The once rejected, stigmatised and discriminated participants are currently back in the community sharing knowledge and skills they have gained from their membership of the support group. Queen, Thato, Libuseng1 Portia, Palesa, Puleng, Tukane asserted that they are who they have become, because of the PBSG. Their thorough knowledge about HIV and AIDS eased their state of health, and their literacy around treatment made them able to penetrate the health systems to forge better relationships with health professionals, thus sharing information and getting regular updates about HIV and AIDS.
How the participants picked up their pieces in relation to the community
It is noteworthy that the participants were placed in the local clinics as local adherence coordinators to support HIV treatment adherence, to encourage communities to test for HIV and to promote prevention of HIV transmission to the unborn children (as explained in earlier sections). In their effort to conduct that business, some of them encountered resistance from health professionals, perhaps due to their perceived low formal educational status or to resistance among medical personnel to the change that was introduced within the health system, whereby lay persons are attached to the health centres. Queen, for instance, had this to say in regard to Prevention of Mother-to-Child Transmission of HIV and AIDS (PMTCT):
...where I am placed, my relations with the nurses were initially not so good. I received negative responses whenever I went to inquire about forbidden drugs that were seemingly
174
given to HIV positive pregnant mothers…. However, with time that negativity stopped.
Maybe they realised that I had knowledge of PMTCT issues. Our relations are now good (Queen).
The participants reported that they shared the knowledge they have on HIV and AIDS with the community. Oueen went on to say:
…the community has a lot of trust in me. The clinic staff also has a very strong support for me. Even the health centres know that whenever there are HIV patients, it is my responsibility (Queen).
Thato, too, has become a community consultant on health issues. She explained that:
….whenever there is a sick person in the community, I am called upon to assist. The health centre invites me to educate communities about HIV and AIDS. I was the resource person during World AIDS Day at the health centre (Thato).
Maliketso became both a health reference point and a lay nutritionist. The community celebrated her presence among them. This is what she found:
One of my neighbours said to me, ‘Ahh! We know you, every time you come to us you bring new things. Your cooking style, how you handle patients’ – it is remarkable. I always encourage community members to test for HIV and to disclose their status. I tell them that HIV is manageable and give the example of myself that I even had TB (Maliketso).
Portia has acquired a new title in her community. She said:
They treat me as a leader in health care issues. They even refer to me as “nurse”. I am called upon anytime of the day when there are health-related emergencies.
People have a lot of trust in me (Portia).
Public speaking is another skill that the participants have developed, and through it, they have been able to impart the knowledge to their communities. Puleng, Tukane and Portia confirmed that they were shy and somewhat quiet in nature, but through their participation in the support group, they have lost those inhibitions.
Portia brings in another critical issue through her knowledge-sharing with the community. She said:
175
I am able to read their (community) facial expressions. While they may seem to be uttering statements that mock me about my HIV positive status, indeed I have noticed that there are those who do so as a cry for help (Portia).
The statement implies that not only is Portia knowledgeable about HIV and AIDS but is also fully aware of the community’s hidden perceptions about HIV and AIDS.
Overall, the community reception of the knowledge that the participants brought to them, seemed overwhelming. The fact that they moved from just ordinary, isolated and mocked women to becoming health reference points, indicates a shift in the acceptance level of community’s HIV and AIDS positive status. Statements such as “come and help this person he/she seems to have this sickness of yours” (as was said by a community leader to Maliketso) indicates some level of knowledge of HIV and AIDS by the community.
Tracing back stigmatising statements made to Palesa, Queen, Maliketso which ranged from forbidding them from drawing water from the same stream as the rest of the community, denying them cooking during community feasts and utterances such as “those that are hit by goods train”, meaning those that are infected, all seem to have subsided and the community instead views the participants with a positive lens of “life savers” and leaders. Even when the community expresses negative sentiments towards the women, as with Portia above, they have the confidence and insight to hear the “cry” that lies beneath the insult.
There are some additional skills that the participants acquired within the support group. These are: report writing skills, maintaining confidentiality and team work. While participants did not explicitly talk about them per se, their PBSG Management highlighted them in their joint interview with me: They said:
176
Most of our volunteers (participants) were never employed before being engaged as volunteers with PB. This has given them a wealth of working experience and they can now safely understand the world of work – taking instructions and reprimands positively; complying with reporting deadlines; meeting targets; confidentiality;
taking responsibility even without being pushed or watched daily (Phelisanang Bophelong Management).
This statement from their Management I consider the apex of the picking up of pieces towards wholeness; in that participants acquired a lot more than what they joined the support group for.
The self-directed approach demonstrated when doing their work, as well as their ability to acquire knowledge about HIV and AIDS while maintaining the patient’s confidentiality – have demonstrated some degree of professionalism. The participant’s ability to adjust to the world of work with minimal supervision justifies the element of wholeness. The low educational level of the participants (as talked about in Chapter Three) versus their pursuit to rise above HIV positive condition, all contribute to picking up of the pieces of a shattered life and moving on..
The roles and activities of the Local Adherence Coordinators are summarised in the diagram below:
177 Figure 6.2: Roles and activities of LACs
Source: Researcher
Now that I have discussed the various kinds of knowledge and the skills acquired through the participants’ participation in the support group, I see it befitting to give a brief yet holistic view of the role of support groups as viewed by different scholars. I do this, in order to compare what the participants gained, in relation to support group practices as reported by other scholars.
The role of support groups
It would seem necessary to briefly look at the role of support groups – perhaps not to be viewed as just groupings of people with similar characteristics or motives, but rather to critically identify key activities that happen within these groupings, with a view to assessing any benefits that members are seen to gain from participation in them. In doing this, I will explore the relevance of my findings about PBSG, to the wider scholarship on HIV and AIDS support groups.
