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Presentation by Sally Holland at the fourth ESRC funded seminar on participatory research with people with learning disabilities
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Learning from extraordinary livesDR SALLY HOLLAND, SCHOOL OF SOCIAL SCIENCES, CARDIFF UNIVERSITY.HOLLANDS1@CF.AC.UK@DRSALLYHOLLAND
Participation in social work research– we’ve come a long way
In social work a few decades ago, hardly anyone thought to ask people who use services what they thought of those services.
1968: USA. National Association of Social Workers The profession of social work concentrates on how to deliver services ‘with little regard for whether it is delivering anything of real significance to the people most in need of help’
1960 UK Barbara Wootton: ‘One cannot but wonder sometime what ‘clients’ think of ‘caseworkers’. Into this field, however, research workers on both side of the Atlantic seem to be reluctant to penetrate.’
Ways of involving the users of services in researchService users (citizens) invited to express their views as research participantsService users advise researchService users choose how they want to take part in researchService users are co-researchers
Mayer and Timms 1970 ‘The Client Speaks’
Discovered that many users of a social work service got quite different help than they wanted.
Wanted: help with poverty; help coping with someone else (husband, child)
Were offered: help with their personal insight - talking therapies
Were often baffled by the social worker and did not understand what was being offered.
Proj
ect 1
Project Overview Looked after children are consistently discussed in terms of range of social problems
Aims to enable a group of these children and young people to produce their own accounts and representations of their everyday lives
Participants choose means and methods Exploration of possibilities and challenges of children’s participation in full research process
Children and young people developed their own projects abut their own lives Worked in groups and alone, using film, writing, conversation, art, journeys. Researchers observed this process
Multi-media project sessions
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Things that worked well1. The data we gathered was a
reflection of how the young people spoke and shared information
2. There was less of a power divide between researcher and people being researched
3. New research methods can lead to new research questions and findings
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Things that were difficult1. Difficult to maintain a focus WITH lots
of freedom to choose methods2. Power struggles within the group
replaced researcher-participant power differences
3. Confidentiality4. Reciprocity might lead to desire to
please5. Some research processes can be
boring
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Participatory disseminationShowing what we did to others•Papers and presentations shared with young people•Short films developed with young people using their data•Film show event with Minister for social services and other young people in care
Project 2: Voices Research Advisory Group
Why form a group?
To provide advice that will improve research questions, methods, ethics and outputs
To avoid tokenistic consultation
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How to train and run the group? Learning through doing
Training programme involves trying out research methods
Consultations can include trying out methods too.
Learning through doing
Trying out research methods
Acting out
research proposals
Debates and
quizzes
Challenges
Time •Time commitment in stressed lives•Time for relationship building is well spent
resourcing •Paying the young people/organisation?•Charging for the service•Developing credits and qualifications
expectations •Level•Subject matter
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Achievements Two examples:
TLC project
Medical study participant letter.
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TLC project: how the method changed
Video changed to choice of
video/audio/observation
Young people to be in charge of on/off button
Young people offered chance to practice with a
friend/carer/advocate
YP offered chance to make film about everyday
life to present at their review
Health study participant letter Before 1. Dear Participant
2. Up to date information about the trial can be found on this website
3. The data we access will be anonymised
4. If you would like more information or are concerned (go on website or contact us)
After 1. Dear Mary Brown (name used) 2. We will send you a summary about what we found.
3. By the time the information is sent to our researcher, no one can identify you or your child
4. If you do not want us to use your information in this way please let us know using the following details (insert contact details of named person with job title)
Conclusions: transferable lessons to participatory research in other fields
Time
Resources
Can improve the quality of research
Can have relevance to all methods and all research questions
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