Biographic and demographic data

Simile (pseudonym) was a young lady of 21 years. She was doing Form 4 in a local high school, walking distance from her home. She was diagnosed with HIV in 2013 and has been on ART since 2016. Her regimen is Tenofovir (TDF) + Lamivudine (3TC) + Efavirenz (EFV). She had lived with her grandmother since she was seven years old. Her mother passed on after a long illness while she was still young. Simile and her younger sister were already staying with their grandmother at the time of their mother’s passing. The homestead had multiple houses in good condition where members of the extended family live. Simile’s younger sister was also living with HIV.

Prior to finding out about her HIV status, she experienced some relentless coughing and progressive loss of weight. When she got tested for HIV, the results were not communicated to her but to her grandmother, and she reported that at first, she did not understand what was going on. Soon thereafter, she and her grandmother visited the clinic where she was initiated on cotrimoxazole while the workup for ART initiation was being carried out. She experienced adverse effects from the drugs at first, however, the effects lessened with time. She described being on ART as a journey that gets better with time.

82 Simile described her relationship with her grandmother as a perfect one because her grandmother loved her. However, at home she was at peace with other family members because they let her do all the household chores alone. Her HIV status had not been disclosed to her cousins, who were the same age as her, and that increased her armour to guard against accidental disclosure of her status. She was of the opinion that one of her aunts did not like her very much, but she could not figure out why.

Simile’s grandmother, Gogo Mathabela (pseudonym), was 67 years old. She was unemployed but had a stall at the school’s market place. She supported herself and the family with the proceeds from the market stalls. She had taken care of Simile since she was little, but she was not Simile’s biological grandmother. She reported that she was a sister to Simile’s biological grandmother. When she agreed to take care of the children, that is, Simile and her younger sister, she noticed that the younger had a failure to thrive. She then began the duty of caregiving for a child living with HIV. When the younger one became better, she noticed that the elder one, Simile, was showing manifestations such as coughing, loss of appetite and failure to gain weight. At that time, some health workers were conducting HIV tests within the community and she gave them permission to test Simile. She was shocked that the results came back positive. The hospital trips started all over again. Simile’s grandmother reported that she felt dismayed and heartbroken at the same time, even though she suspected that Simile might be HIV positive.

Gogo Mathabela had biological children living with HIV and had been a caregiver to them as well. She expressed concern that her granddaughters were not performing well at school, and at one point, she lost the government’s support because Simile had failed at school. Regardless of her willingness to support her granddaughter, she had no one to support her financially.

The identified themes are discussed in the paragraphs that follow with quotations from the raw data.

83 a) Theme 1: Experienced quest to survive

Theme 1 discusses the challenges that both the female adolescent, Simile, and the grandmother, Gogo Mathabela, experienced. The female adolescent experienced difficulties related to living with HIV. The challenges were linked to a lack of financial support and the physical effects of the treatment. Despite these challenges, Simile wished to live her life to the fullest even though HIV had some obvious physical effects on her.

Gogo Mathabela, on the other hand, experienced challenges related to being the primary caregiver and family support for the female adolescent living with HIV. She was in constant pursuit of survival just to provide comfortable living conditions for Simile, her younger sister, and the rest of the family who depended on her.

The following categories were generated from the main theme:

a.i) Category 1: Experienced a lack of provision for daily life because of the lack of resources

Everyday living was a continuous struggle whereby Simile and her grandmother faced the realities of their lack of resources. In this category, Simile and her grandmother (Case 1) described the shortage in terms of financial resources as well as food items. Simile (A, 21 years of age, Form 4, in school) described the difficulties of having to attend a clinic appointment when she was aware that her grandmother did not have the money.

“Bumatima lengihlangabetene nabo, njenganyalo lokukuvalwe tikolwa vele kute lemali kahle vele kudzingeka kutsi vele Gogo ayiboleke lemali nakhona lemali uyiboleka lakubomalume phindze kufuneka lemali ayibisele nakayiboleka kutsi asigibetise tsine siye esibhedlela kute lokunye lakangayitsatsa khona” (The difficulties I have faced, like now that schools are opened there is no money for us to go to the clinic, my grandmother needs to borrow the money from my aunts and uncles and she needs to pay it back, there is nowhere else she can get the money).

84 She was aware that her grandmother tried by any means to feed hand clothe her;

“Nasitsengelwa timphahla sitsengelwa nguGogo but nakhona kute ngeke vele sigcoke njengalalabanye bantfwana.” (When we receive the clothes that grandmother buys for us even then we cannot have the best of clothes, same as those for the other children).

