Full Terms & Conditions of access and use can be found at
http://www.tandfonline.com/action/journalInformation?journalCode=cesw20
Download by: [Masarykova Univerzita v Brne] Date: 08 August 2017, At: 07:14
European Journal of Social Work
ISSN: 1369-1457 (Print) 1468-2664 (Online) Journal homepage: http://www.tandfonline.com/loi/cesw20
Exploring the value of involving experts-byexperience
in social work research: experiences
from Slovenia and the UK
Petra Videmšek & Joanna Fox
To cite this article: Petra Videmšek & Joanna Fox (2017): Exploring the value of involving expertsby-experience
in social work research: experiences from Slovenia and the UK, European Journal of
Social Work, DOI: 10.1080/13691457.2017.1292220
To link to this article: http://dx.doi.org/10.1080/13691457.2017.1292220
Published online: 17 Feb 2017.
Submit your article to this journal
Article views: 53
View related articles
View Crossmark data
Exploring the value of involving experts-by-experience in social
work research: experiences from Slovenia and the UK
Raziskovanje vrednosti vključevanja ljudi z osebno izkušnjo v
raziskovanje v socialnem delu: izkušnje iz Slovenije in Združenega
kraljestva
Petra Videmšeka
and Joanna Foxb
a
Faculty of Social work, University of Ljubljana, Ljubljana, Slovenia; b
Faculty of Health, Social Care and Education,
Anglia Ruskin University, Cambridge, UK
ABSTRACT
The evidence base for the methodological validity of conducting
participatory research is becoming established. This article reviews the
experiences of two researchers undertaking Ph.D. studies in Slovenia
and UK, respectively, and considers the value of involving service users
and carers in social work research. The Slovenian research involved userresearchers
who developed research tools and undertook qualitative
research. The first author explores the co-researchers’ impact on the
research process and its outcomes, identifying both individual and
collective empowerment of the co-researchers. The English study
involved people from diverse backgrounds, who developed a recovery
training programme for carers of people with schizophrenia. The second
author describes how the steering group, and the carers who
participated in the programme were impacted by the research process
and experienced a sense of empowerment and how they influenced the
development of new knowledge through the reflexive cycle. The authors
draw out the commonalities and differences in our research that add to
the existing evidence base supporting the development of participatory
inquiry. We conclude by affirming the value of user participation in
research in leading to the empowerment of users, the development of
new research perspectives, and in contributing to theory in social work
research and practice.
POVZETEK
Vključevanje ljudi z osebnimi izkušnjami v raziskovanje se vse bolj
uveljavlja. Članek je pregled dveh raziskav, izvedenih v okviru doktorskih
disertacij v Sloveniji in Združenem kraljestvu, ki prikažeta pomembnost
vključevanja ljudi z osebnimi izkušnjami v raziskovanje v socialnem delu.
Slovenska raziskava vključuje uporabniško raziskovanje: ljudje z osebnimi
izkušnjami so razvili raziskovalni proces in izvedli kvalitativno raziskavo.
Prva avtorica tega članka prikaže vpliv sodelovalnih raziskovalcev na
raziskovalni proces in rezultate raziskovanja s prikazom tako individualne
kot kolektivne krepitve moči udeleženih raziskovalcev, poleg tega pa
pojasni, kako uporabniško raziskovanje pripomore k novemu znanju.
Britanska študija pa vključuje ljudi iz različnimi socialnih okolij, ki so
razvili program okrevanja za svojce ljudi s shizofrenijo. Druga avtorica
KEYWORDS
Social work; research; mental
health; user involvement;
participatory inquiry
KLJUČNE BESEDE
socialno delo; raziskovanje;
duševno zdravje;
vključevanje uporabnikov;
sodelovalno raziskovanje
© 2017 Informa UK Limited, trading as Taylor & Francis Group
CONTACT Joanna Fox joanna.fox@anglia.ac.uk
EUROPEAN JOURNAL OF SOCIAL WORK, 2017
http://dx.doi.org/10.1080/13691457.2017.1292220
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
tega članka predstavi, kako je raziskovalni proces vplival na kontrolno
skupino in svojce, ki so sodelovali v programu. Pokaže, kako so
udeleženci kontrolne skupine in svojci doživeli krepitev lastne moči in
kako so vplivali na razvoj znanja s pomočjo refleksije. Avtorici
predstavita tako podobnosti kot razlike v njunih raziskavah in pokažeta,
kako nova vednost, ki je rezultat njunega dela, pripomore k razvoju
sodelovalnega raziskovanja. Članek skleneva s trditvijo, da vključevanje
ljudi z osebnimi izkušnjami v raziskovanje vodi v krepitev moči teh ljudi,
razvija nove perspektive v raziskovanju in plemeniti teorijo in prakso
socialnega dela.
Introduction
The evidence base for establishing the methodological validity of involving service users in research
is increasing in social work and allied health research across Europe (Fox, 2015; Nicholls, 2001; Ramon,
2003; Van Haaster & Koster, 2005; Videmšek, 2009, 2011, 2014; Zaviršek & Videmšek, 2009). Both
service users and researchers are seeking to embrace diverse stakeholder perspectives in the research
process. Central to this debate are issues of power, how best to involve different perspectives in the
development and design of research, and discussion of the validity of the production of knowledge
(Fox, 2013; Ramon, 2003; Urek, 2005; Videmšek, 2014; Zaviršek & Videmšek, 2009).
