Gordon Grant: Participatory research some thoughts on working together
Participatory research: some thoughts on working together Gordon Grant Sheffield Hallam University, UK University of Plymouth ESRC Seminar January 2013
What I will talk aboutA bit about meParticipantsPartnershipsPutting it into actionQuestions (????)
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 theseRolland, 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 clock feeling ready to act (psychological readiness) historical time (different cohorts) personal narrative (history is personal) service timetables when 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 thoughtsLinking 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
Individual outcomesTechnical – understanding of research, learningnew research skillsHow well I feel – self confidence, assertiveness,self esteemProject management – capacity for decision-making,giving direction, sharing expertise
Social outcomes (partnerships) Safety Recognition Belonging Achievement Continuity Purpose
SafetyIs 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) £
BelongingDo 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) Me My pal Team
ContinuityWas 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) Next Taking part New skills project
PurposeDo I actually value taking part? (importance)Has it been worthwhile for me? (meaningfulness)Does it make me feel better? (integrity) ✔
AchievementAm I making progress?Am I developing useful skills?Am I helping to change things for the better?
RecognitionAm 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 inFamily Care: understanding the caregiving career. Maidenhead, OpenUniversity Press
Outcomes - projectWhat 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 University Montgomery House 32 Collegiate Crescent Collegiate Campus Sheffield S10 2BP email: email@example.com