Forrester-Jones, Rachel

Malli, Melina

Triantafyllopoulou, Paraskevi

E-space: Manchester Metropolitan University's Research Repository

Malli, Melina and Forrester-Jones, Rachel and Triantafyllopoulou, Paraskevi(2020) The social care needs of adults with Tourette’s Syndrome. ResearchReport. University of Kent.Downloaded from: https://e-space.mmu.ac.uk/627891/Version: Published VersionPublisher: University of KentPlease cite the published versionhttps://e-space.mmu.ac.ukThe social care needs ofadults with Tourette’sSyndromeUniversity of Kent RESEARCH FINDINgSMany adults with Tourette’sSyndrome (TS) have everyday needsthat are not being met. Due to thedebilitating effects of the tics theymay require help with simpleeveryday choresThe fluctuating nature of the tics ledsome participants to worry whetheradult social care (ASC) assessmentswere adequate to capture thedebilitating nature of having TS. Thisrequires knowledge about TS, whichthey felt individuals working in ASCdo not always haveBecause of stigma attached toreceiving social care many adultswith TS relied on friends and familyfor financial and emotional supportThe severity of the tics may not bethe only determinant of the qualityof life of adults with TS, whichappears to be conditioned on beingemployed or not and the extent towhich the participants hadexperienced discriminationSocial care workers need to havespecialist knowledge in relation toTS, its psychosocial consequencesand understanding of its nature sothey can respond holistically topeople’s needsImage courtesy of Tourette’s ActionThere is a lack of research about the adult social care needs ofadults with Tourette’s Syndrome (TS). Adults with TS may experience mobility difficulties,unemployment and/or social isolation, and may therefore requiresocial care. There is also little evidence of the impact of social care on peoplewith TS when this support is provided and when it is not.This study aimed to address this gap in the evidence byunderstanding the difficulties adults with TS experience (e.g.personal support needs, employment, relationships) and theiraccess to adult social care. It also aimed to explore whether theyfelt they needed or wanted to receive social care.ONLINE SURVEyThrough an online survey the researchteam assessed the impact of Tourette’sSyndrome (TS) on the physical, social,occupational and psychologicalfunctioning of adults with TS and theirquality of life. The findings suggest that many adultswith TS have a relatively poor quality oflife. However, no correlation was foundbetween the severity of their tics and theperceived quality of life in adults with TS.This means that mild tics are notnecessarily associated with a betterquality of life and adults with mildsymptomology may still assess their ticsas disruptive for their life.  Furthermore, the quality of life in adultswith TS was not conditioned bysociodemographic variables such asgender and age, but was to some degreedependant on being employed or notand the extent to which the participantshad experienced discrimination. Recipients of disability benefits and/orsocial care reported higher rates ofimpaired functioning in relation to theircounterparts that did not receive socialcare and/or disability benefits. They alsoreported a lower quality of life in relationto adults with TS that were not receivingsocial care and/or disability benefits. Thismight suggest that adults with TSexperience a negative impact on theirlives as a result of a lack of adequatesupport. MethodsThe research team conducted online questionnaires in which 68individuals 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 adultsocial care• 88.2% disclosed that the tics had caused physical pain ordamage to them. Participants were a self-selected sample of adults with TS whowere invited to take part in the study via websites and socialmedia platforms, including Tourette’s Action, Tourette Focus-UK/Europe and ADHD Wise UK. This was followed by one-to-one in-depth interviews with 16 ofthose individuals:• 12 males and 4 females• 5 were receiving disability benefits and/or social careTOURETTE’S SYNDROME Tourette's Syndrome (TS) is a hereditary neurodevelopmental disordercharacterised by tics – sudden uncontrolled movements and/or sounds.Multiple motor and at least one vocal tic must be present for at least a year,during which time the severity of the tics fluctuate, to be diagnosed with TS. TS has a prevalence of 0.77% in school-aged children, with prevalencehigher in boys than girls.80% of people with Tourette’s have other comorbidities (for example,obsessive compulsive disorder, attention deficient hyperactivity disorder).Tics often reduce and in some people disappear by adulthood.i FINDINgSBACKgROUND(1) American Psychiatric Association(2013) Diagnostic and StatisticalManual of Mental Disorders FifthEdition (DSM-V), American PsychiatricAssociation, Arlington, VA.(2) Knight T, Steeves T, Day L, et al.