Botha–Bothe is a small town in the north of Lesotho. It has an estimated population of 109 907 which is 5.8% of the total population, as identified by the Lesotho Demographic and Health Survey (LHDS) (GOL, 2009). HIV prevalence in Botha-Bothe is lower than elsewhere in the country at 16% (Help Lesotho, 2016). This district started HIV care and support in May 2006 and offers chronic care to 12 897 clients district wide of which 10 773 are taking Antiretroviral Treatment (ART) while the remaining 2 124 are on pre-ART care and both groups attend monthly check-ups. The fact that support groups were introduced in the Botha-Bothe district may be a significant factor in the relatively low prevalence rates.
1.13.1 The response in Botha-Bothe – establishment of support groups
In order to encourage people in this district to join the learning support groups, health workers had to be persistent. The HIV and AIDS situation in the district was reaching alarming rates.
More and more people were presenting in health centres with HIV-related ailments. Health centres including the hospitals were admitting more and more patients. Patients who were treated seemed not to be adhering to treatment requirements. The health centres were experiencing re- infection and co-infection cases among HIV patients and to some extent, patients presenting with opportunistic infections such as tuberculosis and sexually transmitted infections. Additionally,
18 there were cases of infants born with HIV and AIDS, despite the PMTCT Programme which was already in place. With the influx of HIV patients presenting with these ailments, the health centres were no longer able to cope with the work load. In this regard and to try to mitigate this, the Botha-Bothe Hospital of the Ministry of Health, working with its partners such as Elizabeth Glaser Paediatric AIDS Foundation (EGPAF) initiated the establishment of Support Groups for HIV infected and affected individuals in 2009. According to the Ministry of Health and Social welfare (GOL, 2009), the objectives of these groups were to scale up HIV and AIDS prevention care and treatment messages among and across the groups and create a platform for the groups to share and learn from each other’s experiences. Another objective was to create a more coordinated organisation which would enable interaction as well as ease of follow-up by health professionals. Therefore, the support groups were initially formed by a few members who felt the need for learning about the dynamism of HIV because they believed the slogan: ‘know your enemy’s strengths and weaknesses to be able to defeat it’. The response began very slowly with people determined to learn about and understand HIV and AIDS to be able to manage and support each other. The groups initially started with a few people joining and the number increasing gradually until joining in was stopped in order to maintain a manageable group size.
The structure of the groups
The groups have been structured into three categories: support groups for people living openly with HIV and AIDS; support groups for mothers-in-law; and support groups for men.
a) Support groups for people living openly with HIV and AIDS: This is a ‘mixed group’ of males and females who are already taking Anti Retro-Viral treatment (ART) on a monthly basis. Some of the group members are not yet receiving treatment but are just on HIV care because of their CD4 count that is above the threshold of 350. The group that is on ART meets on a monthly basis when they come to the ART centre for their medical follow-ups (check-ups). On their meeting date, the support group arrives very early in the morning to submit their health booklet which has ART file numbers at the reception.
Then they meet in the ART lecture room for two hours. In these meetings, members discuss topics of their interest which were given to other members on a previous visit to research. After this discussion, one member of staff presents on the topic chosen by the members and given to him/her on their previous meeting. Before the end of the meeting,
19 support groups allocate topics for discussion on the next monthly meeting to the staff and other support group members. After the meeting, members of the support group go to the waiting room to join the rest of the people who have come for their monthly refills and queue up for routine triage. This includes: TB screening, taking and recording their monthly weight, drawing blood for various medical reasons, meeting the counsellor for psychosocial support, adherence preparation and adherence monitoring, consulting the nurse or the doctor when necessary and getting medication at the ART clinic pharmacy.
The other sub-group of HIV positive members who are not yet initiated in ART do attend the monthly meetings of the group but undertake health check-ups on a six month’s basis for CD4 count and other medical examinations.
b) Support group of mothers-in-law known by the group itself as ‘Mothers to Mothers’
(M2M): This support group is formed for elderly women who are considered to be the in- laws of the HIV positive mothers at child bearing age and attend Ante-Natal Care.
Mothers-in-law meet every month on a scheduled date in the hospital premises at the Mothers to Mothers offices’ waiting area. The purpose for this support group is to empower each member of the group with information relating to PMTCT of HIV. These elderly women learn about the prevention measures which a family can agree on to help the HIV positive expectant mother not to infect both the unborn baby and the infants.
Topics of concern in this support group include: HIV mode of transmission, prevention strategies for all age groups in the family, discordant couples, the importance of three DNA/PCR lab tests for a child, exclusive breastfeeding, formula feeding, food preparation and hygiene, importance of condom use and the support expected from them by their daughters-in-law. One becomes a member of this group until the grandchild is six months old.
c) The last group is called ‘Fathers to Fathers’, which was initiated by concerned males who thought that men were not doing enough in the prevention of HIV. This support group intended to increase male involvement in health issues by equipping males with health information and training them to become the male focal persons in their different
20 villages. These males meet quarterly and get trained on different health issues by qualified health personnel. The topics include: HIV transmission and prevention, correct and consistent condom (CCC) use, discordant couples, how to access post exposure prophylaxis (PEP), the importance of male circumcision, and family support in the Christian and cultural context. Most topics are suggested by the support group while sometimes their questions form topics for the next meeting.
A support group as a concept is used in this context in a broad sense to mean a group of people who come together to talk about a challenge, an experience and/or role that they have in common without being judged, blamed, stigmatised or isolated (Namwamba-Ntombela, 2010).
Support groups have been supported by a number of writers because they are a source of emotional support, especially for people who are HIV positive. Mosuoe (2016), Atanga, Atashili, Nde and Akenji (2015) outline that the benefits of joining support groups need to be individually felt. Atanga et al. further indicate that such benefits must include good adherence to antiretroviral therapy and improved individual physical and psychological health among people living with HIV and AIDS. Support groups are also useful for family, friends and community members of people living with HIV and AIDS.
This study focuses on the learning processes that have been involved in creating such benefits.