Transcript Forming and Sustaining Community Groups / Community

Forming and Sustaining
Community Groups / Community
Advisory boards (CWGs/CABs)
Presenter:
Smangaliso Ntshele
Community Mobilization Project Leader,
Medical Research Council, RSA, HIV
Prevention Research Unit (HPRU)
INTRODUCTION:
Community participation – cornerstones
of all effective public health action.
 Community members – involved from
inception of research planning.
 Active and informed people – reduces
the potential conflict in research.
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What/ Who is the
Community in Research?
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People who are directly and indirectly
participating in research which can be,
– Individuals
– Partner
– Family
– Community structures
Why Community
Participation in research?
Joint decision making in research
process
 Sustained collaboration and
partnerships
 HIV prevention research must
understand cultural, social and ethnic
sectors.
 Impact on policy implementation.
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Forming/Establishing CWG/
CAB:
Membership may include but not limited,
 Representatives
 Religious leaders
from study
 Health care
population
professionals
 Prevention
 Ordinary Citizens
advocates
 PWAs
 Women Groups
 NGOs / CBOs
 Youth groups
 Traditional Leaders
 Political leaders
etc.
NB: CWG / CAB members’ recruitment should be an ongoing process.
Process of CWG / CAB
Formation:
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Each study site to designate a paid staff
employee to serve as the liaison to the CAB
to help facilitate the process.
Invitation of all relevant stakeholders
identified in the community
Launch Seminars, Workshops and trainings
of the potential CWG / CAB members –
ongoing
Development of Situational Analysis and
needs assessment together with the CLO.
Interim election for different portfolios
amongst the members for co-ordination.
Process of CWG / CAB
Formation: continued
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Development of Roles and Responsibilities of
CWG / CAB, which may include,
– Serving as the voice for the communities and
study participants.
– Formulation of recommendations and strategies
regarding the research agenda.
– Assisting in development and implementation of
community education activities
– Advise in the development of study documents
e.g. informed Consents
– Advise in the development and implementation of
recruitment and retention strategies
Process of CWG / CAB
Formation: continued
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Development of Roles and Responsibilities of
CWG / CAB, which may include,
– Dissemination study information to the local
communities
– Provide input from real – life experiences
– Recruit and orientate new CWG / CAB members
– Convening regular meetings (monthly)
– Organising HIV prevention awareness
programmes in the community
– Facilitate formation and sustainance of support
groups (infected and affected)
– Serve on the conference calls (preferably chair)
Process of CWG / CAB
Formation: continued
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Identification of training needs for the
CWG / CAB
– Clinical Trials
– Informed Consent
– Ethics and confidentiality
– Laboratory issues etc.
– Volunteerism
Process of CWG / CAB
Formation: continued
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Formalisation of the CWG i.e.
– Terms of Reference
– Objectives
– Mission Statement
– Support from the Study Site
Sustaining CWG / CAB:
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Full representation of community structures
Transparency and openness on benefits and
risks for being in the study
Identification of community benefits e.g.
Clarity on Social Responsibility
Clearly articulated mission statement, bylaws
and objectives
CWG / CAB member orientation and
background materials
PI involvement and responsiveness to CAB
concerns
Sustaining CWG / CAB: continued
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Acknowledgement of the value and
significance of community input
Training and technical support
Good facilitation
Logistical support – meetings, transport
assistance, refreshments and conducive
meeting space
Identification of CWG / CAB roles and
responsibilities
Sustaining CWG / CAB: continued
Development of community – based HIV
Prevention Awareness Programmes
 Continuous training and engagement
 Develop sense of independence and
ownership of HIV Prevention Programmes
 Regular CAB/PI question and answer
sessions
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Challenges in Forming and
Sustaining CWG / CAB:
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Engagement in complex community
structures
Politicizing every effort of research
Resistance to new interventions vs traditional
values
Lack of political support
Misconceptions about condom use and HIV
Bureaucracy
Lack of volunteerism (employment/incentives)
Over-stepping roles and responsibilities