1. A real connection Andrew Jahoda

2. Making a connection with you Why therapy? Communication barriers. What’s important about therapy for people with intellectual disabilities? Insights from i) a group based anger study run by ‘lay therapists’, and ii) a study examining clients’ perspectives of CBT. Tensions between listening and helping – finding the right balance.

3. Why therapy? Mental ill-health – point prevalence 41% ( PBs - 22%; psychosis - 4% (SIR=10); mania - 1% (SIR=42); dementia >65yrs - 20%; Depression more enduring; psychosis 14% remission in 2 yrs) Life experience – a story to tell (my PhD concerned stigma and people with learning disabilities)

4. News. Disabled complain of widespread bullying. People with learning difficulties face widespread harassment. Nearly nine out of 10 people with learning difficulties have been bullied and many face harassment on a regular basis, says a mencap report. Stephen Hoskin’s horrific murder.

5. Psychological therapies: Cognitive Behavioural Therapy (CBT) The most commonly used psychological therapy for emotional problems in the UK is Cognitive Behavioural Therapy. Like all other psychological therapies of this nature it is essentially a talking therapy. CBT Looks at the meaning we attach to our experiences. Focus on the links between the way we think, feel and behave. A collaborative approach ‘working together’ on problems. Homework tasks – practise new ways of thinking.

6. CBT: The Good and the Challenging Good: gives people a voice; works with their experience and views of their world. Challenge: demands a certain level of communicative ability to understand what the therapist is saying and express one’s thoughts and feelings.

7. Managing cognitive / communication difficulties (Paul Wilner).

8. Overcoming communicative challenges – the client. Overall ability – mild to moderate intellectual disability. Particular abilities - Ensuring that people have particular abilities to take part in therapy – e.g. making the link between thoughts and emotions (Dagnan and Chadwick, 1997). Socialising into the model - Beginning therapy by teaching particular skills.

9. Overcoming communicative barriers – the therapist. Including… Simple and clear language Use memory and comprehension checks Repetition and structure Use recent memories and time anchors Use different media - visual and not just verbal Make the communication about key topics more immediate and less abstract e.g. through the use of role play

10. CBT – simply a matter of making it accessible? Ensuring people are able to take part in therapy and adapting the process are important considerations. The temptation to simplify the approach is often taken rather too literally. This might mean adopting a more educational or skills based approach – and being more didactic – but does this necessarily promote better understanding (Dagnan and Chadwick, 1997)?

11. Moving towards a shared understanding of therapy. AND This makes an assumption of what people want from therapy and how they understand the process. Proper communication is about achieving a shared understanding but how is that to be achieved if we don’t know what each other want? ‘Non specific factors’ key to therapeutic success in general adult mental health work.

12. What works: an example from practice with lay therapists where the aim was to build on existing relationships. The ‘I’m In Control’ Group: An evaluation of a manualised anger management intervention for people with mild to moderate learning disabilities. Paul Wilner, John Rose, Andrew Jahoda, David Felce, Biza Stenfert- Kroese, Kerry Hood, Pamela MacMahon

13. Introduction Anger is a problem for many people with learning disabilities. It is estimated that between 11 and 27% of the LD population will be experiencing problematic anger at any one time (Rose et al 2008).Anger is a problem for many people with learning disabilities. It is estimated that between 11 and 27% of the LD population will be experiencing problematic anger at any one time (Rose et al 2008). Problematic anger is often associated with verbal and/or physical aggression. These problems are common among people labelled as having challenging behaviour (Benson & Brooks, 2008).Problematic anger is often associated with verbal and/or physical aggression. These problems are common among people labelled as having challenging behaviour (Benson & Brooks, 2008). Consequences of problematic anger include:Consequences of problematic anger include: - exclusion from day services - breakdown of residential placements - involvement with the criminal justice system - negative impact on the psychological and physical wellbeing of the service-user and others

14. Introduction (cont) Cognitive behaviour therapy (CBT) for problematic anger has been proven to be an effective form of intervention.Cognitive behaviour therapy (CBT) for problematic anger has been proven to be an effective form of intervention. However, previous studies have been relatively small, or have lacked an appropriate comparison group, which limits the conclusions that can be drawn from the research.However, previous studies have been relatively small, or have lacked an appropriate comparison group, which limits the conclusions that can be drawn from the research. This study was the first large-scale and comprehensively-evaluated randomised controlled trial (RCT) of any psychological therapy in this population.This study was the first large-scale and comprehensively-evaluated randomised controlled trial (RCT) of any psychological therapy in this population.

15. Study Objectives Main objective: To evaluate the effectiveness of the ‘I’m In Control’ group in reducing levels of reported anger, compared to normal care. The group-based intervention was intended for people with mild to moderate learning disabilities and was delivered in a service setting, by support staff. Plus: Exploring and evaluating the experiences of staff and service-users who participated in the groups.