Members of support groups
Local Adherence Coordinators
(LACs) Clinic
Individual households
Community
LAC are members of
individual support groups
LACs provide home-based care for HIV+
clients LACs counsel
and test patients at
clinics
LACs are community advocates and resource persons for HIV and AIDS
services
178
One of the key roles of support groups, is economic empowerment of its members. Walstrom, Operatio, Zlotnick, et al., (2013) emphasise the need for support groups to have viable funding to sustain programmes and projects for its members. I have already discussed how economic empowerment adds value to the well- being of its members (the example of Thato, Palesa and Maliketso above).
Another crucial role of support group is to facilitate the disclosure of HIV positive status to the other family members, especially children, as well as the community as a way of eliminating stigma. Walstrom et al. (2013) cite a study that they conducted in Rwanda, whereby disclosure to children was influenced through participation in a support group. The reaction confirms what Thato did to her children by initially lying to them and saying that she was taking ulcer medication, while in fact she was taking ART, but later on “picking up her pieces” to mend her relations with the family by telling them the truth (as discussed in section 6.2 above).
Promotion of a sense of belonging, is another role of a support group. Participation of members in support groups creates a feeling of rebirth and motivation to survive – this implies gaining true strength to continue with life to its fullest (Walstrom et al., 2013, p. 95). This is witnessed in the various testimonies by the participants, on the various skills acquired from their participation in the support group. The knowledge sharing and team work as demonstrated by them, are clear indications of their interaction level both amongst themselves and with the community.
The acquisition of new names such and “leaders” and “nurses” all bear reference to the critical role, they each played in the support groups. Failure to belong to a support group could lead to
179
unpleasant consequences, just as one participant (from the Walstrom study referred to above) confessed her wanting to kill herself upon discovering she was HIV infected.
This statement is similar to Palesa’s feeling upon HIV positive diagnosis (as discussed in Chapter Five under HIV testing and disclosure). She wanted to commit suicide; to drown herself in the Katse Dam. Had it not been for her family’s support and subsequent joining of the support group, the act of committing suicide could have perhaps happened.
Apart from being the support for home-based care facilities within the communities, support groups are social mechanisms that connect existing groups of people living with HIV together and they connect them with other systems, including health services (Walstrom et al., 2013).
This view is witnessed by the PBSG which harnesses knowledge about HIV and AIDS from other district structures, such as the District Health Management Team (DHMT) and the clinics, as well as conducting district-wide mobilisation of support groups of people living with HIV and AIDS to connect them with PBSG.
Support groups increase the potential for effective capacity building, communication and advocacy as indicated by Hodgson, Nakiyemba, Seeley, et al., (2012). Support groups or networks are active in the promotion of income generation, music, drama and vocational skills development.
Through their participation in support groups, Thabitha, Palesa, Maliketso, and Libuseng1 have established small businesses which help them generate income for their families. They no longer depend on hand-outs.
180
In terms of drama, Thato has acquired communication skills which she uses to transmit HIV and AIDS messages to the community. During a district-level commemoration of AIDS day, Thato uses drama to convey the messages on the importance of prevention of Mother-to Child transmission of HIV.
Support groups were used in Uganda as a vehicle for HIV testing and counselling and uptake increased, there was greater access to HIV and general health services by following up on TB and HIV treatment and performing prevention of mother-to-Child Transmission of HIV (PMTCT) services (Hodgson, Nakiyemba, Seeley, et al., 2012, p.1369). Similar roles are seen played by PBSG where it has placed participants in health centres to promote HIV and AIDS services.
Support groups, in addition, are perceived as places of safety and validation – a safe space for sharing with and being heard by other HIV infected peers; a space where there is less loneliness and increased connection and unity with other group members. Examples drawn from Rwandan women read:
…you know when I came to the group we didn’t use to talk about HIV, we didn’t have friends. And here we met women who have the same problem, we talk, we discuss, we visit each other (Walstrom et al., 2013, p. 94).
In terms of improving adherence to HIV treatment, Atanga et al., 2015 mention that
support groups have the potential to modify factors that are associated with poor treatment adherence ( Atanga, et al., 2015, pp. 1-2).
The example of this role is with the PBSG that has attached its members to the health centres to promote treatment adherence for HIV infected people. This structure is called Local Adherence Coordinators – 12 of the women, with the exception of Papali, are recruited and attached to the clinics for this exercise.
181
Another support group role is to assist its members to return to health, work and normalcy. This is witnessed in a case where better mental and physical health of members, enables them to function effectively, with improved sense of personal competence, self-esteem and independence.
In terms of maintaining or mending relations between partners, support groups seem to be playing that crucial part. Thato noticed a change in her once sour relations with her partner, which I have alluded to in the earlier section.
From the responses made as well as the literature listed, it becomes apparent that support groups create a conducive environment for their members to learn, interact, share and belong. The ultimate goal of participation in this forum is to gain more strength, change perceptions about life and improve relations both with the family and the environment the members are in, thus justifying the “picking up pieces” notion of moving from being a centre of mockery to one of wholeness. The statement made by Palesa below bears testimony to the critical role and identity transformation played by participants as members of support group. She said the following:
…my community now comes to me for advice and guidance. They come to say that I should advise them on what to do with HIV and AIDS…. The very people who were stigmatising me before now come to me and tell me about their health condition and used to ask me if I would encourage them to test. Those that were HIV positive are now taking medication. They are the very people who ask me to become their treatment supporter. I give my community all the information about HIV and AIDS (Palesa).