Developing the theoretical basis for service user/survivor-led research

Article (PDF Available)inEpidemiologia e psichiatria sociale 14(1):4-9 · March 2005with 614 Reads
DOI: 10.1017/S1121189X0000186X · Source: PubMed
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Abstract
Aims and methods: This article, written from a service user/survivor perspective, explores a hypothesis which seeks to offer a more systematic basis for the full and equal involvement of mental health service users/survivors in both the research process and research structures more generally. The hypothesis challenges traditional emphasis on positivist assumptions about the priority of values of 'distance', 'neutrality' and 'objectivity' (which it argues discriminate against service users and their experiential knowledge). It explores instead the idea that 'the shorter the distance between direct experience and its interpretation, then the less likely resulting knowledge is to be inaccurate, unreliable and distorted.' Results and conclusions: The proposal discusses ways in which such (objective and subjective) distance may be reduced, to improve the quality of research, to enable more equal involvement of service users and their direct experience and to make it possible for non-service user researchers to work alongside service users on more equal terms.
Epidemiologia e Psichiatria Sociale, 14, 1, 2005
4
EMERGING INTEREST IN SERVICE USER
INVOLVEMENT IN RESEARCH
There is now an unprecedented interest in the UK in
service user involvement in research and in service user
controlled research. This needs to be distinguished from
a longer term interest in involving the ‘users’ of research,
which has tended to mean those institutions, organisa-
tions and agencies which may commission and make use
of research, like government, industry, funding trusts and
not for profit organisations. Historically the origins of
this more recent development can be seen to lie with the
disabled people’s movement, but it has now spread to
other areas, including mental health. (Oliver, 1992; 1996;
Barnes & Mercer, 1997; Mercer, 2002; Lindow, 2001;
Wallcraft, 1998) Service users, their organisations and
other supportive researchers continue to provide the
impetus for this initiative, but in recent years strong sup-
port has also come from state sponsored organisations,
the psychiatric service system and mainstream research
organisations. Thus National Health Service Research
and Development (NHS R&D), the body responsible for
an annual budget of £1/2 billion state health research,
established Consumers in NHS Research (subsequently
renamed Involve) which has a responsibility for taking
forward public, patient and user involvement in research
nationally. The National Institute for Mental Health in
England (NIMHE), has set up a service ‘user-led Hub’ to
support and encourage the development of user involve-
ment in its newly established Mental Health Research
Network, whose aim is to support linkages between and
the dissemination of large research projects.
Address for correspondence: Professor P. Beresford, Centre for
Citizen Participation, Brunel University, Osterley Campus,
Borough Road, Islenorth, Middlesex, TW7 5DU (United Kingdom).
Fax: +44-020-7223.7116
E-mail: peter.beresford@brunel.ac.uk
Developing the theoretical basis for service user/survivor-led
research and equal involvement in research
PETER BERESFORD
Director, Centre for Citizen Participation, Brunel University, UK
SUMMARY. Aims and methods — This article, written from a service user/survivor perspective, explores a hypothesis which
seeks to offer a more systematic basis for the full and equal involvement of mental health service users/survivors in both the
research process and research structures more generally. The hypothesis challenges traditional emphasis on positivist assumptions
about the priority of values of ‘distance’, ‘neutrality’ and ‘objectivity’ (which it argues discriminate against service users and their
experiential knowledge). It explores instead the idea that ‘the shorter the distance between direct experience and its interpretation,
then the less likely resulting knowledge is to be inaccurate, unreliable and distorted. Results and conclusions — The proposal dis-
cusses ways in which such (objective and subjective) distance may be reduced, to improve the quality of research, to enable more
equal involvement of service users and their direct experience and to make it possible for non-service user researchers to work
alongside service users on more equal terms.
Declaration of Interest: Peter Beresford is Professor of Social Policy at Brunel University and Chair of Shaping Our Lives, the
national independent user controlled organisation which receives its core funding from the UK Department of Health. No financial
support from pharmaceutical or other commercial companies has been received by the author over the last two years. Funding has
been gained from governmental and non-governmenatal funding agencies.
KEY WORDS: service user involvement, user control, research, theory.
Received 06.11.2004 — Accepted 06.11.2004.
A growing number of major statutory and non-statuto-
ry funding organisations, ranging from the Medical
Research Council, ‘The Big Lottery’ (formerly the
Community Fund), Joseph Rowntree Foundation and
Economic and Social Research Council require evidence
of service user involvement in research bids. There is also
a rapidly expanding literature and a greatly increased pro-
portion of research projects which claim to include ser-
vice user involvement. The move to more service user
involvement in research can also be seen to be an inter-
national one. But already tensions around service user
involvement in research are beginning to emerge
(Beresford, 2002).