In this article the authors describe two research projects undertaken in Slovenia and the UK,
respectively, which involve experts-by-experience and experts-by-caring extensively in their design
and development. The first author involved experts-by-experience in her Ph.D. study which investigated
the experiences of people with mental ill-health living in group homes in Slovenia. In her doctoral
thesis she shows the epistemological shift, produced by the inclusion of people with the lived
experience of a mental ill-health crisis and its aftermath, and demonstrated how this can lead to both
their individual and the collective empowerment. The second author describes how her own experience
of recovery enabled her to explore the usefulness of the recovery model to the lives and caring
roles of family members who support people with schizophrenia. We (both authors) initially review
how user involvement has developed within these two countries and then consider how our research
contributes to this wider field. We address three aspects:
. the interaction between the research process and the co-researchers;
. the influence of service user participation on the outcomes of the research; and
. the influence of service users’ and carers’ silent knowledge on social work knowledge and practice.
This discussion will enable us to explore the significance of new paradigm research which
promotes co-production, adding to the methodological evidence base of involving experts-byexperience
in social work research.
Development of user involvement in both Slovenia and the UK
The change in European cultures and delivery of services from total institutions (Goffman, 1961) to
care in the community, reflected in both Slovenia and the UK, was accompanied by the development
of empowerment philosophies (Ramon, 1991). This reflected the rich flow of notions of user empowerment
that accompanied the philosophy of the reintegration of service users into communities,
even if reintegration was more rhetoric than reality (Ramon, 1991). In the late 1960s academic
researchers began to have an interest in exploring the users’ perspective in the research process
(Mayer & Timms, 1970); later, a variety of movements led to the inclusion of users in research,
from the feminist movement at the end of 1980s, and in parallel to the development of the disability
movement (Barnes & Bowl, 2001; Ramon, 2003; Videmšek, 2013). These movements highlighted that
2 P. VIDEMŠEK AND J. FOX
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
service users’ own experiences had been often disregarded and overlooked. At the end of the 1990s,
the user movement begun to emphasise the importance of user-led research that enabled service
users’ voices to be heard (Evans & Fisher, 1999; Ramon, 2003; Videmšek, 2009). Thompson (2002)
notes that social movements have definitively influenced social work theory and practice in a
variety of ways. The development of user-led research promotes a new relationship between the
researcher and the subject of the research and moreover between providers of the service and
their users.
The service user movement challenged the traditional model of professionalism, emphasising the
rights of service users and highlighting their expertise. Numerous changes resulted from the inclusion
of service users in research, redefining the relationships of power. As users’ voices began to be heard
(Oliver, 1992), their perspective began to have a place in the process of research and they were recognised
as ‘experts-by-experience’ (Van Haaster & Koster, 2005). Since 1990, participatory research that
emphasises this ethos has emerged, together with action research. Humphries (2001) asserts that
those who want to bring about genuine change in the lives of poor and exploited groups need to
find new methods and new ways of thinking about social problems. The development of new techniques
of data collection and qualitative empirical material analysis provided conditions which
enabled the inclusion of users in research as co-researchers. Participatory research involves those
who might traditionally have been categorised as subjects of research (Banks & Barnes, 2009; Humphries,
2001), and is based on a partnership ideology.
Service user participation in research is manifested at different levels, with Arnstein’s ladder of participation
(Arnstein, 1969) being the first presentation of community involvement in research, representing
the different levels of involvement that organisations can achieve. INVOLVE, the UK body
charged with responsibility for developing public and patient involvement in health and socialcare
research (Hanley et al., 2000, 2004, 2012), develops this model further and proposes three
levels of service users’ and carers’ involvement in research: consultation, collaboration, and
control. Additionally, Staley (2009, p. 13) defines the meaning of public involvement as ‘doing
research “with” or “by” the public, rather than “to”, “about” or “for” the public’.
Approaches in Slovenia and the UK share some commonalities in both co-produced and participatory
forms of inquiry. In Slovenia a historical overview shows that participation as such has been
part of social work practice from the beginning of professional social work (Vodopivec, 1959). With
the development of social work as a science there was an increasing credibility placed on the
expert wisdom of service users as they become involved in influencing different levels of research.
The major shift towards user participation and user research was driven by both individual disabled
activists such as Lamovec (1995) and disability activist groups who impacted the political arena, such
as the YHD-Association for the Theory and Culture of Handicap (Pečarič, 2004). Lamovec (1995) published
critical articles based on her own personal experiences of mental ill-health and advocated user
involvement into research. She wrote a chapter in her book about the epistemological shift in social
work practice that accompanies user involvement in research (Lamovec, 1995) and challenged the
dominant discourse of power and knowledge production, advocating the credibility of the expert
wisdom of service users as they became involved in influencing research. In the mid-1990s people
with mental health problems in Slovenia were involved in research (Flaker et al., 1999). In 2001,
the very first Roma student who enrolled at the school of social work participated in a national
survey on the living conditions of Roma ethnic minorities representing the perspective of the
oppressed from the beginning of the research (cf. Minority Protection in Slovenia: National Report.
