There are various studies around the world addressing the issue of how different support groups (infected and affected) respond to HIV education in different perspectives. For instance, there are studies in America amongst African-American men that explore personal beliefs and attitudes towards AIDS (Aguilar, 2014). While Aguilar discusses gender power relations affecting African-American women in sexual relations, other studies explore the impact of HIV prevention interventions on women in Latin America (for example Kalbfleisch & Cody, 2012), the influence of religion on attitudes to HIV testing in Kenya (Kemboi Onkware & Ntabo, 2011), as well as family influences on HIV infected individuals in South Africa (Kim & Motsei, 2002). Efforts have also been made to assess peer education strategies in HIV prevention (Monyake, 2010).
24 None of these studies, however, looked into how the support groups learned and shared their understanding of the medical discourses with significant others.
Mosuoe (2016) and Gonzalez (2013) among others, have shared similar perspectives regarding the role of support groups and this will be discussed in more detail.
Gonzalez (2013) indicates that by support groups, one refers to supportive functions performed for the individual by significant groups of others such as family members, friends and co- workers to demonstrate their love and caring, sympathy and understanding of the challenge their loved one encounters. Spirig (1998) specifies that support groups, within the health care perspective, focus on the provision of emotional support, and informational assistance from members who possess experiential knowledge. 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 Vyankandondera, Mitchell, Asiimwe-Kateera, Boer et al., 2013). Mosuoe (2016) adds that another support group role is to assist its members to return to health, work and normalcy. This is witnessed in a case where the better mental and physical health of members, enables them to function effectively, with an 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. Mosuoe further indicates that from the responses collected in her study, it becomes apparent that support groups create a conducive environment for their members to learn, interact, share and belong. Mosuoe’s (2016) study was of women in the Lesotho context and it is likely that the women’s support group discussed in her study influenced the establishment of the Botha-Bothe support groups.
According to Namwamba-Ntombela (2010) support groups help members cope with the emotions and challenges they experience when knowing they are infected. This was evidenced by Mosuoe (2016) in her analysis of how members of the Phelisanang Bophelong joined a support group after their HIV positive diagnosis and experiences of suicidal thoughts (such as a drowning at Katse Dam). Such thoughts subsided after meeting other infected people openly living with HIV. In a group, they learned that they are not alone in that situation therefore they
25 make choices and decisions that will improve the quality of their life and prolong it. They acquire better skills from each other to deal with opportunistic infections. The National Association of Social Workers (NASW, 2011) emphasises that support groups should work together with community members and other assisting professionals aiming to promote support groups’ efforts to learn new ways of coping with HIV and work towards broader social changes in attitudes towards HIV. Support groups increase the potential for effective capacity building, communication and advocacy as indicated by Hodgson, Nakiyemba, Seeley et al. (2012).
Although support groups are encouraged to be innovative and creative, they need to recognise that relationships are paramount (Namwamba-Ntombela, 2010). Kothari et al. (2015) state that it is essential for support groups to be broad-spectrum in nature to allow the discussion of numerous topics which can benefit and add value to the wider community and to avoid the establishment of micro-groups which may start to address topics considered to be out of their learning range.
Atanga, Atashili, Nde and Akenji (2015) indicate that support groups consequently widen the scope of, and access to, information that their networks can learn from. Atanga et al. (2015) and Hodgson, Nakiyemba, Seeley et al. (2012) share the same view that countries which experienced a ‘red flag’ (danger zone) due to the HIV pandemic, experienced relief from the intensive implementation of support groups. Such groups enabled a wide coverage on promoting HIV prevention and encouraged open discussion on people living with HIV (PLWH). Gonzalez (2013) further argues that group sessions can lessen the burden of the impact of stress. Support group members can however become over-protective of their members by focusing too much on ensuring all is well for the affected members. Atanga et al. (2015) further indicate that for stressed individuals, it is possible that perceived support can worsen the illness if membership has not been professionally classified and group members carefully selected. Individuals with higher depressive symptoms are advised to avoid forming support groups. For instance, if the support group is likely to increase depressive symptoms this can lead to poor adherence or prolonged use of depressants. Another support group role is to assist its members to return to health, work and normalcy. In spite of these cautionary observations, Hodgson et al. (2012) indicate that researchers have demonstrated a growing interest in how support groups help manage health and illnesses.
26 Several studies have revealed various reasons why people need and form support groups. Spirig (1998) and Walstrom et al. (2013) for instance suggest that viable support groups can enhance individual well-being because people share their experiences and feelings and help each other to work out strategies for managing their situations.
Mosuoe (2016) also maintains that support groups help each other, including when knowing that their siblings are infected and trying to help them during their suffering caused by the AIDS stage. Carnaham (2012) noted that support groups also help as social networks. This is where members develop empathy for one another. Support groups operate in different ways. Mowat (2007) mentions that membership in some support groups is formally controlled, with admission requirements. This is the case with the Botha-Bothe Mothers-in-Law support group which requires one to have an HIV infected childbearing daughter-in-law in order to join in. Other groups, according to Mowat (2007) are open and allow anyone to attend an advertised meeting, for example, or to participate in an online forum. In Botha-Bothe’s case one can cite the Mixed support group (Thusanang Bakuli) and Fathers to Fathers support groups as open groups because their membership is only controlled by the size of the room which they use for regular meetings.
