The focus of the previous chapter was on the presentation of the findings from the multiple case studies of female adolescents living with HIV and their grandmothers caring for them. The raw data of the interviews and the field notes were presented in themes and categories that emerged from the analysis. The findings were validated with direct quotations from the raw data. In this chapter, a cross-case validation report of the six cases will be presented. The cross-case validation will facilitate a clear understanding of what constitutes the experiences of living with HIV among female adolescents, as well as the experiences of caring for a female adolescent living with HIV. The literature control was undertaken to recontextualise the study within the existing body of knowledge.
4.2 DISCUSSION OF THE FINDINGS
From the study data, four themes and accompanying categories were identified. The themes captured the different experiences for each case. The data focused on the experiences of female adolescents living with HIV and their grandmothers who care for them. Table 4.1 presents a summary of the themes as derived from the case study data.
Table 4.1: Overall summary of themes and categories that were identified
Themes Categories
1. Experienced quest to survive 1.1. Experienced a lack of provision for daily life because of the lack of resources
1.2 Experienced physical effects because of poor health status that was physically draining
1.3. Experienced side effects of
178
Themes Categories
medication for HIV
2. Experienced support system 2.1 Experienced clinical support through nurse-patient relationship
3. Experienced psychological effects 3.1. Experienced poor acceptance of the HIV status
3.2. Experienced low social integration because of betrayal, isolation, loneliness and suicidal ideation and lack of friendships
3.3. Experienced feelings of loss: grief, fear, stress, mistrust and worry about the future
4. Experienced extended duty of caregiving role by grandmother
4.1. Experienced adherence support through medication reminders
4.2. Experienced that the emotional support by the grandmother led to a deeper attachment to the granddaughter and the duty of counselling
4.3. Experienced protectiveness in day-to-day care
4.4 Experienced a burden of care for other family members living with HIV
179 Colour codes: female adolescent = blue, grandmother = green, both female adolescent and grandmother = purple
In the passages that follow, each theme and accompanying categories will be discussed and supported with literature. Cross-case validation allows for the analysis of case study research and pays particular attention to the similarities and differences of the individual cases to heighten the understanding of the experiences (Heale & Twycross, 2017:1). The similarities and differences between the case studies provide an important influence between the cases (Silva & Merces, 2018:1197). This means that it allows the researcher to make generalisations based on the commonalities within these cases, which further contribute to the generalisations the researcher may come up with.
In this study, the analysis focused on the experiences of female adolescents and their grandmothers who care for them. Therefore, the cross-case validation report will describe the general experience of living with HIV and caring for an HIV-positive adolescent across the six cases, even though the details within each case may differ, with supporting literature.
4.2.1 Theme 1: Experienced quest to survive
Theme 1 relates to the need to survive for female adolescents living with HIV and their grandmothers caring for them. It describes how both the female adolescent living with HIV and the grandmother experience challenges associated with the lack of resources, physical effects as a result of HIV-related symptoms, and side effects of the medications. This theme is an integral part of the six multiple case study database, as participants struggled to organise scarce resources such as money and food.
4.2.1.1 Category 1: Experienced a lack of provision for daily life because of the lack of resources
Female adolescents living with HIV and their grandmothers caring for them were confronted by day-to-day deficiencies due to a lack of resources. Everyday living
180 was a continuous process whereby the female adolescent and the grandmother faced the realities of lacking critical resources. In the HIV management sector, before the practice of differentiated care, monthly hospital visits were a requirement to ensure satisfactory treatment progress (Swaziland HIV Guidelines, 2018). All participants lived far away from the health centres and they struggled financially to cover transport fare to and from the clinic. Participants talked about having to walk a significant distance early in the morning to the clinic, particularly on days when money was not available.
Amidst the financial challenges, female adolescents were keen to maintain a good adherence level on their ARVs and thus would devise the means to ensure they did not miss their clinic appointments. In the case of Tholiwe, she shared that at times she would steal a few coins per day from her sister in preparation for transport fare.
Even though she realised that this was not acceptable behaviour, she struggled to ask her sister – who was employed – for transport fare because she and her grandmother decided not to tell anyone else in the family about her HIV status.
In Thandekile’s case, it was a deliberate decision by her grandmother to enrol her in a health facility further away from where they stayed due to her lack of trust in the local healthcare workers and clinic support staff. However, this decision had financial implications for both Thandekile and her grandmother who had no financial income apart from the elderly grant pay-out. Although Thandekile’s parents were both alive, she received no support from them. Hence, she had to walk a long distance to get to the clinic for her ARV refill.
