CHAPTER 3: THE NAZARETH HOUSE SUPPORT GROUP FOR ADULTS LIVING WITH HIV
In 2006 I took the initiative to start a support group for adult patients from the “Clinic of Hope and Love” living with HIV. My initiative was supported by Sr. Sylvia and Dr. Kerrigan and proved to be a mighty tool to help people to accept their HIV status, to share their HIV status with others like spouses, parents and children and to earn some income. The Nazareth house support group meets once a fortnight on Friday afternoon from 13.30-16.00 in the “Clinic of Hope and Love’’.
There are some simple rules:
> Confidentiality: Everything that is shared remains with the support group members.
> No xenophobia, because we have members from S.Africa, Congo, Zimbabwe, Zambia, Malawi, Ethiopia, Nigeria and the Netherlands and everyone is equal and we are bound together by being HIV+.
> Switch of your cell phones during the meeting and only one person speaks at a time.
The meeting starts with a prayer by one of the members in his or her own language and after that there are sometimes some announcements. After the prayer and announcements we make a round with the question: “How are you”? The members introduce themselves, tell their name and country of origin, since when they know they are HIV+ and they are telling about their present situation and how they are coping with living positively with HIV. If needed members translate on the spot what has been shared in for instance Congolese languages and Zulu.
During such a “How are you” round often topics spring up like:
> How do I tell my partner that I am HIV positive?
> How do I tell my children that I am HIV+?
> If I have a HIV+ child how and when do I inform that child that he or she is HIV +?
> Can I get children if I and my partner are both HIV+?
> What is a healthy lifestyle if you are forced to take ARV medication for the rest of your live?
> What are the side effects of the various ARV’s combination therapies?
> The doctor tells us that we have to eat a balanced diet, how do I get extra income to do so?
> How do I know about the progress of my HIV infection? What are CD4 cells, viral load, which opportunistic infections can we get and what is the result of defaulting TB or ARV medication?
Often also the results of the skills trainings for our members which started in 2013 are debated. The support group is governed by a democratically voted committee of 5 members who together with the founder of the support group, Ricus Dullaert, are governing all support group issues. Every year the support group members have the chance to vote a new committee.
The committee decides:
Which support group members (3 persons) will be appointed to be paid coordinators for the bead projects which often runs 6 months of the year.
The committee also supervises the functioning of the coordinators of the beads project.
The committee members are in charge of making the list of 150 HIV+ support group members, teenage support group members, hospice patients and children from the children’s home who are allowed to make beadwork. For this aim an attendance register of support group meetings is kept.
The committee members decide who qualifies to do a skills training paid by the support group for its members. It also decides if candidates that finished their skills training and manage to show a certificate are qualifying for a bonus from the support group to start a small business.
The committee spear points care for members that are in the hospice or hospital and in case of the death one of the members assist in organizing the funeral and the period of mourning.
The committee members are assisting the coordinators with the quality control of the beads that members hand in and make together with Jerry Vilakazi, the finance manager of the clinic, a list of payments at the end of the month.
One of the committee members is signatory of the Nazareth house support group bank account together with the social worker Benita Moyo and the financial manager Jerry Vilakazi.
An average support group meeting is attended by 40-50 persons and often the emotions are high with members sharing their experiences and start to cry, laugh, share proudly their achievements etc. Often the meetings are also attended by hospice patients who are still shy to be open about their status and are often not very well informed about all the facets of being HIV+. The support group meetings often help them a lot and often after those patients are discharged they keep visiting the support group meetings, because the support group has become like “a family” for them.