Transcript Add heading - The British Sociological Association

‘Does who we are make a difference to
the research that we do?’
Telling stories about the experiences of
patients detained under the Mental Health Act
Rohan Borschmann, Mary Chambers, Steve Gillard, Norman Goodrich-Purnell,
Kath Lovell, Kati Turner
Presented to
SRN/BSA Sociology of Mental Health Study Group seminar series
Presented by
Steve Gillard & Kati Turner
6 April 2009
Background
Why did we study the ‘lived experience of detained patients’?
 The
Trust wanted to better understand the experiences of
patients detained under the Mental Health Act on psychiatric
inpatient wards
 The Trust Board launched a two year ‘patient experience’
programme, including funding for this research project
 In-depth qualitative interviews to explore experiences of
sectioning, control & restraint, rapid tranquilisation and seclusion
 Findings from interviews used to develop nurse training
workshops
How did we study lived experience of detained patients?
 Experiences
of detention would best be understood if people who had
used mental health services were key members of the research team:
– Three Service User Researchers
– Nurse Researcher
– Two Health Services Researchers
 Service User Researchers trained and enabled to be involved in all
aspects of study design, data collection, analysis & dissemination
 ‘Study within a study’:
– ‘Does who we are make a difference to the research that we do?’
‘Study within a study’:
The impact of SURs on the research findings
 So,
what difference does SUR involvement make?
 Previous study (‘stakeholder engagement in change’) suggested
that:
– Service User Researchers might ask different follow-up
questions when carrying out qualitative interviews
– Service User Researchers might identify different things as
important when analysing interviews
 To test this we did a ‘secondary analysis’ of interview transcripts
from the main study…
Do we interview differently?
 We
looked at 10 interview transcripts:
– 5 led by the Health Services Researcher
– 5 led by a Service User Researcher
 Follow-up
questions were categorised into 9 themes and the
number of questions asked in each theme were counted
 We
compared the proportion of total questions asked in each
theme by Health Service and Service User Researchers
…So what did we find?
Comparison by lead interviewer
% of total questions asked
Most of the time we asked the
same types of questions:
Environment
Staff relationship
– Service & treatment
– Life events & mental
health
– Alternative to coercion
– Procedures
Indicated that all members of the
team were trained and
interviewed to the same high
professional standard
20.0%
18.0%
16.0%
14.0%
12.0%
10.0%
8.0%
6.0%
4.0%
2.0%
0.0%
Health Services Researcher
Service User Researcher
ENV
STA
SER
L&MH
Question theme
ALT
PRO
However…
Comparison by lead interviewer
30.0%
% of total questions asked
Service User Researchers
were much more likely to ask
about people’s experiences
and feelings:
‘How did it feel when you
were changed from being
a voluntary patient to
being sectioned?’
– ‘When you said you
were restrained, you
said that it felt
frightening?’
– ‘And was that a way of
expressing some
anger?’
25.0%
20.0%
Health Services Researcher
15.0%
Service User Researcher
10.0%
5.0%
0.0%
Experiences of Coercion
Question theme
And …
Comparison by lead interviewer
% of total questions asked
The Health Services
Researcher was more likely
to ask questions from a
medical or behavioural
perspective:
- ‘Do you know what it
was they gave you…?
Did it have any effect
on the side effects?’
– ‘But you haven’t been
made to stay in your
bedroom or anything,
as a behavioural
response?’
18.0%
16.0%
14.0%
12.0%
10.0%
8.0%
Health Services Researcher
Service User Researcher
6.0%
4.0%
2.0%
0.0%
Medical & Behavioural
Question theme
Did we analyse differently?
A thematic content analysis…
 All
six members of the research team carried out a preliminary analysis
of the same extracts from a sample of three interviews
 Researchers gave a ‘code’ (a label) to anything they thought was
interesting or important
 Those codes were grouped by the whole team into 13 themes
 Counted how many times each researcher used each theme in the
preliminary analysis
 Compared how many times Service User Researchers used each
theme with the other research team members
… and?
While some of the coding
was similar, Service User
Researchers were more likely
to use these themes:
Comparison by team members
16.0%
- Background situation
- Experiences of being
sectioned
- Violence & mental health
- Effects of medication
- Feelings about being
detained
- Alternatives to coercion
% of total codes
14.0%
12.0%
10.0%
Service User Team Members
8.0%
Other Team Members
6.0%
4.0%
2.0%
0.0%
BAC
SEC
VIO
MED
Theme
FEE
ALT
While other team members
(Nursing Researcher, Health
Services Researchers) were
more likely to code as :
% of total codes
- Communication with staff
- Policies & procedures
- Nurse education &
training
- ‘Playing the game’
- Patient insight
Comparison by team members
14.0%
12.0%
10.0%
8.0%
6.0%
4.0%
2.0%
0.0%
Service User Team
Members
Other Team Members
COM
POL
E&T
Theme
PLA
INS
So that’s what the numbers said…
… but what difference does that make to our findings?
We looked at the themes again and asked…
 Were different Researchers telling ‘different stories’ about the lived
experience of detained patients?
 There were lots of views we shared, but…
 We found that we did have very different perspectives on some
important aspects of the detained patient experience.

The Service User Researchers’ story…
 Focuses
on the impact of the experience of detained care on the
individual rather than the processes of detention;
 Describes experiences of violence and separation from the world
outside:
“It was just such unnecessary pain ….. I’ve never, ever felt such
excruciating pain before ….. it felt like my wrist was going to
break.”
