Background graded Logo transparent Merged_dropshadow_UniGeneral Making a difference: adapting psychosocial interventions for people with Intellectual Disabilities Logo transparent Structure for today’s talk • •Do diagnoses take account of the experience and context of people’s lives? •Life experience and the nature of mental health and inter-personal problems •Some implications for psychological therapy and CBT in particular •How do people with intellectual disabilities view therapy? •Concluding thoughts • A picture containing building, indoor, court, stone Description automatically generated By and large – in relation to psychological therapies – my talk relates to work with people who have moderate to mild intellectual disabilities in particular. Although I will touch on other points. Logo transparent Phenomenology (Edmund Husserl) • •People’s lived experience • •How people negotiate their lives as actors in the world Talk today will focus on those with mild to moderate intellectual disabilities. Edmund Husserl Logo transparent DSM-5 Diagnostic and Statistical Manual of Mental Disorders APA ICD-11 International Statistical Classification of Diseases and Related Health Problems WHO DSM 5 caused quite a stir in the UK – concerns that pathologise aspects of everyday life. Mental behavioural and neurological disorders. Also ICD -11 has recently been produced, with a section on problem behaviours. Love child – very positive aspect of this is that diagnostic criteria have helped to produce epidemiological evidence about the high prevalence of mental health problems experienced by people with intellectual disabilities. Logo transparent Controversy Classification of behaviour and experience in relation to functional psychiatric diagnoses: Time for a paradigm shift BPS are one of the bodies who have argued that there are problems with diagnostic systems like DSM 5 and ICD 11 and have argued for a paradigm shift. Logo transparent Criticisms included… •Marginalising knowledge from lived experience: Service users often emphasise the primary significance of practical, material, interpersonal and social aspects of their experiences, which only constitute subsidiary or ‘trigger’ factors in the current system of classification (Beresford, 2013). Perhaps linked to phenomenology: •How people experience and negotiate their social worlds. Amongst their criticisms is the following statement Logo transparent Relevance for people with intellectual disabilities •Can we assume that depression or psychosis mean the same for someone with a mild or a more severe intellectual disability? • •What about behaviour problems? Surely easier to assume that we can look across classes of behavioural difficulties presented by different individuals? • • • When we rely on self report of so many symptoms of diagnoses like depression – how can we assume that depression or psychosis is the same for someone with a mild or profound disability? Perhaps it should be easier with a more clearly operationally defined behaviour like aggression? However, even here we have challenges because the same actions are can occur for quite different reasons. Logo transparent Aggression? Reactive vs Instrumental Intent to cause harm vs defensive / escape Two types of aggression: Reactive (show picture of Louis Suarez) and instrumental, where people use aggression as a means of achieving goals? Another theoretical distinction is between proactive offensive acts of aggression and defensive acts / linked to escape. How might this differ between those who are able to empathise with or predict the reactions of others with those who lack the ability to act with intent. Logo transparent Is there a risk we miss something if we don’t properly check on people’s own experience? Logo transparent Logo transparent Phenomenology Life experience and the nature of mental health and inter-personal problems Is there something distinct about people’s experience / development that we should take into account? I do recognise the importance of diagnosis – without that couldn’t do the vital epidemiological. We have heard persuasively from people like Eric Emerson about how people with intellectual disabilities’ are particularly vulnerable to the impact of deprivation – with higher rates of reported psychopathology than other people who experience these environmental / developmental challenges – a corrosive effect. But what about the content of people’s difficulties? Logo transparent Young people’s worries. A screenshot of a computer Description automatically generated with medium confidence •Young people with intellectual disabilities (26) and group of typically developing young people (26), aged 16-21. •Groups matched for gender and socio-economic status. •Participants asked about twelve broad areas of worry, taken from themes highlighted in previous research with adolescents. •Visual stimuli used to illustrate the different kinds of worry. After talking about the worries evoked by the stimuli, participants were asked to rank their main four worries. Also opportunity for ‘other’ worries to be raised. They posted each of their worries – had to be able to give an example. Then they were asked to pick out their top 4 worries and then to rank them. Logo transparent Logo