Participatory Research
Approaches with Disabled
Students
Dr Jane Seale, School of Education,
University of Southampton
Overview
• Provide an overview of a current research
project- LEXDIS-which is using participatory
approaches to involve disabled students in elearning research
• Use examples from the project and experiences
from related fields of study (e.g. participatory
design) to illuminate the challenges that arise
from undertaking participatory research.
• Reflect on how this and other PR studies
contribute to conceptions of participation in
higher education.
Personal understanding of “participation”
• Participatory Design:
– Emanates from design & technology field, has
been specifically used in Assistive Technology
& HCI research; and applied in education and
healthcare settings
• Participatory research:
– Learning Disabilities field (not-specific to
education)
– Has a wider use in research (i.e. not specific
to disability- has been used with children and
older adults)
Participatory Design: definitions
• Working directly with users (& other
stakeholders) in the design of systems
• Users are actively involved in setting design
goals and planning prototypes
– Contrasts with methods where user input is sought
only after initial concepts and prototypes have been
produced (i.e. PD is more than user-testing)
• Early and continual participation of intended
users to produce better technologies that better
suit the needs of users
Participatory Design: Methods
• Brainstorming
• Focus groups/Interviews
• Ethnographic observation of users and
their practice
• Scenarios as a means of conveying and
developing visions of new technology
• Low tech prototypes
Participatory Design: Issues
• Is the “right” user identified?
– In education s/w design studies that use PD,
frequently the teacher is the only defined user, and
not the learner.
• Changing role of user (as process progresses)
– Informant through to designer
• Nature of expertise of users
– Domain expert or design expert or both?
• Conceptions of the role of “user”
– Informant, designer, coach, participant, partner,
knowledge-worker; expert
• True partnership?
– Rare for PD articles to have users have co-authors
Participatory Design: Related
Concepts
• Co-operation
• Partnership
• Mutual learning
– learning about one another- reflexivity
• Activity (as opposed to passivity)
• Respect (for all collaborators, particularly
those with special needs)
Participatory Research in Learning
Disabilities Field: definitions
• Aims to engage participants in the design,
conduct and evaluation of research with
the construction of non-hierarchical
research relations
• Participants encouraged to own the
outcome by setting the goals and sharing
in decisions about processes
• “Nothing about me, without me”
PR in LD: What is involved
• Ensuring research topic is one that people
with LD consider worthy of investigation
• Asking people with LD to act as
consultants or advisors to projects
• Provision of support, training and payment
so that people with LD can undertake their
own research
PR in LD: Methods
• Narrative research: Life history, biography,
oral history
• Focus groups, interviews
• Action Research
– Involving interventions for change
Issues
• Finding ways to communicate
– Participant can be reliant on the non-disabled person
(researcher or support worker) for access to the
spoken and written word
– Can be a tendency for support workers to speak on
behalf of the person with LD
• Gaining informed consent
– In order to gain informed consent, people with LD
need to understand what research is
– Accessible information
• Negotiating access
– Professional gatekeepers can be “difficult”
– Perceptions that people with LD can have of
researchers as “just another professional, conducting
professional surveillance”
Issues
• Role of non-disabled researcher
– Ensuring integrity of “accounts” gained through
narrative life history methods
– Finding ways to support people with LD to become
researchers in their own capacity
– Non-disabled researchers need training if they are to
work in PR and take on a support role
– Skills of the researcher in PR can be played down
(Walmsley 2004)
• Accountability and ownership
– Non disabled researcher remains accountable to the
funder- who owns the research agenda?
