Psychoeducation in Tourette syndrome. Tara Murphy, Clinical Psychologist Tourette syndrome Clinic, Great Ormond Street Hospital

Transcription

1 Psychoeducation in Tourette syndrome Tara Murphy, Clinical Psychologist Tourette syndrome Clinic, Great Ormond Street Hospital

2 Tourette syndrome Why educate? Who to educate? When to educate? How to educate and in what way?

3 Psychoeducation Cornerstone to all intervention Individual work Group work School-based study Charity and Voluntary Sector

4 Systemic work in Psychoeducation Each family receives 1-2 individual sessions Contact is made with each school Basic facts & multi-sensory approaches Somewhere to contact (wax and wane) Relevant literature & Problem-solving Working with community services Refer to TA and TSA / TA website

5 What is Tourette Syndrome? Neurobiology Genetics Tourette Syndrome Environment Psychology O Connor, 2005

6 Are tics conscious? Controlled Responses Choice Automatic Routines Aware (Doing this talk) Habits / Tics (walking, eye saccades) Unaware Compulsive Rituals (dry mouth, hair pulling, tics) No Choice Impulsive Reflexes (Heart beating) (O Connor, adapted)

7 Leaflets for Parents Basic Facts Medication Prognosis Attending a TS Clinic Depression Anxiety ADHD

8 Leaflets for Children Basic Facts Psychological management Explaining TS to other people TS and the Future Anger issues Obsessive Compulsive Disorder

9 Leaflets for Schools Basic Facts Tic management in the classroom ADHD Depression Learning Difficulties Obsessive Compulsive Disorder Bullying

10 Previous Group Work in TS Outcome and efficacy indicated by positive qualitative feedback and regular attendance Good value for money Measures (pre & post) have shown no significant changes on formal measures (Lambert & Christie,1998). Interventions have focused on one aspect of difficulty such as developing social skills (Lambert & Christie, 1998) Best to have a closed number of sessions & a ceiling on numbers (Wigley et al 2000) Anger Management study (Sudkolsky et al 2009)

11 Community Group Work CAMHS service Open invite group to all carers Psycho-educational component Group environment A Service User Representative Diagnosis, Neurology, co-morbidity and treatment. Educating schools, managing other s lack of knowledge, OCD and medication.

12 Community Group Work Children s Group Ice breaker Aims What is Tourettes? Strategies for coping

13 Evaluation Assessed Understanding Anxiety Feel isolated Increase knowledge Recommendations Preference for information earlier Meeting other people Current information Siblings group Ongoing meetings 2-3 x per annum

14 Tourette outpatient service in Hungary Vadaskert Child and Adolescent Psychiatric Clinic, Budapest First Tic-Tourette s Outpatient Clinic (since 2001) Over 600 families 2 TS camps / year: psychoeducation, role-play sessions, experience (art) and adventure therapy Monthly Tourette s day : 2 sessions, 1 parents and 1 children 2 webpages: Hungarian homepages: ( ) a blog for patient to chat and ask anything from the expert (

15 Tourette outpatient service in Hungary TS CAMP Goals: Accepting and coping with the disorder Reinforce the participants integration and adaptation Improve their self esteem Therapeutic techniques: Psychoeducation Creative art, self-expressive methods Adventure therapy Results: They can formulate, recognize and express their emotions, thoughts and problems more easily, therefore self monitoring develops Mastery Group therapy adventure therapy includes a horse riding, archery, hiking, adventure activity park, sport games etc.

16 Psychoeducational Group at Great Ormond Street Hospital Facilitators aims: Group intervention for young people with TS To enable young people to meet others with similar difficulties Children s aims: Learn more about Tourette Syndrome Be able to meet other people with tics Find ways to become more independent Find ways of disguising tics Find ways to cope with feeling down Find things to build self-esteem To be able to say what you think about anything Learn ways to keep your temper

17 Participants and Group Sessions Tourette Syndrome & Tic Management Self-esteem building School & bullying Working with Anger Obsessive compulsive problems Review, quiz & feedback

18 Therapeutic Approaches Cognitive approaches Behavioural approaches Social learning approach (e.g. modeling) Developing Problem-solving Independence building Toolkit booklet

19 Toolkit

20 Toolkit

21 Toolkit

22 Toolkit

23 Supporting Learning Difficulties Working memory & attention difficulties Facilitating all types of learning Maintaining focus Mixed ability levels Social difficulties

24 Audit TS group questionnaire Visual-analogue scale (VAS) assessing TS-related experiences Feedback from young people & parents

25 I could explain to someone else about TS Very confident Not confident at all I feel that I can manage my tics well Very well Not well I think I know enough information about TS.. Not enough All I want to know I feel that having TS affects my life.. Not at all A large amount I think that TS is a very big part of me.. As big as possible Very small

26 Pre & Post VAS Greatest change reported in amount of information known about TS Most participants felt that they could control their tics fairly well to very well on both reports Positive change in how much they thought having TS affects their life (i.e. less affect on life) Some change in confidence reported explaining and defining TS to a stranger Participants reported that they now felt that their TS was a greater part of them

27 Feedback - Parents Parents rated the group as very / extremely helpful Greater involvement Reminder letters / more frequent groups One parent thought the group could be developed: My son has enjoyed each session.i would like something like a discussion group on a regular basis, perhaps once every 3-6 months. Monthly sessions of 90 minutes over 6 months was reported to be too few sessions: The group should carry on, as the children who have the same condition have bonded a friendship as they feel at ease with one another

28 Feedback - Young People All participants rated the group as very helpful or extremely helpful The areas they rated as being most enjoyable were: discussion, meeting other people with TS, working in groups The aspects they said that they learnt most about were: how to deal with having TS, how to cope better when I get angry learnt about life skills I m not the worst person with Tourettes to be more confident to talk more strategies for worries the toolkit

29 Conclusions Alternative to waiting lists for one-to-one therapeutic work Young people benefited from strategies to support learning in the group Outcome and efficacy are difficult to assess Feedback suggested that more sessions (8) would be helpful

30 Psychoeducation for Professionals Marcks, et al.(2004) 35% of psychologists knew of HRT, <10% knowing how to implement it. Only 14% of medical doctors had any knowledge of HRT 46 % wanted to know more Woods, et al. (2010) Adults (N = 672) and parents (N = 740) 17% of adults and 24% of children had received BT for tics treatment utilization barriers to care factors influencing the person with TD to forego BT for their condition Problems seeking treatment A knowledgeable treatment provider Side effects, and cost psychologists are less likely to be consulted than neurologists, psychiatrists and GPs many treatments with limited empirical support are being utilized a limited number of service providers knowledgeable about TD

31 Psychoeducation for Professionals Since May 2010, contacts received - 29 from parents, 14 from professionals & 11 from teachers Service users want information on - TS, BTs, strategies to support children at school, adults at work... TS Network, since Currently have 40 Members Psychologists, Specialist teachers, Psychiatrists, Occupational Therapists, CBT Therapists, you? Based in Child Psychiatry services & Adult psychiatry services (inpatient and Outpatient) Special education settings Private Practice Updated via / Teleconferencing Possibilities for future roles (Supervision)

32 Discussion How can psychoeducation be systemic / multimodal? Timing ( Gorman et al, 2010) What change is expected? Acceptance Consistent, trusted message Need to educate ourselves