Vivian R Ramsden, RN, PhD, MCFP (Hon.) Associate Professor & - - PowerPoint PPT Presentation

Community-Based Participatory Research and Transformative Action Research

Vivian R Ramsden, RN, PhD, MCFP (Hon.) Associate Professor & Director, Research Division Department of Academic Family Medicine University of Saskatchewan Research Seminar at McGill, February 5, 2013

Learning Objectives

• Describe how PHC and the elements of participatory

methods are linked.

• Describe ways in which community-based

participatory research integrated with transformative action research contribute to effectively answering questions related to community-identified health concerns.

• Discuss the differences related to guiding

values/ethical considerations from other research designs.

Background

Health is defined by the World Health Organization as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

WHO (2009). Governance of WHO. Retrieved on February 1, 2009 from http://www.who.int/about/governance/en/index.html.

Background

The Lalonde Report (1974), A New Perspective

• n the Health of Canadians, developed the idea
• f non-medical determinants of health. It

recognized the importance of prevention and promotion of health and well-being.

Health Canada (1974). A New Perspective on the Health of Canadians

(Lalonde Report) (1973-1974). Retrieved on February 1, 2009 from

http://www.hc-sc.gc.ca/hcs-sss/com/fed/lalonde-eng.

Background

The Declaration of the Alma Ata (1978) defined primary health care as essential health care that is based on practical, scientifically sound and socially acceptable methods and technology; universally accepted and affordable to all in the community through their full participation; and geared toward self-reliance and self- determination.

WHO & Unicef (1978). Alma-Ata 1978. Geneva, Switzerland: Author.

Concepts from the Alma Ata

• Primary health care shifts the emphasis of health

care to the people themselves and their needs, reinforcing and strengthening their own capacity to shape their lives.

• Hospitals and primary health centres become
• nly one aspect of the system in which health

care is provided.

• Primary health care is based on the intersecting

philosophies of mutuality, social justice, equity and equality.

WHO & Unicef (1978). Alma-Ata 1978. Geneva, Switzerland: Author.

Concepts from the Alma Ata

Primary health care strategies:

• Focus on individual and community strengths

(assets) and opportunities for change (transformation).

• Maximize the involvement of the community.
• Include all relevant sectors.
• Avoid duplication of services.
• Use only health technologies that are accessible,

acceptable, affordable and appropriate.

WHO & Unicef (1978). Alma-Ata 1978. Geneva, Switzerland: Author.

Citizen control Delegated power Partnership ← Optimal Placation Consultation Informing Therapy Manipulation

Eight Rungs on a Ladder of Citizen

Participation 8 7 6 5 4 3 2 1

Degrees

• f

citizen power Degrees

• f

tokenism Non-participation

Arnstein SR (1969). A ladder of citizen participation. AIP Journal, 216-224.

Partnership Pentagon

Health Service Based on People’s Needs Policy Makers Health Managers Health Professionals Communities Academic Institutions

WHO, 2000. Towards unity for health: Challenges and opportunities for partnership in health development. Geneva, Switzerland: Author.

Participatory Methods

• Participatory methods are at the heart of

primary health care and are recognized in the Declaration of Alma Ata and various other documents such as the Ottawa Charter for Health Promotion.

• Participatory methods or deciding what to do

together are also very much a part of partnerships.

Wass A (2000). Promoting health: The primary health care approach, 2nd Ed. Marrickville, NSW: Harcourt Australia.

Participatory Learning

Participatory learning has the critical elements

• f: equality, dialogue and mutual

communication. The process utilized is that of praxis (action- reflection-action) – action research.

Freire P (1972). Pedogogy of the Oppressed. New York, NY: The Continuum Publishing Co.

Facilitators of participatory methods recognize the importance of:

• people’s readiness to learn;
• the formation of a strong team;
• knowing people's context and needs very well;
• the improvement of abilities to reflect and act;

and the

• opportunity to experience an increased level of

awareness and personal growth.

Building Relationships - 1

• Spending time in the community meeting

people with no expectations.

• Inviting individuals in the community to

collaborate on building a vision around the strengths and needs of the community.

• Engage in an iterative process – dialogue,

establishing values, survey development, data collection, data analysis, interpretation of the results/findings and the writing of a Final Report.

Building Relationships - 2

• Returned the results/findings of the community

survey to the communities.

• Modified the Final Report taking into account

the interpretation of the results/findings by the community.

• Development of evidence-informed

community-based programs and policies.

Participatory Methods weave together:

• critical analysis of social situations and

issues;

• practice of communication skills and

working together;

• improvement of practical/technical abilities;

and

• spiritual growth and healing.

Participatory Analyses

It is hoped that this process will facilitate dialogue, negotiation and decision-making in a respectful and transparent way that will bridge the gap between the data resulting from the research endeavour and its meaning for the community.

