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‘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 - PowerPoint PPT Presentation
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‘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
BackgroundWhy 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?
Most of the time we asked the same types of questions:EnvironmentStaff 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
Comparison by lead interviewer
0.0%2.0%4.0%6.0%8.0%
10.0%12.0%14.0%16.0%18.0%20.0%
ENV STA SER L&MH ALT PRO
Question theme
% of
total
ques
tions
aske
d Health Services Researcher
Service User Researcher
However…
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?’
Comparison by lead interviewer
0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
30.0%
Experiences of Coercion
Question theme
% of
total
ques
tions
aske
d Health Services Researcher
Service User Researcher
And …
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?’
Comparison by lead interviewer
0.0%
2.0%
4.0%
6.0%
8.0%
10.0%
12.0%
14.0%
16.0%
18.0%
Medical & Behavioural
Question theme
% of
total
ques
tions
aske
d Health Services Researcher
Service User Researcher
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:
- Background situation- Experiences of being
sectioned- Violence & mental health- Effects of medication- Feelings about being
detained- Alternatives to coercion
Comparison by team members
0.0%
2.0%
4.0%
6.0%
8.0%
10.0%
12.0%
14.0%
16.0%
BAC SEC VIO MED FEE ALT
Theme
% o
f tot
al co
des Service User Team Members
Other Team Members
While other team members (Nursing Researcher, Health Services Researchers) were more likely to code as :
- Communication with staff
- Policies & procedures
- Nurse education & training
- ‘Playing the game’
- Patient insight
Comparison by team members
0.0%
2.0%
4.0%
6.0%8.0%
10.0%
12.0%
14.0%
COM POL E&T PLA INS
Theme
% o
f to
tal
cod
es Service User TeamMembers
Other Team Members
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
Nursing ResearcherHealth Services
Researchers
‘Playing the game’ Coercion,
compliance & reward
Negative staff attitudeLack of engagement
Coercion as 1st choice
Violence Separation Dejection
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