EMERGING ISSUES AND CONFLICTS
Such critical debate about ‘user involvement in
research, however tends to be muted and is often more
covert than explicit, because such involvement is increas-
ingly being seen as ‘official policy’. However, service
user involvement in research continues in some quarters
to be seen as qualifying the quality and validity of
research by introducing and including a perspective
which is seen to increase the risk of ‘bias’ in such
research. There is another related issue too. Service user
involvement in research can helpfully be conceived of as
a continuum; from no involvement to research which ser-
vice users initiate, undertake and control. But while tra-
ditionally the former has not been seen as especially con-
tentious, the latter does seem to be, particularly because
it is seen to privilege one perspective or interest – that of
service users.
Thus, while it is increasingly becoming a requirement
for new research projects to secure service user involve-
ment, so far only a tiny proportion of research funding
has been committed to research which is initiated and
controlled by service users and service user organisations
themselves. At the same time service users and service
user researchers continue to find it difficult to get support
for their own independent research projects, particularly
larger scale ones which require significant funding. So far
in the UK, the only large scale mental health research and
development projects which have been ‘service user led
and which have gained funding have been based in non-
user controlled organisations. More generally, there are
growing concerns among service users that much service
user involvement in research is tokenistic and a ‘tick-box
exercise’.
Two related but also distinct issues can be seen to be
emerging here. First reservations about service user
involvement in research and reluctance to implement it
are still significant. Second, however, much stronger
objections and barriers continue to stand in the way of
service user controlled research. Thus research which
highlights service user involvement still has a long way
to go to command the same credibility and legitimacy as
more traditional research approaches. Concerns are
already being expressed informally that mainstream
enthusiasm for user involvement in research may be
shortlived and subject to changes in fashion. As for ser-
vice user controlled research, while it may be seen as the
most developed expression of user involvement
(Beresford & Evans, 1999), it largely remains on the
margins of research and research funding.
A formative example from the disabled people’s
movement offers a helpful case study of many of the
issues involved here. In 1962 a group of disabled people
in the UK invited academic researchers to undertake
independent research into the institutions in which they
lived because they felt that in this way research findings
would give their own (devalued) views added credibility
and the oppressive regimes and the institutional degrada-
tion and discrimination which they felt they were subject
to, would be exposed. To this extent, it could be argued
that there was ‘user involvement’ in this research. In the
event, this influential study rejected the residents’ wish
for more independence and autonomy as ‘unrealistic’ and
the researchers went on to explain that the psychological
problems of ‘cripples’ and ‘incurables’, far from being
the result of disabling social arrangements and institu-
tionalisation - the issues which residents wanted explored
- were, rather, the inevitable result of being disabled. The
disabled people involved felt betrayed. They rejected the
researchers who had described disabled people as ‘unpro-
ductive parasites’ as ‘parasites’ themselves.
The researchers, Eric Miller and Geraldine Gwynne
discussed at length their efforts to conduct neutral, ‘bal-
anced’, ‘detached’ and ‘scientific’ research. (Miller &
Gwynne, 1972) Paul Hunt, one of the leaders of this
group of disabled people and a key founder of the UK
disabled people’s movement, however, highlighted the
study’s bias. He criticised its failure to be ‘neutral’,
demonstrating that it was entrenched in an individualis-
tic/medical interpretation of disability. (Hunt, 1966;
1972; 1981) Subsequently research has confirmed the
views of Hunt and other disabled people that with appro-
priate support, disabled people could live independently
outside such institutions. This experience triggered the
search for a different ‘emancipatory’ approach to
research by the UK disabled people’s movement. This
has been based on principles of changed more equal
Epidemiologia e Psichiatria Sociale, 14, 1, 2005
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Developing the theoretical basis for service user/survivor-led research and equal involvement in research
P. Beresford
Epidemiologia e Psichiatria Sociale, 14, 1, 2005
6
social relations of research production, a social approach
to disability a commitment to the empowerment of dis-
abled people and broader social change consistent with
this. (DHS, 1992; Barnes, 2004)
SERVICE USER RESEARCH:
A PARADIGM SHIFT
As this example highlights, the reality is that service
user or user controlled research represents a fundamental
shift from traditional research approaches. (DHS, 1992;
Campbell & Oliver, 1996; Barnes, 2004) It truly is a new
departure and unless a strong case can be made for the dif-
ferences it embodies, ultimately it may be marginalised. It
is necessary to look more carefully at where it comes from
and what it may be able to offer. It is unlikely to be enough
to make the moral case for such research, important though
this is, yet so far this has been the main argument offered.