Patton MQ (2002). Qualitative research & evaluation methods, 3rd Ed. Thousand Oakes, CA: Sage Publications, Inc.

Outcomes of Participatory Methods

• All members of the research team:
• gain a sense of confidence in their ability to

make and facilitate change.

• develop a wide range of skills - negotiation,

reflection and “working with”.

• begin to understand success and are then able to

build upon what they know from their experiences.

Values espoused and adhered to by Facilitators - 1

The values/ethics of the research endeavour need to be negotiated prior to engaging in the work.

• trust
• respect
• shared decision-making
• privacy and confidentiality
• responsibility
• collaboration

Values espoused and adhered to by Facilitators - 2

• neutrality
• kindness and compassion
• flexibility
• change agent
• commitment*
• patience and time*

Application of Theories into Practice

Core Communities - Saskatoon

• The Community-Based Health Strengths and

Challenges Survey (2000) which focused on primary health care reform was facilitated by an interdisciplinary team which included residents of the “core communities” in Saskatoon, academics and clinicians working together to develop new strategies for enhancing health and well-being in the communities.

• Transformative Action Research, a methodology,

which encompasses a high level of participation, transformative learning and action research evolved.

Ramsden VR, Research Team, Cave AJ (2003). Learning with the Community –The Evolution to Transformative Action Research. Canadian Family Physician, 49, 195-197.

Core Communities - Saskatoon

• The Response Rate was 94% (343/366).
• Risk Factors (self-reported) were:
• 59% - Tobacco mis-use (tobacco not used for

ceremonial purposes);

• 22% - Hypertension/High Blood Pressure;
• 15% - High Blood Cholesterol; and,
• 7% - Diabetes.
• Family Doctor (self-reported) indicated that:
• 86% - had a Family Doctor; and,
• 14% - did not have a Family Doctor.

Environmental Scan

• An environmental scan was done by the community

members themselves of organizations (formal and informal) providing services in the core communities.

• The analysis and interpretation was conjointly done

with the community members – ten areas of interest were not currently being done by an organization (e.g. learning to become free from tobacco mis-use, men’s health); however, there was a lot of overlap.

• Health services were not available after 1700 hours

with the exception of the Emergency Dept, St. Paul’s Hospital – changed practice and reality.

Sustainability

It was from the process and the results of the research endeavour entitled, Transition to an Integrated Primary Health Service Model, that the context and concept for West Winds Primary Health Centre (a university owned complex in partnership with the Saskatoon Health Region)

• n Saskatoon’s west side evolved.

Building Together - Sustainability

This was taken at the unveiling of West Winds Primary Health Centre - usask.ca/medicine/ family/wwphc/ A team of professionals working together with people and communities for better health.

West Winds PHC - Saskatoon

• Engaging the communities in the Development of

Programs to Enhance Health and Well-being Building

• n Strengths and Looking for Opportunities to

Change (2006) was facilitated by an interdisciplinary team which included residents of the “communities to be served by West Winds Primary Health Centre” in Saskatoon, academics, clinicians and decision-makers working together to develop new strategies for enhancing health and well-being in the communities.

• Community-based mixed methods integrated with

transformative action research were utilized.

Ramsden VR, McKay S, Crowe, J (2010). The pursuit of excellence: Engaging the community in participatory health research. Global Health Promotion, 17(4), 32-42.

WWPHC Communities - Saskatoon

• The Response Rate was 61% (444/725).
• Risk Factors (self-reported) were:
• 33 % - Tobacco mis-use (tobacco not used for

ceremonial purposes);

• 24 % - Hypertension/High Blood Pressure;
• 18 % - High Blood Cholesterol; and,
• 9 % - Diabetes.
• Family Doctor (self-reported) indicated that:
• 90 % - had a Family Doctor; and,
• 10 % - did not have a Family Doctor.

Communities Engaged

Riel Métis Sports Centre - Regina

• Building Capacity with Aboriginal Community-based

Participatory Research for Health: A Cultural Approach to Building on Strengths (2006-2008) was facilitated by an interdisciplinary team which included community members, academics (First Nations University and the University of Saskatchewan) and decision-makers working together to develop new strategies for enhancing health and well-being with the community.

• Community-based mixed methods integrated with

participatory processes and the Needs Assessment Guide for Métis communities were utilized.

Riel Métis Sports Centre - Regina

• The Response Rate was 98.6 % (136/138).
• Risk Factors (self-reported) were:
• 46 % - Tobacco mis-use (tobacco not used for

ceremonial purposes);

• 20 % - Hypertension/High Blood Pressure;
• 14 % - High Blood Cholesterol; and,
• 12 % - Diabetes.
• Family Doctor (self-reported) indicated that:
• 72 % - had a Family Doctor; and,
• 28 % - did not have a Family Doctor.

