Participatory Research Approaches with Disabled Students

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Participatory Research Approaches with Disabled
Students

• Dr Jane Seale, School of Education, University of
  Southampton

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Overview

• Provide an overview of a current research
  project- LEXDIS-which is using participatory
  approaches to involve disabled students in
  e-learning 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.

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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)

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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

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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

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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

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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)

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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

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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

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PR in LD Methods

• Narrative research Life history, biography, oral
  history
• Focus groups, interviews
• Action Research
• Involving interventions for change

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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

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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?

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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)

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PR in LD concepts

• Alliances and partnerships
• Advocacy
• Inclusion
• Ownership

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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

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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

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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

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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.

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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
• Links to an on-line blog (one you set up or one
  provided for you)
• Links to your existing resources (e.g. a wiki,
  PowerPoint presentation, web page etc)
• Contributing resources to the LexDis website.
• Audio or video recordings e.g. podcasts etc.
• Reflections on particular moments or events that
  have changed the way you have used technology in
  your learning.

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Responses Are we asking the right questions?

• Ranking of questions (n47)
• How do you use technology (including assistive
  technologies) to help you study?
• In what way do your assistive technologies affect
  how and what you learn?
• 2. How do you feel about using technology to
  help you learn?
• 4. 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
  users also successful on-line learners?

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Prompted Responses

• Q4 is quite tricky to answer because Ive 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 cant 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

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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 youre not just dependent on
  yourself, youre dependent on others changing
  their ideas

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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.

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Influence on interview ?s

• How are you supported with regard to your on-line
  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?

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Influence on research questions

• Last ranked question Are successful assistive
  or enabling technology users 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.

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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

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Plus Responses

• Im 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 dont 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

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Plus responses

• If Im busy writing a blog Im not studying and
  for part-time students its hard enough to fit
  study in anyway with the rest of lifes
  commitments

• Re blogs I find reflection very useful- whilst
  Ive reflected on my learning experiences a lot,
  the only public reflective piece Ive done is
  full of the positives, as it had to be positive.

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Alternative pluss

• 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

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Understandings and meanings

• E-learning and assistive technologies as terms
  are either meaningless to disabled students or
  understood differently

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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

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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

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Recruitment

• Phase 1 All-comers welcome, didnt 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

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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

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The nature of participation

• Dont want to be videod
• 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

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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

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Positioning participatory research in relation to
participation in Higher Education research
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Participation in HE concepts
Identity well-being
Decision-Making
Access
Impact
Partnership
Orientations
Advocacy
Value (perceptions of)
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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?