The impact of Tourette's Syndrome on the functioning of young Australians: the roles of tic severity, comorbid diagnoses and attachment to peers

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 of TS to impaired social functioning and peer relationships problems. Furthermore, a high rate of undiagnosed or subclinical level mood disorder was evident in TS group youth. As depression has been found to be the strongest predictor of highly adverse outcomes for those with the TS by adulthood, this result is of particular clinical interest. The two exploratory qualitative studies revealed the impact of TS on the attachment relationships and attachment-related functioning of youth with TS, using methodology designed for the study. Personality (classified into "Big Five" traits) was the most commonly identified factor to impact peer relationships. Extraversion and Agreeableness facilitated the friendships for all youth, whilst higher rates of Neuroticism impaired the peer relationships of TS group youth. The explanatory theories of TS group parents were also more complex, variable and included more "non-personality" related factors than those of controls. Factors enhancing secure attachments for TS group youth included successful psychological adjustment to diagnosis; low level of self-consciousness and adaptive cognitive appraisal of their symptomatology; the ability to defend themselves against the negative behaviour of others; the ability to manage tics on occasions; and having the acceptance and understanding of peers. The strongest barriers to friendships were the negative behaviour of peers (bullying, teasing and social rejection); the experience of severe tics; the inability to control tics at critical times; non-tic related or comorbid symptoms such as impulsivity, cognitive rigidity and obsessive-compulsive behaviours; social anxiety; maladjustment to diagnosis of TS; effort required to suppress tics when in company of friends; and high levels of self-consciousness. The findings from Study Two illustrated the powerful influence of TS on the quality of the Mother-Child relationship (MCR), by determining the unique "closeness" of the MCR and directing many maternal roles and functions within this relationship. The study also identified the multiple threats TS posed to the security of the MCR. These included high levels of maternal fear, anxiety, stress, and caregiver burden; relationship ruptures associated with negative aspects of the child's symptoms, behaviours and developmental transitions; reduced social support; and maternal over-involvement. The impact of the child's diagnosis of TS, however, appeared to strengthen the mother-child bond. The study also revealed the stress associated with parenting a child or adolescent with TS, with participants' experiences mirroring those of parents of children with other serious chronic disorders. Finally, the integrated results of the research facilitated the development of an inclusive, predictive quality of life model for youth with TS. Findings also informed the development of guidelines for psychological interventions to improve the quality of the youth's attachment relationships. It was concluded that improving the attachment relationships of youth with TS is an important treatment goal that should be considered alongside the management of tic severity and comorbid disorder. Broader recommendations for policy, services and advocacy were also made in response to current findings of continuing stigma, and the inadequacy of TS services and supports in Australia