Métis Nation - Saskatchewan

• Community Based Participatory Research: Strengths

and Opportunities for Change in Métis Communities in Saskatchewan (2009-2010) was facilitated by an interdisciplinary team which included citizens of the Métis Nation – Saskatchewan, academics (First Nations University and the University of Saskatchewan) and decision-makers working together to develop new strategies for enhancing health and well-being with the communities.

• Community-based mixed methods integrated with

participatory processes and the Needs Assessment Guide for Métis communities were utilized.

Métis Nation - Saskatchewan

• The Response Rate was 91% (1515/1669).
• Risk Factors (self-reported) were:
• 54 % - Tobacco mis-use (tobacco not used for

ceremonial purposes);

• 26 % - Hypertension/High Blood Pressure;
• 18 % - High Blood Cholesterol; and,
• 13 % - Diabetes.
• Family Doctor (self-reported) indicated that:
• 70 % - had a Family Doctor; and,
• 30 % - did not have a Family Doctor.

Sturgeon Lake First Nation

• Primary Health Care: Chronic Disease Prevention and

Management resulting in Pathways for Wellness (2009-2012) was facilitated by an interdisciplinary team which included members of Sturgeon Lake First Nation, academics, clinicians and decision-makers working together.

• Community-based mixed methods integrated with

transformative action research were utilized.

Sturgeon Lake First Nation

• The Response Rate was 96% (194/203).
• Risk Factors (self-reported) were:
• 77 % - Tobacco mis-use (tobacco not used for

ceremonial purposes);

• 16 % - Hypertension/High Blood Pressure;
• 19 % - High Blood Cholesterol; and,
• 16 % - Diabetes.
• Family Doctor (self-reported) indicated that:
• 88 % - had a Family Doctor; and,
• 12 % - did not have a Family Doctor.

Development of Programs/Policies

• What Health Promotion/Wellness Programs

should be considered?

• What policies should be considered?

Example of a Program Developed

27/03/2007

Pillars of the Framework Pillars of the Framework

P r e v e n t i

• n

C e s s a t i

• n

E n v i r

• n

m e n t Transformative Learning P

• l

i c y

Surveillance & Evaluation Research

Vision and/or Purpose

The purpose of developing the Framework with individuals in the communities was to build on strengths that already existed in the community and to facilitate a pathway for healing (individuals, families and communities); thus, minimizing the mis-use of tobacco and enhancing health and well-being.

Guiding Values of the Work

• The guiding values were negotiated over time by the

members of the research team through a facilitated process.

• They were designed to guide the Framework as it

unfolded.

• The guiding values were and are: respect for
• urselves and others; building trust in relationships;

responsibility and accountability of the individual and the community; freedom of the individual; kindness and compassion; patience; humility and transparency.

Methods Used

• community-based participatory methods and

processes (Macaulay, Freeman, Gibson, McCabe, Robbins & Twohig, 1999)

• transformative action research (Ramsden et al, 2003)
• facilitation (Ramsden, Osborne, Turner & White,

2006)

• mutual learning (Friere, 1970; Friere, 1973)
• transformative learning (Mezirow & Associates,

1990; Mezirow & Associates, 2000)

Influences on the Framework

• determinants of health
• current health and well-being
• surveillance & evaluation strategies
• research methods utilized – qualitative,

quantitative, mixed methods (community- based participatory research), transformative action research

• behaviours and attributes of health care

providers and community members

Significance of the Framework

• Working with Elders and community members

provided a holistic, inclusive and participatory approach to developing an effective framework for guiding local policy and action.

• The wisdom and guidance from Elders, helped

community members illuminate the contexts in which they lived and develop ways of building on their own uniqueness and strengths.

• Collaboration with academic researchers facilitated

the construction of a framework reflecting these unique strengths.

Long Term Objectives

• f this Project
• 1. Celebrate the number of smoke-free homes and

increase the number by 10% per year.

• 2. Decrease the rate of tobacco mis-use by 10% per

year among all age groups particularly youth, pregnant women and seniors.

• 3. Increase the number of individuals that currently

mis-use tobacco and are engaged in cessation strategies by 10% per year.

• 4. Increase the number of Elders and individuals in the

communities that are role-modeling behaviour that is free from the mis-use of tobacco by 10% per year.

Elements of this Project

• 1. Protection – The Green Light Program
• 2. Cessation - Tobacco Addiction Clinic & Peer

Counselling

• 3. Prevention – Normalizing a Smoke-Free

Environment

The Green Light Program

• 1. Builds on strengths rather than deficits; thus,

creating opportunities for sustainable change.

• 2. Mitigates the differences between those who

mis-use tobacco and those who do not.

