Case Study 11: Vhutshilo Mountain School (2011) by The Power Is In People

Case Study Number 11

Vhutshilo Mountain School

A social study of a rural paediatric antiretroviral program in South Africa www.oxfam.org.au

Credits Title: Published: Author: Editor:

Vhutshilo Mountain School: A social study of a rural paediatric antiretroviral program in South Africa June 2011 Dr Patricia C. Henderson Yves Vanderhaeghen

Photos:

Gcina Ndwalane

Design:

LUMO design & illustration (www.lumo.co.za)

Oxfam Australia gives permission for excerpts from this book to be photocopied or reproduced provided that the source is properly and clearly acknowledged.

Disclaimer:

The views in this publication are those of the respective authors and do not necessarily represent those of Oxfam Australia or any funding agency. The interview and review process was participatory and consent around content and inclusion of personal information was given to Oxfam by interviewees.

Contact Details:

Oxfam County Office in South Africa Oxfam House, 56 Clark Road, Glenwood, Durban, 4001, South Africa Tel: +27 (0) 31 201 0865 Email: infosouthafrica@oxfam.org.au Oxfam Australia 132 Leicester Street, Carlton VIC 3053, Australia Tel: +61 3 9289 9444 Email: enquire@oxfam.org.au / Web: www.oxfam.org.au Vhutshilo Mountain School Vhutshilo Mountain School, Tshikombani, Sibasa, Limpopo, South Africa P.O. Box 737, Sibasa, Limpopo, South Africa, 0970 Tel: +27 15 973 0284 Email: vhutshiloschool@yahoo.com / Web: www.hopeforlimpopo.org/school Dr Patricia C. Henderson Senior Lecturer, Department of Social Anthropology and Chief Research Officer, The Childrenâ&#x20AC;&#x2122;s Institute, University of Cape P.O. Box Rondebosch, 7701, Cape Town, South Africa Tel: + 27 (0)21 650 3682 or Tel: +27 (0)21 689 5404 Email address: patti.henderson@uct.ac.za

Contents 4

1. Introduction

2. Research methods and ethics

3. Development of the program

4. Program structure

5. Training children on ARV treatment

6. The children’s focus group discussions

7. Mukona’s story: Developing drug resistance in the context of fraught relations of care

8. Wanga’s story: A mother’s and daughter’s struggle for survival

9. Vhuhwavho’s story: Developing confidence and becoming a child advocate

10. Livhuwani Masindi: Observations of an outreach officer

11. Conclusion: Challenges and strengths

12. Appendix I: Literature Review

13. References

Acronym List AIDS

Acquired Immunodeficiency Syndrome

ARV

Antiretroviral

CD4

Cluster of differentiation

DOT

Direct Observed Therapy

HIV

Human Immunodeficiency Virus

NGO

Non-governmental organisation

TB TVEP

Tuberculosis Thohoyandou Victim Empowerment Program

ANC

African National Congress, the governing party in the South African Government

OVC

Orphans and vulnerable children 1

We, we are entering, we children of Vhutshilo, of Life, we little children Rine ri a dzhena ri vhana vha Vhutshilo. Ri vhana vhatuku A children’s song sung by the children of Vhutshilo Mountain School, during a break in the school day. The children danced with one arm raised to the beat of locally crafted drums played by their teachers as they sang. “Vhutshilo has helped a lot. Without Vhutshilo my daughter and I would no longer be here. Vhutshilo has helped a great deal. It is a little community helping people to stay alive and giving them hope” (Wanga: Interview July 2010).

1. Introduction This report is a short case study of the social aspects of a paediatric

the themes emerging from the case study: adherence to paediatric

antiretroviral (ARV) program run from Vhutshilo Mountain School

ARVs among children, the influence of social relations on adherence

in the village of Tshikombani, Limpopo Province, South Africa.1 The

to drug regimens and children’s and adults’ relationship with stigma

project assists 31 children between the ages of three and 16 years,

and silence in the face of HIV and AIDS.

29 of whom are on ARV medication. What is written below is a means of making visible the contributions of social groupings and individuals, who together provide strands of support for children living with HIV. The project is made up of the children, a Program Director and her assistant, an adult support group of women living with HIV (some of whose members contribute to the support of children in the project), a caregivers’ support group, an outreach officer, and teachers, cooks and gardeners at the school. Research for the case study is largely based on two short visits I undertook to Tshikombani facilitated by Oxfam – a two-day visit in 2009, and a five-day visit in July 2010. In it, I describe the history of the program – day-to-day activities within it, social stigma in relation to HIV and AIDS and secrecy as expressed in children’s dramatic improvisations, as recurring “vectors” in everyday life in Tshikombani that interweave with children’s and adults’ experiences of living with or alongside HIV and AIDS. The case study ends with individual stories exploring drug-resistant tuberculosis, the emergence of child advocates within the program, the strength derived from the program on the part of a mother and her daughter, and the outreach officer’s observations during her frequent visits to the children’s homes. I conclude by exploring the strengths of the Vhutshilo Mountain School program and suggest reasons for the high level of adherence to drug regimens by the children who are supported by it, many of whom have been taking ARVs since 2005. A unique aspect of the program is how it empowers children to take responsibility for measuring and taking their own medication without relying on adults to remind them of when to take their medication or when to visit the local hospital to obtain their drugs. An appendix at the end of the study provides a literature review, exploring some of