Service users and service user organisations may believe
that research must fully and equally involve and be led by
service users and no longer marginalise them. But in a
research world which still sees the randomised control
trial, or ‘RCT’, as the research ‘gold standard’, this is
unlikely to be seen by many mainstream researchers,
research organisations, funders and commissioner as pro-
viding a sufficient, sustained and convincing argument.
The emphasis in mental health research is still on pos-
itivist values of ‘balanced’, ‘detached’ and ‘scientific’
research. The essentially partisan and political nature of
user controlled and emancipatory research, committed to
improving people’s lives, continue to be seen by many
mainstream researchers as weaknesses which qualify
their usefulness in providing rigorous routes to the provi-
sion of reliable knowledge.
Arguing the inherent bias of all kinds of research and
all research methodologies, does not answer such objec-
tions. It is important to develop the methodological and
theoretical case for service user controlled research. And
just such a case can perhaps be made. It is time to begin
to explore it more carefully. It is likely to challenge many
traditional beliefs and assumptions. This paper seeks to
develop this debate. Its arguments have also been set out
in more detail elsewhere (Beresford, 2003).
TRADITIONAL UNDERSTANDINGS
It may be helpful first to look at what might for sim-
plicity’s sake be headlined as the traditional or conven-
tional research argument and approach. Much medical
research, including mental health research has generally
placed a high value on ‘objectivity’. A key principle of
many standard textbooks is that research should be
‘objective’. This is based on the view that things exist as
meaningful entities independent of consciousness and
experience and that rigorous scientifically based research
can discover that objective truth and meaning (Crotty,
1998, p.5). Such an ‘objectivist’ approach to research
highlights the need for and possibility of research which
is neutral, unbiased and distanced from its subject. The
unbiased value-free position of the researcher is a central
tenet of such research. By claiming to eliminate the sub-
jectivity of the researcher, the credibility of the research
and its findings are maximised. Research can therefore be
replicated by other researchers in similar situations and
always offer the same results. Research which does not
follow these rules and which is not based on this value set
tends to be seen as inferior, providing results which are
less valid and reliable.
The emergence of other understandings
However, this approach can now be seen as just one
strand of thought among a variety of emergent approach-
es to research and the production of knowledge, despite
its traditional centrality in medical research. (Reason &
Rowan, 1981) A whole range of research approaches crit-
ical of such values and assumptions have emerged. All
raise issues about the researcher’s relation with the world.
Some, notably feminist approaches have highlighted the
nature of the relationship between researcher and
research participants, critiquing traditional ‘scientific’
epistemology as a means of domination by those with
power in society. They reject the idea of ‘objectivity’ as
a feasible constituent of any research (Harding, 1993).
The devaluing of experiential knowledge
As can be seen, service user controlled or emancipato-
ry research is not the first research approach to challenge
traditional methodological frameworks. What distin-
guishes emancipatory and user controlled research from
traditional approaches, though, is the emphasis it places
on experiential knowledge; the importance of service
users developing and being involved in research because
of their direct personal experience of the issues under
study. Thus, service users are seen to ‘know what they
are talking about’ because they have directly experienced
it. However, this flies in the face of traditional research
values of ‘neutrality’, ‘objectivity’ and ‘distance’. By
these criteria, the ‘knowledge’ of service users will auto-
Epidemiologia e Psichiatria Sociale, 14, 1, 2005
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Developing the theoretical basis for service user/survivor-led research and equal involvement in research
matically be seen to have less value, less credibility and
legitimacy. Historically, we know this is what has hap-
pened. Meanwhile the knowledge ‘claims’ of researchers,
academics and analysts without such direct experience
has been attributed higher status.
This has some disturbing implications, which so far
have tended to be overlooked. Where values associated
with research and the development of knowledge about
people and how they live, prioritise being distant and sep-
arate from the subject under consideration, it raises major
concerns for the people who are the subject of such
research or about whom knowledge is being sought.
If an individual has direct experience of problems like
disability, poverty or using the mental health system; if
they have experience of oppression and discrimination,
when such research values are accepted, what they say
will also be seen as having less legitimacy. Because they
will be seen as ‘close to the problem’ – it directly affects
them – they cannot claim that they are ‘neutral’, ‘objec-
tive’ and ‘distant’ to it. So in addition to any discrimina-
tion and oppression they may already experience, they
face an additional problem. They are likely to be seen as
a less reliable, less valid source of knowledge. It is possi-
ble to see how this worked for a long time against women
and children who were subjected to sexual and violent
attacks. In male dominated societies, these were not
placed high on public or political agendas. The knowl-
edge and experience of women and children who experi-
enced such attacks were not listened to or valued. It is
only in recent years in western societies that issues like
child sexual abuse, domestic violence and rape have
begun to be acknowledged publicly and formally as seri-
ous problems.