As articulated by Simile, Nokulunga and Phephisile, the distances to the clinic were too great and they experienced fatigue after undertaking the long journey. For all the participants, clinic appointments were a source of stress because of their lack of transport money. Money was seldom available for transport and when it was, they only took public transport in the morning to be on time and skip the queue; they still had to walk back home.
Research indicated that such long distances coupled with lack of transport fare can be a deterrent to ARV adherence among people living with HIV (Shigdel, Klouman,
181 Bhandari & Ahmed, 2014:113). Though focusing on adults and adherence, Shigdel, et al. (2014:113) reported that costs and travel times to ART centres were commonly cited factors affecting adherence to ART. In another study conducted by Shabalala, et al. (2016:14) on rethinking the context of the family in the HIV epidemic, it was found that many families caring for adolescents living with HIV find themselves in fragile economic circumstances that directly impact on treatment trajectories when fares for transport to the clinic are not available. The study revealed that the most vulnerable forms of families are the skipped-generation families, as in this current study, where unemployed grandparents, mostly recipients of the elderly grant, care for their orphaned grandchildren.
Food was generally the main item required on a daily basis. The unavailability of food was a crisis that confronted all the participants across the multiple case studies.
Female adolescents in the case studies spoke of the difficulty they faced when they had to take their medication on an empty stomach due to the lack of food. They were also aware of the adverse effects of taking the drugs on an empty stomach.
Participants reported feeling dizzy, abdominal disturbances, as well as nausea. As a result, female adolescents reported a disinclination in taking the medication on an empty stomach. In a study by Coetzee, Kagee and Vermuelen (2011:147) on structural barriers to adherence on ART in resource-constrained settings, findings indicated that food insecurity as a function of poverty emerged as a barrier to pill taking. Their participants also reported a reluctance in taking pills on an empty stomach. This led to disruptions in the regularity of doses due to hunger.
Even though the lack of food was harsh and often unbearable, grandmothers preferred holding their ‘ability-to-provide posture’ and refrained from requesting food parcels from neighbours. For them, knocking on people’s doors equated to the public disclosure of their granddaughter’s HIV status since community members were not inclined to assist if the full details of the circumstance were not provided. As primary caregivers, grandmothers explored other means of providing for their households in order to promote survival. According to Demmer (2011:873-879), in a study focusing on the experiences of families caring for an HIV-infected child in KwaZulu-Natal, South Africa, caregivers are typically very poor and focus their energies on living day-to-day. Findings also reveal that money and nutritious food was a constant
182 preoccupation and source of stress. Similar to this current study, the grandmothers’
common source of income was the elderly grants which they used to buy a few household necessities. Similarly, a study by Lentoor (2017:3) on caregiving in the context of HIV showed that lack of financial resources and financial support was something that caregivers confronted on a daily basis and presented a major socioeconomic stressor.
Grandmothers in this study were all primary caregivers of the female adolescents living with HIV as well as the breadwinners for their households. The unemployment status of the grandmothers automatically placed them in a position of frustration and difficulty when it comes to financially providing for their households. The added expense of the monthly transport fare to the clinic increased the expenditure of the household, which thus necessitated cutting back on other household necessities.
This was particularly the case in households where there was more than one female adolescent living with HIV. This was the story in the household of Simile and Nokulunga’s grandparents. Without financial support, many families in Lentoor’s (2017:3) study also struggled to make ends meet.
In addition to taking care of the female adolescent living with HIV, grandmothers were challenged with maintaining the health of the female adolescent. As shared by Nokulunga’s grandmother, when they had nothing to eat, they just went to the field to pick wild spinach and used it as a relish. She was aware that her granddaughter had to eat before taking her medication. Bejane, Havenga and Aswegen (2013:76) found that caregiving in HIV is complicated by the special needs that children living with HIV have. These include adequate nutrition, taking meals before administering medication and frequent trips to the health facility; all of which demand financial resources and the caregivers would pinch from their pension grant. Lentoor (2017:3) also reported that caregivers in the context of HIV experience a challenge with meeting the nutritional needs of the children due to lack of resources.
Another study by Nong, Mothiba, Malema and Bopape (2015:89-101) in Limpopo, South Africa, concurs with the findings of this study. Their results indicated that participants caring for children infected with HIV struggled financially and largely