Some formal support groups are entirely online. Mo and Coulson (2010) indicate that the practice of support groups meeting online is increasing. Individuals living in ‘self-imposed exile’
can benefit from this mode as struggling for face-to-face contact can be costly. Although online support groups seem to be popular in the USA, individuals still need to meet their counterparts on a face-to-face basis for comparison reasons in cases where ART has enforced long-term side effects (Mo & Coulson, 2010). There is a growing critique of online programmes observed from the Western population. Reeves (2001) criticises online support groups by indicating that they do not meet intended purposes because sensitive issues are discussed offline and deny other potential listeners a chance to benefit from the solutions to the issue. The argument is that such private conversations, if they were openly discussed could benefit other members and even non- members. It could therefore be argued that online support groups are a waste of resources due to the manner in which they operate and handle crucial but personal issues.
27 Brindley, Blaschke and Walti (2009) emphasise that an online support group is just a one piece of the complex puzzle needed when facilitating a more effective HIV and AIDS response.
Hodgson et al. (2012) condemn and label online support groups as a ‘failing focus’. They indicate that in online support groups, members do not value closeness, oneness or joint local home-based care clubs where members portray great dedication to assist one another by offering unpaid nursing and welfare assistance, which easily happens in face to face support groups.
Hodgson et al. further comment that support groups need to meet for empathy, care and consolation sessions after ill-treatment by other societal members. Most authors have the same understanding that support groups need to be established for motivational and health promotion purposes. This is why Hodgson et al. (2012), and Reeves (2001) for instance, negatively comment about online support groups and disapprove of efforts made in such groups. The efforts are labelled as a failing focus and a waste of resources. On-line contact was not a feature of the Botha-Bothe Hospital support groups due to a scarcity of technological devices and technical know-how. This study therefore focuses on three face to face support groups because these forms of support group are deemed more suitable to the Lesotho context.
Namwamba-Ntombela (2010) argues that support groups cannot replace the practical medical or counselling needs of individuals living with HIV. Support group capabilities have to be publicised prior to members joining to reduce expectations and allow informed decision making.
It has been recognised that different social groups require targeted interventions (UNAIDS, 2016a). Support groups, however, are often established for short-term, research purposes without taking into account the long-term expectations of each member about the support. Consequently, UNAIDS (2016a) discourages funding for support groups which have less than three year’s survival history. As early as 1998 UNAIDS indicated that funding for newly formed support groups can create jealousy and conflict among groups which hold a long survival history.
According to UNAIDS (1998) funding must be accessible to support groups which are clearly able to indicate their sustainability plan after the end of the donor funding period. According to Dr. Gupta (Personal Communication (PC) 2013), the support groups in the Botha-Bothe hospital premises are expected to run for a minimum of five years. After five years the groups are expected to continue independently in the community with minimal follow-up from the hospital.
28 However, during the beginning of the fourth year, new support groups are formed with the same purpose and criteria. New groups then run parallel to the already existing ones and meet at different times on a monthly basis so they equally utilise limited resources such as housing and health experts (guiding staff- counsellors, nurses, pharmacists and laboratory technicians).
It is important to note that all the above authors have the same view that joining support groups makes people realise they are not alone in their situation. This means the focus of establishing support groups is aimed at creating a platform for the ventilation of individual concerns and opportunity to learn how they can be overcome.
Literature on support groups intending to meet for informational support is minimal, regardless of its usefulness. Goldsmith and Domann-Scholz (2013) point out that informational support has proven to be more appropriate if given to members prior to their consultative meetings with the nurse or a doctor as this type of support can reduce waiting periods for patients being consulted by the doctor because questions and worries get addressed through the informational support system. This point illustrates the importance of establishing support groups such as those in Botha-Bothe. These three support groups are distinctive because they focus on acquainting themselves with medical discourses that are frequently used during their treatment sessions.
Some authors do question the formation of support groups for learning purposes. For instance, Modo, Modo and Enang (2011) suggest that such programmes (support groups) targeted at commercial sex workers, for instance, to promote consistent condom use are more effective through the use of mass media (radio) and entertainment (music and drama). They argue that such initiatives have had a significant impact on overall HIV prevalence in the country without necessarily establishing support groups for them. Therefore,Modo et al. (2012) and Motley et al.
(2017) criticise the formation of support groups and conclude that they limit their lessons to only the small group who have enrolled for support. This form of education erodes funds and scarce qualified human resources are confined to assisting only those specific people who join support groups. They also argue that it would be more beneficial to encourage the experts to work with journalists so that they can broadcast crucial health information to all listeners around the globe.
29 It can be argued, however, that if support groups can be used to inform the wider community about what they have learned in the group, then this latter concern can be addressed.