What this means effectively is that if someone has
experience of discrimination and oppression they can
expect routinely to face further discrimination and be fur-
ther marginalised by being seen as having less credibility
and being a less reliable source of knowledge. This is
likely to have the effect of further invalidating people
who are already heavily disadvantaged.
This problem is magnified for mental health service
users because their identity is generally devalued and
they are frequently treated as though their knowledge is
suspect because they are seen as irrational and lacking
reliable perceptions and judgement.
However traditional devaluing of experiential knowl-
edge by mainstream research flies in the face of much of
the rest of human experience, where generally, people
learn to place a premium on finding out about things from
those who have direct experience and drawing on their
first hand knowledge. In colloquial terms, we seek the
expertise of people who have ‘been there, done it, got the
tee shirt’ – people who ‘know’. Thus in accepting tradi-
tional research judgements of knowledge based on direct
experience, both individual and collective experience, we
seem to be disregarding the authority which we have usu-
ally learned to invest in other areas of human activity and
life. Traditionally, conventional research and researchers
appropriated the experience of research participants argu-
ing that they themselves were better equipped to interpret
it because of their own ‘distance’ from the experience.
While these assumptions may be helpful in the natural
sciences (and even this view demands further scrutiny), it
is questionable whether they can be taken as given in the
human and social sciences, which are so closely based on
human interactions and subjective interpretations.
Reviewing the role of experiential knowledge
It is perhaps now time for mental health and other
service users and service user researchers to begin to
question some of these assumptions. It is likely to be no
less helpful for researchers more generally to do this. One
assumption which particularly needs to be re-examined is
that:
the greater the distance there is between direct
experience and its interpretation, the more reliable it is
It is perhaps time instead to explore the evidence and
the theoretical framework for testing out whether:
the shorter the distance there is between direct experi-
ence and its interpretation (as for example can be offered
by user involvement in research and particularly user
controlled research), then the less distorted, inaccurate
and damaging resulting knowledge is likely to be.
It is not being suggested here that this alternative is
necessarily ‘more valid’ than the traditional understand-
ing. There may also be a potential problem in trying to
use a conventional hypothesis or research tool for explor-
ing what is essentially a qualitatively different research
approach. But the aim here is very much an initial one, of
trying to explore modern emancipatory and service user
controlled research approaches in ways which may be
helpful both to service user researchers and mainstream
researchers. In addition, if we seek to test out this alter-
native hypothesis, we will undeniably have moved from
assuming that there is objectivity in social research. But
given the theoretical and methodological developments
over the last 20 and more years, it seems helpful to
address this widely accepted reality and acknowledge the
value of including the subjective in our approaches to and
understanding of research and knowledge formation.
Developing such a hypothesis may offer us intellectual
and academic arguments, to complement current moral
arguments for extending service user involvement in
research and particularly in service user controlled
research. It may equally lead us to adopt a more critical
response to it and help us to differentiate helpfully
between different approaches to service user involvement
in research.
It is important at this relatively early stage in the
development of service user controlled research to
acknowledge that it is still vulnerable to accusations of
being weak, partisan and distorting. We need now to
begin the process of systematically testing such user con-
trolled research to identify its strengths and weaknesses
as a basis for evaluating and improving it. Only in this
way are we likely to move forward. Some initial thoughts
on the questions we should be asking of the research we
are conducting are likely to include:
Do research participants feel they are treated in the
same way by service user and non-service user
researchers?
Do conventional and service user interviewers ask the
same questions of research participants, and how do
the differences affect the findings?
Do conventional and service user interviewers get the
same or different answers to their questions, and how
do they differ?
Do research participants feel that service user and non
service user researchers bring different assumptions to
the work, and how might this affect the data that is
produced?
Do service user researchers interpret the responses of
service users differently to conventional researchers,
and what effects might this have on the findings of
research?
What might be the differences between the outcomes
(what happens as a result) of traditional and user con-
trolled research?
Are the data resulting from user controlled research
more or less accurate and reliable than that produced
by traditional research approaches?
Already we are beginning to get some feedback to
these questions. (Faulkner & Nicholls, 1999; 2000;
Nicholls, 2001; Rose, 2001; 2003; SURE, 2002; Nicholls
et al., 2003). By asking them systematically, we can
begin to accumulate the evidence needed to make the
research argument, in addition to the moral argument, for
user controlled research.
