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Dr Alick Bush and Dr Gemma Griffith

Workshop - What do people with intellectual disabilities and challenging behaviour say about the services they receive? Implications for developing supports. Dr Alick Bush and Dr Gemma Griffith. Outline of the workshop. 1. Context of the work

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Dr Alick Bush and Dr Gemma Griffith

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  1. Workshop - What do people with intellectual disabilities and challenging behaviour say about the services they receive? Implications for developing supports DrAlick Bush and Dr Gemma Griffith

  2. Outline of the workshop • 1. Context of the work • Meta-synthesis of qualitative studies- experiences of people who have experienced Restrictive Practices • Development of model to understand the cycle of challenging behaviour in residential settings • Workshop- Implications for Psychologists

  3. Context • Winterbourne View- Joint Improvement Plan progress and expectations • RCN – DH guidance on Reducing Restrictive Practices • publication 3 April 2014 • NICE Challenging Behaviour Guidelines • Consultation draft due November 2014 • Final guideline due May 2015 Recognition of need to promote least restrictive interventions with central role for Service Users

  4. “I’m not a patient, I’m a person”The experiences of individuals with intellectual disabilities and challenging behaviour: A thematic synthesis of qualitative studiesGriffith, G.M., Hutchinson, L., & Hastings, R. P.Published in: Clinical Psychology: Science and Practice

  5. What is qualitative research? Attempts to ‘get under the skin’ of peoples experience (e.g. what is it like for people with learning disabilities [LD] to live in supported accommodation?) Many different types of qualitative methods… For this research, we looked at studies that interviewed or observed people.. AND that analyzed and interpreted the data in a systematic way.

  6. What is a meta-synthesis of qualitative studies? Our Question: What do people with LD and challenging behaviour have to say about their experiences of support services? A systematic search of the literature to find all studies meeting criteria. To take stock of the research conducted so far, and to bring it together in a higher-order qualitative analysis to find new meanings. The aim is not to simply ‘merge studies in a kind of averaging process’. (Walsh & Downe, 2004, p. 209)

  7. Inclusion criteria • Participants had a LD, we did not exclude on the basis of having additional diagnosis e.g. ASD • Were reported to engage in challenging behaviour (not including sexual offending) • The study was about participants’ experience of, or a researcher observation of, receiving services or supports. • Participants were 18 years old or above.

  8. Methodology (1) • First, we extracted the result sections of each of the included studies, which were read multiple times. • Each line was given a code e.g. the extract: “It were cos’ I felt angry, and I used to cut.” was given the code ‘anger as reason for self-harm’. • Similar codes were brought together in a table and made ‘master’ themes, and subthemes. We made one master theme table per study 4.The synthesis was conducted only after all studies were analysed in this way. 5. Looked for similarities and differences, as well as drawing together a narrative encompassing all studies

  9. Methodology (2) • After we made a master table for all studies, these were synthesised together into one table which incorporated all studies • Most complex stage. 3rd order interpretation. The researchers draw together a narrative encompassing all themes. Process dependant on judgement of researchers 4. 5. Looked for similarities and differences, as well as drawing together a narrative encompassing all studies

  10. Demographics (1) 163 participants. 105 were male, and 49 female. Gender unknown for 9 participants Fourteen studies were conducted in the UK, two in the USA and one in Canada 11/17 studies reported participants age (range 18-76) 8/17 studies reported level of LD; 45 mild LD 25 mild to moderate LD 20 severe LD

  11. Demographics (2) 97% were either living in a residential placement – or were interviewed about their past experiences of residential placements • 96 in supported residential facilities • 53 in secure residential facilities or hospital settings • 5 ‘Others’ (family home, independently, “shelter”) • 9 missing data

  12. Four Themes • Imbalance of power • Participant’s causal attributions about challenging behaviour [CB] • Experiences of restrictive interventions • Opportunities for improvement.

  13. Cycle of challenging behaviour Participant views of the cycle of challenging behaviour within residential placements “I wished I was dead. I tried anything to get out [to leave residential placement]”1 Dislike of residential placement/Imbalance of power “People get pissed off living here. That’s why a lot of people kick off”2 Restrictive Intervention Trigger event (Aggression) OR Coping mechanism (Self-harm) “When you have got people holding you, you kick off more than you have done”3 Engage in challenging behavior “If we want a drink and they [staff] tell us ‘no’ then we kick off”5 (Aggression) “Whatever I’m sad about it’s steam coming out”6 (Self-harm) “Sometimes it [restraint] is necessary and sometimes it isn’t”4 1MacDonald et al., (2011; p. 49) 2Fish and Culshaw (2005; p. 99) 3 Sequeira and Halstead (2001; p. 468) 4Fish and Culshaw (2005; p. 104) 5Jones and Kroese (2006; p. 52) 6Harker-Longton and Fish (2002; p. 143)