Issues
• Participation versus Emancipation
– Emancipatory research
• Non-disabled researcher is accountable to the
people with LD. Their skills are at the disposal of
the people with LD
• Under the control of disabled people and pursued
in their interests (Mike Oliver)
• Brings about a change, emancipation
– Participatory research
• A useful compromise, a step towards ER
(Chappell, 2000)
PR in LD: concepts
• Alliances and
partnerships
• Advocacy
• Inclusion
• Ownership
PR in HE: The LEXDIS Project
• JISC funded: Learner Experience Phase II
• Mike Wald, Jane Seale, E.A Draffan
• Produce 30 case studies describing
disabled learners’ different e-learning
experiences
– Using interview “plus” method
• Where “plus” is an artefact produced by participant
to illuminate or add to the issues raised in interview
LEXDIS: Objectives
• Explore and describe how disabled
learners experience and participate in
technology-rich environments
• Investigate the strategies, beliefs and
intentions of disabled learners who are
effective in learning in technology-rich
environments and identity factors that
enable or inhibit effective e-learning
LEXDIS: PR Methods
Phase 1:
– Advise on importance of research questions,
rephrase, add, take away
– Advise on media/methods for “plus” element
• Phase 2: Contribute own experiences in a
form and media of their choice
• Phase 3: Advise on analysis of data and
key implications to be drawn out of the
data
Are we asking the right ?’s
“These are the questions we would like to
have answered in Phase 2 of our project.
Please could you tick the ones you feel
are important? Then add any comments,
additional questions or changes you would
like to see in the text box below the
questions”.
What form should the “plus” take?
• These are some of the ways we hope that students will
share their thoughts and experiences about the
technologies they use. Please could you tick the ones you
feel are important? Then add any comments and other
ways students can share their thoughts in the text box
below the suggestions:
a) Links to an on-line blog (one you set up or one provided for you)
b) Links to your existing resources (e.g. a wiki, PowerPoint
presentation, web page etc)
c) Contributing resources to the LexDis website.
d) Audio or video recordings e.g. podcasts etc.
e) Reflections on particular moments or events that have changed
the way you have used technology in your learning.
Responses: Are we asking the right questions?
•
Ranking of questions (n=47):
1.
How do you use technology (including assistive
2.
2.
4.
5.
6.
7.
8.
technologies) to help you study?
In what way do your assistive technologies affect how and
what you learn?
How do you feel about using technology to help you learn?
How are you supported with regard to your on-line learning
and use of assistive technologies (e.g. friends, family,
university)
How do you feel about the support you have received?
How do you use technologies for social networking and are
they sometimes linked to your learning?
Are there particular moments or events that have changed
the way you have used technology in your learning?
Are successful assistive or enabling technology user’s also
successful on-line learners?
“Prompted” Responses
• Q4 is quite tricky to
answer because I’ve
never really spoken to
other AT users, so can
only answer from a
personal view. I felt
generally the questions
seem tricky to answer
because they have quite
a wide scope. E.g Q2 I
can’t think of where to
start with this
• Question 4 was quite
difficult for me to
understand what you
meant. Not being a
techno-buff at all it would
be easier for me if the
terminology was
explained.
• Some of these questions
would be answered in a
negative manner, but I
feel all are important
“Prompted” Responses
• There is a good variety of
questions here. The ones that I
have ticked feel appropriate to
the way that I have used
technology throughout my
course. You could ask a
question such as “how do you
feel technology resources
could be improved to benefit
you” or something along those
lines as it will enable different
points of view to be expressed
to develop for the future
• Do you think technology helps
you to better understand things
and study (suggestion for
alternative question)
• I think all of those questions
are important-can definitely
think of some critical incidents
within learning (qu 8), but
learning from them is quite
complex, as you’re not just
dependent on yourself, you’re
dependent on others changing
their ideas
Unanticipated responses
• Many respondents answered the
questions instead of ranking the questions
– Lots of interesting responses, in order not to
devalue the contribution, we analysed these
to see if they gave any hint of alternative
questions we could ask or how we might ask
questions in the interview.
Influence on interview ?’s
• How are you supported
with regard to your online learning? Is this
different when compared
to the support you have
for the use of assistive
technologies? (e.g.
friends, family, university)
What techniques provide
most help? (on-line
guides etc) and what kind
of support would you like
that is not currently
available?
