SRN/BSA Sociology of Mental Health Study Group seminar series
(January-June 2009)
Does who we are make a difference to the research that we do? Evaluating
the impact of service user involvement in mental health research.
[
6.4.2009 -
Kati Turner, Service User Researcher and
Steve Gillard, Senior Research
Fellow, Division of Mental Health,
St George's, University of London.
The debate about the involvement of service user researchers in mental
health research has moved on. We are no longer asking 'is it a good
thing?' We want to know if it makes any difference! We report on two
projects involving service user researchers at St George's, University of
London, exploring the involvement of service users in service development
in a
mental health Trust and patient experiences of detained care.
We used
a range of reflexive methodologies, qualitative and quantitative, to
evaluate the difference service user researchers were making to both the
research process and research findings. Measuring this difference suggests
that collaborative research is likely to produce a much more complete
picture, reflecting the experiences of service users and mental health
professionals alike.
Kati Turner
Kati has worked as a Service User Researcher in the Division of Mental
Health, St George's, University of London, for three years. She also works
as a freelance service user consultant in the mental health field and is a
Director of Borderline UK, a service user-led organisation.
Steve Gillard
Steve has spent a number of years enabling and training people who use
mental health services to work as researchers, first in the voluntary
sector and now at St George's. Steve teaches research methods and has
interests in collaborative methodologies, patient and staff experiences of
care, and organisational research.
Not ending with the research report: Extending the outcomes into the
researched reality [
6.4.2009]
Jasna Russo, Sandra Hamilton, Berlin, Germany
The Evaluation and Practice Project: "Person-Centred Care from the Users'
Perspective" is the first big survivor-controlled research project
conducted in Germany. It was inspired by the complete absence of user
involvement in both the development and the implementation of the concept
of Person-Centred Care as well as from the resultant monitoring of
legislation, programs and services provided.
The project lasted two and a half years and started with a large-scale
evaluation of community-based psychiatric services in Berlin. The report
"From our own Perspective. Service Users' Experiences with Person-Centred
Care" was published at the end of the first year (2007) and marks a turning
point rather than the end of the project. It is based on both qualitative
and quantitative results emerging from 33 Interviews, 533 Questionnaires
and six focus groups with the participants. The remaining project time was
dedicated to the development of strategies to bring the main findings from
the evaluation back into the practice of the care-facilities. Over the
final six months we applied three thus developed strategies on two levels:
we worked with two facilities on service-level as well as with members of a
deciding body on a regional political level. In our final report and in
the accompanying video documentation we describe and reflect on these
processes. The presentation will focus on the methodology and project
design rather than on the results, since they are of a greater relevance in
the German context. We would like to share and discuss the way in which we
let the concrete strategies of user-involvement grow out of the research
findings and to give account of our experiences in attempting to actively
intervene in psychiatric community services
Jasna Russo and Sandra Hamilton worked on this project as part of a non-
hierarchical team of four for the survivor-controlled NGO Fr alle Flle
(In Any Case). Jasna has graduated in Clinical Psychology and Sandra in
Sociology. They both have personal experience of psychiatric treatment and
using mental health services.
What's in a Name? Race, User Involvement and "Hard to Reach"
Communities [
2.3.2009]
Jayasree Kalathil, Survivor Research
The term "user involvement" is generally understood to mean specific
activities involving service users, often driven by policy, and often
defined by the organisation setting up those activities. Existing (limited)
research in this area concludes that there is an "underrepresentation" of
service users and survivors from Black and minority ethnic communities in
user involvement initiatives, despite continuing overrepresentation of
people from many minority communities within services.
The National Survivor User Network recently funded a consultation with
service users and survivors, exploring the involvement of Black and
minority ethnic service users in mental health user involvement initiatives
in statutory and voluntary sectors and in mainstream mental health user
movement. Commissioned in collaboration with Catch-a-Fiya, a network of
service users and survivors from Black and minority ethnic communities, the
consultation explored the barriers to involvement and the solutions to
enable effective involvement. It also looked at what "user involvement" had
achieved or not achieved and how this had an impact on people's decisions
to participate in mainstream involvement initiatives. This paper will
present the main findings from this consultation and explore its
implications for user involvement in mental health.
The idea of underrepresentation and the need to increase involvement of
Black and minority ethnic service users and survivors, often quoted in
policy documents, seems to have created an unhelpful and arguably
discriminatory category called "hard to reach" within which Black and
minority ethnic communities find themselves confined. The experiences of
people who took part in this consultation (both from Black and minority
ethnic communities and from the mainstream White communities) showed a
range of issues in the way user involvement is done, including racism,
power imbalances, lack of political will, lack of faith, collusion of race
and class in the making of hierarchies, to name a few. Based on these
experiences, the paper will deconstruct the term "hard to reach" and offer
more productive ways of thinking about partnership working with communities
that are often marginalised.
