Involving peer led self-help groups and citizen research groups in the improvement and development of services
Submitting Institution
Anglia Ruskin UniversityUnit of Assessment
Social Work and Social PolicySummary Impact Type
SocietalResearch Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
Our research has had a direct influence on policy makers', commissioners'
and practitioners' understanding of the value of peer led self-help groups
and the potential of citizen/service user researchers for driving service
improvements grounded in lived experience. That impact is reflected in:
- national and local guidelines
- national and local training initiatives
- the sustained commissioning of two service user/citizen research
groups and related service improvements
- increased social capital and skills for the citizens involved.
Underpinning research
We have developed participatory methodologies that ensure that the unique
experiential knowledge service users and carers have as individuals and in
groups can best inform health and social care practice and service
development. Our work contributes to this field through two main areas:
Involving peer led self-help groups and organisations in developing an
evidence base of their distinctive contribution to the welfare landscape
(Munn-Giddings and Boyce)
Building on a cross-national study (UK, US, Sweden 2006-2008) reported in
RAE 2008, we have developed our research into the type of knowledge and
practices that characterise peer led self-help groups and organisations by
focusing upon their innovative and unique features (Boyce et al.
2010). Our specific contribution to the field is in reconceptualising
self-help as a form of voluntary action rather than (as was commonly the
case in the UK) an adjunct to professional services. We have also
identified the unique forms of reciprocal support and social relations
that can be provided by peers that cannot be replicated in professional
services (Borkman, Munn-Giddings et al. 2009). In addition we are
continuing to identify the contribution that self-help/mutual aid
activities can make to the social support and wellbeing of `active
members', demonstrating that the reciprocity/mutuality ethos enacted in
groups can enhance mental wellbeing and recovery not through individual
agency but in a balance between individual and collective responsibility
exercised through community networks (Seebohm et al. 2012).
Through on-going cross-national collaborations we have been exploring how
national policies and funding environments have impacted on the ability of
self-help organisations to retain their self-help/mutual aid ethos and
working practices.
Two projects have specifically contributed to this work, The
Innovatory Features of User Run Organisations, funded by the Mental
Health Foundation (2008-10) and the Effective Support for Self Help /
Mutual aid groups (ESTEEM) Big Lottery funded project, the latter
undertaken in collaboration with Self Help Nottingham (SHN) and The
University of Nottingham (2010-13). In addition we have explored and
threaded the theme of peer support through other funded work that focuses
on service user involvement in commissioning Making Involvement Matter
in Essex (MIME) (2009-12). All of these projects have been designed
to include service users and carers in the definition of issues being
studied, either through active membership of steering groups and advisory
boards and/or as participants in the collection, analysis and
interpretation of data.
Developing peer led Citizen Research Groups (Munn-Giddings,
Secker, Boyce, O'Brien, Moules, Ramon & Anghel)
A further related innovation and strength of our service user involvement
has been our participatory approaches to training and supporting citizen
research groups across the life course (O'Brien and Moules 2007; Boyce et
al. 2009). We involve young people, older people and people
experiencing mental distress in all stages of the research process to
ensure their experiential knowledge informs the research questions we
pose, the way in which we undertake research and the implications we draw
from research findings. Our work adds to methodological understandings as
to how best to involve citizens in research to ensure their experiential
knowledge enhances the research process and quality of data. We have not
only demonstrated that marginalised groups can undertake their own
research given the right support and training, but also explored the
methodological challenges and benefits inherent in this work. This work
has been funded and developed in close partnership with local health
trusts and Essex County Council (ECC) to ensure sustainability of the
initiatives (e.g. Skills for Care/Essex County Council, 2007-2011 and
South Essex Partnership University NHS Foundation Trust, on-going from
2005) (SESURG, Secker and Gelling 2006).
Key researchers:
Carol Munn-Giddings, Professor of Participatory Research &
Collaborative Practices (2009-present); Shula Ramon, Emerita Professor of
Social Work (Emeritus status from 2009); Jenny Secker, Professor of Mental
Health (2002 to present); Melanie Boyce, Research Fellow (2004 to
present); Niamh O'Brien, Research Fellow (2004 to present); Tina Moules
(previously Director of Research 2001 to 2012); Roxana Anghel (2004 to
present).