Gogo Mathabela (G, 67 years of age, runs a market stall) also experienced challenges in caring for both granddaughters living with HIV while still providing for the rest of the family. She mentioned that while she was still employed, she did not have a lot of issues with money, but now that she had to source funds for transport fare for two granddaughters to the clinic every month it had become a source of concern. She described it as follows:

“But it was alright because I was working at that time, and I had some cash.

Even now, though I am retired, I am struggling for them. I sell fruits, chips and sweets at the school gate just to get money for their bus fare for them to go to the hospital at Dvokolwako Health Centre and also attend the support groups”

Although Gogo Mathabela was still struggling with the financial responsibilities related to caregiving, she also had elder children who were employed who tried to help her when she was in dire need.

“Nginabo bantfu mntfwanami lengiye ngicoce nabo. Ikakhulu lontfomabatane wakami noma esendzile anemuti wakhe uyasinaka kakhulu.

Kwakulukhunyana nje ngesikhatsi angekho asesikolweni ayofundza lekuboZambia. Hhayi yena ungetfwele” (I mainly talk to my daughter though. It was difficult for me when she was away in Zambia for school. She is the one who shares this load with me. She supports me emotionally and financially.

She has been there for me).

Sometimes the market stall at the school did not yield enough returns for Gogo Mathabela, and that contributed to her financial struggles. She indicated that times were tough when schools were closed for holidays because then the markets are

85 closed as well since her main customers are the school-going children. Through her struggles, family support came, albeit sporadically, but it momentarily bailed her out of the misery of financial scarcity.

“Ngalesinye sikhatsi mntfwanami, kubabete kubabete. Noma ngingenti kwayona lelencane imali…kepha ke ukhona lomfana wakami lolisotja uvele angibone bese unginika lemali atsi ‘make yabomshana lena yekugibela, angifuni uhlupheke’”. (Sometimes I do not make enough money...but my son, the one who is in the army gives me money and specify that ‘mother, this one is for bus fare for the nieces, I do not want you to struggle’).

The financial struggles that Gogo Mathabela experienced went beyond the provision of food and daily living expenses. She also struggled to finance her granddaughters’

education. The Government of Eswatini, under the Deputy Prime Minister’s office, offers educational financial aid for orphans and vulnerable children. To ensure continuity of this aid, beneficiaries are expected to pass. If students fail, like in Simile’s case, the financial aid is withdrawn, leading to misery and worry on the part of the grandmother.

“Ngike ngahlupheka yehhe ngalona lomdzala ngemali yakhe yesikolo.

Njngobe ngike ngasho, bayafeyila labantfu lesikolweni and kudzingeke kutsi aphindze liclassi katsatfu hulumende kelapho wangasabe ambhadalela.

Ngahlupheka ngemali yesikolo”. (I have struggled with the elder one’s school fees. As I have said before, they are failing at school, she had repeated a class three times and because of that, the government scholarship for orphans was withdrawn and I struggled to make ends meet and to pay for her schooling).

For this grandmother, caregiving in the face of HIV exposed her to financial difficulties since she had to make sure she had money available to send her granddaughters to the clinic once a month; something other caregivers were not experiencing. Even though she may not have had the constant means for survival, she wanted her granddaughters to diligently attend the clinic and support group meetings. Below is what she had to say:

86

“Angifuni balove ngisho kanye lekusupport group ngoba bayabafundzisa le.

Mmhh! Ngiyayiva kahle vele mine. Kusuke kusiphosiso nje nangabe ukhandza kutsi bayafundza ngabomgcibelo.” (I do not want them to miss these support groups because they teach them there, I like these support groups).

Lack of resources was a constant concern for both the grandmother and the female adolescent living with HIV. The next category presents the experiences of the female adolescent and grandmother relating to the physical effects of HIV and the resultant poor health status.

a.ii) Category 2: Experienced physical effects because of poor health status that was physically draining

The physical effects relating to living with HIV could be varied. Simile experienced poor health status prior to being formally diagnosed with HIV. The physical effects she experienced included constant coughing and weight loss. In Simile’s own words:

“Kuphila neligciwane emtimbeni wami ngingatsi ke kwangiphatsa kabi ngekutsi ngabese ngiyancipha emtimbeni kani bengitsandza lokuba sidudla.