Effective involvement in mental health services: the role of assertive
outreach and the voluntary sector
[
2.3.2009]
Rosie Davies, Bristol Mind
This research asked how both statutory and voluntary services could best
work to promote effective access to, and sustain involvement with, services
for people with severe mental illness who get labeled as 'hard to engage'.
This was a qualitative study, mainly focused on the perceptions and needs
of service users, including the specific needs of people from Black and
minority ethnic communities. 64 service users/avoiders took part and 9
carers.
People wanted help for their problems, and with a whole range of areas of
their lives, from services that were flexible and reliable and responsive
to user priorities. They wanted sustained and consistent relationship with
a few staff and valued informal emotional support. They found assertive
outreach more effective and helpful than other mental health services they
had used (or avoided). Voluntary outreach services were also seen as
effective and accessible.
Participants did not want services focused only on medication. People were
put off when they experienced mental health services as intrusive and
controlling and by being sectioned, forcibly medicated and by inpatient
stays.
Participants from Gypsy and Traveller communities, those with drug and
alcohol problems alongside mental health problems and those with
particularly negative views about medication were particularly excluded
from services.
This study was done by user researchers at Bristol Mind, supported by the
Avon and Wiltshire Mental Health Partnership NHS Trust, CSIP South West
(Care Services Improvement Partnership) and Bristol University.
Politics of recognition: what can a human rights perspective contribute
to understanding users' experiences of involvement in mental health
services? [
2.3.2009]
Lydia Lewis
In the UK, participation in decision-making is increasingly being viewed as
a right for users of mental health services. Yet research repeatedly finds
a policy implementation gap in this area. Drawing on a localised,
qualitative study involving three mental health service user/community
groups, this article frames this issue in terms of a 'politics of
recognition'. It demonstrates how whilst government user involvement
policies officially attempt to recognise users and their voices, they
simultaneously reconstitute failures of recognition in terms of status
subordination and a disqualified identity for service users, thereby
obstructing participatory parity and amounting to a dereliction of the core
principles underlying human rights.
Dr. Lydia Lewis is a research associate in the Department of Sociology at
the University of Warwick. Her research and interests are in the area of
the sociology of mental health, focusing on the politics of mental health
services, social movements, and feminist perspectives. She is co-convenor
of the Sociology of Mental Health Study Group within the Medical Sociology
Group of the British Sociological Association - see
http://www.britsoc.co.uk/medical/MedSocMentalHealth.htm
"In-Sight": A user-led recovery group training enables people with
bipolar disorder in their recovery
[
6.4.2009]
Heather Johnson Straughan, Research Fellow, Centre for Mental Health
Recovery, University of Hertfordshire
People with bipolar disorder experience severe changes in mood from extreme
highs to clinical depression covering psychosis, with the illness affecting
all areas of their lives. For recovery, a holistic approach is advocated
although found wanting in current practice. The "In-Sight" training drew
from both personal experience and established therapies to create this
holistic approach. The training covers mood management techniques, healthy
lifestyle choices, skills development, healthy lifestyle structure and
balance, goal-planning and planning for sustained wellness.
Within a case study approach, an experimental design was incorporated in
this research: the pilot training was delivered to a group of eight people,
and later the main study training was delivered to a group of five bipolar
clients, compared to a control group of six. People who were diagnosed with
bipolar disorder were recruited into the study. The training was delivered
over 12 weeks, three hours each weekly session. Self-report questionnaires
covering mood, coping, empowerment and quality of life and client and
mental health professional interviews were undertaken pre-training, post-
training and six months post-training. Medical notes of participants and
the observations of the user-researcher also informed the study.
Results indicated that following the training enabled clients to achieve a
more stable mood with reduced symptoms, greater empowerment, better coping
and an improved quality of life. Two thirds of controls deteriorated in
health over the same time period (of whom half relapsed with depression
with psychotic features); one third demonstrated slight improvement
although did not achieve the level of improvement of participants. A model
has emerged which illustrates the benefits derived from the multi-facetted
components of this holistic training and how they impact upon enhancing
coping and enabling recovery.
The "In-Sight" user-led recovery training for people with bipolar disorder
can be viewed as part of a personal care package as it responds to the need
for information and extended skills in order to cope and live well with
this illness. It enables people to individualise exercises to meet their
specific needs, to become more empowered and to increase their self-
determination and their choices in how they want to live their lives.
