Participatory Research

Participatory Research
BACKGROUND AND OVERVIEW
Jane Springett , Professor, School Of Public Health, University Of Alberta
Overview
Why Participatory Research?
What do we mean by Participatory Research ? What is the practice?
Who participates and How?
Some impacts
Some challenges
Starting with Stories
Thelma‘s Story
“Health is created and lived by people within
the settings of their everyday life where they
learn, work, play and love.”
Ottawa Charter on Health Promotion 1986
Leira’s story
Bromölla
Pacesetters : Co-designing Health Services
Ledwith and Springett, 2010 pp95-6
Kyrgyzstan:
Former Nomadic
Soviet system collapse
Rural Health Care Reform based on
Participatory model currently under
roll out
Sustainable Health Action Research Programme
(SHARP)
Focused on communities with the highest incidence of ill-health and
premature death, social exclusion and poor life chances
Project level and overarching evaluation (Cropper S., Carlisle S., Beech
R., Little R – Centre for Health Planning & Management, Keele
University)
Seven projects funded for six year period, ending spring 2006
‘Barefoot’
Triangle
Pembs
Holway
BeWEHL
HYPP
R2R
SHARP funded projects (1)
HYYP Project
An evaluation of community involvement in Powys to meet the health
needs of young people in rural areas
‘Right 2 Respect’ Project
A project to identify and begin to address issues of particular concern to
girls and young women (11 to 25 years) in Wrexham
BeWEHL Project
An initiative in Newport to examine the contribution of women’s
learning to community health development
Triangle Project
A programme to support local health alliances in Cardiff, Merthyr and
Powys in tackling health inequalities
SHARP funded projects (2)
Healthy Living Approach Project
An evaluation of the Healthy Living approach to improving the health
and wellbeing of communities in Pembrokeshire
Holway Project House
Community development and regeneration in the Holway community in
Flintshire
‘Barefoot’ Health Workers Project
A project to support the health improvement of Somali, Yemeni and
Bangladeshi communities in the Butetown/Grangetown area of Cardiff
Assets & Legacies
‘Barefoot’: Expertise in working with minority ethnic groups; community
researchers skilled in working with agencies and local people.
Triangle: framework for establishing sustainable community health
partnerships; model of participatory action research as tool for
community health engagement – ‘local health champions’; locally
sustainable projects.
Pembrokeshire SHARP: Community research training programme and
handbook - transferable inquiry into local priorities; Community Action
Plans.
Holway House: community transformation - residents working in
partnership with external organisations.
Source: Cropper (2005)
Assets & Legacies
BeWEHL: improvements in women’s mental and ‘social’ health
(increased confidence/self-esteem, wider networks); transferable
approach to developing women’s capacity to engage in lifelong learning.
HYPP: civic participation by young people, better relationships between
different generations; Youth Council and OASIS roll-out.
Right 2 Respect: impact on Wrexham CBC Youth Services; ONC in a/r for
single gender youth work; outdoor worker; sustainable spin-off projects.
Source: Cropper (2005)
Why?
Not about us without us
"The worst thing about living in poverty is the
way it gives others permission to treat you-as
if you don‘t matter, as if your opinions don‘t
count, as if you have nothing to contribute„
Participant at Forum on Poverty, Scotland,
2006
Building Knowledge through different
ways of knowing
Experiential
Theoretical
Intuitive
Practical
Emotional
Knowledge into practice
Research-knowledge gap
Pipeline
Real Time challenge
Social Action and Change
Research/Theory
Learning
Practice/Action
Outcome and Impact
Results are relevant to the interests, circumstances and needs of those who apply them
Results are more immediately actionable in local situations
Findings are more credible to others
Helps reframe issues from just individual problems to structural and system issues
Ripple effect
(Green LW, Mercer SL. Am J Public Health Dec. 2001; Jagosh et
al 2012).
So:What is PR?