Open Society Institute, EU Accession Monitoring Program, Budapest. CEU Press, Budapest, 2001)
(Zaviršek & Videmšek, 2009).
First participatory user-led research with mental health service users was conducted in 2007
(Videmšek, 2009, p. 181); and was built on in 2009 when the same group of mental health service
users who contributed to Videmšek’s Ph.D. work conducted their own, user-controlled research
(Videmšek, 2011). They prepared user-controlled research on the issue of employment, and obtained
financial support from the Municipality of Ljubljana (Cigoj, 2009). This was the first example of
EUROPEAN JOURNAL OF SOCIAL WORK 3
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
research in Slovenia when users with mental health difficulties controlled and conducted their own
research. Further examples of user involvement in research, can be found in Slovenia, not only in the
field of mental health, but also in the field of intellectual disability (Bratec & Kos, 2011), and cooperative
research with older people (Grebenc, 2014, p. 104). Expert user knowledge is now recognised in
Slovenia as a valued source of wisdom as service users become leaders in the research process and no
longer merely consultants; furthermore Slovenia encompasses all three levels of user involvement
with reference to Arnstein’s (1969) Ladder of Participation.
In the UK, the strengths approach in social work (Rapp, 1992; Rapp & Goscha, 2012) promoted a
new way of working focusing on consumers’ strengths rather than their deficits. Currently the personalisation
agenda (Department of Health [DH], 2006), underpinning British social care, is a model of
practice that seeks to optimise individual users’ choice and control of social care resources, building
on the notion of user involvement in care. Alongside this, in the UK there is increasing credibility
placed on the expert wisdom of service users and carers as they become involved in influencing
different levels of research. The involvement of the public is increasingly politically mandated in
the development of publicly funded health service research in the UK, due to:
. a commitment to the human rights of people who use services (Uhm, Liabo, Stewart, Rees, &
Oliver, 2012);
. its effectiveness in supporting effective methodologies (Faulkner, 2010); and
. reasons of political expediency (DH, 2011).
The requirement for user involvement is reflected in both health (Willis, 2012) and social care
(Levin, 2004) practice, and more widely in other disciplines in mental health practice and research
(CSIP, RCPsych, and SCIE, 2007; Rose, 2001).
The research studies
The authors present two experiences of involving service users and carers in research in Slovenia and
the UK, respectively, which were conducted individually by both authors for their Ph.D.s. Throughout
this discussion we consider the contribution of user-led research to the construction of social work
knowledge and indirectly on people who use social care services.
The Slovenian study
The research aimed to explore the epistemological shift produced by the inclusion of people with the
lived experience of a mental ill-health crisis and observe their empowerment process and outcomes. I
(the first author) wanted to ensure that the voice of historically ‘silenced subjects’ would be heard in
order to demonstrate the value of cooperative inquiry (Heron, 1996; Reason, 1994) and its potential
impact on the social work profession. I was exploring, firstly, if cooperative research can be a tool for
user empowerment; secondly how ‘silent knowledge’ can influence the research process; and thirdly
if I could understand the structure and characteristics of the group home and how the residents, who
were involved in the research, might want to change it.
The research process followed nine phases, as described by Flemming and Ward (1999). I used an
interpretative methodology adopting cooperative inquiry. Five people with personal experience of
mental ill-health were trained as researchers (Videmšek, 2011). Data collection specifically focused
on research with people rather than research on people, (Reason, 1994), a process which prioritises
service users’ knowledge and experience. Twelve structured interviews, designed and prepared by
people with personal experience of mental ill-health were conducted by these same experts-byexperience
within three NGOs which supported people with mental ill-health. People with personal
experience of mental ill-health participated in all parts of the research and defined the themes, prepared
the questionnaire, undertook the interviews, and participated in the data analysis and the dissemination
of the results.
4 P. VIDEMŠEK AND J. FOX
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
The English study
The research in the English experience was undertaken by the second author, a social worker with
personal experiences of mental health recovery from schizophrenia. The research aimed to explore
the impact of learning about recovery on carers of people with schizophrenia. The recovery approach
is a concept and practice that underpins British mental health policy (DH, 2011) and is an aspiration of
service delivery. Carers’ views and experiences of recovery have hitherto not been investigated (Scottish
Recovery Network, 2009), and their involvement in research processes is under-developed
(Mental Health Research Network [MHRN], 2012).
A steering group of stakeholders including people from professional, family-caring, and research
backgrounds met over a year to develop a training programme on recovery and accompanying
evaluation tools to explore the impact of learning about recovery on carers’ lives, caring behaviour,
and attitudes. I (the second author) as the principal investigator and facilitator of the programme also
have my own experiences of mental ill-health which were central to the development of the research
and the delivery of the programme. A sample of 11 carers was recruited to participate in a five-session
training programme on recovery (delivered by myself and a carer) and subsequent evaluation. Mainly
qualitative data was collected with supplementary socio-demographic data. Carers responded to
written vignettes at the start and end of the training programme (Hughes & Huby, 2004) with a subsequent
focus group to allow them to share and compare their reactions (Morgan, 1998) to learning
about recovery, and to evaluate the training programme. The final focus group was facilitated by two
members of the steering groups not involved in the programme delivery. Subsequent semi-structured
interviews were conducted by me the main researcher with the carers at one month and six
months to see if any changes identified following participation in the training programme were
sustained.
