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The Impact of Tourette's Syndrome on the Functioning of Young Australians: the Roles of Tic Severity, Comorbid Diagnoses and Attachment to Peers

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The Impact of Tourette's Syndrome on the Functioning of Young Australians: the Roles of Tic Severity, Comorbid Diagnoses and Attachment to Peers ResearchOnline@JCU This file is part of the following reference: O’Hare, Deirdre Aileen (2015) The impact of Tourette's Syndrome on the functioning of young Australians: the roles of tic severity, comorbid diagnoses and attachment to peers. PhD thesis, James Cook University. Access to this file is available from: http://researchonline.jcu.edu.au/48285/ The author has certified to JCU that they have made a reasonable effort to gain permission and acknowledge the owner of any third party copyright material included in this document. If you believe that this is not the case, please contact [email protected] and quote http://researchonline.jcu.edu.au/48285/ “The Impact of Tourette’s Syndrome on the Functioning of Young Australians: The Roles of Tic Severity, Comorbid Diagnoses and Attachment to Peers.” Thesis submitted by Deirdre Aileen O’Hare November 2015 For the Degree of Doctor of Philosophy In the Department of Psychology James Cook University Statement on the Contribution of Others I wish to acknowledge the invaluable and ever constant assistance of Prof. Edward Helmes, my primary supervisor; the early assistance of Dr. Todd Jackson during the process of the development of the research proposal for this study, ethics approval and confirmation; Dr. Kerry McBain and Dr. Beryl Buckby as secondary supervisors and for their support and encouragement; Prof. Valsamma Eapen, from the University of New South Wales, as an associate supervisor, and for providing expertise in the area of Tourette’s; and Prof. John Reece for ongoing statistical consultation. The specific contribution of coauthors of the research reports included in this thesis is indicated below. Specific Contribution of Co-authors of Publications Included in this Thesis Publications Nature and Extent of the intellectual input of each author, including the candidate for all papers Deirdre O’Hare1, principal author 1. “Recognising and treating tourette’s in young and primary researcher, responsible australians: A need for informed multidisciplinary for the development of the research support” questions, research design, data collection, data analyses, interpretation Australian Psychologist (in press) of the findings and first authorship of 2. “The impact of tic severity, comorbidity and all research reports and conference peer attachment on quality of life outcomes and presentations functioning in tourette's syndrome: Parental perspectives” Edward Helmes1, Primary PhD Supervisor. Intellectual input in the Child Psychiatry & Human Development capacity as primary supervisor of all (october 2015) published doi: 10.1007/s10578- aspects of the research; review of 015-0590- findings and reviews of reports 3. “Factors impacting the quality of peer 1 relationships of youth with tourette’s syndrome” Kerry McBain , Secondary Supervisor. Intellectual Input, BMC Psychology, (september, 2015) published particularly regarding qualitative doi: 10.1186/s40359-015-0090-3 analyses and initial coding of qualitative data study Two; review of 4. “The importance of screening for early findings and reviews of reports indications of emotional symptoms in youth with tourette’s syndrome” Valsamma Eapen2, Associate Submitted- Under review Supervisor. Specialist intellectual support regarding Tourette’s; review 5. “Youth with tourette syndrome: Parental of findings and reviews of reports; and perceptions and experiences in the australian corresponding author for reports context” John Reece3, Statistical Consultancy; Submitted- Final review review of findings and reviews of reports 6. “Tourette’s syndrome and mother-child attachment: A qualitative exploration”. Rachel Grove2, Editorial support and For submission November 2015 manuscript preparation for submissions as noted 7. “Differentiating between the impact of tourette’s and comorbid diagnosis on quality of life and functioning” For submission November 2015 1. Department of Psychology, College of Healthcare Sciences, James Cook University, Queensland, Australia 2. School of Psychiatry, University of New South Wales, Sydney, Australia 3. School of Psychological Sciences. Australian College of Applied Psychology, Melbourne Declaration of Ethics The research presented and reported in this thesis was conducted within the guidelines for research ethics outlined in the National Statement on Ethics Conduct in Research Involving Humans (2007), the Joint NHMRC/AVCC Statement and Guidelines on Research Practice (1997), The James Cook University Policy on Experimentation Ethics, Standard Practices and Guidelines (2001). The proposed research methodology received