Presentation by Sally Holland at the fourth ESRC funded seminar on participatory research with people with learning disabilities

1. Learning from
extraordinary lives
DR SALLY HOLLAND, SCHOOL OF SOCIAL SCIENCES, CARDIFF UNIVERSITY.
HOLLANDS1@CF.AC.UK
@DRSALLYHOLLAND

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. 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. 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. 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. 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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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
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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
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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. 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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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. 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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13. Achievements
Two examples:
TLC project
Medical study
participant letter.
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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. 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. 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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