  14. Theme 1: Imbalance of power (1) An underlying theme that seemed to be related to everything participants talked about was that they did not feel in control of own lives, although this was rarely explicitly acknowledged in the original research studies. Daily, pervasive things: e.g. not being able to turn loud music down. “[service user] said ‘drink’ and was told he could have some when he was finished” Very difficult situations “ [staff were] Laughing and joking and punching me at the same time”

  15. Theme 1: Imbalance of power (2) Participants spoke of imbalance of power was most often in their relation to support staff. 1. Not in control of their immediate environment ‘I don’t like people comin’ into my room and tellin’ me what to do, saying ‘Well, you should do this, and you should do that’ [mimics authoritarian voice]” “I was really annoyed ‘cos they said I can go home and then they changed their mind” 2. Not in control of the direction of their lives “They are drawing up my guidelines, they’ll tell me though, not ask me”

  16. Theme 2: Participant’s causal attributions about challenging behaviour The atmosphere of living placements were described as unpleasant and spoken about in very negative terms. E.g. radio on too loud, other service users being noisy, felt infringements on their liberty, belongings removed from bedroom, “I can’t go out of the apartment, we get in trouble” Violence: MacDonald et al., (2011) commented that “violence was a part of everyday life” Some participants were afraid of other service users, some had been physically hurt or bullied by others. Very few explicitly linked their stressful living circumstances to the reasons they engaged in challenging behaviour

  17. Staff attitude: a trigger (2) For those who engaged in aggressive behaviour. Main reason given for why they were aggressive was a specific incident, often with staff. A consistent report was that some support staff were rude, bad-tempered, authoritarian, and “not bothered” “If we want a drink and they tell us ‘no’ then we kick off. Staff wind people up” “You’ve got something on your mind and staff’s like not listening, you like play up and they don’t listen”

  18. Self-harm as coping (3) Those who engaged in self-harm were more elaborate about reasons than those who engaged in aggressive behaviours. Past events such as sexual, physical, or emotional abuse. Self-harm was always reported as an intensely emotional experience, described as a relief from overwhelming distress “Whatever I’m sad about it’s steam coming out” “Your body gets addicted (…) when you get angry, your body expects to be cut.”

  19. Theme 3: Experiences of restrictive interventions (1) Majority felt that restrictive interventions served a purpose: “Stop me from getting hurt” “To make sure I didn’t hit or kick” Some thought some staff used them as a punishment or control. “It’s stupid things for someone to be restrained about. I mean if you were going to attack someone well that’s alright, but restraining you just for the hell of it.” Some participants had limited understanding. Some did not understand that restraint would stop once they stopped their challenging behaviour.

  20. Theme 3: Experiences of restrictive interventions (2) What do physical interventions feel like? “It bloody hurts” “People sitting on my legs and it hurts my legs” “Oh aye, it’s painful. You squeal and squeal but they just hold you down” Emotional discomfort; fear, anger, desperation, upset, anxiety, and sadness. Nightmares. “It’s awful, when they restraint you it’s awful. Nurses and doctors say you’re awful” “When you have got people holding you, you kick off more than you have done”

  21. Theme 3: Experiences of restrictive interventions (3) Unethical or abusive practice: It was difficult from the reports to ascertain whether participants were reporting properly conducted restrictive practices, or unethical practice, although some are clearly unethical. “They just hold you down and hit you. Sometimes they put you in a dirty bath” “‘We’re going to the pub’ they tell you when you’re in seclusion”

  22. Theme 3: Experiences of restrictive interventions (4) Special Observation: Self harm Invasive: “They check your pockets, check your socks, totally degrading, things like that, open your mouth” Ineffective: “Don’t they know after all this time it’s not who’s with me, it’s whether I want to or not” Increases stress at a vulnerable time: “They’ve said ‘we want you off a level 3 [special observation] immediately because we’re not happy following you round the flat’” “Vicious circle”

  23. Theme 3: Experiences of restrictive interventions (5) Medication In one study, only 7/20 people could say why they took particular medications for their challenging behaviour “My temper” “To help my nerves” Most deferred to advice from doctors, rather than take an active role “You’re my doctor, it’s not up to me.”

