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Thandiwe, too, has no problem taking her medication openly. While most of the time she kept her medication at home, every time her treatment supporter reminded her to take it, she would comply. This indicates her openness with her treatment. In fact, Thandiwe confirms that even if she were to be asked by anybody if she took ARVs or not, she would boldly say “yes”.
Having discussed picking up the pieces of one’s life in relation to personal health, the next section discusses breaking the silence around HIV and AIDS and coming out into the open and reconnecting with the society, joining support groups and then moving forward from isolation and alienation, to belonging.
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breaking the silence around HIV and AIDS and challenging the stigma and discrimination that seems still to be rife.
Libuseng2, Queen, Thato, Maliketso were among the first participants to break the silence around HIV. Libuseng2 said:
…my community knows about my HIV status. I disclosed my status. I have no problem interacting with my community. I think the fact that I openly disclosed, made it easier for me to be accepted. There are no signs of discrimination (Libuseng2).
In terms of the utterances that were coming out from the community about the people who were suspected to have the virus, Palesa was the one who was indirectly pin-pointed with utterances such as “Ba Hometsoe”(a belittling statement that means “those with ringworms, they are infected all over by the disease”).
Coming out in the open for the participants meant joining the support groups of people living with HIV and AIDS, within their areas and later on moving to the core group, which served as the umbrella organization of support groups with HIV and AIDS in the district. This is the Phelisanang Bophelong Support Group (PBSG) which is one of the foci of this study.
At this point, it is worth providing a brief description of the PBSG, its origins, pioneers and how it is structured, as well as its linkages with other HIV and AIDS organizations in the Leribe district. The information from this section is drawn from two main sources: The first one is my own experience working as the HIV and AIDS District Coordinator in the Leribe district, where I had regular interaction with the support group. The second source is the interview I had with the Programme Management Team of the PBSG. This will provide an organizational context for understanding the participants’ efforts at social reintegration.
166 Phelisanang Bophelong Support Group (PBSG)
PBSG is a support group of people living with HIV and AIDS. It is located in the Leribe district.
The support group was established in 2004. The purpose of this support group is to improve the quality of life of vulnerable groups, by ensuring access to HIV treatment, care and support services. The PBSG is an affiliate of the Lesotho Network of People Living with HIV and AIDS (LENEPWHA) – an umbrella organization of people living with HIV and AIDS, whose key mandate is to advocate for the rights of people living with HIV and AIDS.
Origins
The support group was established by individuals who tested HIV positive from the Motebang Clinic (the only health centre in the district that provided ARVs then) who wanted to support each other with issues of treatment adherence, mitigating stigma and discrimination.
Participation in the support group is open to both men and women of all age groups. It is purely voluntary, but one of its conditions is public disclosure of one’s HIV status.
Structure
PBSG has a formal structure. It has a governing body (Board) whose key role is to provide strategic leadership in the management and coordination of PBSG activities. This includes the Secretariat – the implementation arm of the PBSG. It comprises technical staff who oversee the day-to-day functions of the organization. It is staffed by a Programme Manager, Programme Officer, a Monitoring and Evaluation Officer and an Office Administrator. Below the Secretariat, are the community-level support groups who educate communities about HIV and AIDS. Within this structure emerge the study participants who PBSG has attached to the health centres (clinics) to support issues of adherence. They are referred to as Local Adherence Coordinators (LACs) who work with the individual households either directly or through the health centres as the need arises.
167 PBSG Activities
PBSG’s mandate is to educate communities about HIV and AIDS, to promote HIV counselling and testing, to conduct treatment literacy to newly enrolled clients, to promote adherence to HIV treatment and positive living and to provide psycho-social support to individuals and families of HIV infected people. The support group harnesses most of the HIV technical knowledge from the district level health management team (DHMT). DHMT is a multi-sectoral team of health service providers of which PBSG is a member. Information that is discussed at DHMT level is filtered through the clinics and LACs for dissemination to the communities. The diagrammatic view of the PBSG structure is illustrated below:
Figure 6.1 Phelisanang Bophelong Support Group Structure
Source: Researcher
LENEPWHA District Health
Management Team (DHMT)
(
(
PBSG Management Board Clinics
PBSG Secretariat
Community level support groups
Individual households
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The PBSG meets on a monthly basis. A typical monthly meeting of the support group would involve presenting progress reports on different tasks assigned to each member, sharing skills and experiences regarding members’ assignments at the clinics, discussing modalities of bettering their work and the group, as well as sharing any new knowledge/information regarding HIV and AIDS. It is at these forums that members usually suggest additional initiatives that would improve economic status. Some of these initiatives include savings clubs, stokvels, small livestock rearing, vegetable gardening and small business activities. These additional income generation activities, are not a core business of the PBSG per se, but rather come as a way in which members prefer to make a living at individual levels.
