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

Professor Jane Seale

The focus

• Participatory (inclusive research)

• Data Analysis

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?

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

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

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

[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

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

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

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

Example

Figure 12.2: Characteristics of risk embracing approaches to access

Risk Embracing

Letting go

High expectations of success

Trusting

Prepared to take a leap of faith

Flexible

Co-operative

Happy to let luck play a part

Creative

Building bonds and bridges

Was the participatory data analysis “good enough”?

REASONS TO STAND PROUD:• Analysis is grounded in the

words and experiences of all participants

• Development of conceptual framework was shared and negotiated– Participants with learning

disabilities were supported to contribute and advocate

REASONS TO PAUSE:• Making data accessible is

complex• Extent to which disabled

participants led data analysis is questionable, although it is clear they influenced it

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

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

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.

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

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.

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

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

[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.

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

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.

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

“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

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?

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”.

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