Neurobehavioural Rehabilitation in the Real World

1. The Agony and the Ecstasy Dr Andrew Worthington info@Headwise.org.uk Neurobehavioural Rehabilitation in the Real World

2. Part 1: The thesis

3. An introduction to and critique of contemporary neurobehavioural rehabilitation (Hopefully) an informative tour for professionals working in brain injury but most definitely not a how-to-do-it guide to neurobehavioural rehabilitation in the community

4. Getting to know you Who incorporates neurobehavioural principles into their professional practice? Who asks colleagues to carry out to neurobehavioural procedures? Who has referred to a neurobehavioural unit? Who knows what neurobehavioural rehabilitation is (and is prepared to tell us)!

5. Historical appreciation of the problem �The majority of our patients suffered from outbursts of very vivid emotional rage �the patient�s accident had been a great strain on all relatives, especially to wives and mothers and 61% had needed supportive treatment with tranquillisers and sleeping tablets which had not been necessary previously.� Panting & Merry (1972)

6. �The nature of rehabilitation techniques for patients over and above those required to prevent secondary complications of physical disabilities, which have formed the basis of most rehabilitation to date, will entail various psychological and social therapies, and excursions into the fields of occupational training.� Bond (1979)

7. Oddy et al., (1989) A comprehensive service for the rehabilitation and long-term care of head injury survivors. �There is a small number for patients who exhibit behaviour disturbance of a severity that relatives are unable to manage�for such patients a short-term (e.g. a month) residential unit to house patients and their families in order to assess and begin retraining of the behavioural disturbance is required. The professional team would continue this work on an out-patient basis following discharge. The unit would recognise the importance of dealing with behavioural problems in the client�s living context.�

8. Eames (1989) Head injury rehabilitation: towards a �model� service. �Rehabilitation units for the head-injured should be developed separately from patients with other sorts of disorders and should be located, as far as possible, away from hospitals.�

9. Greenwood & McMillan (1993) Models of rehabilitation programmes for the brain injured adult. �The learning difficulties and other neuropsychological deficits that these patients have means that many elements [of rehabilitation] should not be sited at institutions, but in a natural community setting, to emphasise a move towards independence, minimise problems with generalisation to everyday routine and emphasise the educational and training nature of the service.�

10. An old problem: A new approach Psychiatric approach to behaviour disturbance: Syndrome-based Enduring rather than transitory Dispositional rather than situational Inappropriate treatment Neurobehavioural approach: Acknowledges neurological aetiology Functional approach to behaviour Intervention underpinned by behavioural psychology and neuropsychology.

11. Growth of neurobehavioural rehabilitation 1979 St Andrew�s Hospital: Kemsley Division est. Eames & Wood (1985) 24 patients treated via token economy: �surprisingly good outcome� 1985 Grafton Manor opened Wood (1987) Brain Injury Rehabilitation: A Neurobehavioural Approach Eames & Wood (1989) Models of brain injury rehabilitation Wood (1990) Neurobehavioural sequelae of traumatic brain injury 1990 Brain Injury Rehabilitation Trust

12. Spreading the Word Eames et al., (1996) �Outcome of intensive rehabilitation after severe brain injury a long-term follow-up study.� Wood et al., (1999) �Clinical and cost-effectiveness of post-acute neurobehavioural rehabilitation� Wood et al., (2001) �Neurobehavioural disability and social handicap following traumatic brain injury� Worthington et al., (2006) �Cost-benefits associated with social outcome from neurobehavioural rehabilitation�

13. Moving into the community

14. Why �neurobehavioural lite�? No consensus on what constitutes neurobehavioural rehabilitation Limitations of the evidence-base Expertise is scarce (tends to be concentrated in specialist centres) Lack of comprehensive training External pressures Funding inadequacies Professional resistance to inter-disciplinary working Trends in policy and legislation

15. What defines neurobehavioural rehabilitation � (uniquely)? Post-acute Psychological rather than medically-driven Focuses on organic behaviour disorder Inter or trans-disciplinary Requires a structured environment Emphasises functional, social and behavioural gains as outcome criteria. Modified from Wood & Worthington (2001)

16. Part 2: The evidence

17. How good is the evidence? Group 1 Randomised controlled studies Group 2 Prospective non-randomised cohort studies Retrospective non-randomised case-control studies Group 3 Descriptive single case studies/case reports

18. How good is the evidence? Group 1 Randomised double-blind placebo-controlled studies What is a placebo (�sham� therapy) in this instance? What constitutes an adequate control Randomised allocation to treatment group Therapist blind to allocation? Evaluation of outcome undertaken by rater blind to intervention?

19. Problems with RCTs in neurobehavioural rehabilitation Costly Impractical Unethical? External validity limited by Restrictiveness of eligibility criteria Selection bias (limited to specialist settings) There is a lack of multi-centre trials, meta-analytic studies or even a standardised database (publically owned) on which to carry out the necessary research.

20. Most neurobehavioural services are operated by the independent sector where competition has mitigated against collaborative research and evaluation, and against patient interest.