Two further points should also be made here. First,
arguing for service user involvement in research and user
controlled research is not to argue for the dilution of
research rigour or quality. It does not mean that how
research is undertaken, including designing schedules
and questionnaires, carrying out interviews and collating,
analysing and writing up findings, will be done in any
less systematic or thorough a way. It is likely to mean that
research is undertaken differently, but not less well. Nor
does it mean that only one research approach would nec-
essarily be adopted. For example, it can include both
quantitative as well as qualitative approaches.
Second, it is not being argued here that only service
users can undertake research or interpret the experience
of service users. Instead the suggestion is that service
users and user researchers have a key and equal role to
play, which has frequently been denied them. But if non-
service users do seek to undertake research and interpret
service users’ knowledge and experience, then they must
seek to get closer to it.
Already a number of (unhelpful) factors are indicated
which may add distance between one person’s experience
and another’s interpretation of it. These include a range
of structures, attitudes, systems and beliefs which get in
the way between the two. For example:
Unequal power relationships between the two, result-
ing in either hostile or paternalistic understandings;
Seeing people as inferior, pathological or ‘other’.
•A lack of awareness on the part of outside interpreters
of their own position in relation to other people’s
experience, cultures and perspectives;
Where people or groups are separated by discrimina-
tions relating to class, race, gender and other forms of
difference;
Commitments to ideologies, agendas, values and vest-
ed interests which pull people away from valuing or
being able to appreciate the other person and their
experience;
Socialisation into and reliance on models of under-
standing which subordinate and pathologise people;
Professional training which further distances people
from those with whom they work by stressing their
controlling role, ‘expertise’ and ‘boundaries’.
These would need to be challenged if others want to be
involved alongside service users and their organizations
in analyzing and taking forward their experience and
knowledge with them.
P. Beresford
Epidemiologia e Psichiatria Sociale, 14, 1, 2005
8
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    Background: Research capacity development (RCD) is considered fundamental to closing the evidence-practice gap, thereby contributing to health, wealth and knowledge for practice. Numerous frameworks and models have been proposed for RCD, but there is little evidence of what works for whom and under what circumstances. There is a need to identify mechanisms by which candidate interventions or clusters of interventions might achieve RCD and contribute to societal impact, thereby proving meaningful to stakeholders. Methods: A realist synthesis was used to develop programme theories for RCD. Structured database searches were conducted across seven databases to identify papers examining RCD in a health or social care context (1998-2013). In addition, citation searches for 10 key articles (citation pearls) were conducted across Google Scholar and Web of Science. Of 214 included articles, 116 reported on specific interventions or initiatives or their evaluation. The remaining 98 articles were discussion papers or explicitly sought to make a theoretical contribution. A core set of 36 RCD theoretical and conceptual papers were selected and analysed to generate mechanisms that map across macro contexts (individual, team, organisational, network). Data were extracted by means of 'If-Then' statements into an Excel spreadsheet. Models and frameworks were deconstructed into their original elements. Results: Eight overarching programme theories were identified featuring mechanisms that were triggered across multiple contexts. Three of these fulfilled a symbolic role in signalling the importance of RCD (e.g. positive role models, signal importance, make a difference), whilst the remainder were more functional (e.g. liberate talents, release resource, exceed sum of parts, learning by doing and co-production of knowledge). Outcomes from one mechanism produced changes in context to stimulate mechanisms in other activities. The eight programme theories were validated with findings from 10 systematic reviews (2014-2017). Conclusions: This realist synthesis is the starting point for constructing an RCD framework shaped by these programme theories. Future work is required to further test and refine these findings against empirical data from intervention studies.
  • Article
    Background and aim: Medicine is traditionally considered a healing profession, yet concepts of healing are rarely applied to mental illness, recovery being the dominant discourse. This article reports one aspect of the results of a broader exploration, through a service user lens, of aspects of place that facilitate healing in mental health care, with a resulting conceptualisation of healing. Method: The research material comprised the author's historical writings of her experience of mental illness and recovery and in-depth individual interviews with 10 mental health service users. Analysed thematically, emerging ideas were further developed through an autoethnographically informed, reflexive and iterative process. Results: Healing is necessary when there has been a disruption of integrity and wholeness, experienced as suffering. Offering opportunities for connection, integration and transformation, and acquiring wisdom along the way, healing is a journey of exploration that takes time and is hard work. Discussion: Healing is conceptualised as the intensely personal experience at the heart of recovery, reminding us of the fundamental personal processes at the heart of our journeys. As a universal human experience, healing potentially removes the sense of othering that is at the heart of mental illness stigma.