Keynote presentation at Plymouth Methodological Innovations conference 2012

1. Genuine equity versus legitimate
expertise: Reflections on the process
of engaging in participatory research
and the implications for
researcher/participant relationships
Professor Jane Seale

2. The focus
• Participatory
(inclusive
research)
• Data Analysis

3. The question
Is it possible for academic
researchers to have truly
equitable research partnerships
with their co-researchers, when
they hold so much of the
legitimated research expertise?

4. Participatory research is.....
• Engaging marginalised people such as children or
those with learning disabilities as equal partners in
research,
– facilitate political and civic engagement of excluded groups
– responsive to concerns regarding rights and voice
• Involvement in the design, conduct and analysis of
“research”
• Encouraging participants (co-researchers) to own the
outcome by setting the goals and sharing in decisions
about processes.
• Degree of participation can be mapped against a
framework offered by Radermacher (2006) which
identifies six categories of participant involvement

6. Participatory data analysis: A
battleground?
“ I can’t see why anyone with a learning
disability would want to analyse data”
– Anonymous funding bid reviewer
“ But people with learning disabilities wont be
able to use SPSS”
– Anonymous journal reviewer

7. Participatory data analysis: re-drawing the
boundaries of academic contribution
• Making data analysis expertise available versus enabling research
participants to undertake data analysis themselves
• Jan Walmsley
– Academic researchers have something valuable to contribute
and they should not be ashamed of this
– In danger of allowing themselves to become “invisible” in order
to adhere to the spirit and politics of participatory and inclusive
research

8. [1] ESRC funded research: Concepts of
access for people with learning
disabilities
• People with learning
disabilities were
equal partners in
research seminars:
– Presented alongside
researchers and
practitioners from
education, social
work, nursing,
psychology

9. Included in research through the use of
technology, participatory methods &
skilled, creative advocacy workers:
• Using mobile phones to
organise their travel to and from
the university
• Presenters with learning
disabilities able to tell their
powerful stories of access
through PowerPoint with
pictures and video clips

10. Writing partners: a voice in a
previously inaccessible research
world
I took a risk taking the job
at St George’s because I
knew my benefits would go
all over the place […] I took
the risk because I thought I
can’t live off benefits all my
life. I don’t want to grow old
and just sit there in an
armchair and be bored out
of my life. Butler, 2010

11. But how did we “do” participatory
data analysis”?
• At the end of each seminar
– Produced an accessible summary of each of the six seminars
and distributed to all participants
• At the end of year one:
– presented a visual representation of emergent conceptual
framework for discussion
• At the end of year two:
– Produced an accessible thematic analysis of themes running
across all six seminars
– Presented revised visual representation of conceptual
framework which stiumulated group discussion and feedback

12. Example
Figure 12.2: Characteristics of risk
embracing approaches to access
Trusting Co-operative
Letting go
Creative
Flexible Risk Embracing
Building
bonds and
bridges
Happy to let luck
play a part
High expectations of
Prepared to take success
a leap of faith

13. Was the participatory data analysis “good
enough”?
REASONS TO STAND PROUD: REASONS TO PAUSE:
• Analysis is grounded in the • Making data accessible is
words and experiences of all complex
participants • Extent to which disabled
• Development of conceptual participants led data analysis
framework was shared and is questionable, although it is
negotiated clear they influenced it
– Participants with learning
disabilities were
supported to contribute
and advocate

14. [2]: disabled students at
university as equal partners
in research AND design

15. JISC funded Project
• LEXDIS: Learner Experience Phase II
• Team: Education, computer science, speech
therapy/assistive technology
• Produce 30 case studies describing disabled
learners’ different e-learning experiences

16. Overview of Participatory Phases
• Phase One: Consultation
regarding proposed research
questions and research
methods;
• Phase Two: Opportunity to
contribute own experiences of
using e-learning, contributing
artefacts of their own choosing;
• Phase Three: Opportunity to
validate and interpret the results
of the study and to contribute to
the design, content and
dissemination of project
deliverables and outcomes.

