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. 1. Context of the work
2. Meta-synthesis of qualitative studiesexperiences of people who have
experienced Restrictive Practices
3. Development of model to understand the
cycle of challenging behaviour in
residential settings
4. Workshop- Implications for Psychologists
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
“I’m not a patient, I’m a person” The
experiences of individuals with intellectual
disabilities and challenging behaviour: A
thematic synthesis of qualitative studies
Griffith, G.M., Hutchinson, L., & Hastings, R. P.
Published in: Clinical Psychology: Science and Practice
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.
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)
Inclusion criteria
1) Participants had a LD, we did not exclude on the
basis of having additional diagnosis e.g. ASD
2) Were reported to engage in challenging behaviour
(not including sexual offending)
3) The study was about participants’ experience of, or
a researcher observation of, receiving services or
supports.
4) Participants were 18 years old or above.
Methodology (1)
1) First, we extracted the result sections of each of the
included studies, which were read multiple times.
2) 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’.
3) Similar codes were brought together in a table and made
‘master’ themes, and subthemes. We made one master
theme table per study
Master theme
Page
Supporting quote
Anger as reason for
self-harm
p. 92
“It were cos’ I felt angry, and I used
to cut.”
p.93
“When you get angry, your body
expects to be cut”
Methodology (2)
4) After we made a master table for all studies, these were
synthesised together into one table which incorporated all
studies
Master theme
Study Supporting quote
Reasons for selfharm
Subtheme 1) Anger
Subtheme 2) Sadness
1
“It were cos’ I felt angry, and I used
to cut.”
1
“When you get angry, your body
expects to be cut”
3
“Whatever I’m sad about, it’s steam
coming out.”
5) Most complex stage. 3rd order interpretation. The
researchers draw together a narrative encompassing all
themes. Process dependant on judgement of researchers
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
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
Four Themes
1) Imbalance of power
2) Participant’s causal attributions about
challenging behaviour [CB]
3) Experiences of restrictive interventions
4) Opportunities for improvement.
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
“People get pissed off
living here. That’s why a
lot of people kick off” 2
Trigger event
(Aggression)
OR
Coping
mechanism (Selfharm)
“When you have got
people holding you,
you kick off more than
you have done” 3
Restrictive
Intervention
“Sometimes it
[restraint] is
necessary and
sometimes it isn’t”
Dislike of
residential
placement/Imbal
ance of power
“If
4
Engage in
challenging
behavior
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)
1
MacDonald et al., (2011; p. 49)
Fish 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)
2
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”
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”
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
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”
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.”
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.
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”
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”
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”
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.”
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
“People get pissed off
living here. That’s why a
lot of people kick off” 2
Trigger event
(Aggression)
OR
Coping
mechanism (Selfharm)
“When you have got
people holding you,
you kick off more than
you have done” 3
Restrictive
Intervention
“Sometimes it
[restraint] is
necessary and
sometimes it isn’t”
Dislike of
residential
placement/Imbal
ance of power
“If
4
Engage in
challenging
behavior
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)
1
MacDonald et al., (2011; p. 49)
Fish 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)
2
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
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”
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.
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.
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.
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
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
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
“People get pissed off
living here. That’s why a
lot of people kick off” 2
Trigger event
(Aggression)
OR
Coping
mechanism (Selfharm)
“When you have got
people holding you,
you kick off more than
you have done” 3
Restrictive
Intervention
“Sometimes it
[restraint] is
necessary and
sometimes it isn’t”
Dislike of
residential
placement/Imbal
ance of power
“If
4
Engage in
challenging
behavior
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)
1
MacDonald et al., (2011; p. 49)
Fish 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)
2
Workshop: Implications for how
psychologists support people
who are at risk of receiving
Restrictive Practices
Workshop
Groups of 4 – 5 people:
1. The model- Does it resonate with our
experiences?
2. Therefore, how should services support
people whose behaviour may be
challenging?
3. What is the Psychologist’s role in making this
happen?
Feedback and discussion
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What do people with intellectual disabilities and challenging