An approach to research
Orientation
Mixed Methods
Principles and Ethical Values Driven
Equity
Integrates Research, Learning and Action
Emergent
Reflect
Reflect
Reflect
Research
Research
Action
Research
Action
Action
Expert Researcher as
outsider
Researcher a co producer
of knowledge
Change in the relationship
Expert
Control
Hierarchy
Objective Rational
Real world
Research
RW
Co created
knowledge
Report
Monologue
Dialogue
(Aboutness)
(Withness)
R
“In participatory health research (PHR) the goal is to maximize the participation of those whose
life or work is the subject of the research in all stages of the research process. Such
participation is the core, defining principle of PHR, setting this type of research apart from other
approaches in the health field. Research is not done “on” people as passive subjects providing
“data,” but “with” them to provide relevant information for improving their lives. The entire
research process is viewed as a partnership between stakeholders which may include academic
researchers; professionals in the fields of health care, education and social welfare; members of
civil society; policy makers and others. The stakeholders decide which questions will be asked in
the research, what the the goals of the research are, how the research will be done and how the
results will be used. PHR is action research, engaging people in making change for the better, for
example, by finding ways to make neighborhoods safer, helping health professionals to know
what patients need, and empowering citizens to take political action to improve their living
conditions. “
http://www.icphr.org/
Different traditions and some core
principles
CBPR
Emancipatory
Pragmatic
Freire
Power and voice
Methodology
Traditional
Collaborative
Emancipatory
partner
Passive Recipent
Active, leader
initiator
Subject/Patient
Client/Consumer
partner
Active Leader Initiator
Passive recipient
Researcher
Colleague
Continuum of Authority
Voice from The South
Do not monopolise your knowledge nor impose arrogantly your techniques, but
respect and combine your skills with the knowledge of the researched or
grassroots communities, taking them as full partners and co-researchers. Do not
trust elitist versions of history and science which respond to dominant interests,
but be receptive to counter-narratives and try to recapture them. Do not depend
solely on your culture to interpret facts, but recover local values, traits, beliefs,
and arts for action by and with the research organisations. Do not impose your
own ponderous scientific style for communicating results, but diffuse and share
what you have learned together with the people, in a manner that is wholly
understandable and even literary and pleasant, for science should not be
necessarily a mystery nor a monopoly of experts and intellectuals." (Fals Borda,
1995)
"
Context :Sweden
Study circles
Dialogue Conferences
Interactive Research
FoU
http://kfsk.se/socialtjanst/fou-valfard/delaktighetsmodellen-2/vad-ar-delaktighetsmodellen-2/
FoU
Dialogue
Study Circles
Consensus
Democracy
Kristianstadbladet
Workplace
Participation
Na
Social Justice
Principles and Values driven
Knowledge
DevelopmentLocal and
General
Reflection
Actor
directed
Participation
Diversity and
variety of
methods
Learning
Dialogue
Collaboration
Change
Emergent
Core Principles
Participation
Research with not on people
Locally situated
Collective process of decision making and ownership
Human agency
Values all forms of knowledge
Reflexive about power differentials
Dignity and Respect
Sustainability
Social Learning
Participatory practice in Research
To be denied the capacity for potentially successful
participation is to
be denied one’s humanity. (Doyal and Gough, 1991: 184)
Making sure the processes and the
underlying principles of
engagement encourage authentic
participation of all stakeholders
including the culturally silenced
Core components
Story
Dialogue
Critical Reflection
Facilitation
Mess
“Stories create the way we see our place in
society and the way we perceive it as moulded
around us: telling us what to expect of each
other and ourselves. They shape and make
sense of our world by reiterating the social
and political order.” Bolton, 2005 p108
Challenges in doing PR
Time
Trust
Power differentials
Funding and reporting mechanisms
Academic power
Relationships and engagement/participation
Negotiating a balance between technical and the relational
Negotiating the balance between research and development
Working with PR in a non participatory world
The ”health” system
Hierarchical
Organisations
Participatory
Researcher
Professional
Perspectives
Patients/subjects/target
groups
Challenges in health sector/public health
Paradigm clash
Institutional Structures
Professional perspectives
Projectism
Organisational change
“A repeated experience with
(participatory research) has been the
tension and contradiction between top
down bureaucratic cultures and
requirements, tending as they do to
standardise, simplify and control, and
demands generated at the local level
tending as they do to be diverse and
complex and to require local-level
discretion.” (Chambers 1998)
Rewards
Innovative Solutions to “wicked problems”
Appropriate interventions for context
Capacity building
Personal Development
Social Learning
Dangers
Abuse of power
Unwillingness to give up power
Appropriation of participation
Lip service and technical exercise
Skills
Ensuring quality
Participation fatigue
criticality
Rewards
”The participatory research process is invigorating, and likewise exhausting. But then that is the
beauty of it. You will not be detached. You too, not merely the participants, will be rehumanised.
Participatory research is not only about trying to transform social structures ’out there’ and ’the
people’, it is about being open to transforming ourselves and our relationship to others. Just as I
examined the dilemmas and contradictions in participatory research, I was challenged daily to
consider the dilemmas and contradictions of my own life choices. I was forced to question my
part in the social contruction and maintenance of large social structures, systems and
relationships. And, relentlessly, I found myself asking, How am I choosing to be in the world”
Maguire, 1993
To Experience is to Understand
It’s like trying to describe how to paint a Picasso. You can teach people about colour, you can
teach them about form , you can teach them about structure and the paint brush, and what
bristles are like. And you can talk about different kinds of paper, and you can talk about what
kind of music to play in the background to inspire them and you can talk about all sorts of
things. But the bottom line is that when the image unfolds on the paper there is flowing of
creativity from the wholeness of the person.
Lindsey and McGuiness, 1998
To Experience is to Understand
” It’s like trying to describe how to paint a Picasso. You can teach people about colour, you
can teach them about form , you can teach them about structure and the paint brush,
and what bristles are like. And you can talk about different kinds of paper, and you can
talk about what kind of music to play in the background to inspire them and you can talk
about all sorts of things. But the bottom line is that when the image unfolds on the
paper there is flowing of creativity from the wholeness of the person”
Quote from Lindsey and McGuiness, 1998
Participatory
Research
Putting Democracy into Research
and the “public” back into Public
Health