The Social Care needs of Adults with Tourette's syndrome
Research type
Research Study
Full title
The Social Care needs of Adults with Tourette’s syndrome: An exploratory study
IRAS ID
231281
Contact name
Melina Aikaterini Malli
Contact email
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
Tourette’s syndrome (TS) in adults can be associated with mobility difficulties, unemployment issues, lower socioeconomic status, poorer psycho social 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.
We want to find out if and how adults with TS suffer additional difficulties due to their diagnosis, e.g. personal support needs, employment, relationships in addition to the burden that the condition itself may impose on them (e.g. physical pain caused by tics). If they do, we would like to know how social care services help them in their lives, and how they see themselves. We would also like to know how much these services cost. Similarly, we want to know what life is like for people with TS who don’t receive any social care. Once we have got a picture of the social care needs of adults with TS we can make suggestions on how social services can improve the support they give to people with TS.
The overall question is Do people with Tourette’s need and want social care, from their own perspective?
We will explore the difficulties adults with Tourette’s syndrome experience e.g. transport, financial, emotional well-being, and whether they access social care services by using an England-wide online survey.Next, we will interview adults with TS who have access to social care and those who do not have access to social care so that we can understand how the receipt and absence of social services impacts their lives and social identity.
Adults with TS will be asked to participate in a short survey which will ask questions about what their needs are and what care they receive. This will be advertised on national Tourettes Action, a non-profit UK charity. We will also interview 10 adults with Tourette’s syndrome who access social services and 10 adults with Tourette’s who do not access social services.REC name
Social Care REC
REC reference
17/IEC08/0041
Date of REC Opinion
14 Nov 2017
REC opinion
Further Information Favourable Opinion