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

Figures & data

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.

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.

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)

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