clearance from the James Cook University Experimentation ethics Review Committee (Approval number H4380). Acknowledgements I wish to acknowledge the generosity and candor of the participants who volunteered for this research. I extend my deep gratitude to the TSAA and the TSAV for their non-financial assistance in advertising these studies, and for their help in the recruitment of participants and the distribution of surveys. I particularly wish to thank Robyn Latimer, president of the TSAA, and Judi from the TSAV, for their personal support and interest in this research. I sincerely hope that this project is of benefit to the Australian TS community, and I salute the “parent-warriors” who work so hard to improve the lives of their children. Thank you also to Dr Douglas Woods and colleagues for permission use the PTQ and Dr James Varni and associates for permission to the use of the PedsQL. Every reasonable effort has been made to gain permission and acknowledge the owners of copyright material. I would be pleased to hear from any copyright owner who has been omitted or incorrectly acknowledged. To the wonderful friends and associates who helped in the recruitment of the control group, I am deeply grateful. To Ali, Peter, Lotte and Michael, who participated in trustworthiness checks for the coding of the qualitative data, and to Rachel who supported my efforts to publish, I extend my deep appreciation. To my mother, my family (both present and in the hereafter), and friends who had faith, patience and provided endless support over the past four years, I extend my deepest gratitude. Finally, and most significantly, without the emotional and financial support of my beloved husband Mike, none of this work would have been possible. To him I owe everything. Dedication For Bov Mike To all who live bravely and proudly with Tourette’s Syndrome Abstract This research was conducted in response to the under-involvement of psychologists in the provision of care and advancement of research regarding Tourette’s syndrome (TS). The major goal was to improve current understandings of individual differences in outcomes for youth with this distressing disorder. It represents one of the largest controlled studies of TS, is one of few to employ a community-based sample, and is the first comprehensive study of TS in young Australians. The research was conducted in two parts. Study One was an Australia- wide, controlled, mixed-method survey-based study. Participants were parents of youth with TS (n = 86) and parents of typically developing peers (n = 108). Study Two was a qualitative, interview-based study of the attachment relationships and functioning of youth with TS, as perceived by their biological mothers (n = 22). The ethical and practical constraints associated with including young children in this study, limited participation to primary caregivers. In a novel application of attachment theory, the study tested the hypothesis that individual differences in outcomes would be predicted by the security of the peer attachments of youth with TS. Tourette’s was conceptualised as a stressor with the capacity to disrupt or impair the quality of the youth’s close relationships. Multivariate analyses in Study One study confirmed that youth with TS experienced significantly lower health-related quality of life and functioning across all domains (assessed with the Pediatric Quality of Life Inventory, PedsQL) and higher rates of psychopathology, behavioural and social dysfunction (measured by the Strengths and Difficulties Questionnaire, SDQ) relative to controls. Also as expected, the clinical presentation of TS group youth mirrored the phenomenology of the disorder reported in the international literature. The major hypothesis was also supported. Multivariate results indicated highly significant (p< .01 - p< .001) associations between insecure peer attachment (classified by the Attachment Questionnaire for Children) and negative outcomes of all measures (PedsQL & SDQ), with converse findings for secure attachment. Also as predicted, youth with TS experienced a highly significant increased rate (threefold) of insecure peer attachment in comparison with controls. The further prediction that secure peer attachment would moderate or mediate the adverse impact of tic severity and comorbid disorder, however, received limited support. Also as predicted, increased tic severity and having a comorbid diagnoses (72% of the TS group) were both strongly associated with negative outcomes on all measures. No interactions were found between tic severity, comorbid disorder and insecure peer attachment, indicating that each variable independently affected the individual’s quality of life. Further analyses of the impact of individual comorbid diagnoses on quality of life and levels of dysfunction, however, revealed restricted and highly disorder specific effects. This analysis also determined the exclusive contribution
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