Transcript Mental health service users and carers as researchers

MENTAL HEALTH SERVICE USERS AND
CARERS AS RESEARCHERS:
REFLECTIONS ON A QUALITATIVE STUDY
OF CITIZENS’ EXPERIENCES OF
COMPULSORY MENTAL HEALTH LAWS
Damien Kavanagh, Martin Daly, Moira Harper,
Gavin Davidson, Jim Campbell
Damien Kavanagh
Student Social Worker (former Carer Advocate), Queen’s
University Belfast
Martin Daly
Service User Consultant (former Service User Advocate), Belfast
Health and Social Care Trust
Moira Harper
Carer Advocate, CAUSE for Mental Health
Dr Gavin Davidson
Lecturer in Social Work, Queen’s University Belfast
Dr Jim Campbell
Senior Lecturer in Social Work, Queen’s University Belfast
OVERVIEW
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Study
Context
 Methodology
 Themes
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Summary of reflections
Advantages of this study
 Limitations of this study
 Discussion questions
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CONTEXT
Increasing diversity
 Integrated service – complexities
 Legacy-related issues from the ‘Troubles’ (for
service users and workers)
 Community and voluntary sectors
 Legislative framework
 Partnership
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METHODOLOGY
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2 Carer Researchers
1 Service User Researcher
2 Academic Researchers
Qualitative Interviews
METHODOLOGY
Samples
 Open process
 6 Service Users
 5 Carers
 Participants recruited through service user and
carer organisations
 Detention at least once
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METHODOLOGY
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Interview Schedule
Collaborative Process in Design
4 Main Sections
Demographics
 Initial Contact with Services
 Admission and Inpatient Experience
 Experiences of Recovery
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4 key areas at each stage:
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Availability of information
Clarification of staff roles and responsibilities
Involvement in each stage
Satisfaction / Dis-satisfaction levels
METHODOLOGY
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Thematic Analysis
Initially by service users and carers
Independent analysis by academic researchers
Comparison and Discussion
ETHICAL CONSIDERATIONS
University Ethics Committee
 Before and during interviews: sensitive to the
immediate experience of individuals
 Clear information
 Consent and anonymity
 Support throughout and following interview
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DEMOGRAPHICS – SERVICE USERS
Age: 28, 21, 40, 34, 19, 31
 Gender: 2m, 4f
 Religion: 5 Catholics, 1 Protestant
 Hospital admissions: 2, 3&5yrs; 3, 2, 2& 20yrs,
4&9yrs
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DEMOGRAPHICS - CARERS
Age: 65, 61, 46, 46, 65
 Gender: 3f, 2m
 Religion: 5 Protestants
 Hospital admissions: 6, 4, 3, 4, 3; 1985 - present
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MAPPING THE JOURNEY
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5 Sections:
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A - Demographics
B - Initial Contact with Services
C - Admission and Inpatient Experience,
leading to Discharge
D - Experiences of ‘Recovery’
E - Other Comments
SERVICE USER THEMES
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Communication and Information
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Care and Discharge Planning
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“I only remember the doctor; everything was withheld – all I
knew, I was down, I was sectioned, getting pumped full of
drugs. The doctor checked me and the next thing I knew I was
detained.”
“No, not in the slightest. Nobody. I was bunged full of
haloperidol and drugs, and just not involved.”
Inappropriate use of low-secure Psychiatric
Intensive Care Units (PICU)
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“That felt like a punishment – I had to be on my best behaviour
and do what I was told. There was no compromise; I was on
obs and wasn’t allowed out. I saw ICU as punishment – do as
you’re told or we’ll keep you here. It was just hell.”
SERVICE USER THEMES
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Institutionalisation
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Compassion Fatigue
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“I sat there and didn’t know what to do – I was so used to being
interrogated and used to being questioned. I still don’t know
what psychotherapy is.”
“ ... on the first admission they’re brilliant with you, but see
after two weeks you’re part of the furniture, and it’s the same
each time after. The very first time they were fantastic but the
others weren’t.”
Attitudes
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“The ASW’s manner – I remember all the lights being on and
the blinds open. She said: “right, we’ve 20 minutes and then
we’ve got to go”. I said “why?” She said, “You’ve got to pack
and go”. She was standing up – I said, “what’s the rush?
You’re scaring me”. She said “come on, get some stuff
together”. I kept questioning – the ASW was looking at her
watch, becoming agitated.”
CARER THEMES
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Information
“This most recent time I got a letter a day or two afterwards.”