(2012) Prevalence of tic disorders: Asystematic review and meta-analysis,Pediatric Neurology, 47, 77–90.FINDINgSINTERVIEWSThe interviews looked at whether individuals with TS needed social care and how the condition had impacted their socialidentity and sense of self.The main themes that emerged from the interviews included: n The practical needs of adults with Tourette’s syndromeParticipants attested that the tics weresometimes debilitating and they required helpwith simple everyday chores in the house likecooking: So like if I'm preparing a meal with knifes and my arms are likelunging out or throwing things. I put down that knife and I have toask [name] to come, my wife to come and do it for me. (Participant 1)In addition, the severity of thetics caused pain or mobilitydifficulties and made it verydifficult for adults with TS tolive independently: But there are parts of like the physical sides of Tourette's which can be quitedangerous for the person to not have someone there to help them at times. So, youhave these tics that are almost looking like seizures and people could like break limbsand bones and things like that. I have had to have [my wife] sit on me before or torestrain me from kind of like the tic attack. (Participant 3)However, these needs were not always apparentduring the adult social care assessment. Aparticipant describes how social care workers arenot aware of the fluctuating nature of the ticsand worries arise in relation to tic-free periods:Reviews and assessments are stressful and you usually get adifferent person each time who hasn’t read your file andespecially as I have no speech and have to type everything ittakes ages … and they do not understand that the tics come andgo. Sometimes they stop for a long time … what then?(Participant 4)n The shame and desperation of asking for helpParticipants were hesitant about asking for any form of help asthey thought it would affect their social identity and makethem feel less human: And then there is a part of ourselves that feels lessof a person because of asking for the help.(Participant 2)But they also pointedout the shame that islinked to receivingdisability benefits:…keep my affairs very private and it's because of the stigma attached to benefits. It's somethingthat I just don't like to discuss or get into with people. So that's another thing that keeps mesort of separated from people. Because I don't want people to judge me or you know … andthen if they know that I'm on ESA … it's like well why, what's wrong with you? (Participant 5)As difficulties arising from the condition are met by theirfamily and friends, participants felt that only people thathad poor social networks should ask for social care orbenefits:I think as well it depends on if people haven't got a goodsupport network around themselves. You know they haven'tgot the friends and the relationships there to support them.(Participant 14)However, bestowing the responsibilitiesof a carer to family members is notalways appropriate and feasible. Aparticipant also discussed that receivingsocial care would mean losing the ideathat things could get better:FINDINgS n The social exclusion of Tourette’s syndromeParticipants experienced loneliness.Childhood and adolescent memoriesof being singled out, victimised ormistreated because of their TS areparticularly poignant examples of howinvoluntary isolation occurred:I was kept in the … I was hidden inthe cupboards and the rooms. Iwas never taken out into public. Iwas even kept away from my ownfamily except from mygrandparents. (Participant 7)The interviewees were also oftenexcluded from the workforce.Participants described how, from theirviewpoint, employees failed orrefused to make reasonableadjustments which in turn inhibitedthem from becoming employed orsustaining a job:Imagine in pubs and working in abar and stressful nights and stufflike that and you start ticcing andpeople start asking questions,poking fun of you drunk, so, youknow…And you try and speak toyour employer about it … ‛I needto stop right now, I need to pullmyself away or go home orsomething because it's gonnamake me worse’. It's just a bigblow down, it really is. And theydon't understand that, and theydon't care either and they don'tbelieve they have to care.(Participant 14)Many participants pointed out thatthere was a lack of social careresources for adults with TS. Althoughthey maintained that social andemotional support was available forchildren with TS and their parents,resources for adults were limited andcould not be easily accessed. WhilstTS is not a condition restricted tochildhood, the participants assertedthat there was no continuity of careand that individuals with TS were at ahigh risk of failing to transitionsuccessfully to adult services:At the age of 16, I was justpushed over the edge and told toget on with life. I've not had anyinquiries or contact from anyoneregarding it … since the age of 16.That was it. That was the end ofmy care as far as anyone wasconcerned. (Participant 15)In addition, participants felt that theirsocial support needs were notadequately addressed. They did nothave access to support