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: g.grant@shu.ac.uk