Adolescents' Perceptions of Their Peers with Tourette's Syndrome: Does A Brief Anti-Stigma Intervention Help?

Background and aim: Tourette's syndrome is a neurodevelopmental condition characterised by tics. It is a condition that has been stigmatised by the public. School age children and especially adolescents often experience rejection from their typically developing peers due to their symptomology which could hinder school inclusion and social participation. Therefore, there is a need for implementing interventions to target typically developing peers' inaccurate knowledge about TS, and their negative attitudes. There is also a paucity of studies that explore the motivation of peers who stigmatise against people with TS. Understanding stigma and its underlying causes, however, is vital to develop effective interventions that can minimise and help to eventually eradicate stigma. The aim of the thesis is therefore three-fold: firstly, to understand how individuals with TS were perceived by typically developing adolescents. Secondly, based on these attitudes, to develop a tailor-made anti-stigma intervention; and thirdly to evaluate the effectiveness of the developed intervention within a secondary school classroom setting. Method: A sequential mixed-method design was used. Qualitative data were collected to capture tic-free adolescents' motives, and reasoning involved in the exclusion of individuals with TS. These findings were then used to design a tailor- made intervention and research measures. A randomised cluster control trial with a mixed-model design was used to determine the impact of the developed intervention on tic-free adolescents' awareness of Tourette's syndrome, attitudes, and behaviours towards individuals with TS. Data were collected at three time points: pre-intervention, post-intervention and 9 weeks after its implementation. This is the first intervention that was specifically designed for adolescents and with an assessment at a follow-up stage. Results: The qualitative study indicated that adolescents understanding about the condition was construed from misconceptions, unfamiliarity and unanswered questions. Furthermore, people with TS were either perceived as being deprived of agency and strength or as deserving pity, and in need of support. These findings helped design the intervention which was implanted on Year Ten students in a school in the South East. Upon completion of the intervention, positive changes were recorded relating to students' awareness, attitudes and behavioural intentions. Tic-free adolescents were more willing to embrace diversity within the classroom and rejected previously held notions of ableism. However, only changes in awareness were maintained at the 9-weeks follow-up. Conclusion: Tailor-made interventions can contribute substantially to preventing consolidation of unfavourable attitudes towards individuals with TS. Future research should however place emphasis on how these positive outcomes could be maintained over time. Implications of these findings for school curricula and mental health policy, as well as suggestions for future research, are discussed

Stigma and Adults with Tourette’s Syndrome: “Never Laugh at Other People’s Disabilities, Unless they have Tourette’s—Because How Can You Not?”

Tourette’s syndrome (TS) is a condition that has been stigmatised and mocked in contemporary society, yet little is known about the subjective experience of those directly affected by it. Guided by Public and Patient Involvement (PPI) a mixed method design was used for this study to explore the experience of stigma in adults living with TS in the UK. A total of one hundred and ninety-nine adults participated in a cross-sectional online survey using an adapted version of the Discrimination and Stigma Scale (DISC-12) and the Perceived Quality of Life (PQoL) scale, twenty of whom were also interviewed using a semi-structured interview schedule. Quantitative findings indicated that participants experienced discrimination in numerous life domains; most prominently in education (75.4%), social life (71.4%), public transport (60.8%) and employment (54.3.%). The PQoL of adults with Tourette’s was found to be negatively correlated with both Enacted and Anticipated Discrimination from the DISC-12 scale. Qualitative findings illustrated the pervasive nature of TS stigma, which expanded beyond micro-interactions, and which could be observed at a structural level. The peculiar impact of disparagement humour in the construction and promulgation of “othering” individuals with TS was also highlighted. Concealment and self-stigma were mechanisms commonly utilised by individuals to manage their “spoiled identity”, inhibiting active and collective responses to stigmatisation. The study highlights how TS stigma acts as a barrier to social and economic participation for adults with the condition and helps identify factors that need to be considered when developing anti-stigma strategies

Experiences and meaning of loneliness beyond age and group identity

Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the ‘essence’ of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experiences and meaning of loneliness among a heterogeneous group of adults. In depth interviews were conducted with a diverse sample of 37 individuals, aged 18–71 years who had experienced loneliness in the UK. Using thematic analysis, four themes were identified: Loneliness as lacking, loneliness as abandonment, lingering loneliness and the unspoken and trivialised experience of loneliness. Our analysis signals the complexity of loneliness did not necessarily conform to one-dimensional conceptualisations of the phenomenon. Loneliness is linked to interpersonal relationships, but also associated with participants’ roles and identity within society. Thus, society exacerbates and creates loneliness. Implications for the support and provision of loneliness are also discussed

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers

"I'm not being rude, I'd want somebody normal" Adolescents' perception of their peers with Tourette's syndrome; an exploratory study

Background: Tourette’s syndrome (TS) is a highly stigmatised condition, and typically developing adolescents’ motives and reason for excluding individuals with TS have not been examined. Aims: The aim of the study was to understand how TS is conceptualised by adolescents and explore how individuals with TS are perceived by their typically developing peers. Method: Free text writing and focus groups were used to elicit the views of twenty-two year ten students from a secondary school in South East England. Grounded theory was used to develop an analytical framework. Result: Participants’ understanding about the condition was construed from misconceptions, unfamiliarity and unanswered questions. Adolescents who conceived TS as a disorder beyond the individual’s control perceived their peers as being deprived of agency and strength and as straying from the boundaries of normalcy. People with TS were viewed as individuals deserving pity, and in need of support. Although participants maintained they had feelings of social politeness towards those with TS, they would avoid initiating meaningful social relationships with them due to fear of “social contamination”. Intergroup anxiety would also inhibit a close degree of social contact. Participants that viewed those with TS as responsible for their condition expressed a plenary desire for social distance. However, these behavioural intentions were not limited to adolescents that elicited inferences of responsibility to people with TS, indicating that attributional models of stigmatisation may be of secondary importance in the case of TS. Implications for interventions to improve school belonging among youths with TS are discussed