17. Involving participants in the analysis of
results
• Held a focus group to share our initial interpretations of the
data that we had collected and to invite participants to
guide us in our analysis.
– Why did we not train up some students to engage in the NVivo
coding of interview data with us?
• CHALLENGE 1- How do you present a mass of data in a
way that all participants can access and interpret?
• E.g. For dyslexic students need to think about structure and
volume of information
• E.g. For students with manual dexterity difficulties need to think
about handling volumes of paper

18. Involving participants in the analysis of
results
• Taking into account the varying abilities and needs of our participants,
we chose to present the results in 6 summarised PowerPoint slides ( a
real challenge!) and to give a verbal commentary. The main findings
were summarised and presented to the participants as:
– As a group you appear to be resourceful and adaptable learners;
– As a group you appear to have a love-hate relationship with technology;
– As a group you appear to be making informed, yet complex decisions
about your use of technology.
• For each of these findings, we asked the group whether they reflected
their own personal experiences and views and whether we were
misrepresenting the findings or missing something important from the
results.

19. Involving participants in the analysis of
results
• No-one expressed concern that the suggested analysis
would falsely represent the experience of individuals or the
group.
– Challenge 2: Is this just acquiescence or a consequence of
students simply not being empowered to do anything other than
agree with us?
• Participants felt comfortable enough to disagree with one
another
• Participants felt comfortable enough to disagree with
researchers

20. The pay-off: authenticity
• Valuable information about
participants perceptions
regarding whether they
represented typical disabled
learners
• Added authenticity to the
students voices, which may
enhance probability that the
results will not be written off
as unrepresentative

21. [3] PAIRS: Participatory Inclusion Related
Staff Development
1. Capture “student voices” regarding their learning experiences
within the School of Education
• Use these “voices” to explore whether and how our School of
Education programmes (undergraduate and postgraduate)
include or exclude students with a wide range of learning
needs from experiencing positive or high quality learning
opportunities
2. Involve students in the analysis and exploration of these “student
voices”
• Develop a collaborative partnership whereby students help to
develop materials and methods that can be used to help staff
in the work towards meeting learning needs and reducing
barriers to inclusion.

22. Phase One: Tell us your “stories”
• Write or audio-record a one-two page letter to an “imaginary” friend
• Write a diary describing learning experiences on course, over the
period of a “typical” week;
• Write a reflective journal that describes a “critical incident”
• Produce a piece of creative writing or art (e.g. poem, picture,
sculpture, song)
• Alternatively, opt to be interviewed face-to-face, by phone or by
webcam.
• Focus for all stories: learning experiences and whether learning
needs have been met

23. Phase Two: help us understand the
stories
• Formed an advisory group that
worked together to decide how
we will use the information
about student learning
experiences to design staff
development initiatives in the
School.

24. Phase 2: The analysis
• 5 students (also phase 1 participants) consented to being
members of an “advisory group”
• Work and family commitments as well as distance (1 student
had graduated) meant that all work done via email
• Sent each participant three stories and asked them to code
stories for themes or issues that they thought were significant
– Using highlight and comment features in Word

25. “Doh!”
• The nature and quality of student “coding” was variable
– Even though the majority were PG
• I underestimated how hard participants might find this
• Why did I assume that the students would be able to code
transcripts in the way that I can/would?
• Should have built in time to “train/induct” participants in
analysis methods
• In the end I “analysed the analysis” and produced a core set
of themes, that I thought most of the students had identified
and shared this with the group for approval

26. The issues for reflection and discussion
• Doing participatory research takes more time and effort than
traditional research
– The time required to do justice to participatory data analysis is
underestimated, particularly capacity-building element
• Is the ultimate goal of participatory research to enable co-
researchers, particularly those who are marginalised in society, to
take a lead in data analysis?
– Does it matter if they don’t?
• What motivates academics to do research and do they have
enough self-awareness to share the data analysis “limelight” and
let go of the assumed status that “being able to analyse data” has
• Why bother?

27. Why bother? Impact
• Four years after the end of the project, the website is still having an
impact on disabled students- students from all over the UK are contacting
the team offering to add their own “case studies”.

28. And finally a plug
• ESRC funded seminar series:
“Towards equal and active
citizenship: pushing the
boundaries of participatory
research with people with
learning disabilities”
• First seminar- Plymouth,
January 10th
• Email
jane.seale@plymouth.ac.uk if
you would like to be put on
mailing list and sent
programme details