The issue of culture, particularly in a country like Lesotho, is paramount in this respect and there is a need to provide learning opportunities that take culture and traditional attitudes into account in order to influence behavioural and attitudinal change. Hence this study seeks to find out: 1.
How support groups in Botha-Bothe function as a community of practice and what new meaning do the support group members develop over time (for example as a result of the educational input, discussions and independent information seeking exercises that are generated in the support groups); and 2. What impact these new meanings have on how they respond to the epidemic in terms of HIV management, behavioural change and social relations.
Some authors have the feeling that the significance of culture in providing information to support groups is not visible. A case in point is cited by Price (2009) who says culturally adapted and audio-technologically HIV awareness raising programmes tailored towards the needs of support groups in rural communities are needed. Price (2009) encourages the establishment of programmes that emphasise the use of culturally adapted and technologically assisted educational interventions that are widely accessed in order to make them cost effective. Thus, HIV prevention is both affected by, and reinforces, culture. Modo et al. (2011) point out that with support group educational efforts, the main task has to be on recommending actions for change in a culturally sensitive manner.
Walstrom et al. (2013) elucidate that in countries where support group programmes have not been implemented, studies have shown there is an interest from various groups to initiate such intervention. In the few towns where support groups began, members highlight their success in understanding and supporting each other’s situation better.
It is worth noting that most support groups, in western or African countries, have focused on what other people outside the support group structure did or failed to do for them as individuals living with HIV. A common point of concern in support group discussions focuses on reports of how the members were treated previously by their relatives and community at large. A lot of
30 their precious time is spent on sharing how they overcome the challenges of ill-treatment posed by people closer to them. This behaviour indicates that support groups are a key resource for attention and sympathy. It can be argued, however, that HIV infected individuals need a changed focus whereby their support groups focus on delivering survivor messages that go beyond enabling people to lament their condition and experiences.
The continual improvement of lives of infected individuals inclined the work of Tsarenko and Polonsky (2011) to indicate the positive changes in knowledge and attitudes brought about by sustainable youth support groups. These addressed sensitive health issues such as sexual and reproductive health, including condom use for those who no longer abstain from sexual activities. Tsarenko and Polonsky indicated that the power and energy for youth to sustain their obligations through the support groups emanated from the effect of sharing these various obligations. The effect of openly sharing their sexuality and sexual status binds all members to abide by their obligations.
A growing body of literature from developing countries, as revealed by UNAIDS (2016a), indicates that youth support groups have influenced positive changes in knowledge and attitudes in youth sexual and reproductive health. The ARK Evaluation Programme (2002) for instance, found that youth support groups had increased knowledge about safe sex practices, access to and use of services through the utilisation of adolescent health corners. UNICEF (2014) reported that through such support groups, positive attitudes towards community leadership increased, with delayed initiation of sex, increased abstinence and better family communication. As a result of youth support groups the input, education and communication content improved across six participating areas (California, Texas, Geneva, Ohio, Toronto and Turkey the ARK programme gained popularity and funds increased for the initiation of similar youth support groups the programme became a strong intervention strategy which created a remarkable reduction of new HIV infections (Ark, 2002).
The Government of Lesotho (GOL, 2010) indicated the need for Botha-Bothe to begin educational support groups for HIV infected persons as an initiative to maintain or reduce the 16% HIV prevalence in the district. It will be seen that the Botha-Bothe support groups have
31 taken a different approach to that described in the literature. The three Botha-Bothe support groups worked hard to understand medical discourses that were regularly used during their health education and counselling session on monthly check-ups. This does not mean that the members ignored what each other went through during early stages of HIV diagnoses. But, they decided to learn and be resourceful support groups for their friends, neighbours and community, even including a desire to compensate for scarce literature in their vicinity. They decided to become conversant with general health issues and HIV specifically, regardless of their past experiences of psychological and emotional ill-treatment.
2.2.1 Benefits of support groups
Mosuoe (2016) and Harrison (2014) argue that women’s support groups are of great benefit to the group members and those outside the groups. The groups create the right platform for women’s empowerment to disclose their HIV status to their children, partners and in-laws without fear of rejection or divorce. This is because they have had guaranteed support from the group members who assist members to disclose their status for the benefit of good adherence to treatment and health management. The willingness of members to support each other emotionally in their studies ensured that every member was able to pick up the pieces and cope with the current life and behaviour changing chronic illness.
Walstrom et al (2013) cited a participant’s statement on an electronic bulletin board about a group he had belonged to:
I could share with these people my deepest secrets and still be loved. I would give up an arm or leg to have a new support group. I have tried to start one but it never panned out ... When I first became sick it was the group that gave me the strength to keep going. In the group we talked about life and we also got a guest to come in and teach us nutrition, legal aspects, alternative medicine and many other programs ... It saved my life so I know how important it can be for others. (Walstrom et al., 2013, p. 1509)
The above expression is an indication of trust and hope for real support which this member had already predicted she would get from support group members because they share the same sentiments. Atanga, Atashili, Nde and Akenji (2015) argue that membership in an HIV support