A Participatory Action Research approach (Freire, 1970) was utilised that acknowledged the my
values and identity in the research as the main investigator and enabled the action research cycle
to formatively influence the process. The steering group participated in the first action research
cycle developing the training programme and data collection tools and the carers were involved
in a second cycle that allowed us to develop theory about the meaning of recovery to carers as
they participated in analysis and reflection.
Discussion
In order to develop this article both authors, separately and together, identified the themes and
concepts that were both common and different to our respective research. We sought to derive
explanations for these themes and contribute to the evidence base supporting the development
of user-led forms of inquiry. In this section we investigate:
. the interaction between the research process and the co-researchers;
. the influence of service user participation on the outcomes of the research; and
. the influence of service user silent knowledge on social work knowledge and practice.
Firstly we recognise the importance of interaction between the research process and the co-researchers.
This encompasses both how the researchers’ expert knowledge influences the research process,
such as opening up new knowledge and ideas, and how the research process impacts on userresearchers,
such as building skills and enabling a process of empowerment. During the two years
of the research in Slovenia, participants were empowered on both an individual and a collective
level. On an individual level, the researchers gained more self esteem and recognised themselves
as experts on their particular condition gaining a sense of mastery over their lives. Individually,
empowerment was reflected in terms of personal growth, as the following statements from the
co-researchers in the reflection meeting show: ‘I see myself as somebody who has knowledge.
EUROPEAN JOURNAL OF SOCIAL WORK 5
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
I started to write stories and look forward to future research. I really like being a researcher’ (Sonja,
personal notes, 2007). ‘The research brought a really positive result of empowerment and, in turn,
personal satisfaction. Ever since we have started to work together I have gained some self-respect’
(Jože, personal notes, 2007). This appears to be central to attaining a high level of functioning and
good outcomes from the illness as they made future plans for their lives. ‘Now, when I meet with
other, communication is going to other direction. We do not talk only about medication as we did
it before, but we are discussing about our future plans’ (Milan, personal notes, 2007). They not
only made new friends, but constructed a new social network as they developed a sense of social
inclusion through completing a valued task. Collectively, people have started to interact and have
established their own user-led organisation Mostovi (Bridges) undertaking their own user-controlled
research. This tendency to build on experience has also been noted by other researchers (Beresford,
2000; Evans & Fisher, 1999; Videmšek, 2013, 2014).
In the UK research, the carers also went through a process of empowerment. Participation in the
training programme enabled the carers to recognise that they needed to become recovery mentors
of their relative rather than do everything for the service user. The second author’s own experiences
as a service user were central to enabling them to understand the service user experience and to
understand the impact of their caring behaviours. Although they wanted to support the service
user and ensure their comfort and safety, they realised that they needed to become enablers. The
carers also began to recognise that they were themselves on a journey of recovery. This journey
reflected much of the experiences of recovery that the service users themselves experienced – it
reflected the process of moving from chaos and confusion, to involvement of services, recognition
of grief, learning to detach with love, and setting a goal of recovery for the carers and the service
user (Carers-one-to-one Link (COOL) Recovery, 2003). Carers also began to recognise their own expertise
by caring which allowed them to occupy a place of authority in their relationships with
professionals.
Related to this discussion, the involvement of service users impacted the process of research as
both studies completed by the two authors were supported by steering groups which included
experts-by-experience and -by-caring. In Slovenia the steering group enabled comparison
between questions that were developed by social work researchers and questions that were developed
by people with lived experience. It enabled the researchers to review the issues which were
emphasised by the different groups. A researcher with such an experience of mental health crisis
is not using pre-determined categories, but forms the questions in the most appropriate way to
her/his understanding of a phenomenon. In the Slovenian research the user-researchers revealed
new themes in their interviews as they allowed service users to address issues outside of the research
protocol that would not have been considered by academic researchers; this included: suicide by
people with mental health difficulties, a subject often overlooked in group homes, sexuality, forbidden
visits and also questions of professional power (controlling the number of cigarettes, restrictions
on domestic animals, access to Internet, etc.) (Videmšek, 2017).
In the UK, the steering group participated in the first action research cycle developing the training
programme and data collection methods. They contributed to the evaluation of the training
programme and commented on the research findings. One carer was involved in the steering
group, and also involved in delivering the training programme. Her participation in the research
also enabled her to develop skills and build a sense of empowerment. The inclusion of different
stakeholder viewpoints allowed greater representation of differing perspectives and values. The
second author’s own experiences as a service user underpinned the delivery of the training as
the carers were able to relate to her own authentic experiences of psychosis and the subsequent
recovery journey.
Secondly, in research undertaken by both authors we recognised the different types of knowledge
and expertise that contributed to the development of our research findings and how these perspectives
influenced the outcomes of the research. Beresford (2001, p. 350) argues that:
6 P. VIDEMŠEK AND J. FOX
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
This changed approach to research and knowledge formation needs to start with the full and equal inclusion of
the experiences and knowledges of service users in research. For this to be possible on truly equal terms, requires
the full and early involvement of users and their organisations in the construction and process of research and
evaluation, as indeed of other areas of social care … .