16. Research Method 30 day services were recruited, each ran one group All participants completed assessment questionnaires. Then groups were randomly assigned to either begin the intervention, or to wait 16 weeks after randomization, all participants completed follow-up assessments Intervention Groups Half the groups started immediately. 12 sessions, usually one per week. Intervention Groups Half the groups started immediately. 12 sessions, usually one per week. Control Groups Half the groups were assigned to wait. Participants received support as usual. Control Groups Half the groups were assigned to wait. Participants received support as usual. 6 months later, all participants completed follow-up assessments again Control Groups Received the group intervention and subsequently completed a final set of follow-up assessments Control Groups Received the group intervention and subsequently completed a final set of follow-up assessments

17. Participants Day services were recruited from 3 research sites: Scotland, England, Wales.Day services were recruited from 3 research sites: Scotland, England, Wales. Service-users were identified from within interested day services, by day service staff in consultation with psychologists.Service-users were identified from within interested day services, by day service staff in consultation with psychologists. Approximately 20% of participants dropped out by the conclusion of the study.Approximately 20% of participants dropped out by the conclusion of the study. 30 day centres 179 participants 179 key-workers 127 home carers

18. Measures We measured:We measured: - Reported levels of anger (Provocation Inventory) - Anger coping skills (PACS) - Frequency and severity of aggressive behaviour (MOAS) - Psychological well-being (anxiety, depression and self-esteem; Glasgow Anxiety and Depression Scales)

19. The ‘I’m In Control’ Group Intervention The ‘I’m In Control’ groupThe ‘I’m In Control’ group - manualized CBT for anger delivered over 12 sessions - manualized CBT for anger delivered over 12 sessions - 2 – 4 lay therapists per group - 2 – 4 lay therapists per group - 4 – 9 service-users per group - 4 – 9 service-users per group - lay therapists participated in training and supervision - lay therapists participated in training and supervision Sessions encouraged service-users to:Sessions encouraged service-users to: - Be aware of situations that triggered angry feelings - Identify physiological & behavioural components of anger (e,g, knowing how your body feels) - Develop skills to control and manage anger, including relaxation strategies, behavioural strategies such as ‘walk away’ and ‘ask for help’, and cognitive strategies such as ‘rethinking the situation’ Activities, discussion, role-play, Hassle Logs.Activities, discussion, role-play, Hassle Logs.

20. Outcomes of the Study Levels of anger Group participants did not report being less angry than those who had not been in a group. However, key workers did report that the group produced a significant reduction in people’s anger. This reduction was sustained six months after the group had finished. Use of anger coping skills Service-users who took part in the group reported greatly improved use of coping skills. This was still the case 6 months after the group was finished. Key workers reported even larger improvements how people who took part in the groups used coping strategies. Again this was sustained 6 months after the group had finished. Home carers also reported improvements in the use of anger-coping skills.

21. What worked? Clients didn’t report feeling less angry, although their key-workers thought their anger had reduced – ABOUT BEING ABLE TO TALK MORE OPENLY ABOUT FEELINGS NOT LESS. However, the intervention appeared effective in increasing use of anger coping skills, and improvements were maintained 6 months after the intervention had finished. Is the ability to talk more openly about one’s feelings a sign of good therapeutic relationships?

22. Qualitative Study 11 service-users and 9 lay-therapists participated in interviews exploring their experiences of participating in the group.11 service-users and 9 lay-therapists participated in interviews exploring their experiences of participating in the group. Service-users’ interviews explored: 1. Individuals’ experiences of participation in the group 2. Aspects that they did or did not find enjoyable 3. The impact of the group on their everyday lives Key themes: 1. What we did in the ‘I’m In Control’ group. 2. What it was like to take part. 3. What difference the group made to my life. 4. Presenting a positive self.

23. Qualitative Study - Clients’ experiences What it was like to take part? The value of the shared experience ‘I worked out that if you’re swopping stories it helps each other out.’ The importance of relationships with the lay therapists ‘It’s managed to put the staff in, like, to trust them a bit more with me.’

24. Qualitative Study – Lay therapists The ingredients of success - taking on the ‘therapist’ role “These six people always come and talk to me, no matter where I am, how many times I talk to them, how many times I see them … which to me is a great satisfaction. I get pleasure out of knowing that I’ve helped them, even if it’s only a little bit.” “It’s as if we have all been through something together and we all seem to have a bond that was formed, not that you treat anyone different but it just feels different with that group (…) we’re more open and honest with each other.”

25. Qualitative summary Relationships were key to both the service users and lay therapists. The lay therapists were not clinically trained and versed in therapeutic language perhaps makes their observations more persuasive. Service-users valued the opportunities to talk and be listened to and to demonstrate their new skills. More than talking - also about learning new ways to cope with their feelings and develop a different sense of self. ‘Not in a bad mood in the house now. (…) Eh…up in the morning. Not mad. Not mad. Not else. Stop the crying. (…) Mum not write in the book (…) Mum not want to tell (key- worker).’

