FAMCRU Advisory Board

Community Advisory Board (CAB)

FAMCRU has four Community Board Support Groups

1 - The FAMCRU IMPAACT Adolescent Group

Comprises of the following:

10 youth
1 facilitator
2 co- facilitators

Target Population: Adolescents from 12-18 years of age who are affected by HIV/AIDS or living with the disease.
Aims of the group:

To get a better understanding of the informed consent process of studies, through training.
To provide a consistent voice that represents adolescents.
To contribute towards identifying adolescent priorities in research studies.
To provide sites with adequate feedback about issues in communities that may impact the research.
To get more training on research ethics.
To address issues on stigma and disclosure through training.
To keep advancing towards CURE research.

Achievements:

Being spokespersons of the group in broader community.
Exposure to research knowledge and understanding.
Having ownership within the research about issues that concern adolescents ('Nothing about us without us.')
Exposure to training.
Training has provided knowledge where youth can decide on careers in medicine/ nursing and psychology.

Meeting Frequency: 2^nd Saturday of every Month. (Except for January)
Contact Persons: Facilitators & Community Liaison Person.
Where do they meet? They meet at J8 FAMCRU. (Mark Cotton board room) From 9:00 a.m. till 13:00 p.m.
Our leaders in the CAB are:

Tasnay Conradie – Chairperson
Tamara Erasmus – Vice Chairperson
Tia Erasmus – Secretary
Remecha Faro - Vice Secretary &
Linam Jumba – Adolescent Liaison Person. .

2. Worcester CAB

Comprises of the following: consist of 25 active members.
Their target population: group met the requirement of the protocol including pregnant mothers.
Aims of the CAB: For the community to be aware of current and future studies, and new protocols.
Meeting Frequency: The CAB meet once every second month.

Contact Persons: If you are interested in join them, please contact Doreen Willemse with contact number 0843105785 (FAMCRU Worcester) and Kelvin Vollenhoven 0745852858 (SATVI) both Coordinators of the CAB.
Where do they meet? The CAB meet at Ukwanda Campus and Brewelskloof Hospital (SATVI site).
What achievements were accomplished? One of our CAB member's Thandi Poto received the Bridget Murtagh award for her work on HIV patients in her community.
Our leaders in the CAB are:

Belinda Ameterra (Chairperson)
Jescinta Moahloli - (Secretary)
Liezle Phliander - (Vice Secretary)
Elda Bailey – (Vice Chair)

3. FAMCRU (KIDCRU) Community Advisory Board - Adult

Established December 2002.

Comprises of the following: 20 Members.
Criteria for membership: HIV infected or affected, experience in working in the field of HIV, interest to learn more about HIV and work with people living with HIV. Role players in the community (retired teachers, pastors are also encouraged to join the CAB). We encourage people that took part in research trials to join the CAB.
The MISSION of the CAB is “To Empower People with Knowledge to Make Informed Choices!"
The Aims of the CAB:

Provide members with enhanced skills in communication and counselling about complex concepts related to HIV infection and treatment with families and children.
To prepare members to serve as a resource for accurate HIV/AIDS and research information within their communities.
To help members recognize their roles within the multidisciplinary care team.
To build on members current knowledge and expertise in clinical research to build counselling skills for peer education related to clinical trials.
To build skills in multidisciplinary teamwork and the process of team communication.
To build on current knowledge of common counselling issues encountered in clinic e.g. antiretroviral therapy, adherence, stigma and disclosure of HIV diagnosis.

Meeting Frequency the CAB has once a month a meeting. Ad hoc meetings can also be scheduled as needed. The executive team meets quarterly with the Desmond Tutu TB Centre CAB. (DTTC CAB)
Contact Persons: People who wants to know more about the CAB or are interested in becoming a CAB member can contact Joan Du Plessis joan@sun.ac.za
Where do they meet? They meet at J8 FAMCRU. (Mark Cotton board room) From 12:00 a.m. till 14:00 p.m.
What achievements were accomplished The CAB has also members who is part of international groups for e.g.?

1. The International CAB (ICAB) – representative – Marie Tizora.

2. The Global CAB (GCAB) representative – Joan Du Plessis

3. Community Scientific Sub-committee – Joan Du Plessis?

4. Community Partners – Marie Tizora

Community Partners – Joan Du Plessis
Bridgitte Murtagh Award for continued dedication in community work and meeting attendance. FAMCRU CAB has quite a few very dedicated members who is busy in their community and very compliant and active members in the monthly meetings. This led to many of the members receiving the Brigitte Murtagh Award over the past years. The Katlego Award for Excellence was achieved by Joan Du Plessis in 2023.

???5. When the CAB was established in 2002, all the members were unemployed and on social grants. The communities' perception was that they are entitled to get the grant due to their or their children or children in their care's HIV statuses. After some training and education programs to develop the members to become more empowered with knowledge and skills to make informed choices and become more self-sustainable, the group was taught to develop a curriculum vitae and apply for jobs and pursue careers.

1 became a policewoman
1 became a professional model
3 went to university – 2 completed their degrees (1 teacher and 1 social worker); the 3rd one could not complete her studies due to a sick child but started working as a counsellor.
1 started her own dressmaking business
1 started working at the Paarl Police as a counsellor for abused women and children
4 Became adherence counsellors
1 Went back to nursing. She resigned as a nurse before after her twins were born.

Our leaders in the CAB are:

Mr. Garth Fortuin Chairperson
Joan Du Plessis – Vice Chair
Loretta Jansen – secretary
Marie Tizora – Deputy Secretary
CAB liaison – Ceymore and Elise Thomas (temporary)

4. The Bud?dy Group

Comprises of the following: The CAB treatment consists of 80+ however in our meetings it consists of 18 to 23 adolescents that rotate from the 80+ meaning they don't come once at the same time they are divided in groups of 23 per Saturday.
Their target population: The HIV infected children and who are participants in our study's/trials.
The Aims of the CAB: Educating, motivating, restoring, empowering, and instilling a positive attitude towards a child who is living with HIV.
Meeting Frequency: We meet every third Saturday of the month.
Contact Persons: People who wants to know more about the CAB or are interested in becoming a CAB member can contact Ms Tembela Boyana
Where do they meet? They meet at J8 FAMCRU. (Mark cotton board room) From 10:00 a.m. till 14:00 p.m.
What achievements were accomplished? We have less adherence challenges, very low viral loud cases and its easy-to-get hold of them when we need them to enrol for another new study.
Our leaders in the CAB are: Thembi Mgini is the convenor / Leader, but none of the members is in a committee.
Some relevant info: Participating in a study, being a CAB member for the site that is conducting the research and not only focusing on participation numbers, also looking at the holistic approach of the participants.
Every second month, the unit social worker meets with the parents/caregivers of the participants (buddy's) for emotional, Psychosocial, and psychological support.

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