“It’s still a little bit of a barbaric system really, where people can
sort of rough you up and bung you on the floor.”
“I didn’t like the place because it’s too violent for me. I don’t want
to watch fights all day.”
The Service User Researchers’ story…
 Patients
spoke of feeling like ‘dejected specimens’ and of being
‘plucked from society’;
 And of feeling like they were sentenced to indefinite
imprisonment:
“One, I think you get more freedom in an open prison than you
get on a section and two, is that the dignity is gone once you’re in
the mental health system. You definitely become a dejected
specimen of what you formerly were.”
“You’re sort of plucked out and suspended in time out of society
and society doesn’t work like that, you know? You couldn’t
describe it as a progressive time at all.”
The Health Services Researchers’ story…
 Focuses
on concepts that explain the detained patient experience:
 ‘playing the game’
 ‘patient insight’
– ‘imbalance of power’:
“I think it’s too much power. I think power comes in that the police
are called and the nurses restrain you and it seems to me as though
you’re very much at the bottom of the pile”.
“’You’re the nurse, I’m the patient, you get on with your job and I’ll
get on with mine’, you know?”
The Health Services Researchers’ story…
 Describes
the newly admitted, unwell patient resisting the
injustice of detention and being subject to coercion as a result:
“I’m pretty sure I could refuse medication, but I just wouldn’t get
out of here.”
“Yeah, definitely, don’t rock the boat; all the time, a hundred
percent. When you wake up in the morning, don’t rock the boat!
When you go sleep at night don’t rock the boat! The nurses are
in charge; you put a step out of line and they give you more
medication ….. Nobody wants more medication.”
The Health Services Researchers’ story…
 Over
time patients work out the ‘rules of the game’ and become
compliant with treatment:
“You play the game, don’t you? If you don’t play the game, you
don’t get what you want.”
“”If you don’t take your medication or if you don’t tidy your bed
space, the duty team will come.”
 They
are then rewarded with an end to coercion and positive
relationships with staff:
“Play the game and get on with it. You know what I mean? You
might even end up having a bit of a laugh doing it, if it’s a nice
afternoon and everybody’s getting on well.”
“A lot of them are nice. A lot of them will sit down with you and
have a laugh over Eastenders or something.”
The Nursing Researcher’s story…
 Focuses
on staff attitudes and implementation of procedure;
 Describes
staff viewing the new patient as childlike and dangerous:
“They treat you like a child, you know? One thing that needs to
change is the way that they feel that they’re higher than you and
that they have duty of care over you, because most of them don’t
even care.”
 Patients’
attempts to have some control over their treatment are
discounted and treatment decisions are kept from patients;
The Nursing Researcher’s story…
 This
staff attitude results in a lack of both interpersonal and
formal therapeutic engagement:
“Sometimes at breakfast here a nurse won’t say good morning,
you know? They just sort of stare you up and down. Some of
them are very human but the impression they give is that they’re
too busy to do it. That’s the impression.”
“They sort of sat and spoke to me, but after a while of them doing
it they just didn’t both talking to me anymore.”
“It’s very difficult to dispute because we’re in the dark as to what
their activities are. I mean, I wonder what the clipboard and
writing down ‘obs’ is, you know what I mean?”
The Nursing Researcher’s story…
 Because
of the absence of meaningful relationships between
patients and staff, coercive practices become the first response to
tension on the ward:
“I was restrained once without being asked if I’d take the tablets.
They just felt that I was so high that I wouldn’t have taken the
tablets and it was an occasion where I thought ‘well, I would’ve
just taken the tablets if they’d have asked me to’”.
“No, they don’t try things like that at all. They just get the team
out and that’s it.”
But could we tell a ‘shared story’ that included the
things we saw differently as well as what we agreed on?
Service User Researchers
Violence
Separation
Dejection
‘Playing the game’
Coercion,
compliance & reward
Health Services
Researchers
Negative staff attitude
Lack of engagement
Coercion as 1st choice
Nursing Researcher
The shared story (the whole story?)…
 Some
staff view the new detained patient as dangerous, a lack of
engagement leading to use of coercion as the treatment of choice;
 Reflects a lack of staff training and awareness around engagement at
the difficult time of admission;
 Results in a cycle of violence;
 Continues until the patient is ‘broken’ and becomes treatment
compliant (‘plays the game’);
 Patient is then rewarded with a friendly relationship with staff;
 The cost of that process for the patient is a damaged sense of self,
as well as a damaged relationship with mental health services.
So did who we are make a difference?
Relationships within the research team
 The
shared story we told brought together some very different views
 Relationships in the research team, between different researchers,
enabled us to explore and include those differences
 For example, the research relationship between service user and nursing
researchers acted as a ‘bridge’ between the different perspectives
 So different perspectives – e.g. experiences of violence and nurse
training issues – are not polarised, but are understood through dialogue
in the research team
 Allows research findings to ‘speak to’ both nursing staff and patients
Making a bigger difference:
Telling our story to the wider world
 Story
told to nursing staff through
– 4 day training workshop in the Trust (very positive evaluation and
feedback after a number of months – a lasting impression)
– National and International Royal College of Nursing conferences
 Story told to service users and patients through conference
presentations and workshops (National, South London, and East
Anglia Mental Health Research Network conferences)
 Story told to researchers interested in doing good collaborative
research (INVOnet workshop, MRHN conferences)
 Methodology used in a national study of Self Care in Mental Health