Service user and carer expertise-by-experience complemented the practice and academic wisdom of
professional researchers.
Central to discussion about the impact of service user involvement on research outcomes is the
issue of power and how it is exercised. Research is an expression of power relations, which has a
direct bearing on the product of the research or knowledge-building enterprise – the outcome of
the research. When service users are involved in research, their perspective becomes one of the
most valued qualitative methods for ensuring that their experiences are accounted for. It highlights
the centrality of the relationship between the researcher and the subject of research. Questions of
power can reflect different interests and levels of analysis that represent very different concerns
about power, such as who has power, who can control whom, who can get what, who defines the
issue, who decides what to research. These power relations are especially important when users
are supported by social workers in carrying out research. Some concerns in the Slovenian context
included: issues relating to power relations between the researchers themselves, such as who
would determine the research issue? And who would construct the statements and make sense of
them? Greater equality in the relationship between the researchers themselves can be enabled
through the careful selection of terms used (How do different researchers address one and
other?). It is important that the service user researcher is respected and treated as a person with
agency and an active contributor to the research, not a passive object that is just one part of the
research process.
In the UK, some concerns were expressed about using the terminology ‘carers’, ‘family members’
or ‘relatives’. This was quite controversial as not many of the carers in the programme recognised
themselves as such, and identified themselves as ‘mum’, ‘dad’, or ‘sibling’. Indeed the word ‘family
member’ can be quite limiting as not all carers have a kin relationship (MHRN, 2012). This terminology
can be both simultaneously empowering and disempowering. It can give family carers an identity
which allows them to acknowledge their caring role or it can make them feel negatively labelled
and stereotyped, and force the service user to recognise themselves as in need of a carer (Kilyon
& Smith, 2009). Despite underlining the value of service user involvement, it can still be difficult
for service users and carers to believe they have power in a research process because their
contact with services can lead them to feel under-skilled, under-prepared, and often disempowered
(Fox, 2009).
Finally, this research shows the potential for silent knowledge which is derived from expertise-byexperience
to influence social work knowledge and practice. Silent knowledge can be defined as
knowledge that each person with experience has; silent knowledge, as stated by Urek (2005), is
enabling those without social power to express their own perspectives. In the Slovenian research,
different sorts of knowledge helped the team of co-researchers to understand the complexity of
social work practice as the experts-by-experience co-produced new knowledge from their own
lived experiences of using services. From the data, it emerged how important relationships in the
group homes are (especially the relationship between them and social workers) and how they
value a way of working based on partnership and respect and that values their life experiences (‘I
am not sure if social workers see me somewhere else than here’); furthermore they reflected on
the importance of time and its meaning in their life as they considered how long people should
stay in group homes and the positive and negative aspects of living there, either temporarily or
for longer periods. Through the research process, both the first author and the co-researchers
were able to identify knowledge that emanated from the perspectives of experts-by-experience
using social care (Videmšek, 2014, 2017).
In the UK, the wider carers’ group influenced the second action research cycle of the research
project developing the content, format and process of the training programme and the development
EUROPEAN JOURNAL OF SOCIAL WORK 7
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
of theory about carers and recovery. The carers’ participation in the research was situated at the level
of ‘contribution’ as described by Sweeney and Morgan (2009). Sweeney and Morgan (2009) propose
an extra level of involvement between consultation and collaboration on the INVOLVE level which
they call ‘contribution’ and define as: ‘ … research where service users/survivors make a significant
and meaningful contribution to research but with power and decision-making still residing with traditional
researchers’ (p. 9). This demonstrates the contribution of the silent knowledge to the UK
study and how it influenced the development of new theory about the role of carers in recovery.
(This is further discussed in Fox, Ramon, & Morant, 2015.)
Both the two main authors and the co-researchers in the studies found that when the needs and
views of users are reflected in research, it is more likely to produce results that can be used to improve
social work practice and articulate the answer to HOW to do it differently. The Slovenian research
shows that when experts-by-experienced are involved in research this can lead to the creation of services
tailored to the individual. Experts by experience suggested, ‘In the house it should be written
that domestic animals are allowed and that the owner takes care of it.’ ‘Each of us decided by ourselves
the amount of cigarettes. If we need help we will ask for it.’ ‘Risk is permitted.’ The UK research
led to the development of a service model based on the carers’ experiences of supporting their family
member by using the recovery approach (Fox et al., 2016). This research generated a triangular model
based on the UK Triangle of Care (Worthington & Rooney, 2009) that represented how service users,
carers, and professionals could work together to support both the service user’s and the carer’s
recovery.
Furthermore both experiences confirm the findings of earlier studies (Evans & Fisher, 1999; Home,
1999; Ramon, 2003; Schafer, 2003) that cooperative and participatory inquiry contribute to the
empowerment of individuals as they are able to develop their expertise which is valued in research
processes. Both experiences show that inclusion of people with personal experience of mental illhealth
and their carers into research can validate the so-called ‘silent knowledge’. The research findings
lead both authors to suggest that the inclusion of people with personal experiences enables
more precise knowledge about the life of people with the lived experience of mental health crisis
and their carers, and that experience is a valid source of knowledge.
In summary, user-led research is important for a number of reasons:
(1) Co-production contributes to the language of change. If we hear the words of service users and
learn from them, this can lead to the production of new knowledge.
