Forming and Sustaining Community Groups / Community Advisory boards (CWGs/CABs)

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.

What/ Who is the Community in Research? • 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.

Representatives from study population Prevention advocates Women Groups Youth groups Political leaders Religious leaders Health care professionals Ordinary Citizens PWAs NGOs / CBOs Traditional Leaders etc. Forming/Establishing CWG/ CAB: Membership may include but not limited, NB: CWG / CAB members’ recruitment should be an ongoing process.

Process of CWG / CAB Formation: • 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 • 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 • 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 • 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 • Formalisation of the CWG i.e. • Terms of Reference • Objectives • Mission Statement • Support from the Study Site

Sustaining CWG / CAB: • 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 • 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

Challenges in Forming and Sustaining CWG / CAB: • 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

Forming and Sustaining Community Groups / Community Advisory boards (CWGs/CABs)