Learning from extraordinary lives


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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 lives

  2. 2. 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.’
  3. 3. Ways of involving the users of services in research Service users (citizens) invited to express their views as research participants Service users advise research Service users choose how they want to take part in research Service users are co-researchers
  4. 4. 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.
  5. 5. Project1 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
  6. 6. 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 Photos removed
  7. 7. Things that worked well 1. 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 Photo removed
  8. 8. Things that were difficult 1. Difficult to maintain a focus WITH lots of freedom to choose methods 2. Power struggles within the group replaced researcher-participant power differences 3. Confidentiality 4. Reciprocity might lead to desire to please 5. Some research processes can be boring Photo removed
  9. 9. Participatory dissemination Showing 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
  10. 10. 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 Photo removed
  11. 11. 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
  12. 12. 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 Photo removed
  13. 13. Achievements Two examples: TLC project Medical study participant letter. Photos removed
  14. 14. 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
  15. 15. 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)
  16. 16. 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 Photos removed