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Patterns of Coping: How Children with ADHD and Their Parents Perceive and Cope with the Disorder
Stockholm University, Faculty of Social Sciences, Department of Education.ORCID iD: 0000-0003-3825-042X
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental diagnosis characterized by symptoms of excessive motor activity, impulsivity, and inattention. Previous research indicates that ADHD has negative implications on the psychosocial functioning of children with ADHD and their parents. In order to fully understand the implications of ADHD we need to understand how children and parents perceive and cope with its symptoms. The aims of this thesis were to (1) identify perceptions of the symptoms among children with the disorder and their parents; (2) identify strategies that children and parents apply in order to cope with the symptoms; and (3) explore patterns between perceptions and coping strategies. The methods used in this thesis are qualitative and include a systematic review of qualitative studies and the analysis of semi-structured interviews with children and parents.

The results show a variation among children with ADHD as regards their perceptions and coping strategies. With reference to perceptions, five themes were identified among the children: (1) the causes of their symptoms (“there is something wrong with me”, “there is something wrong with my environment”, “this is my personality, a part of who I am”); (2) the implications of the symptoms for their life; (3) symptom timelines; (4) the ability to control the symptoms; and (5) the uniqueness of the symptoms (perceiving the symptoms as either a spectrum or a dichotomy). The study also identified three types of coping strategies that the children applied to manage their symptoms: (1) controlling oneself; (2) making changes in the environment; and (3) following the symptoms and satisfying immediate needs.

This study found three observable patterns between how children perceive their ADHD and how these children cope with its symptoms. Children who perceive their symptoms as a result of a deficiency within themselves engaged with attempts at self-control, while those children who perceive their symptoms as a result of a problematic environment attempt to change their environment. Also, children who perceive their ADHD as a part of their personality express a tendency to “follow the symptoms.” Additionally, patterns were observed between the perceived uniqueness of ADHD and applied coping strategies. That is, children who perceived ADHD as a spectrum engaged in controlling themselves, whereas those who perceived ADHD as a unique and dichotomous characteristic engaged in making changes in their environment.

As regards the parents of children with ADHD, this study found that parents perceive their child’s symptoms as a source of difficulties for the parent and as a result of a biological dysfunction. Parents cope with their child’s symptoms by: (1) adjusting their behaviors towards the child; (2) searching for knowledge and becoming experts; (3) regulating negative emotions in relation to the child and others; and (4) negotiating between ADHD and everyday demands, personal wishes and values. In particular, patterns were observed between the perceptions parents have of their child’s behaviors being the result of biological dysfunctions and the coping strategies that these parents employ as a result.

This thesis highlights the importance of giving attention to the perceptions that children and parents have of ADHD symptoms and how they cope with them in order to inform and contribute to future research and clinical work.

Place, publisher, year, edition, pages
Stockholm: Department of Education, Stockholm University , 2020. , p. 99
Series
Doktorsavhandlingar från Institutionen för pedagogik och didaktik ; 64
Keywords [en]
ADHD, Children, Parents, Lived-experience, Meaning-making, Parenting stress, Coping, Perceptions, Self-management, Illness-representations, Transactional theory, Leventhal's Common Sense Model, First-hand perspective, Qualitative methods, Interviews
National Category
Pedagogy
Research subject
Education
Identifiers
URN: urn:nbn:se:su:diva-182624ISBN: 978-91-7911-224-0 (print)ISBN: 978-91-7911-225-7 (electronic)OAI: oai:DiVA.org:su-182624DiVA, id: diva2:1442595
Public defence
2020-09-14, The defence will be held via Zoom, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2020-08-20 Created: 2020-06-17 Last updated: 2022-02-26Bibliographically approved
List of papers
1. Living with ADHD: A Meta-Synthesis Review of Qualitative Research on Children’s Experiences and Understanding of Their ADHD
Open this publication in new window or tab >>Living with ADHD: A Meta-Synthesis Review of Qualitative Research on Children’s Experiences and Understanding of Their ADHD
2020 (English)In: International journal of disability, development and education, ISSN 1034-912X, E-ISSN 1465-346X, Vol. 67, no 2, p. 208-224Article in journal (Refereed) Published
Abstract [en]

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
National Category
Educational Sciences Psychology
Research subject
Education
Identifiers
urn:nbn:se:su:diva-168297 (URN)10.1080/1034912X.2019.1596226 (DOI)000463975000001 ()
Projects
Living with ADHD: How children with ADHD and their parents perceive and cope with the disorder
Available from: 2019-04-29 Created: 2019-04-29 Last updated: 2022-02-26Bibliographically approved
2. Young people’s perceptions of and coping with their ADHD symptoms: A qualitative study
Open this publication in new window or tab >>Young people’s perceptions of and coping with their ADHD symptoms: A qualitative study
2019 (English)In: Cogent Social Sciences, E-ISSN 2331-1886, Vol. 6, no 1, article id 1608032Article in journal (Refereed) Published
Abstract [en]