How Personality Became Treatable: (Re)Configurations of Psychopathy in
Policy and Practice. [
11.5.2009]
Not so very long ago, Personality Disorder was not considered treatable;
today, it is. How did this happen? In this paper, I will present a socio-
legal history of fifty years of policy and clinical discourse on
(Psychopathic) Personality Disorder as a background to answering this
salient question. In my paper I will draw on an idiom called 'co-
production' from the science and technology studies literature (STS) to
show how the discourses I describe have resulted in new legal strictures
and ontological understandings of Psychopathy. In the process I highlight
both the degree to which policy and practice shape one another, and the
extent to which STS ideas can inform the social, political and ethical
studies of mental health.
Martyn Pickersgill
Doctoral Candidate
Institute for Science and Society
University of Nottingham
Women, alcohol and mental health: achieving authenticity in a hostile
environment. [
11.5.2009]
Patsy Staddon, University of Plymouth
The shame and disgust often felt around women's drunkenness, combined with
concerns about their physical health, have tended to dominate the debate
around women's alcohol use. Concern for social stability and the health of
families frequently over-rides an understanding and appreciation of why
women and other disadvantaged groups are likely to need to use substances
of some description. These factors may include political injustice, mental
ill health, domestic abuse, or even the desire to have fun. Alcohol, for
example, may enable them to attain a sense of authenticity, to be able to
acknowledge to themselves who they are, and to celebrate it (Ettorre 2007).
To perceive such needs as 'illnesses' or 'addictions' is unlikely to be
successful in changing behaviour, is an infringement of human rights, may
be harmful, and perpetuates understandings of mental health whereby
'normality' is a straight line rather than a wavy one.
Authenticity is a necessary condition for mental health. The reported
increase in substance use among women (Plant 2008) may reflect the way that
it is increasingly difficult for them to reconcile the needs of mind and
body. Or, it may mean a new awareness of the ways in which mental health
may be contingent upon a degree of freedom to explore diverse aspects of
ourselves, the 'other nine tenths [of our brain] becoming fiercely alive'
(Shingler 2008 in Jackson 2008 p.23)
Provided we present no risk to anyone other than ourselves, the right to be
free to use alcohol, chocolate, tobacco or fatty food, in whatever way
seems best to us, whatever its effect on our 'health', is a precious one.
Might future legislation either insist on our receiving medical treatment
for substance use, whether we want it or not, or on denying us treatment
when we do want it because we 'brought illness on ourselves'?
Patsy Staddon is a survivor of alcohol services, mental health service user
and postgraduate student.
A symbolic interactionist approach to mental health outreach.
[1.6.2009]
Jim Roe and Hugh Middleton, University of Nottingham
Contemporary mental health policy encourages approaches that focus upon
supporting autonomy and citizenship; "recovery", rather than symptom
control. Assertive Outreach (AO) teams provide for those at risk of
dangerous or self injurious behaviour, maintain compliance with medication
and support related carers. Those served tend to be assertive and
reluctantly identified as one with mental health difficulties. They
epitomise conflict between public and professionals' expectations of
conformity to the role of "patient", and their own aspirations of autonomy
and independence, and therefore offer a particularly salient context in
which to study such interactions and the meanings they generate. This
project is a detailed review of ways in which professionals' views and
practices, organisational constraints, lay views, past experiences and
other sources conspire to determine clients' assumed and attributed
identities.
There has been considerable investment in community teams to support this,
generating a need for theory and methods from social sciences if their
activities are to be properly evaluated and understood.
Mental health services are an intensive, narrowly defined set of human
interactions. They often stand accused of practices that hinder recovery
because they result in marginalisation, stigma, labelling, and assumptions
of permanent disability. These are aspects of a derived identity which,
from a symbolic interactionist perspective, can be considered to arise as a
result of interactions with others and with institutions. This paper will
outline a funded ERSC CASE studentship intended to address the following:
What are the symbolic meanings of individual patients' needs, risks and
potential held by that individual, differing professionals allocated to
work with them and the overseeing organisation?
How do these govern "therapeutic" interactions?
Do they hinder recovery and effect unintended harm?
Using personal experiences to understand other people's mental health
recovery [
1.6.2009]
Rethink project team: S. Ajayi, J. Billsborough, T. Bowyer, P. Brown, A.
Faulkner, A. Hicks, J.A. Larsen, P. Mailey, R. Sayers, R. Smith
The presentation reports from the 'Recovery Narratives Research Project'.
This involves a team of seven researchers with personal experiences of
mental health problems carrying out in-depth interviews with 50 people
across England about their experiences of mental health recovery. The
project is supported by the mental health membership charity Rethink in
collaboration with MDF - the Bi-Polar Organisation. The researchers use
their own personal experiences in analysing the experiences and insights
shared by research participants, seeking a higher level of reflexiveness
and interpretive understanding. The presentation outlines the rationale for
this research design and discusses how the findings may contribute to
greater critical understanding of processes involved in mental health
recovery.
Andrew
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