Bengingasiso sidudla kahulu bengisidudla kona but hhayi kakhulu lelesinyanyekako sidudla mmhh, hhayi nyalo heyi angikutsandzi lelengingiko...” (Living with HIV in my body I can say it was something that did not treat me well because I lost a lot of weight, yet I liked my body. I was not too big, I was just fine, but now I do not like what I have become).

Significant weight loss is the first sign people notice in an individual living with HIV, thus weight loss established negative emotions in the female adolescent living with HIV. Even with treatment, Simile did not regain the weight she lost. She tried, by all means, to follow the eating plan as advised by the clinicians. She suspected the side effects of the medication led to continued weight loss, which made it difficult to have a positive body image. Below is what she said:

87

“Phindze kungaba kutsi ke lokunatsa emaphilisi ngulokunye lokungente ngancipha lamtimbeni nalokutsi angi angisadli lokunye lokunye kudla kufuneke ngidle kudla lokunemaseko lamatsatfu njengobe bangitjela esibhedlela mmhh, nekutsi akusafuneki ngidle kudla lokunemafutsa kakhulu bangitjela kanjalo.” (I can also say that taking the pills made me to continue losing weight because I do not eat any other foods that I have to eat, I have to eat a balanced diet as they told me in the hospital, and that I am not supposed to eat foods with too much fat, that is what they told me).

Loss of weight, as the first sign that people noticed and became aware of, placed the female adolescent in a difficult position. People asked Simile about it and the reason she gave equated to the disclosure of her HIV status.

“Nabomzala bami bayangibona lakhaya kutsi senginciphile bangibute kutsi ke ngi...yini lokudla kancane ngi slime lani angiyekele lentfo lengiyentako ngoma kuyanginciphisa bengikahle nje nangisidudla ngivele ngibahleke nje ngithule kani mine ngiyati langekhatsi kutsi ngiphila neligciwane. Ngeke ngize ngibatjele.” (Even my cousins can see that I have lost a lot of weight. They ask why I am dieting since I was fine, I just laugh at them and keep quiet because I know that I live with the virus. I will not tell them).

For Gogo Mathabela, caring for an HIV-infected child was physically draining. There was a lot of travelling and multitasking involved, coupled with the worry of survival.

She stated:

“Bengivukela eclinic njalo njalo mntfwanami, ngivuka lokwa ekuseni, ngicale ngipheke lasikolweni labengitoha khona bese ngiphutfuma esibhedlela.

Nangicedza nje ngijake emuva emabhodweni emsebentini. Bengifike ngimutsi dlimu kubabe wkami asaphila ngitsi akangibonele ngisabuyela emsebentini”.

(Indeed, I would go to the health centre time and time again, waking up early in the morning, start off with the cooking at the school where I was working, then rush with her to the hospital. As soon as we finish at the hospital, I would rush back to see to the pots at my work place. I would request my husband

88 when he was still alive to look after the sick granddaughter while I am work. It was a difficult time for me).

She also described the fatigue she experienced, both physically and emotionally, while providing care when her granddaughters were sick:

“Lokugula loku awukwati wena. Bengihlala ngidziniwe. Ngalelinye lilanga sahamba nalona lomncane sitfungatsa sibhedlela ngalaMbabane. Bengitsi ngeke ngibuye naye aphila”. (This sickness, you have no idea. I was always tired. One time, I travelled with the younger granddaughter in search for a certain hospital in Mbabane. I thought at that time that I will not come back with her alive from Mbabane).

The physical effect of HIV that was evident for Simile was weight loss, which contributed to poor self-image as well as attracting questions and comments from people. The grandmother experienced extreme fatigue related to multiple hospital visits while still holding employment as a cook in the local hospital.

a.iii) Category 3: Experienced side effects of medication for HIV

The physical effects of HIV medication were often unpleasant and hard to deal with.

Simile described it as follows:

“Angati kutsi angenta njani ngitsi nangiwanatsa entsambama ngiphatfwa siyeti mmhh, ngiphatfwa siyeti nangiwanatsa angati kutsi kwentiwa yini.” (I do not know what they do, after taking them in the evening, I feel dizzy mmhh I feel dizzy after taking them I do not know why).