• 3. Raises the level of awareness about tobacco

mis-use as a major public health issue and the leading cause of premature death.

• 4. Reduces the impact that ETS has on children

and seniors in communities that have high rates of tobacco mis-use.

Green Light Program

• 5. Provides recognition for individuals’ success

in making their place of residence free from the mis-use of tobacco.

• 6. Highlights the need for evidence-informed

community programs with the community.

Community Engagement

Currently Mis-using Tobacco

Profile of those Currently Mis-using Tobacco

Currently Mis-using Tobacco (n=301) Social Smoking 10% (31/301) 1-10 per day 65% (197/301) 11-25 per day 21% (62/301) >25 per day 4% (11/301)

Interested in Stopping the Mis-use of Tobacco

Protection of Children

Children in Home

No (49) Yes 250 Homes 667 - Children Protected

88% (590/667)

Reported as being under 18 years.

Protection of Older Adults/Elders

Older Adults/Elders in Home No (51) Yes 229 Homes 544 Older Adults/Elders Protected

Tobacco Addiction Clinic (TAC) & Counselling

• 1. Linked to the Green Light Program.
• 2. Builds on strengths rather than deficits; thus,

creating opportunities for sustainable change.

• 3. Nicotine replacement products have been

made available free of charge to those who are unable to access these tools any other way.

• 4. Facilitated by an interdisciplinary team.

Opportunities and Challenges

• 1. All members of the research team

(community members and academic researchers) need to be engaged and participate in a meaningful and on-going relationship.

• 2. It takes time to work through the various

processes required by large organizations such as Universities – e.g. Certificate of Approval from an appropriate Research Ethics Board, obtain an Account, etc.

Opportunities and Challenges

• 3. Sustainability evolves as a result of spending

time in the community; thus, the communities were interested in working with someone that they know and not a Project Coordinator.

Summary

• Building on strengths developed a program relevant

to the communities and capacity in and with the communities.

• This resulted in engagement by the communities in

the enhancement of their own health and well-being.

Acknowledgements - 1

This project has been made possible through a financial contribution from the Tobacco Control Program, Health Canada. The views expressed herein do not necessarily represent the views of Health Canada.

Acknowledgements - 2

Funding for the five projects were from a variety of sources including:

• Aboriginal Health Transition Fund, Health Canada
• Health Transition Fund, Health Canada
• Indigenous Peoples Health Research Centre, SK
• Royal University Hospital Foundation, Saskatoon
• Saskatchewan Health Research Foundation
• Primary Health, Saskatoon Health Region
• Faculty Start-Up Funds, University of Saskatchewan

Example of Policies Developed

• Members of communities being served by

West Winds Primary Health Centre sit on various committees, programs and research teams at West Winds Primary Health Centre e.g. Evaluation and Indicators Working Group.

• Elders have been invited to participate in the

“search process” for new faculty.

• Manuscripts are negotiated conjointly with the

communities and the research teams and community members often write meaningful aspects of the manuscript.

Advantages….

For the Community:

• Power to determine research priorities,

allocation of resources, outcomes and policies.

• Partnership related to the use of community-

related data.

• Increased capacity and skills.
• Job creation and/or economic development.
• Sustainability of research outcomes.

Research Sustainability

• Several of the community members from the

research endeavour entitled, Transition to an Integrated Primary Health Service Model, are members of current research teams some 12 years after engaging in the process.

• In addition, several of the community members

have secured full-time employment and/or are engaged in meaningful work.

Advantages….

For Academics:

• Better quality of community-related data.
• Transformative learning experience.
• Incorporation of local knowledge.
• More accurate interpretation of findings.
• Responsibility for outcomes shared by all

stakeholders.

• Programs build on the strengths of the

individual/community.

Reflections - Researcher

• Transforming our focus so that it considers the

strengths, needs and interests of the community.

• Implementing community-based programs that

enhance health and well-being con-jointly with community members.

• Evaluating programs with the community members

highlights the focus of the health services.

• Policy changes resulted in individuals from the

communities on various committees e.g. member of the Evaluation/Indicator Committee.

Conclusions - 1

• As researchers utilizing this methodology, we need to

develop long term sustainable relationships with the people with whom we are working.

• In addition to this, we must recognize the knowledge

and power differentials for what they are so that when faced with resistance or challenges, we avoid falling back into old habits – “power over”.

• If the work is to be successful, it needs to be “ours”

not “my” or “yours” which often challenges the paradigms within which we work.

Conclusions - 2

• The strength of participatory methods in

learning, evaluation and research are that we learn together what the reality is and not what we perceive it to be!

• The silent partners whether they be

individuals, communities, academics, health care practitioners, decision-makers or systems are experts and provide insight when invited to do so.

QUESTIONS/COMMENTS DIALOGUE