21. Group 2 Prospective non-randomised cohort studies Retrospective non-randomised case-control studies. Numerous studies have been carried out but all have weaknesses, in terms of small numbers unrepresentative inadequate/inappropriate statistical treatment poor outcome evaluation (esp. transfer of gains) unrealistic / impractical to replicate

22. Group 3 Descriptive single case studies/case reports Constitutes the majority of studies, but again undermined by Selection bias Publication bias Techniques under-specified Limited follow-up (not followed up post-discharge) Difficult to form an overall impression of feasibility

23. Worthington, (2005)

24. Learning from therapeutic failure - the �3 Rs� Inappropriate application of the technique Wrong technique Limitation of the intervention technique Wrong patient Inadequate application of the technique Wrong therapist!

25. Part 3: Challenges applying neurobehavioural rehabilitation in the community

26. Theoretical challenges What about thoughts and feelings? Are they important in (a) genesis of behaviour disturbance (b) mediating behaviour change (c) delivering satisfaction? Even animals form �representations� of stimuli Self-efficacy / mastery (Bandura, 1977) Personal growth (Maslow, 1962)

27. Nisbett & Wilson (1977) We are unaware of what influences our behaviour Unaware we have modified our behaviour Unaware of the one causing the other Implications: The introduction of psychological concepts must complement not contradict basic behavioural principles. Too often well-meaning professionals (and others) undermine rehabilitation by: Failing to appreciate the nature of neurobehavioural disorder Refusing to understand this key point

28. CBT: the enemy within CBT requires � Brain injury causes � Understanding Reduced comprehension of abstract ideas Introspection Diminished self-awareness Logical thinking Impaired reasoning, rigid thinking Articulate expression Memory and conversation problems Intellectual detachment Emotional volatility Motivation for change Apathy

29. Fortunately �..there is little empirical support for the role of cognitive change as causal in the symptomatic improvements achieved in CBT.� (Longmore & Worrell,2007)

30. �Therapy� as retrieval competition Purpose of therapy is to alter the relative accessibility of memory containing positive and negative information. (Brewin 2006) Does not assume distorted thinking Does not propose to substitute a more �logical� thinking style

31. Pre-therapy P1 P2 P3 N1 N2 N3 N4 Post-therapy P1 P2 P3 N1 N2 N3 N4 P5 P6

32. Threats to Neurobehavioural rehabilitation in the real world: lessons from the breakdown of token economy programmes Poor selection of patients Poor selection and training of staff Lack of (psychological) expertise Poor co-operation and communication with administrative personnel Active interference from the community Hall & Baker (1973)

33. Practical challenges Contrary to the �care ethos� Contradicts established methods in neurorehabilitation Many of the techniques are counter-intuitive Gets a �bad press� - seen as cold, inhumane, one-dimensional.

34. Rehabilitation is about learning Neurobehavioural intervention has traditionally been grounded in learning theory and is predicated on the therapeutic efficacy of reinforcement. It works by modifying schedules of reinforcement. All behaviour triggers a response, potentially reinforcing. Therefore if you aren�t doing it right, you�re doing it wrong.

35. Violating neurobehavioural principles A relative telling a client to stop swearing A visitor offering to fetch a member of staff A therapist telling a client they are ignoring them A carer offering to make a client a cup of tea A physiotherapist showing other staff how to �walk� a client with a functional gait disorder.

36. Staff lending money to buy a person additional cigarettes An administrator handing over money to an agitated client A nurse laughing at a disinhibited client. A psychologist offering to discuss client�s aggression with them An support worker expressing disgust at a client masturbating in public.

37. Shifting cultural attitudes to risk Risk Safety

38. Risk aversion in healthcare since �most injuries and their precipitating events are predictable and preventable� the word accident should not be used to refer to �injuries and the events that produce them� BMJ (2001) �Medical advances [mean]today there are vastly increased numbers of ways in which people can make mistakes� Bogner (2004) Misadventures in Health Care

39. The answer?

40. Bring the patient in from the cold �I wanted to be a whole person again and here my whole life was being reduced to medical reports, graphs and charts�like seeing myself examined under a microscope and having scientist clinical describe every broken piece or part� (Quinn, 1998) �Rehabilitation is designed to provide elementary education in living, yet it�s taught in a city where a useful prerequisite is an advanced degree in urban stress management�like learning to ride a bicycle in the Tour de France.� Osborne (1998)

41.

42. Personal beliefs Illness perceptions threat predictability control Illness perceptions predicted 80% of people developing PCS (Whittaker et al., 2007) Relation to coping and insight after severe brain injury: 3 clusters: Low control High salience High optimism Medley et al (submitted)

43. Quality of life: difficult to predict? �Objective� measure of disability (DRS) Symptoms of anxiety and depression Positive well-being questionnaire Satisfaction with Life scale

44. Is risk-taking rational? Can we predict risk-taking on the basis of a rational analysis of decision making?

47. Biases in risk assessment

48. Training needs

49. Quo vadis? Any suggestion of the death of Neurobehavioural rehabilitation is exaggerated; it has evolved as a paradigm. In the light of multiple threats to the integrity of this approach the challenge is to re-assert core principles and methods, develop an evidence-base of sustainable outcomes, and increase the body of skilled practitioners.