(2) The process of reflexivity undertaken in partnership with our co-researchers led to the development
of new knowledge.
(3) Respectful alliances with experts-by-experience enable researchers to see the situation from
different perspectives.
(4) Co-production is based on a strengths perspective, which acknowledges that service users are
active and visible participants. This acknowledgement subsequently influences social work practice
more widely.
Conclusion: the contribution that experts-by-experience can make to knowledge
construction
One of the major impediments for service user involvement in research is a strong professional limitation
that regards service users as being needy and dependant, lacking competency and skills
(Schultz, 2007; Zaviršek & Videmšek, 2009). Inclusion of people with lived experience in research validates
notions that service users have their own, original, experiential knowledge, or, as defined by
Haaster and Koster (2007), knowledge from ‘the bottom’ based on personal experience. It is, therefore,
imperative to enable user experiences to influence the creation of social work theories and practice.
The role of a professional worker is to acknowledge such knowledge, as Ramon (2003, p. 16)
8 P. VIDEMŠEK AND J. FOX
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
states: ‘user research has been developed as a method of creating new knowledge, hitherto hidden
and often described as invalid by professionals’. Ramon (2003) argues that knowledge gives power,
and is often used by those in power for their own purposes; indeed knowledge has the power to construct
the truth, meanings, and contribute to solutions.
The involvement of service users in research can begin to transform social work theory and practice.
A number of international studies (Beresford & Croft, 1993; Maglajić, 2007; Ramon, 2003; Schafer,
2003) as well in Slovenia (Grebenc, 2014; Grebenc & Šabič, 2013; Lamovec, 1995; Urek, 2005; Videmšek,
2009, 2011, 2013; Zaviršek & Videmšek, 2009) and the UK (Fox, 2015; Slade et al., 2010) confirm
that the involvement of people with lived experience in research challenges traditional notions about
the construction of knowledge in social work practice and theory. The methodological approaches in
both research studies reflect the principles of social inclusion and the post-modern concepts of social
work which are identified in co-creation, the ethics of participation and the exploration of the different
perspectives of power. Without the methodological developments in this new paradigm
research, the founding principles of social work (ethics of participation, empowerment, participation,
co-creation of solutions) would exist at the level of abstract rhetoric rather than real social work practice.
In conclusion, we would argue that it is unethical to speak about social inclusion unless those
who are the subject of the discourse can effectively participate – otherwise this would only further
compound their discrimination and social exclusion (Videmšek, 2011).
Disclosure statement
No potential conflict of interest was reported by the authors.
Funding
Travel expenses to support carers to attend the training course and for carers and service users involved in the steering
group in the English Ph.D. study was provided by Cambridge and Peterborough NHS Foundation Trust, Cambridge, UK.
Notes on contributors
Petra Videmšek, Ph.D. is assistant at Faculty of social work, University of Ljubljana. My main research interests are social
inclusion in the field of mental health and disability, involvement of service users in research and education, social
inequalities experienced by people with disabilities, and advocacy work with disabled people or those who have
mental health difficulties who have experienced sexual abuse, and supervision in social work.
Dr Joanna Fox is a Senior Lecturer in Social Work at Anglia Ruskin University. I have my own experiences of recovery from
mental ill-health as a service user and a commitment to involving people who have used services and their carers in
social work education and research. Current interests are in the development of recovery education training programmes
for carers of people with mental ill-health, specifically focusing on blended learning approaches.
References
Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35, 216–224.
Banks, S., & Barnes, D. (2009). Planning research and evaluation projects in social work. In R. Adams, L. Dominelli, & M.
Payne (Eds.), Practising social work in a complex world (pp. 257–271). London: Palgrave: Macmillan.
Barnes, M., & Bowl, R. (2001). Taking over the asylum: Empowerment and mental health. New York, NY: Palgrave.
Beresford, P. (2000). Service user’ knowledge and social work theory. British Journal of Social Work, 30, 489–503.
Beresford, P. (2001). Social work and social care: The struggle for knowledge. Educational Action Research, 9, 343–354.
Beresford, P., & Croft, S. (1993). Citizen involvement: A practice guide for change. London: Macmillan Press.
Bratec, J., & Kos, H. (2011). Kvaliteta dela in življenja odraslih oseb z invalidnostjo, uporabnikov socialnih storitev [Quality
of work and living for adult people with disabilities that use social services]. Sonček, 2, March. 9–14.
Carers-one-to-one-Link. (2003). Cool recovery for carers. Exeter: Authors. Retrieved January 1, 2013, from http://www.
coolrecovery.org.uk/recoveryforcarers.php
Cigoj, N. (2009). Možnosti zaposlovanja ljudi s težavami v duševnem zdravju [Employment possibilities for people with
mental health difficulties]. Unpublished. Razpis MOL. Prijavitelj društvo Mostovi.
EUROPEAN JOURNAL OF SOCIAL WORK 9
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
CSIP, RCPsysch, SCIE. (2007). A common purpose: Recovery in future mental health services. London: Author. Retrieved
August 7, 2011, from http://www.scie.org.uk/publications/positionpapers/pp08.pdf
Department of Health. (2006). Our health, our care, our say. London: HMSO.