transparent Different kinds of worry. •The two groups generated different kinds of worry. • •The only overlap was in terms of failure, and even then the nature of the two groups’ worries in this regard were rather different. • •While the non-disabled group talked about specific failures and their implications (driving test, school exam), those with intellectual disablities talked about a general sense of incompetence. I feel like a failure all the time, it’s just like the useless thing again in a way, because I can’t get college right, I can’t get friends right…I want to join clubs but it’s like friends, are they going to judge me for how I am so it’s the same kind of roller coaster up here and down there, will I fail? A picture containing person Description automatically generated Even the one area of overlap was spoken about differently by those with an intellectual disability. Logo transparent Young people with intellectual disabilities: oruminated more about their worries [t(34.95)=2.34,p=0.025]. owere significantly more distressed by their worries [t(50)=4.96,p<0.001]. ohad significantly higher self-report anxiety scores between groups [t(50)=2.247,p=0.029]. ohad significantly lower self-efficacy scores than the typically developing young people [t(50)=2.79,p=0.008]. o o Group differences Logo transparent What does this tell us? •People’s worries seem to reflect a history of dealing with adversity and their particular social circumstances. •We do not know if such worries increase vulnerability to future mental health problems, but the higher levels of distress and rumination might be negative signs. •Perhaps we look for major life events with people who have intellectual disabilities and sometimes overlook the corrosive effects of more mundane experience. Shape Description automatically generated Could be adaptive in certain ways – or may be a precursor to future problems Logo transparent Phenomenology The emotional challenges of negotiating everyday life. Not static - an active negotiation with the world. Begin to think also about the possibility that people don’t necessarily have a disease process that they have or don’t have but that problems have a developmental history and occur in particular social circumstances – perhaps arising when people lack the ability to deal with particular challenges in their lives. Logo transparent Frequent inter-personal aggression Who are you looking at? This is a friendly comedy character form my home town of Glasgow, adopting a classic and rather challenging ‘what are you looking at?’ pose. He’s the man who lives at the margins of society and is sensitive to other people putting him down and does a remarkable job of maintaining his dignity in the face of all odds. Revolving doors or remitting problems... Logo transparent Submission and aggressiveness. • •In this study we looked at how people with significant problems of aggression (18) view both aggressive and submissive behaviour, as compared to nonaggressive peers (18). • •We wanted to find out what the participants thought the outcomes of behaving both aggressively and submissively in situations of potential conflict might be. • •Presented with vignettes and asked to imagine themselves as the protagonists in the stories where they faced potential conflict and responded i) aggressively, and ii) submissively • • • BB51DB3C Logo transparent Participants’ positive views of aggressive and submissive behaviour. Logo transparent Inter-personal aggression in context •The participants who had problems with frequent inter-personal aggression were more likely to endorse aggressive responses to potential conflict and to find submissive responses intolerable • •How people view themselves in relation to others helps to determine their reactions. •Whether or not emotional regulation or other particular social cognitive deficits play a part in people’s aggressiveness, the difficulties are enacted in a social context. A picture containing clipart Description automatically generated Logo transparent Links to therapy What about psycho-social therapies? Logo transparent Cognitive Behavioural Therapy – an example • •Not just about adapting the technique to make it more accessible also about the content •It means asking the right questions. For example, acknowledging the potential impact of stigma or social exclusion and perhaps acknowledging difficulties relating to someone’s disability •It means not challenging people’s views that are based in reality •It may mean working with people’s sense of self Elephant in the room – a real strength of the work of John Taylor and Ray Novaco. Not about a misrepresentation of the world but its impact on self – or both. Need to know the right questions to ask – or how to open up areas for discussion Logo transparent Involve significant others in therapy Why? •People lack power to generalise therapeutic achievements into their everyday lives • •A reflected self – not just thinking and behaving in ways that cause less distress but also how seen and treated by others Icon Description automatically generated Whether it’s possible or not also depends on the underpinning support and wider service framework.Use the example of Karen – the power to change others’ Logo transparent Zone of