulties understanding what they were hearing. Having negative feelings of anger regarding these difficulties.	3, 6, 8, 9, 16, 12	‘Yes – I do believe I have ADHD, because I can tell that I am a slower learner and that’s what I think that is. I have a hard time reading and stuff…’ (Kendall et al., 2003, p. 120)
	Biologically determinate	A medical disorder, in their body; being biologically different.	1, 4, 7, 9	‘I think HDAD [sic] is what controls me .. like a monster I think.’ (Gallichan & Curle, 2008, p. 353)
Ambivalent experiences related to own psychological needs	Need to adapt oneself	Need for self-adaptation and controlling self, through medication and coping strategies. Striving for management of thoughts, emotional reactions, and behaviour.	2, 4, 5, 6, 7, 10, 13, 15	‘I talked to my mum for like 3, 4 hours about like, what would happen, what I could make happen, what will happen, if it carried on […] reality hits you and it’s like, right, ok I’m going to try and control myself now, I’m gonna try and do the best I can, not get in fights, not be disruptive.’ (Gallichan & Curle, 2008, p. 354) ‘Well, it definitely helps if I take it, I get eligible for football or soccer.’ (Knipp, 2006, p. 122)
	Need to be accepted for who I am	Having a safe place. Being understood and accepted. A place to find love and comfort.	3, 4, 5, 9, 10, 12, 13, 15, 16	‘My Mum said, you don’t have to tell everyone. But otherwise they just thought I was mad. And they looked at me weird, just like a normal weird kid. Well not weird, but strange. So I just told them, like, one by one and they just accepted me for what I was.’ (Grant, 2009, p. 50)
Ambivalent experiences related to social others (school, family and peers)	Others’ demands and expectations are a problem	Others’ expectations are unrealistic and difficult to meet, leading to loss of control.	3, 4, 5, 9, 11	‘I get so sick of the nagging – take your meds, do that, don’t do that. It’s their problem, and they should just leave me alone. Sometimes I just hit the wall, or my brother. Then I’m bummed the rest of the day.’ (Krueger & Kendall, 2001, p. 66)
	Experiences of stigma	Feeling of being singled out amongst the others; a target to blame for incidents. Experiences of stigma and bullying.	4, 5, 14, 15, 16	‘They don’t want to go near me “cos I’m hyper” […] they don’t realize … that I might have changed […] the first impression always sticks.’ (Gallichan & Curle, 2008, p. 351) ‘ADHD is when no-one believes you when you are saying the truth. Because everyone else is gonna be like against you for some reason.’ (Grant, 2009, p. 46)
	Lack of belonging	Being regarded as different from others. Wishing to be like everybody else. Feeling like an outsider, struggling to feel integrated.	4, 5, 6, 8	‘I feel like I get, I don’t know how to put it – like taken, picked out from like amongst the others. Say if you could like draw a coloured ring around everyone; they would draw a blue one around everyone else and they’d draw a red one around me.’ (Grant, 2009, p. 45)
	Receiving help from others	Receiving help from a person close to them. Needing environmental adaptation, encouragement, acceptance from others, flexibility, and to be cared for, interacted with, and disciplined.	4, 5, 6, 8, 9, 10, 13, 15, 16	‘I feel supported by the teachers that understand I’ve got my condition..they like repeat things to me or if I kind of like miss it out, they come and stand by me or sit by me and tell me what to do.’ (Kendall, 2016, p. 30) ‘My mom is the only one who helps me with my homework.’ (Kendall et al., 2003, p. 124)
Experiences related to formation of self-identity	Challenges in formation of self-identity	Negative view of themselves. My Hyper Self: as mad, bad, and out of control. Negative emotions in relation to their cognitive difficulties. Description of self in terms of ADHD symptoms. Ambivalent self-conceptions in relation to the ADHD symptoms. Self and self-appraisal based on how others perceive them, Self-explanation for failing.	1, 5, 7, 8, 11, 12, 13, 14	‘I’ve had pretty negative thoughts about myself and ADHD since I was little, especially when people are nagging me about things when I mess up. I try to do things right, but I can’t. I think it’s the way I’ll always be.’ (Krueger & Kendall, 2001, p. 65) ‘I was just sitting there analysing myself, like is this me, or not [..] but obviously everyone is gonna be different with it so you can never really tell what is to do with it and what isn’t.’ (Grant, 2009, p. 54)
	Building a normative personal identity	I’m just an everyday teenager, having a sense of self independent of whether on or off medication.	4, 8, 10, 14	‘It’s just who I am.’ (Kendall et al., 2003, p. 123)

The second category that was found related to themes expressing children’s and adolescents’ thoughts, feelings and experiences of what needs they have. A subcategorisation of these experiences resulted in two subcategories describing the two somewhat ambivalent experiences of the need to adapt but also to be accepted for ‘who I am’. The one subcategory expresses the need to be able to adjust to demands related to everyday situations, for example by being able to control themselves. This can be achieved by taking medication and developing adaptation skills. The other subcategory consists of the experience of needing to be accepted as ‘who I am’ without adjustments or efforts to control oneself. This ambivalence between the needs of self-adaptation and of being accepted as ‘who you are’ is particularly exemplified in the ambivalence of experiences involving medication. In some studies medication was experienced as a help, enabling behavioural control, while in other studies it was experienced as a factor contributing to children’s experience of lack of control, as it enables them to attribute their own behaviour to being on or off medication.