  24. Themes 1-3:Cycle of challenging behaviour Participant views of the cycle of challenging behaviour within residential placements “I wished I was dead. I tried anything to get out [to leave residential placement]”1 Dislike of residential placement/Imbalance of power “People get pissed off living here. That’s why a lot of people kick off”2 Restrictive Intervention Trigger event (Aggression) OR Coping mechanism (Self-harm) “When you have got people holding you, you kick off more than you have done”3 Engage in challenging behavior “If we want a drink and they [staff] tell us ‘no’ then we kick off”5 (Aggression) “Whatever I’m sad about it’s steam coming out”6 (Self-harm) “Sometimes it [restraint] is necessary and sometimes it isn’t”4 1MacDonald et al., (2011; p. 49) 2Fish and Culshaw (2005; p. 99) 3 Sequeira and Halstead (2001; p. 468) 4Fish and Culshaw (2005; p. 104) 5Jones and Kroese (2006; p. 52) 6Harker-Longton and Fish (2002; p. 143)

  25. Theme 4: Opportunities for Improvement (1) There were positive reports of practice. Participants just wanted to be liked and accepted by staff. They said they responded best to staff who were genuinely interested in their wellbeing and genuinely cared for them: “I can tell when they like me (…) everyone wants to be liked don’t they? Make it easier when they like you” “The people I work with now really believe in what I’m doing and believe in me. So I’m starting to believe in myself” Working with staff, rather than told what to do “He just like, asks me very politely…and me and him both work together”

  26. Theme 4: Opportunities for improvement (2) Many participants found their own challenging behaviour aversive, and described feeling guilty and regretful about their behaviour after the event. A common plea by participants across studies was a less restrictive staff response “Talk to you, ask you why you are worked up, talk to you” “They could take me to my room and speak to me. That’s what they could have done, it would have helped me and could have helped them as well”

  27. Theme 4: Opportunities for improvement (3) Strategies for calming down A good relationship with a staff member could prevent challenging behaviour “It were Stella’s shift, so when she came down I settled dead easy” Some talked about deep breathing, counting to 10, or going to their bedroom to calm down.

  28. Theme 4: Opportunities for improvement (4) There was a sense that some participants were keen to learn to better manage their challenging behaviours. “I know I have a hard time being polite, but I’m tryin’, tryin’ my best to be polite to everybody” “I thought that [anger management] would work but it never…I don’t know who to go to, I do want to get out of it” No studies focused on effects of interventions in any detail, just a few broad comments.

  29. Core points- implications for practice The experience of people with challenging behaviour of services (either good or bad) depends on the staff who work in residential placements. • Relationships: Participants want balanced, genuine relationships with staff who like and accept them. • Atmosphere in placements: Restrictive and little autonomy.

  30. Core points- implications for practice All people with LD reported experiencing restrictive practices as physically and emotionally uncomfortable. • Many do understand why they are used, but some do not. • Saw restrictive practices as punitive rather than therapeutic Restrictive interventions (both response to aggressive behaviour or under 24 hour observation for self-harm) do not reduce challenging behaviour in the long-term. Some said it increased challenging behaviour due to: • Added stress of restrictive intervention. • Contribution of restrictive practices to unpleasant living environment

  31. Limitations to consider These findings must be taken in context -97% of participants lived in residential services We know little of the circumstances of participants – little demographic data reported Very little data on how people with LD experience specific interventions for their challenging behaviour

  32. Themes 1-3:Cycle of challenging behaviour Participant views of the cycle of challenging behaviour within residential placements “I wished I was dead. I tried anything to get out [to leave residential placement]”1 Dislike of residential placement/Imbalance of power “People get pissed off living here. That’s why a lot of people kick off”2 Restrictive Intervention Trigger event (Aggression) OR Coping mechanism (Self-harm) “When you have got people holding you, you kick off more than you have done”3 Engage in challenging behavior “If we want a drink and they [staff] tell us ‘no’ then we kick off”5 (Aggression) “Whatever I’m sad about it’s steam coming out”6 (Self-harm) “Sometimes it [restraint] is necessary and sometimes it isn’t”4 1MacDonald et al., (2011; p. 49) 2Fish and Culshaw (2005; p. 99) 3 Sequeira and Halstead (2001; p. 468) 4Fish and Culshaw (2005; p. 104) 5Jones and Kroese (2006; p. 52) 6Harker-Longton and Fish (2002; p. 143)

  33. Workshop: Implications for how psychologists support people who are at risk of receiving Restrictive Practices

  34. Workshop Groups of 4 – 5 people: • The model- Does it resonate with our experiences? • Therefore, how should services support people whose behaviour may be challenging? • What is the Psychologist’s role in making this happen? Feedback and discussion

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