She had experienced the side effects often and, as such, had even developed intervention plans. She said:

“Nangicedza kuwanatsa lamaphilisi kufuneka lokudla ngikutfole ngaleso sikhatsi sitawuphela hhayi ku kutsi kutawuphela emaminitsi solo kute kudla bese vele lesiyeti sibakhona sibe sinyenti kahulu futsi mm”. (After taking the

89 pills, I have to find something to eat at that time and it will subside otherwise it becomes too much).

b) Theme 2: Experienced support system

This theme focuses on the external support or lack thereof for Simile and Gogo Mathabela from the clinical staff, family and community, as well as the Higher Power.

It thus focuses on the social impact of living with HIV and caregiving in the face of HIV.

b.i) Category 1: Experienced clinical support through nurse-patient relationship

The main support system offered by the clinic is the Teen Club. The Teen Clubs in the clinical area had become a safe haven for Simile and other children and adolescents living with HIV. She described the Teen Club as a ‘free zone’ where no one looks down on another because everyone is HIV positive. The Teen Clubs were led by HIV counsellors who may or may not be living with HIV. Simile attested to the good work done by the “Aunties” (nurses) as they are affectionately called, who were in charge of the Teen Clubs.

“Phindze kulama teen clubs kukahle ngekutsi labo-Anti bayasifundzisa vele kutsi kumele singacwayani ngoba sonkhe siyafanana singumuntfu munye ngalokugula kwetfu lesinako” (In the Teen Clubs it is ok because the Aunties teach us that we should not discriminate on each other because we are all the same in terms of our sickness).

“Sidlale imidlalo sibuye sikahle emakhaya nalokutsi nje bayasikhona…bayakhona kusentela emaChristmas party sikhone kujabula natsi njengalabanye bantfwana”. (Sometimes we play at the clinic and then we go back home feeling good. They are able to host Christmas parties for us and we are happy just like other children).

90 Gogo Mathabela experienced support from clinic staff in the sense that they all did their best when her granddaughters were still very sick. At one point she had to travel greater distances in search for the best health care for her grandchildren:

“Chake ke batsi bona kaManzini sikhona lesibhedlela ngabe uyekhona, ngatsi angisati bangilayele lesi. Awu kodvwa bangisita kakhulu, wabuya nje wacina waphila” (they told me that there is another hospital in Manzini I should have attended there. But they assisted me a great deal, she came back and recovered).

Gogo Mathabela believed in the support groups that the female adolescents attended at the clinic because she was aware that there was a curriculum on HIV being taught to the adolescents living with HIV. Therefore, she did not wish for her granddaughter to miss those sessions.

“Ngidayisa lapha esikolweni amafruits, amachips loku nemaswidi kutsi mane ngakhe imali yekubagibelisa baye lekaDvokolwako kulamasupport groups.

Angifuni balove vele” (I sell fruits, chips and sweets at the school gate just to get money for their bus fare for them to go to the hospital at Dvokolwako Health Centre and also attend the support groups. I do not want them to miss these support groups because they teach them there).

b.ii) Category 2: Experienced grandmother-granddaughter relationship that provided communication and emotional support

In Simile’s case, the main structure of family support was her grandmother. She reported all her concerns to her; even though her grandmother sometimes did not have the answers, she still felt lighter after she had expressed things to her.

“Watsi ke Gogo ke angithule, ngibothula manje vele sengifundzile ngiyathula kani kucala benginangu, bengikhala kakhulu vele” (My grandmother said I should just keep quiet, I have learned to keep quiet. Yet at first I would cry, cry).

91 Family support was not fully available to Simile. She still carried most of the household chores alone, something that made her teary. She did not know why this happened, but she was aware that the other children her age knew that she did not belong to the family. Yet, through all this, she received support from her grandmother.

“Manje mine bese ngiva buhlungu kutsi mine ngatsi sengisigcila nje lakhaya (cries) konkhe kwentiwa ngimi, bantfu bangena ngekudla kuphela nje. manje utsi Gogo asithule nje ngoba vele akusiko ekhaya kitsi kute lesingakusho” (I feel hurt that people make me feel like a servant here in this home [cries]. I do everything, people only come to eat. My grandmother said I should not

“Manje mine bese ngiva buhlungu kutsi mine ngatsi sengisigcila nje lakhaya (cries) konkhe kwentiwa ngimi, bantfu bangena ngekudla kuphela nje. manje utsi Gogo asithule nje ngoba vele akusiko ekhaya kitsi kute lesingakusho” (I feel hurt that people make me feel like a servant here in this home [cries]. I do everything, people only come to eat. My grandmother said I should not