References to the research
O'Brien, N. and Moules, T. (2007) So round the spiral again: a
reflective participatory research project with children and young people,
Educational Action Research Journal 15 (3), pp. 385-402. DOI:
10.1080/09650790701514382
Borkman, T., Munn-Giddings, C., Karlsson, M., Smith, L. (2009)
Social Philosophy and Funding in Self Help Organisations: A US-UK-Swedish
analysis. International Journal of Self Help and Social Care, 4
(3), pp 201-220. DOI: 10.2190/SH.4.3.c
Seebohm, P., Boyce, M., Chaudhary, S., Avis, M. and Munn-Giddings,
C. (2012) The contribution of self-help/mutual aid groups to mental
wellbeing. Health & Social Care in the Community. DOI:
10.1111/hsc.12021.
Boyce, M., Munn-Giddings, C., Campbell, S. and Smith, L.,
2010. Innovatory features and challenges facing mental health user-led
organisations. Mental Health Review Journal, 15 (2), pp. 34-42.
DOI: 10.5042/mhrj.2010.0370
Boyce, M., O'Brien. N., Munn-Giddings, C. and McVicar, A., 2009.
How does the rhetoric of `user participation' in research apply to older
people? Research, Policy and Planning, 27 (2), pp 55-63. Can be
supplied by the HEI on request.
SE-SURG, Secker J. and Gelling L. (2006) Still dreaming:
service users' employment, education & training goals. Journal of
Mental Health 15: 1: 103-111. doi:10.1080/09638230500512508
Quality of the research
The outputs listed are all published in peer reviewed academic journals
and all authors consistently published in highly rated journals. Before
funding proposals are submitted Anglia Ruskin University requires a
rigorous peer review by academic colleagues with an appropriate subject or
methodological specialism. National research funding (Big Lottery and
Mental Health Foundation) was successfully obtained via a blind peer
review process. Regional funding calls are reviewed by subject experts in
the field and in addition the MIME project required an assessed
presentation to an interdisciplinary panel of commissioners, practitioners
and service users. The Big Lottery ESTEEM project was selected in 2011,
through a competitive process, by the Research Councils UK and
Universities UK as a project that exemplifies research demonstrating the
value of public investment in higher education and research and the
positive impact this has on economic growth and the social wellbeing of
the UK.
Details of the impact
Peer led Self-Help Groups and Organisations
Our research with and into peer led self-help groups and organisations
has directly influenced national and regional initiatives aimed at
improving health and social care commissioners' understanding of the
value, role and spectrum of self-help groups. Findings from our research
on the benefits of peer led groups and organisations have been included in
the Social Care Institute for Excellence (SCIE) national guidelines for
commissioners on developing and sustaining user-led organisations. In
addition, findings from the Big Lottery-funded ESTEEM project have been
dovetailed with a Department of Health project to develop a national
online tool kit for practitioners on the most effective ways to develop
and support local self-help groups. Following completion of the research,
online and paper resources for self-help groups, practitioners and
commissioners, hosted by Self Help Nottingham (SHN), were launched at
Anglia Ruskin University in July 2013 and have formed the basis for
training targeted at health and social care workers, criminal justice
personnel, third sector agencies and key members of patient groups.
Eighty-four people to date have completed the training (corroborative
statement from SHN). Four regional seminars on the core findings from the
research have ensured that links have been made for audiences of
commissioners and community practitioners between support for self-help
groups and current policy initiatives such as personalised care and
support for people with long term conditions. SHN have presented the
findings at the European Network for Self Help and are planning a national
event for 2014. The ESTEEM research has also informed an accredited
course, delivered by our partners SHN, the national specialists in the
field, at the Nottingham University's Institute of Mental Health in May
2013, for professionals in mental health on working with self-help groups.
This study is also informing Nottingham's Local Education Training Board
in supporting the NHS to integrate training on ways in which professionals
can support self-help groups. The practical application and impact of the
ESTEEM study was recognised with inclusion in the Big Ideas for the
Future 2011 report, jointly published by the Research Councils UK
and Universities UK. At the local level, Essex-based health and social
care commissioners have written initiatives that support peer led groups
into their service specifications (MIME 2012; corroborative statement from
Head of Mental Health Commissioning, ECC).
Peer/Citizen Researchers
Prominent examples of the impact of involving service users as
researchers have been the sustained commissioning of two peer/citizen
research groups (CRGs) and the formation in 2011 of a third group. These
groups are:
- The South Essex Service User Research Group (SE-SURG), a group of
mental health service users, was established at Anglia Ruskin University
in 2005 following their involvement with the employment survey detailed
in our second case study. SE-SURG have carried out 14 further studies
commissioned to inform local service development during 2008 -2013, with
support from Secker.