Having briefly discussed the PBSG, I now look at factors that prompted these participants to join the group.
Factors that motivated participants to join the group
There were different motivating factors for joining the support group among these participants.
The motives range from escaping the feeling of loneliness, by running away from the stigmatising and discriminating environment, as Cassidy, (2010); Atanga, Atashili, Nde and Akenji,. (2015) put it. Another motive is locating a new home with a new supportive family (especially for participants who never received support at their homes) and obtaining more knowledge, information and skills around HIV and AIDS in order to deal with it more effectively. The issue of a “new family in this context is supported by Rule and John, (2008), in their study of HIV and AIDS support groups, in which participants in the study alluded that a support group is a “family where they feel accepted and supported, thus giving them strength to live openly and positively in their communities” (Rule & John, 2008, p. 90). Joyce had this to say about a support group:
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…when I was told I had HIV, I was scared. I did not want to share the news with anyone.
I did not want my mother to know, but later on I decided to tell her I was HIV positive. She encouraged me to join support groups because I would learn a lot about dealing with my HIV positive condition. My mother was providing home-based care to the sick people in the village (Joyce).
Others joined the group unexpectedly and involuntarily, but were bound circumstantially to become part of the group. For instance Papali said:
I joined the Association (PB) in 2013, I am very new to the association. I was referred to it by a nurse at the Motebang clinic after being tested HIV positive during my antenatal care visit (Papali).
Puleng, joined the group based on the advice she was given as well as her desire to learn more.
This was what she has to say:
I joined PB in 2005. I was advised by the nurse at my clinic about the association of people living with HIV. I decided to join because I wanted to learn a lot about HIV (Puleng).
Each of the participants joined at different times and for different motives. The majority of them (Queen, Maliketso, Palesa, Puleng, Tukane and Libuseng1) were actually among the pioneers of the support group as they joined somewhat earlier than the rest of the participants.
Thato is of the view that if she did not join the support group, her life would not have changed.
Perhaps the change that she was looking for could have been the change that she witnessed from her spouse’s ultimate acceptance of the HIV positive condition, or the change in terms of the knowledge and resilience that she developed over time. Of all the participants, Thato seems to be the only one who was change-driven to join the support group. Here is what she said:
I joined Phelisanang Bophelong (PB) support group during World AIDS Day commemoration at St. Denis Health centre. We had already established a support group at the community. We were seven in the group. I was nominated to attend a workshop on home-based care and was told that if I perform well I will then join PB and conduct community awareness trainings…. When I received nomination I was worried about my husband’s reaction. I went to the priest and told him about my nomination, how I fear about my husband‘s reaction. He advised me to go and learn more about HIV, maybe what I will learn there will change my life (Thato).
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As I explained in the previous section about the group’s establishment, some members were recruited from their homes when the association was doing HIV awareness programmes in the communities (the case of Libuseng2).
There are those who joined the group from the already established mixed HIV status “informal”
support groups in their communities (Thato, Thandiwe and Maliketso). I refer to them as informal because these were support groups where there was no formal structure such as entry requirement for joining. They were non- registered, with a lack of affiliation to an umbrella organization of people living with HIV and AIDS, etc.
Some of these members belonged to the already existing support groups duly established by the health centres, in order to support their treatment adherence initiatives. Below are some of the responses by these women:
I think it is because I joined a support group in my village then Phelisanang Bophelong went and established support groups of people living with HIV. That is why I got closer to them, attended their training workshops.I then became a full member (Maliketso).
It is worth mentioning that Maliketso, Puleng, Palesa, Libuseng2 and Papali were encouraged by the health centres where they were being treated, to join the PBSG. This action by the health centres could be seen as contributing towards reinforcing the concept of “picking up of the pieces” – which by itself denotes taking further steps, towards regaining self-worth and towards building one’s identity, as well as discovering more knowledge about HIV treatment; the sharing of experiences and learning about what other women with similar experiences have been through.
In terms of those participants who may have joined in search of a new home with new members of the HIV positive family, Libuseng2 and Palesa are such examples. It will be recalled that the
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stigma and discrimination that Palesa suffered both from her own community and the health centre nurse regarding her HIV positive status (community utterances such as “those that are heavily infested! We cannot drink from the same stream as them!” etc.) was more reason that she and Libuseng2 decided to join a new family where the members speak the same HIV language. PBSG went to the health centres (clinics) to create awareness about their existence and to encourage HIV positive patients to join. It was where Libuseng2 and Palesa’s quest for a new family was fulfilled.