The third category that was identified considers themes related to children’s and adolescents’ experiences of their social environment. Similar to the second category, an ambivalent sense of experience was recognised within the subcategories. The first three subcategories expressed negative experiences of social others: others have demands and expectations that lead to the manifestation of ADHD and negative feelings; experience of stigmatisation; and a lack of belonging. On the other hand, the fourth subcategory reflects themes regarding others as a source of help and support – support which is necessary for everyday functioning.

The fourth category involved experiences of self-identity formation and was comprised of themes related to the question of ‘who I am’. Two subcategories were identified related to different types of experiences. The first consisted of themes describing challenges in the experience of identity formation. Such themes included ‘ADHD defined self’, meaning that children and adolescents perceived who they were in terms of ADHD diagnosis criteria, and defined themselves in terms of how they have been perceived by others rather than how they have perceived themselves. The second subcategory related to themes describing normative experiences of identity formation.

Discussion

A clear characteristic of the first three categories of experiences is the expression of a lack of control and ambivalence. Children and adolescents with ADHD may experience their behaviours, emotions and cognitions as things that exist outside themselves, as aspects not related to their will and intentions but rather to the ADHD. This experience may create a feeling of separation between the self and one’s own behaviours, thoughts, and emotions. In addition, the experience of one’s own psychological needs is characterised by ambivalence: experiencing a need to adjust to environmental demands and to achieve control over aspects of oneself (by taking medication or training skills) on the one hand, experiencing a need to be accepted as ‘who I am’ on the other. Furthermore, the experience of their closest social environment is ambivalent. Family, teachers and peers, even though they might be a source of help and support, are also a source of demands – the very demands that might lead to the manifestation of the disability. Also, the lack of a feeling of belonging and the experience of being perceived as a stereotype may lead to ambivalent experiences towards social others.

Given the fact that many of the participants in the integrated studies were adolescents, the emergence of themes considering issues of identity formation is not surprising. According to Erikson’s (1968) theory of psychosocial development, the developmental psychosocial task of adolescence is the formation of a stable internal presentation of self, an identity. In Erikson’s view (1994[1980]), even if the first representations of identity occur during childhood, it is only in adolescence that a crystallised form of identity develops, a process in which childhood identifications come to be challenged and replaced by new, more genuine, identity configurations. A positive resolution of this psychosocial process is possible due to the mutuality between the individual and the social environment in which the individual lives, when the social environment allows the individual, with their unique physical and psychological characteristics, to find their meaning and social role in a successful way (Erikson, 1968; Erikson, 1994[1980]). A possible hypothesis that might be constructed from the results is that the experience of children and adolescents with ADHD of forming a stable personal identity might be related to their experience of a lack of control over their body, behaviours, emotions and cognitions as well as their ambivalence towards their psychological needs and their close social environment. This assumption, however, should be further developed in future research, as it can have significance in clinical settings.

Limitations

A qualitative meta-synthesis is a method for integrating qualitative studies to achieve a better, more nuanced understanding of a particular lived experience (Saini & Shlonsky, 2012). However, one aspect of this method that should be taken into consideration is the reinterpretation of data that have already undergone initial interpretation. In other words, the synthesised data are two stages away from the individuals’ own words. The ‘words of children and adolescents’ were first interpreted and integrated by the researchers who conducted the original qualitative studies, and these interpretations were interpreted a second time and integrated during the process of the meta-synthesis (Sandelowski & Barroso, 2007). This process runs the risk of losing parts of the participants’ experiences.

Another methodological limitation of the study is the fact that no consideration was made for the time and place in which the studies were conducted. The context underlying a qualitative study can impact upon various aspects related to the relevance or interpretation of the findings. Some of the possible contextual variables may include: social attitudes towards ADHD; educational aspects and legislation that might be different between countries and over periods of time; and what might be significant for the individuals’ experience of ADHD in everyday life and their understanding of these experiences. The aspect of time can also be relevant in regard to changes between different editions of the DSM, as the diagnostic criteria changed between the last two editions. Additionally, the fact that the search criteria were limited to studies written in English may have an impact on the identification of experiences within the meta-synthesis.

A third methodological aspect to consider is the fact that no assessment of the methodological quality of the studies was done. In the meta-synthesis, all studies were weighed equally without taking into consideration the study’s qualitative approach or method of analysis, or the type and size of the study sample. The reason for assessing the studies equally was the relatively limited number of studies that were found on the subject, and the assumption that all the studies have contributed equally to the knowledge in the field.

Disclosure statement

The author has received no direct or indirect financial benefits arising from the direct applications of this research. The author has no potential conflicts of interest regarding this research.