Research Team: Dr Melina Malli, Prof Rachel Forrester-Jones (University of Bath) and Dr Paraskevi Triantafyllopoulou
Tourette’s syndrome (TS) in adults can be associated with mobility difficulties, unemployment issues, lower socio-economic status, poorer psychosocial functioning and diminished quality of life. However no studies, to our knowledge, have assessed these additional needs and the extent to which this population is accessing and receiving social care.
To understand the difficulties adults with TS experience and their access to social care. We also explored how receiving care affects an individual’s everyday life, personhood and embodiment. Our objective was to provide a preliminary and in depth picture of the social care needs of adults with TS in order to inform current policy and practice.
The study was small scale and exploratory. An online survey was used as well as in-depth interviews from a sub-sample; 10 interviews with those who receive care and 10 interviews with those who do not.
Three super-ordinate themes emerged from our qualitative study:
1. “incorporating Tourette’s syndrome into self” revealed two divergent ways in which TS was merged into the participants’ self-identity either by reconciling with it or fighting against it.
2. “interpersonal interaction” covered issues relating to negative and supportive ties as a result of their condition
3. “the solitude of Tourette’s syndrome” described the loneliness that stems from the condition
The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdrawal and self-stigma.
The full article can be accessed: https://link.springer.com/article/10.1007/s10882-019-09676-2