1. HILARY HOWELL SYSTEMIC PSYCHOTHERAPIST/CLINICAL PSYCHOLOGIST BIRMINGHAM hilary.howell@me.com Children with Learning Disabilities and Challenging Behaviour An exploration of meanings and relationships

2. Who, What and Why? 2 Clinical Psychologist and trained as a Systemic Psychotherapist Many years of working with people with learning disabilities including children many of who are labelled with challenging behaviour What I noticed clinically A strong interest in relationships and meaning A strong interest in power and de-valuation Research… Put your money where your mouth is!

3. Overview: Themes from the literature Description of my project IPA Methodology Design Data Discussion 3

4. Themes from the literature: Extensive quantitative research on behavioral approaches Beginnings of systemic approaches: Anecdotal Most research is quantitative and individualistic Very little on relationships and meaning making Families report being dissatified 4

5. Josh and his 'dissatified' dad Is a 10 year old young man who is tall for his age and has a 'wicked sense of humour'. He has a diagnosis of severe LD and severe autism He lives at home with his Mum, Dad and older brother, Harry (12) His Dad is a barrister, Mum has given up her career to look after Josh and they live in their own home. They are White British Josh lives at school during the week, has additional respite and is described as very challenging

6. From the interview with Josh's dad Josh's parents are waiting to hear from the LEA which secondary school has offered Josh a place. Josh's Mum and Dad have described ringing the LEA repeatedly for months and are always told, “We will tell you on Monday”.

7. 7 Josh's Dad said: “And you get told, ‘I’ve got 600 letters to write.’ Yeah, 600 letters in a year and you’ve done none of them. ((laughs)) Well, certainly done none of the special school ones, we’re told that the mainstream ones have gone out. So they’ve got 600 pupils that they have to write the letter for, so you soon … and I’m not decrying other people because Harry, who’s the brother, has got dyspraxia and dyslexia, so a lot of them are people with dyspraxia and dyslexia and things like that. Some of them, they’re not going to special schools, so only a small proportion are going to special schools, and an even smaller proportion are going to special units for residential. Why isn’t that prioritised? Because it’s a bigger transition for them than for the other people”.

8. ….it is not sufficient to focus only on the child or the child within the family; it is also necessary to consider the family within the larger social, economic and political contexts. A critical aspect of this wider system is, of course, the service provision structure. Keen and Knox 2004, p. 56 8

9. Project Description I often worked with children with moderate to severe learning disabilities and ‘challenging behaviour’ I was interested in:- How do people understand these behaviours? In what ways might these understandings influence the solutions tried? If people have different ideas about causes and solutions how does that influence their relationships? What might this mean for everyone? 9

10. Methodology: IPA IPA offers an established, systematic, and phenomenologically- focused approach to the interpretation of first-person accounts. IPA is a meaning-focused, qualitative method, which is committed to understanding the first-person perspective from the third-person position, so far as is possible, through inter- subjective inquiry and analysis. (Double Hermeneutic) Our understanding is constrained by our cultural context and historical specificity (Michael Larkin presentation) 10

11. How IPA fits with 'being' systemic IPA is concerned with unravelling the relationship between what People think (Cognition) People say (Account) People do (Behaviour) It is situated at the 'light end' of social constructionist continuum People 'constitute' rather than 'construct' their social worlds Reflexivity is crucial Eatough and Smith (2007) Interpretive Phenomenological Analysis in C Willig and W Stainton Rogers (eds) Handbook of Qualitative Research Methods in Psychology. London: Sage 11

12. Design: IPA uses Purposive Sampling Semi structure interviews: 4 children referred to an inner city specialist Camhs LD Team for concerns about 'challenging behaviour'.  Parents  Team members  Teachers  (Carers) Total of 13 interviews completed. 12

13. IPA: How to …. Semi structured interviews Transcribe the interviews Read and re-read the transcriptions Note initial thoughts, associations, questions, use of language, absences, labels etc. (Left margin) Emergent themes (right margin) Cluster and label themes Further transcripts 1) start from scratch or 2) use first analysis to code further transcripts 13

14. IPA: The reality …. Semi structured interviews Transcribe the interviews Read and re-read the transcriptions Note initial thoughts, associations, questions, use of language, absences, labels etc. Emergent themes... over and over Cluster and label themes.. massive Organise and re-organise themes as you begin to write up 14

15. Data analysis... 4 short excerpts from interviews with: Josh's Mum, CAMHS Team member (Clinical Psychologist), Support worker from the Residential Unit at school Josh's teacher.

16. Exercise: Please read the text and note initial thoughts, associations, questions, use of language, absences, labels etc. Discuss with your partner, what might be the concerns of each person? Are there any themes coming out from these descriptions? How might you think about the relationships between people?

17. Emergent Themes Theme 1: Loving and affectionate descriptions of the children Theme 2: Challenging behaviours: meanings and action a) Understanding the behaviour is a precursor to managing b) Autism as an explanatory and volitional category 17

18. Emergent Themes Theme 3: Life is difficult with a challenging child a) The children behave in overpowering and terrifying ways b) Strain on family life and family relationships c) Worry about what the future will bring Theme 4: Life is so different with a challenging child Theme 5: Tense relationships within systems 18