Purpose. This study aimed to explore how young people with ADHD perceive and cope with their ADHD symptoms in the context of their everyday life. The research also explores relationships between types of perceptions and types of coping. Method. A qualitative, inductive approach using individual semi-structured interviews to elicit and analyse young people’s perceptions of and coping with their ADHD symptoms. Results. Analysis of interviews with 14 young people has shown a variety of perceptions regarding the mechanism behind the ADHD symptoms. Three types of perceived reasons for the ADHD symptoms were found: because there is something wrong with me, because there is a mismatch between me and the environment, because this is my personality. Variation was also found regarding the perceived threat of the symptoms. The results identified three ways of coping with symptoms: following the symptoms, changing the environment, controlling oneself. A possible relationship between type of perception and type of coping was identified. Conclusion. Young people with ADHD perceive and cope with their symptoms in various ways. Perceptions of and coping with ADHD may relate to each other. This study highlights the importance of identifying young people’s perceptions of their ADHD in order to understand their attempts to cope with it.

Keywords
ADHD in children, coping, perceptions, lived experiences, qualitative method
National Category
Educational Sciences Psychology
Research subject
Education
Identifiers
urn:nbn:se:su:diva-168299 (URN)10.1080/23311908.2019.1608032 (DOI)000466189000001 ()
Projects
Living with ADHD: How children with ADHD and their parents perceive and cope with the disorder
Available from: 2019-04-29 Created: 2019-04-29 Last updated: 2022-02-26Bibliographically approved
3. Utilizing the Common-Sense model of illness representations to explore children’s perceptions of, and coping with ADHD
Open this publication in new window or tab >>Utilizing the Common-Sense model of illness representations to explore children’s perceptions of, and coping with ADHD
2021 (English)In: Journal of Mental Health, ISSN 0963-8237, E-ISSN 1360-0567, Vol. 30, no 2, p. 216-223Article in journal (Refereed) Published
Abstract [en]

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
National Category
Psychiatry Educational Sciences
Research subject
Education
Identifiers
urn:nbn:se:su:diva-179553 (URN)10.1080/09638237.2020.1714010 (DOI)000511799000001 ()
Available from: 2020-03-02 Created: 2020-03-02 Last updated: 2022-01-31Bibliographically approved
4. Managing children with challenging behaviours. Parents’ meaning-making processes in relation to their children’s ADHD diagnosis
Open this publication in new window or tab >>Managing children with challenging behaviours. Parents’ meaning-making processes in relation to their children’s ADHD diagnosis
2020 (English)In: International journal of disability, development and education, ISSN 1034-912X, E-ISSN 1465-346X, Vol. 67, no 4, p. 376-392Article in journal (Refereed) Published
Abstract [en]

This study investigates parents’ lived experiences of having a child diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). The aim was to explore parents’ meaning-making processes in relation to their children’s ADHD with a focus on understanding the impact that receiving a diagnosis had on the parents’ perceptions of, and ways of managing, their children’s challenging behaviours. Drawing on data collected through semi-structured interviews with 12 parents, we carried out a content analysis of the parents’ accounts, producing a range of categories describing different aspects of the parents’ meaning-making processes in relation to their child receiving an ADHD diagnosis. Five conceptual categories were identified, describing components of a process of adaptation through which the parents – using the diagnosis as a tool – were able to transform feelings of distress over their difficulties in managing their child’s challenging behaviours into feelings of being able to cope with these challenges of integrating the ADHD diagnosis into everyday family life. This research suggests that understanding the long-term processes involved in parents’ meaning-making of an ADHD diagnosis is important and can open up a pathway to developing initiatives to support parents in dealing with their child’s challenging behaviours in everyday life.

Keywords
Adaptation, ADHD, children, coping, diagnosis, meaning-making, parenting-stress, qualitative research, self-management
National Category
Educational Sciences Psychology
Research subject
Education
Identifiers
urn:nbn:se:su:diva-168283 (URN)10.1080/1034912X.2019.1596228 (DOI)000463974800001 ()
Projects
Living with ADHD: How children with ADHD and their parents perceive and cope with the disorder
Available from: 2019-04-29 Created: 2019-04-29 Last updated: 2022-02-26Bibliographically approved

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