•
What are your feelings
about using technology to
help you learn? (Would
you cope without using
technologies?)
Generally, do you have
any difficulties or worries
when using technologies
as part of your learning?
Influence on research questions
Last ranked question: Are successful
assistive or enabling technology user’s
also successful on-line learners?
– Something we are still interested in (as is
the funder), but it is hard for students to
answer themselves, their perceptions of
success are complex and so any
relationship may need to be inferred.
Responses: What form should the
“plus” take?
1. Links to your existing resources (e.g. a
wiki, Powerpoint presentation, web page)
2. Audio or video-recordings e.g. podcasts
=3. Links to an online blog
=3. Contributing resources to the LexDis
website
5. Reflections on particular moments or
events that have changed the way you
have used technology in your learning
“Plus” Responses
• I’m glad someone is
investigating this area of
technology its something
I feel passionate about as
I am heavily involved with
computers and
technology
• All are fine, I just feel
personally that podcasts
don’t really hold my
attention for long!
• I might change question
“e” to experiences or
learning environments
that have changed the
way you use technology.
If you have been at a
school where IT is
integrated into learning
you are more likely to be
used to or comfortable
with using in day to day
learning.
• Unsure about these
Plus responses
• If I’m busy writing a
blog I’m not studying
and for part-time
students it’s hard
enough to fit study in
anyway with the rest
of life’s commitments
• Re blogs: I find
reflection very usefulwhilst I’ve reflected on
my learning
experiences a lot, the
only public reflective
piece I’ve done is full
of the positives, as it
had to be positive.
Alternative “plus’s
• Strategies
• http://www.lexdis.ecs.soton.ac.uk/hints/
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Issues
•
•
•
•
•
•
Understanding and meanings
Motivations for participation
Rewards for participation
Recruitment
Gate-keepers
The nature of participation
Understandings and meanings
• E-learning and
assistive
technologies as
terms are either
meaningless to
disabled students
or understood
differently
Motivations for participation
• Over-whelming desire to do something
that could benefit others
– Adds to the feeling of responsibility that the
researchers have, to deliver on this
expectation
• 17 interviews conducted so far for phase
2, which is VERY encouraging for this kind
of research
Incentives for participation
• Offered:
– Information fact sheet (phase 1)
– Gift tokens (Phase 2)
• Requested:
– Reference confirming participation, that can
use in Personal Development file and job
applications
Recruitment
• Phase 1: All-comers welcome, didn’t want
to turn anyone away
– With a marginalised group, it is important not
to marginalise or exclude them further
– Potential high numbers had implications for
analysis and payment
• Contact details and photos of researchers
– Humanise research
Gate-keepers
• Student support services
– Put in the effort to get them on board and gain
their trust and support
– Agreed to email students on our behalf- gave
research credibility
– Advice on language, mental health issues
– “Design by committee”- adds time and
involves compromise
The nature of participation
• Don’t want to be video’d
– Funders assumption that digital natives are
comfortable with video
– Private participation?
• Might need to work harder at informed
participation
– Conceptions of research might explain why
many participants answered the phase 1
questions rather than critiqued them
To what extent is LEXDIS participatory?
• Ensuring research topic is one that disabled
students consider worthy of investigation
• Not acting as researchers
– Acting as consultants or advisors to project
– Joint decision-makers
• Not initiated the research agenda
– The funders have an agenda, which is about
informing staff and changing teaching practices
• Social technologies, expert e-learners, critical moments
– Our student “advisors” have an agenda which is
about informing students
• Describing how they use technologies, strategies & support
Positioning participatory research
in relation to participation in
Higher Education research
Participation in HE concepts
Identity & well-being
Decision-Making
Access
Partnership
Impact
Orientations
Advocacy
Value (perceptions of)
Discussion & Questions
• Can we learn about participation through
participation?
• Can we assume shared agendas, shared
worlds?
– Who or what is driving the participation
agenda in HE?