Participatory research: some thoughts on working together Gordon Grant Sheffield Hallam University, UK University of Plymouth ESRC Seminar January 2013
May 25, 2015
Participatory research: some thoughts on working together
Gordon GrantSheffield Hallam University, UK
University of PlymouthESRC SeminarJanuary 2013
A bit about me
Participants
Partnerships
Putting it into action
Questions (????)
What I will talk about
About me and my interests
• A programme that embraced inclusive research – the Learning Disability Research Initiative
• Inclusive research with family carers
• Stories about mental health; stories about growing older
• Setting up advocacy and self advocacy projects (a long time ago)
• Working with service user research groups in Sheffield and Doncaster
Difference and diversity (1)
We can all have personal conditions that vary in their:
Onset – sudden/out of the blue or gradualCourse – gradual, constant or from time to timeOutcome – low to high risk of deathIncapacity – cognitive, sensory, mobility, energy,
stigma or combinations of these
Rolland, J.S. (1994) Families, Illness and Disability: an integrative treatment model. New York, Basic Books
Difference and diversity (2)
Ideas about time:
physical or body clockfeeling ready to act (psychological readiness)historical time (different cohorts)personal narrative (history is personal)service timetableswhen others think it is ‘time’ (social/cultural)
Based on Mills, M. (2000) Providing space for time: the impact of temporality on life course research, Time and Society, 9, 1, 91-127.
Some thoughts
Linking personal conditions with time:
• Explaining the selection of people with different personal conditions as (i) co-researchers, (ii) research participants
• Spotting ‘overlooked’ groups• Making use of people with different kinds of personal experience• Avoiding knowledge built on old ideas about incapacity
PLUS
Outcomes
Individual
ProjectSocial
Individual outcomes
Technical – understanding of research, learning new research skills
How well I feel – self confidence, assertiveness, self esteem
Project management – capacity for decision-making,giving direction, sharing expertise
Social outcomes (partnerships)
Safety
Belonging
Continuity
Purpose
Achievement
Recognition
Safety
Is this an ‘approved’ project? (ethics)Have I received relevant training? Do I have the right gear? (preparation)Am I receiving good support? (personal assistance where necessary)Am I being paid? (financial security)
£
Belonging
Do I feel part of things? (group identity)Can I express myself? (contribution to discussion)Am I helping to make things work? (feeling part of a team)
Team
My pal
Me
Continuity
Was it my decision to take part? (personal control)Am I building on my strengths and interests? (skill consolidation)Is it helping me to develop new career opportunities? (career progression)
Taking part New skills Next project
Purpose
Do I actually value taking part? (importance)Has it been worthwhile for me? (meaningfulness)Does it make me feel better? (integrity)
✔
Achievement
Am I making progress?Am I developing useful skills?Am I helping to change things for the better?
Recognition
Am I receiving (internal) recognition for what I am doing? (positive feedback, pay)Am I receiving external recognition for what I am doing? (publications, certification, validation)Am I being treated right? (self-image, dignity)
Social outcomes (partnerships)
Adapted from:
Nolan, M., Lundh, U., Grant, G. and Keady, J. eds. (2003) Partnerships in Family Care: understanding the caregiving career. Maidenhead, Open University Press
Outcomes - project
What is good participatory research?
using and explaining knowledge contributions - from service users and academic researchers
testing each-others’ knowledge contributions changing things (i) testing big ideas, (2) changing services, (3) policy
change, (4) building research capacity, (5) personal change data analysis – rigour and clarity is the main research question answered?
Outcomes
(participatory action research)
• relational praxis – does the study fully involve others?• capable of application – resulting in better experience or better services• plurality of knowing – bringing together knowledge from different
stakeholder groups• ‘significant work’ – making a real difference to people’s lives• transformative – towards enduring consequences
(from Bradbury and Reason)
More questions • How can science as evidence and evidence as conviction be made to
work together?
• How judge ‘good’ inclusive research – in relation to outcomes as well as processes?
• Is there a case for ‘core’ (fixed) and also ‘periphery’ (conditional) criteria in judging the quality of inclusive research? What might these be?
• What might knowledge transfer and exchange theorising tell us about good inclusive or participatory action research?
Further information
Gordon GrantCentre for Health and Social Care Research
Sheffield Hallam UniversityMontgomery House
32 Collegiate CrescentCollegiate Campus
SheffieldS10 2BP
email: [email protected]