proximal development: learning in collaboration. •Vygotsky’s concept of the ‘zone of proximal development’ has been used to describe how to work effectively with people who have psychosis •Not too difficult to easy • •The idea that the therapist is trying to provide scaffolding to help the person achieve change that would otherwise be beyond their reach is helpful vygotsky2.jpg Logo transparent A Video Review Study • What do people with intellectual disabilities make of therapeutic interventions? Logo transparent Participants who took part in a video review of CBT sessions they had taken part in •18 clients took part (9 women and 9 men). • •Participants referred to clinical psychologists with a range of emotional problems: anger, anxiety and depression. • Logo transparent Video review study - a qualitative approach. Video review method. Part of a larger process study, Jahoda et al., (2009). •6 experienced therapists (Clinical Psychologists). •Individual formulation driven approach. Fidelity checks carried out by CBT expert. • Aims •To look at clients own experiences of CBT sessions. •Pilot the video review method with this client group. • A number of different methods but here will talk about a video review method. Part of a larger study looking at process issues. Many different strands of process research. Here we are considering the the clients own unique perspective on therapy. A few different methods were used to explore this and I will focus on a video review method developed by Bronwen Burford. Logo transparent Method and Analysis •Video Review Method devised by Bronwen Burford (2003). • •Clients view tapes of therapy sessions and comment on what they see. •Important that clients were NOT confined by specific questions set by the researcher. •No ‘right or wrong’ response. Analysis Data analysed using Thematic Analysis Can tag the video as often as wish or not at all. •Useful for clients who have difficulty expressing broader views of therapy. Focus on one session. Logo transparent 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 main strands to the findings. Focus on the first of these. Logo transparent 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.” (T is the therapist) A positive therapeutic alliance. Trust Empathy Logo transparent 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. Logo transparent 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. Logo transparent BUT: Change can be seen as fragile • • • •Change might not last. ‘I just don’t want to stop seeing (therapist) because it’ll take some time to get to see her again…’ Text Description automatically generated A complimentary interview study with the participants Logo transparent Making a real difference A tension Private space Life in context A tension – but ways of negotiating this Logo transparent CBT and real life change •Behavioural activation for depression • •Increasing purposeful and meaningful activity, overcoming withdrawal and bringing people in contact with more reinforcing aspects of life • •Key adaptations: the involvement of a significant other and the attempt to make it the beginning of a new pattern of life rather than an endpoint • A person smelling a flower Description automatically generated Logo transparent Concluding thoughts •Ensure psychosocial interventions remain just that • •About working with the whole person in the context of their lives – not a disease entity separate from the person •Aim to achieve change that makes a real difference to people’s lives • •Health promotion as well as dealing with mental ill health building on people’s strengths • Logo transparent Concluding thoughts Adapting interventions: •Still a tendency to fall back on cognitive deficit models, rather than considering cognitive content. • •BUT NOT NECESSARILY ONE THING OR ANOTHER •We still need to consider how people’s intellectual difficulties might interact with their emotional experience. Logo transparent Concluding thoughts •Research on underlying psycho-social factors that contribute to emotional distress or make change difficult • •An engagement with research on process of therapeutic change and also on maintaining change • • Screen Shot 2017-06-20 at 12.02.07.png The content and nature of their experience can still be key to a change process that is motivating and meaningful for the individual. Link to earlier ideas – worry – talk about and acknowledge particular worries ( such as death, no one to talk about sexual matters with), experience of stigma. Working with context an example etc – dealing with anxiety or depression – may be about working with the context of life – Proactive and preventative work – health promotion – rather than picking up problems after. Understanding the developmental trajectory of children and young people and factors that help promote resilience – link to Eric’s talk. Logo transparent Not everyone is included… Diagram Description automatically generated Graphical user interface, text, application Description automatically generated A picture containing person, outdoor, tree Description automatically generated Small single case studies. Logo transparent Thank you! A rocky beach with a body of water in the background Description automatically generated with low confidence