Department of Health. (2011). No health without mental health: Delivering better mental health outcomes for people of all
ages. London: HMSO. Retrieved July 1, 2011, from www.dh.gov.uk/publications
Evans, C., & Fisher, M. (1999). User controlled research and empowerment. In W. Shera & W. Wells (Eds.), Empowerment
practice in social work: Developing richer conceptual foundation (pp. 348–356). Toronto: Canadien Scholars’ Press.
Faulkner, A. (2010). Summary changing our worlds: Examples of user-controlled research in action. Eastleigh: INVOLVE.
Retrieved June 2012, from www.invo.org
Flaker, V., Rode, N., Jurančič, I., Vončina, M., Škerjanc, J., Kavar-Vidmar, A., … Šircelj, J. (1999). Oblike bivanja za odrasle ljudi,
ki potrebujejo organizirano skrb in podporo: analiza in predlog ukrepov [Forms of living for adult service users who need
support for independent living: Analysis and proposal measures] (Research report). Ljubljana: Faculty of Social Work.
Flemming, J., & Ward, D. (1999). Research as empowerment: The social action approach. Toronto: Canadian Scholars’ Press.
Fox, J. (2009). A participatory action research project evaluating a Carers’ Representation Group – carers against stigma.
Mental Health Review Journal, 14, 25–35.
Fox, J. (2013). An exploration of the role of carers in the recovery of people with schizophrenia (PhD). Cambridge: Anglia
Ruskin University.
Fox, J. (2015). The contribution of experiential wisdom to the development of the mental health professional discourse.
Schizophrenia Bulletin. doi:10.1093/schbul/sbv082
Fox, J., Ramon, S., & Morant, N. (2015). Exploring the meaning of recovery for carers: Implications for social work practice.
The British Journal of Social Work, 45(suppl. 1), i117–i134. doi:10.1093/bjsw/bcv109
Freire, P. (1970). Pedagogy of the oppressed. New York, NY: Seabury Press.
Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Garden City, NY: Anchor
Books.
Grebenc, V. (2014). Understanding the needs of older people: Shifting toward more community based responses. Revija
socialna politika, 21(2), 133–160.
Grebenc, V., & Šabič, A. (2013). Ljubljanske zgodbe: biografije navadnih ljudi [Stories form Ljubljana: Biographies of ordinary
people]. Ljubljana: Fakulteta za socialno delo.
Haaster, van H., & Koster, Y. (2007). Philosophy of curriculum. In van H. P. M. Haaster (Ed.), Training programme for people
with experience in the mental health crisis to work as a trainer and peer supporter (pp. 8). Retrieved March 4, 2008, from
http://www.ex-in.info/produkte2.php?WEBYEP_DI=5. EX IN_Modules_Curriculum_engl.pdf file
Hanley, B., Bradburn, J., Barnes, M., Evans, C., Goodare, H., Kelson, M., … Wallcraft, J. (2000, 2004, 2012). Involving the public
in NHS, public health, and social care research: Briefing notes for researchers. London: INVOLVE. Retrieved July 2006, from
http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf
Heron, J. (1996). Co-operative inquiry: Research into the human condition. London: SAGE.
Home, A. (1999). Group empowerment: An elusive goal. In W. Shera & L. M. Wells (Eds.), Empowerment practice in social
work: Developing richer conceptual foundation (pp. 234–246). Toronto: Canadien Scholars’ Press.
Hughes, R., & Huby, M. (2004). The construction and interpretation of vignettes in social research. Social Work and Social
Sciences Review, 11, 36–51.
Humphries, B. (2001). Putting participative research into practice. Care Plan, March, 23–25.
Kilyon, J., & Smith, T. (Eds.). (2009). A straight talking introduction to caring for someone with mental health problems. Rosson-Wye:
PCCS Books.
Lamovec, T. (1995). Ko rešitev postane problem in zdravilo postane strup: nove oblike skrbi za osebe v duševni krizi [When
solutions become the problem and the medicine becomes the poison: New forms of support for people in mental
crisis]. Ljubljana: Lumi. Repinted 2006 by Faculty of Social Work.
Levin, E. (2004). Involving service users and carers in social work education. Resource guide no 2. London: Social Care
Institute for Excellence. Retrieved July 20, 2007, from http://www.scie.org.uk/publications/guides/guide04/
Maglajlić, R. A. (2007). Cross National Co-operative inguriy of social work education in England and Bosnia and Hercegovina
(Ph.D. dissertation). Anglia Ruskin University, England.
Mayer, J., & Timms, N. (1970). The client speaks: Working class impressions of casework. London: Routledge.
Mental Health Research Network. (2012). Good practice guidance for involving carers, family members and close friends of
service users in research. London: Author. Retrieved September 12, 2012, from http://www.mhrn.info/pages/reports.
html
Morgan, D. L. (1998). The focus group guidebook. Focus group kit 1. Thousand Oaks, CA: Sage.
Nicholls, V. (2001). Doing research ourselves: A report on the strategies for living support project. London: The Mental Health
Foundation, Strategies for Living.
Oliver, M. (1992). Changing the social relations of research production? Disability, Handicap & Society, 7, 101–114.
Pečarič, E. (2004). Neodvisno življenje [Independent living]. Ljubljana: YHD.