- WhyNot!, an older people's Research Group, was established in 2007 and
built on our initial training programme for older people as researchers.
Twenty-two people completed the training, of whom 10 were founding
members in the self-organising Research Group. Since 2008 they have
carried out 14 projects as direct commissions from the County Council,
District Councils, NHS and Age UK which we have supported on a
`needs-led' basis. Two further cohorts have been trained between 2009
and 2011 (Munn-Giddings, McVicar, O'Brien & Boyce).
- The North Essex Research Network, a group of mental health service
users similar to SESURG, was established in 2012, following training in
research provided as part of the Making Involvement Matter in Essex
(MIME) project (2009-2012). The group has nine members and completed
several studies under the auspices of MIME, with a further two
evaluations of recovery initiatives commissioned in 2013 by the NHS
Greater Eastern Commissioning Support Unit (Secker and Munn-Giddings).
Feedback from commissioners demonstrates their increased awareness of the
positive advantages of peer research and their policy commitment to
developing peer researchers in other parts of their adult services. For
example, with our support Healthwatch Essex is developing the model with
broader citizen groups to inform strategic planning (corroborative
statement from Head of Research and Analysis, ECC). In addition both
WhyNot! and SE-SURG research projects have informed changes in practice at
a local level. For example, WhyNot!' was commissioned to research into
technologies that help older people remain in their home. The study
resulted in the Council targeting practitioner training as well as
developing a demonstration facility, both of which have led to an uptake
in the service. Similarly, several studies carried out by SE-SURG have had
a local impact, for example in supporting the modernisation of day
services in South Essex, resulting in a shift away from staff-led
building-based services towards peer support and use of mainstream
community facilities. Subsequent evaluation found high levels of
satisfaction with the new services amongst day service users.
Feedback from members of these Citizen Research Groups highlights
personal impacts including improved confidence, new skills, employment
opportunities and feeling empowered to influence change (WhyNot!
corroborative statement; SE-SURG Activity Report 2008-2013). Further
impact has stemmed from replication of SE-SURG's employment survey and the
associated pioneering engagement of service users as researchers within
the Department of Psychiatry at the University of Pavia (see our second
case study). The value of service user involvement in research has been
recognised in subsequent studies carried out at the University of Pavia.
Recognition of the quality of SE-SURG's and WhyNot!'s work by Essex
Health and Social Care Commissioners is evidenced by an invitation to
Secker and Munn-Giddings in 2009 to tender successfully for a £500,000
three-year initiative aimed at extending service user involvement in
commissioning decisions. This initiative, Making Involvement Matter in
Essex (MIME), was delivered in partnership with a user-led training
organisation ARW (Advocacy Really Works) and enabled us to engage a wider
group of service users and carers in research. Twenty MIME members
received training in research skills in 2011, of whom, as noted above,
nine formed the North Essex Research Network and have carried out studies
with impact on commissioning strategy and service development in Essex,
for example introduction of a helpline web chat service for younger
people. As with SE-SURG members, personal benefits identified in feedback
from MIME members include improved confidence and feeling useful and
empowered to influence change (MIME, 2012).
As well as supporting the development of research skills these types of
initiatives develop social capital and skills amongst service users and
carers which they put to use in many ways. For example, members of WhyNot!
now sit on Essex County Council's Research and Governance Committee and
have used their training in their local communities to carry out a local
community consultation that increased rural transport options (WhyNot!
corroborative statement). This highlights the potential of this approach
to build skills that can inform and impact on other democratic processes.
Sources to corroborate the impact
- ESTEEM Web based tool kit (available on the SHN website www. selfhelp.org.uk/esteem)
- SE-SURG activity report (2008-13) http://hdl.handle.net/10540/301637
- Big Ideas for the Future RCUK (2011)
www.rcuk.ac.uk/documents/publications/BigIdeasfortheFuturereport.pdf
- MIME (2012) Evaluation of the MIME Project.
http://hdl.handle.net/10540/304944
-
Munn-Giddings, C & McVicar, A., Boyce, M., O'Brien. N.,
2009. Older People as Researchers - WhyNot?. Working with Older
People, 13 (4), pp 16-19. (Available from the HEI on request)
- www.scie.org.uk/publications/guides/guide36/resources/
Plus corroborative statements from individual users/beneficiaries (all
available from the HEI on request):
- WhyNot! Older People's Research Group
- Head of Research and Analysis, Essex County Council
- Head of Mental Health Commissioning, Essex County Council
- Director of Self Help Nottingham