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 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.

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 technologies) to help you study?

2. 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)

5. How do you feel about the support you have received?6. How do you use technologies for social networking and are

they sometimes linked to your learning? 7. Are there particular moments or events that have changed

the way you have used technology in your learning?8. 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 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?

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

website5. 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 useful- whilst 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/

Font Size

Use the pull down menu to choose either Normal, Large or Extra Large font

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

Decision-Making

Access

Value (perceptions of)

Orientations

Impact

Identity & well-being

Partnership

Advocacy

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?