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Involvement/communication/exclusion
“Other than ringing us to let us know that he had been
admitted. I can’t remember; he was transferred the last time and the
ward rang us after. That was it.”
“Not at all, my son was just handed to me when he was coming
home. I don’t know what a care plan looks like; I’ve never had one.”
“... my husband tried to hang himself five times on the ward in a
month – he doesn’t know how it happened...... He hid behind the
door, cut his bed sheets, went out to ask for a paperclip. He was
given one by the nurse. He used the clip to pin 2 photos of the
kids to his chest and hung himself. Another time I had to phone
the hospital to tell them a window was loose as he got to the off
licence whilst he was a detained patient.”
CARER THEMES
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Feelings/emotional impact/lack of support
“None, I was given nothing – I ended up with my own CPN
eventually.”
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Follow-up
“The first time they told me nothing – the CPN arrived
at the door 3 months down the line. I remember
constantly running to my doctor – He was the only
support.”
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Positive Relationship
“She can relate to him, she speaks his language, speaks to us
both and gives us options. We sit and we talk about what we
would all be happy doing. She’s very caring and takes the
time to talk to him when he’s well.”
“It was a privilege to be witness to the honesty and the
thoughtfulness of the people we spoke with … ”
Service User Researcher
“This was the first time that I have taken seriously the
prospect of a partnership with service users and carers
as co-researchers and it has been rewarding as well as
thought-provoking.
Academic Researcher 1
“I was excited to be involved in this research
because of the focus of the study on experiences
of detention but also because it was my first
experience of service user and carer led
research.”
Academic Researcher 2
“I initially felt enthusiastic and hopeful at the
prospect of my involvement in ….. this research
project.”
Carer Researcher 1
“… when I was invited to get involved with the peer
research project with carers it was a very
interesting and humbling experience.”
Carer Researcher 2
Have we moved on?
SUMMARY OF REFLECTIONS
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Common view about the need to explore the impact of
detention on the lives of service users and carers, expressed in
different ways.
Academics were keen to use the project to confirm or deny
what they suspected were coercive professional practices
sometimes used when mental health law was being applied in
these circumstances
Service user and carer researchers tended to view the process
in terms of increased opportunities for participation and
catharsis for respondents.
One of the carers had modified their views as they moved into
a professional role as a student social worker.
SUMMARY OF REFLECTIONS
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Tensions in the way that the constituent groups
comprehended the research process.
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The discourse and jargon of research methodologies had to
be demystified if the project was to work.
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Academics felt ‘nervous’ about ‘letting go’ or not being
directly involved in the interviews.
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Service user and carer researchers felt a sense of
powerlessness until they began to grasp and influence the
research design and process.
Empowering and illuminating for the researchers and the
respondents.
SUMMARY OF REFLECTIONS
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Using experiences to communicate with respondents to
address the challenges of engaging with the emotive issues
associated with detention. It is noticeable, in their
reflections, the degree to which interviews had reawakened
powerful memories and emotions in the interviewers.
The complementary knowledge and experiences that each
constituency brought to the project.
Peer researchers gained confidence in carrying out
interviews with respondents who shared similar
experiences, and the consensus about the findings tended to
confirm a sense of expertise across team members.
FINAL REFLECTION
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“ The actions of professionals before, during and
after detention are very often not sensitive to the
rights and needs of services users and carers.
Despite this, there is a sense of optimism about
the future, but only if mental health services are
reconstructed to take account of the views of
service users and carers.”
ADVANTAGES
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The involvement of service users and carers
brought a new dimension to the conventional
academic approach to research in this field,
particularly in terms of skills in communicating
with peers.
There appeared to be a cathartic effect created by
the participatory nature of the interviews that
empowered interviewers and interviewees.
Service user and carer researchers became
confident about the research process as the
project developed.
LIMITATIONS
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Not enough time was spent on preparing the
researchers for the task, an education and
training programme would enhance such studies.
The academics at times felt overly responsible for
the processes.
There were concerns about the potential for
interviewer bias, a more triangulated approach
involving interviews with professionals might
help capture a more holistic picture of the
detention process.
DISCUSSION QUESTIONS
If there is a growing interest in service user and carer led
research projects, how can the academic community respond
to this trend?
 Should there be a balance in terms of academic and service
user/carer involvement and responsibilities for these
projects?
 What are the educational and training needs of service users
and carers and how can these be met?
 Is it possible to develop enough capacity to enable service
users and carers to carry out their own research?
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BELFAST 2011
ACCRA,
GHANA 2011