1
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 ActRohan 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

2
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

3
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?

4
Study within a studyThe 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

5
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

6
So what did we find?

• 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

7
However

• Service User Researchers were much more likely to
  ask about peoples 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?

8
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 havent been made to stay in your
  bedroom or anything, as a behavioural response?

9
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

10
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

11

• 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

12
So thats 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.

13
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 .. Ive
  never, ever felt such excruciating pain before
  .. it felt like my wrist was going to break.
• Its still a little bit of a barbaric system
  really, where people can sort of rough you up and
  bung you on the floor.
• I didnt like the place because its too
  violent for me. I dont want to watch fights all
  day.

14
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 youre in the mental
  health system. You definitely become a dejected
  specimen of what you formerly were.
• Youre sort of plucked out and suspended in
  time out of society and society doesnt work like
  that, you know? You couldnt describe it as a
  progressive time at all.

15
The Health Services Researchers story

• Focuses on concepts that explain the detained
  patient experience
• playing the game
• patient insight
• imbalance of power
• I think its 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
  youre very much at the bottom of the pile.
• Youre the nurse, Im the patient, you get on
  with your job and Ill get on with mine, you
  know?

16
The Health Services Researchers story

• Describes the newly admitted, unwell patient
  resisting the injustice of detention and being
  subject to coercion as a result
• Im pretty sure I could refuse medication, but
  I just wouldnt get out of here.
• Yeah, definitely, dont rock the boat all the
  time, a hundred percent. When you wake up in the
  morning, dont rock the boat! When you go sleep
  at night dont 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.

17
The Health Services Researchers story

• Over time patients work out the rules of the
  game and become compliant with treatment
• You play the game, dont you? If you dont
  play the game, you dont get what you want.
• If you dont take your medication or if you
  dont 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 its a nice afternoon and
  everybodys 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.

18
The Nursing Researchers 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 theyre higher than you and that they
  have duty of care over you, because most of them
  dont even care.
• Patients attempts to have some control over
  their treatment are discounted and treatment
  decisions are kept from patients

19
The Nursing Researchers story

• This staff attitude results in a lack of both
  interpersonal and formal therapeutic engagement
• Sometimes at breakfast here a nurse wont 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 theyre too busy
  to do it. Thats the impression.
• They sort of sat and spoke to me, but after a
  while of them doing it they just didnt both
  talking to me anymore.
• Its very difficult to dispute because were 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?

20
The Nursing Researchers 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
  Id take the tablets. They just felt that I was
  so high that I wouldnt have taken the tablets
  and it was an occasion where I thought well, I
  wouldve just taken the tablets if theyd have
  asked me to.
• No, they dont try things like that at all.
  They just get the team out and thats it.

21
But could we tell a shared story that included
the things we saw differently as well as what we
agreed on?
22
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.

23
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

24
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