Ramon, S. (1991). Principles and conceptual knowledge. In S. Ramon (Ed.), Beyond community care: Normalisation and
integration work (pp. 6–33). Basingstoke: Macmillan and Mind.
Ramon, S. (Ed.). (2003). Users researching health and social care: An empowering agenda. Birmingham: Venture Press.
10 P. VIDEMŠEK AND J. FOX
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017
Rapp, C. A. (1992). The strengths perspective of case management with people suffering from severe mental illness. In D.
Saleeby (Ed.), The strengths approach in social work (pp. 45–48). New York, NY: Longman.
Rapp, C. A., & Goscha, R. J. (2012). The strengths model: A recovery oriented approach to mental health services. Oxford:
Oxford University Press.
Reason, P. (1994). Human inquiry. London: Palgrave Macmillan.
Rose, D. (2001). Users’ voices: The perspectives of mental health service users on community and hospital care. London: The
Sainsbury Centre for Mental Health.
Schafer, T. (2003). Researching user empowerment in practice: Lessons from the field. In S. Ramon (Ed.), Users researching
health and social care: An empowering agenda (pp. 97–110). Birmingham: Venture Press.
Schultz, D. (2007). Resource- and resilience-oriented work with immigrant and black patients. In D. Zaviršek, J. Zorn, L.
Rihter, & S. Žnidarec Demšar (Eds.), Ethnicity in Eastern Europe: A challenge for social work education (pp. 63–85).
Ljubljana: Faculty of Social Work.
Scottish Recovery Network. (2009). Carers and supporting recovery: A report commissioned by the Scottish Recovery
Network. Glasgow: Author. Retrieved September 1, 2009, from www.scottishrecovery.net
Slade, M., Bird, V., Chandler, R., Fox, J., Larsen, J., Tew, J., & Leamy, M. (2010). The contribution of advisory committees and
public involvement to large studies: Case study. BMC Health Services Research, 10, 220–332.
Staley, K. (2009). Exploring impact: Public involvement in NHS, public health and social care research. INVOLVE: Eastleigh
Involve. Retrieved June 2012, from www.invo.org
Sweeney, A., & Morgan, L. (2009). The levels and stages of service user/survivor involvement in research. In J. Wallcraft, B.
Schrank, & M. Amering (Eds.), Handbook of service user involvement in mental health research (pp. 25–35). Chichester:
Wiley and Blackwell.
Thompson, N. (2002). Social movements, social justice and social work. British Journal of Social Work, 32, 711–722.
Uhm, S., Liabo, K., Stewart, R., Rees, R., & Oliver, S. (2012). Patient and public perspectives shaping scientific and medical
research: Panels for data, discussions, and decisions. Patient Intelligence, 4, 1–10.
Urek, M. (2005). Zgodbe na delu: pripovedovanje, zapisovanje in poročanje v socialnem delu [Stories in social work:
Narration, records and reports in social work]. Ljubljana: *Cf.
Van Haaster, H., & Koster, Y. (Eds.). (2005). What is an expert by experience? Retrieved February 4, 2008, from http://www.
ex-in.info/hinterground.php-expert_by_experience.pdf
Videmšek, P. (2009). From the margin to the centre: Service users as researchers in social work practice. In V. Leskošek
(Ed.), Theories and methods of social work. Exploring different perspectives (pp. 179–194). Ljubljana: Faculty of Social
Work.
Videmšek, P. (2011). Vpliv ljudi s težavami v duševnem zdravju na delovanje skupnostnih služb za duševno zdravje v Sloveniji
[Influence of people with mental ill-health on the operation of social services in Slovenia] (Doctoral dissertation).
Ljubljana: Faculty of Social Work.
Videmšek, P. (2013). From the margin to the centre: Service users as researchers in social work practice. In V. Leskošek
(Ed.), Theories and methods of social work. Exploring different perspectives (pp. 179–194). Ljubljana: Faculty of Social
Work.
Videmšek, P. (2014). From definition to action: Empowerment as a tool for change in social work practice. In A. L. Matthies
& L. Uggerhøj (Eds.), Participation, marginalization and welfare services: Concepts, politics and practices across European
countries (pp. 63–76). Farnham, MD: Ashgate.
Videmšek, P. (2017). Expert by experience research as grounding for social work education. Social Work Education. doi:10.
1080/02615479.2017.1280013
Vodopivec, K. (1959). Priročniku iz metodike socialnega dela [Handbook of social work methodology]. Ljubljana: Faculty of
Social Work.
Willis Commission. (2012). Quality with compassion: The future of nursing education. Report of the Willis Commission on
nursing education. London: Royal College of Nursing. Retrieved December 5, 2014, from www.rcn.org.uk/
williscommission
Worthington, A., & Rooney, P. (2009). Triangle of care: Carers included: A guide to best practice in acute mental health care.
London: National Mental Health Development Unit and The Princess Royal Trust for Carers.
Zaviršek, D., & Videmšek, P. (2009). Service user involvement in research and teaching: Is there a place for it in Eastern
European social work? Zagreb: Ljetopis socialnog rada, 16, 189–207.
EUROPEAN JOURNAL OF SOCIAL WORK 11
Downloadedby[MasarykovaUniverzitavBrne]at07:1408August2017