26. Are these findings unique to an anger management group? Examining process issues in individual CBT for individuals with mild intellectual disability referred to clinical psychology with anxiety, depression or significant anger problems (Andrew Jahoda, Carol Pert, Biza Stenfert-Kroese, Dave Dagnan, Peter Trower, Bronwen Burford, Mhairi Selkirk).

27. Participants who took part in a video review of their CBT sessions 18 clients took part (9 women and 9 men). Participants referred to clinical psychologists with a range of emotional problems: anger, anxiety and depression.

28. Video review study - a qualitative approach. Video review method. Part of a larger process study, Jahoda et al., (2009). Carried out in Scotland and England. 6 experienced therapists (Clinical Psychologists). Formulation driven approach. Fidelity checks carried out by CBT expert. Aims To examine clients’ own experiences of CBT sessions. Pilot the video review method with this client group.

29. Method and Analysis Video Review Method devised by Bronwen Burford (2003). 1. Clients viewed tapes of their therapy sessions and told the researcher when they thought something important was happening. 2. After watching the whole video, the researcher then showed the person the sections of tape they had highlighted, and asked the person to comment on what was happening. 3. There are no ‘right or wrong’ responses, and nor is the person is not restricted in what they say Analysis Data was analysed using Thematic Analysis

30. Why bother? Because…. 1. Supportive aspects of therapy Valuing a positive therapeutic relationship. Feeling supported and understood. Valuing the chance to talk about feelings. 2. Changes linked with a CBT approach. Working together on problems. CBT approach leads to better understanding of problems and better coping skills. Positive impact on self identity and self efficacy. Two strands to the findings.

31. FINDINGS. What clients say about CBT (1) “I’ve never ever told anybody else, I wanted to talk about that. I feel really, really glad with (T). It felt really good, I trust (T). “ I enjoy the sessions with (T), they’re good. And I felt that (T) understands how I feel. More or less that I’ve got feelings.” A positive therapeutic alliance. Trust Empathy

32. What clients say about CBT (2). “T’s good to talk to and that’s helpful. I come here to get a bit of help.”. “…..It’s kind of helped me cope with life. Because before (T), before I came here I’d actually nobody to talk to really.” Talking about problems is helpful. Enjoy talking Having someone to talk to.

33. What clients say about CBT (3). “Never heard myself say that before. Never done in my life. I’ve always hurt people and caused grief. I’m seeing a different me” “When I was watching myself I was thinking is there anything wrong with me or not? People say there is and I say there’s not. But when you see that I don’t know what to think.” Learning about myself. Views of self.

34. What clients say about CBT (4). “I actually felt like an adult in there a fully mature adult”. “Like (T) said (to me) you did all the hard work, I’ve listened to you and you’ve explained things to me, thing is you did it yourself, all the hard work.” Learning about myself (2). Self worth. A greater sense of competence.

35. What clients say about CBT (5 ). “(T) went through all my anger….breaking it down into smaller separate, you know what I mean. Trying to find out in depth what causes it. Basically (T’s) helping me, I really am finding it’s helping?” “The way (T’s) talking and that, helps you understand how you feel. That’s good.” Learning about my problems and coping better. Breaking problems down. Understanding emotions

36. Once again relationships and expertise are the main points highlighted Key ingredient is a positive therapeutic relationship. Due to a lack of supportive relationships? Feeling supported and understood. A chance to talk about feelings. A collaborative CBT approach may help clients to build confidence in their abilities. See themselves differently. Better understand their problems. An expert relationship.

37. BUT: Change can be seen as fragile. Change might not last. A common view expressed by service users we interviewed was that therapy had been helpful but that the benefit would not last. I just don’t want to stop seeing (therapist) because it’ll take some time to get to see her again.

38. What have we learned about therapeutic work and achieving a real connection? Where to now?

39. And finally – back to story telling In common with other people receiving psychological help for mental health problems they found the chance to talk beneficial (Pesale and Hilsenroth, 2009). What I perhaps didn’t appreciate – the importance of being listened to, particularly for people who often aren’t listened to properly or taken seriously.

40. Making a real connection. How to listen properly: Awareness of context, for example people with intellectual disabilities rarely refer themselves for help. Achieving a shared understanding and a shared focus is not only about what you talk about but how you talk with someone at an emotional level. Shared activity is also a way of building trust and a common bond – it shouldn’t be an intellectual activity. Therapeutic expertise does not work if it creates an emotional distance.

41. Confiding relationship to a real sense of change – continuing tension. Not like talking to a friend. Enjoyed a sense of making real changes and a growing sense of control in their lives. But also a sense that such change is difficult to maintain, perhaps because many factors in their daily lives remain outwith their control. Perhaps build in a component of therapy to promote a sense of self-efficacy. The therapist to work alongside significant others (family and workers), to support change and recognise achievements in everyday life.