groups thatwere specifically for adults with TS,and subsequently, rarely had thechance to meet and befriend otheradults with the same condition whomight have lived through similarexperiences and might be able toprovide them with information aboutthe condition:A lot of information they [relevant] were providing was mainlygeared towards children withTourette's Syndrome and parentsthat have children that haveTourette’s. And there was notmuch for adults, so I have to say …I had to figure out a lot of thingsall by myself. (Participant 9)As I want to do things on my own and go out on my own, but I am also soglad of it as without it things would be much worse. It helps me cope withthis crazy situation, because it is crazy and difficult. Before receiving socialcare I felt that if I accepted it I would be giving in, well giving in in hopingthings could improve. (Participant 9)n Adults with Tourette’s Syndrome (TS) mayexperience difficulties in everyday chores, havemobility difficulties and experience pain thatmakes it difficult for them to live independently.However, they may be hesitant to access supportbecause of the stigma attached to receiving it,including disability benefits and/or social care.They may even be struggling to accept theircondition or be in denial of the reality andhesitant to ask for help. Participants wereconcerned about the knowledge andunderstanding adult social care staff had aboutTS. n As tics fluctuate in severity and frequency adultsocial care assessments may not be adequate tocapture the debilitating effects of having TS.Participants were concerned that during tic-freeperiods adult social care practitioners could notunderstand the severity of their condition.   n The sense of impaired functioning in adults withTS might be determined by more than the coresymptomology of TS. Social care practitionersshould be aware of the psychosocial challengesrelated to living with TS. The study indicates thatalleviating the severity of the tics is notnecessarily adequate; emphasis should be placedon reducing the tic related impairment in orderto improve the quality of life of adults with TS.   n Adults with TS may experience feelings ofisolation, and stigma due to their condition. Theymay be excluded from the workforce due toenvironmental factors such as employers’attitudes, and their refusal to provide reasonableadjustments. Social care workers need to havespecialist knowledge in relation to TS and itspsychosocial consequences. Most importantly,they need to have a knowledge andunderstanding of the nature of TS so they canrespond holistically to people’s needs.n There are gaps in the transition betweenchildren’s and adults’ services. Social care shouldprepare for a smooth transition to adult serviceswith details of the anticipated treatment andservices that the young person will require. CONCLUSIONS & IMPLICATIONSCOMMENTSThe study suggests that the emotional needs ofpeople with Tourette’s are not adequately met andthat the practical financial needs are met by familymembers and friends. A member of the advisorygroup commented:   “Adults with Tourette's come this far probably withoutsocial care in some area and a lot of them don't knowthat there are aspects that they can get help with. Theyshould”.“This is the first study of its kind and reflects the lives ofso many adults living with TS. Whilst the social careneeds for adults is crucial it is very difficult to accessleaving so many isolated and suffering from enhancedanxiety. Society has to understand the neuro-developmental conditions that will affect peoplethroughout their lives and recognise that they need helpto remain productive members of society”.  Suzanne DobsonChief Executive, Tourette’s ActionRESEARCH TEAMDr Melina Malli, University of Kent (Principal Investigator), now Universityof OxfordProfessor Rachel Forrester-Jones, University of BathDr Paraskevi Triantafyllopoulou, University of KentAll enquiries should be addressed to Melina Malli atmelina.malli@phc.ox.ac.uk. The research team is most grateful to all those who provided professionaladvice and guidance throughout the project and to all those whoparticipated in the study.The School for Social Care Research was set up by the National Institute for HealthResearch (NIHR) to develop and improve the evidence base for adult social carepractice in England in 2009. It conducts and commissions high-quality research.NIHR School for Social Care ResearchLondon School of Economics and Political ScienceHoughton Street WC2A 2AETel: 020 7955 6238Email: sscr@lse.ac.uksscr.nihr.ac.ukThe study represents independent research funded by the National Institute for Health Research (NIHR)School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and notnecessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care,View publication stats

The social care needs of adults with Tourette’s Syndrome

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The social care needs of adults with Tourette’s Syndrome

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