The social care needs of adults with Tourette's syndrome: An exploratory study

Introduction

There is a lack of research about the adult social care needs of adults with Tourette’s Syndrome (TS).

Adults with TS may experience mobility difficulties, unemployment and/or social isolation, and may therefore require social care.

There is also little evidence of the impact of social care on people with TS when this support is provided and when it is not.

Objectives

This study aimed to address this gap in the evidence by understanding the difficulties adults with TS experience (e.g. personal support needs, employment, relationships) and their access to adult social care. It also aimed to explore whether they felt they needed or wanted to receive social care.

Methods

The research team conducted online questionnaires in which 68 individuals with TS took part:

• 31 male and 35 female
• only 54.4% of the sample were employed compared to 75.7% of the general population in March 2018
• 41.2% of the sample were receiving disability benefits or adult social care
• 88.2% disclosed that the tics had caused physical pain or damage to them.

Participants were a self-selected sample of adults with TS who were invited to take part in the study via websites and social media platforms, including Tourette’s Action, Tourette FocusUK/Europe and ADHD Wise UK.

This was followed by one-to-one in-depth interviews with 16 of those individuals:

• 12 males and 4 females
• 5 were receiving disability benefits and/or social care.

Findings

• Many adults with Tourette’s Syndrome (TS) have everyday needs that are not being met. Due to the debilitating effects of the tics they may require help with simple everyday chores
• The fluctuating nature of the tics led some participants to worry whether adult social care (ASC) assessments were adequate to capture the debilitating nature of having TS. This
  requires knowledge about TS, which they felt individuals working in ASC do not always have
• Because of stigma attached to receiving social care many adults with TS relied on friends and family for financial and emotional support
• The severity of the tics may not be the only determinant of the quality of life of adults with TS, which appears to be conditioned on being employed or not and the extent to
  which the participants had experienced discrimination
• Social care workers need to have specialist knowledge in relation to TS, its psychosocial consequences and understanding of its nature so they can respond holistically to people’s needs.

Resources

Journal paper

Malli MA, Forrester-Jones R, Triantafyllopoulou P (2019) “Tourette’s is a lonely place”: an interpretative phenomenological analysis of the personal experience and identity of adults with Tourette’s Syndrome, Journal of Developmental and Physical Disabilities, 31, 819–845.