1.1 Setting the scene: geographical, social and economic factors in Tshikombani A short drive from the small town of Makhado (formerly Louis Trichardt) in Limpopo, one enters a verdant, subtropical region of towering pine, eucalyptus, nut, mango and avocado groves. Systematic plantings indicate the often extensive landholdings of commercial farms, many owned by the descendents of pioneers who settled in the region in the late 19th century. A few agricultural companies own extensive forestry reserves. There are also the landholdings of a local tea estate. In communal land tenure areas, situated in increasingly hilly country, numerous dwellings and large brick houses begin to emerge, their neat home gardens dotted with fruit-bearing trees. Maize fields, lying dormant in winter, become visible on the spread-out valley floors. Under apartheid, the latter areas were part of the “homeland” of Venda, one of the many “Bantustans” in which the majority of African South Africans were expected to claim citizenship – their relationship with so-called “white South Africa” regarded as tenuous and temporary. Like similar regions, Tshikombani and its surrounds have long been dependent for survival on remittances sent by migrant workers who found employment in the industrial heartlands of the country, in particular Johannesburg (Gauteng province), and in more recent years, in burgeoning neighbouring towns. Increasingly, the poorest members of the region form an underclass dependent on state grants, including old-age pensions, child foster grants, child

I am grateful for the support Oxfam in contracting me to conduct the research on which the report is based.

support grants and disability grants. It is a region predominantly

the antiretroviral program at Vhutshilo Mountain School, apart from a

occupied by women and children, older men and unemployed youth.

few mothers living with HIV, are maternal grandmothers and mothers’ sisters, most of whom are unemployed. The majority of grandmothers’

Despite the establishment of a democratic South African state in

own children are deceased and they depend for their survival on state

1994 and its commitment to reverse the inequities of the past, rural

pensions and other social grants. Vhutshilo Mountain School has

municipalities throughout the country have had varying success in

played a major role in sustaining the livelihoods of such families, in

improving infrastructure and providing social services. Over the last

facilitating their dealings with interminable bureaucratic procedures as

two years, certain forms of development in the villages surrounding

they attempt to secure a variety of state grants. On my recent visit to the

Tshikombani are evident. In 1998, Eskom, a parastatal entity

school, 14 foster grants had just been granted to the caregivers of some

providing electricity, began installing electricity here for the first

of the children in the program through facilitation offered by the program.

time – a project that was still underway when I first visited the school in 2009, by which time most homesteads had become electrified.

It is bitterly ironic that with the inauguration of a South African state

Water is much less readily available. At times, intermittent community

with which for the first time most South Africans could identify, HIV

taps yield only a trickle of water. It is not an uncommon sight to see

and AIDS increasingly made their presence felt, resulting in the death

older women and girls balancing large plastic water containers on

of thousands of South Africans – many in their prime, as working

their heads, walking down paths from their homesteads in search

adults. Despite government programs to prevent the virus from

of a sometimes distant water source. Vhutshilo Mountain School

passing from mothers to their children during birth, initially through

is fortunate to have its own borehole, which supplies water for the

issuing the antiretroviral (ARV) Nevirapine, some children became

72 children who in July 2010 attended it, as well as irrigation for its

infected because their mothers did not always take the medication

impressive vegetable garden. The school has made an outside tap

prescribed. Others gave birth to their children, sometimes at home,

available for use by its neighbours.

without knowing that they themselves were infected.

Noticeably substantial homes have been built by a growing

South Africa’s national paediatric antiretroviral program is the

middle class largely employed as civil servants by municipal and

largest in the world (Davis et al 2009, p.730). Davis et al, drawing

governmental departments in Thohoyandou, the old homeland capital,

on analyses of the World Health Organization (WHO) and the South

and in Polokwane, the capital city of Limpopo. The houses belong to

African National Department of Health, write that at the end of 2007

teachers, nurses, doctors, a garage owner, police officers, and a long-

there were 32,000 children under 15 years old on treatment, less than

distance taxi owner who ferries passengers to and from their rural

half of the children estimated to require it, according to South African

homes to cities and back again.

national guidelines. In 2008, there were more than 57,000 children receiving ARV treatment, constituting a coverage of approximately

Many poorer families have members who work in Polokwane. The

61% of the number of children requiring treatment (Eley 2010, p.41).

town has expanded greatly in recent years, drawing migrants looking

In 2009, there were 5.21 million people living with HIV in South Africa,

for employment. The majority of guardians of the children involved in

280,000 of them children under 15 (Eley 2010, p.41).

2. Research methods and ethics

The following methods were used in producing data for analysis in

Because I had a short time in which to do the primary research, I

the report: open-ended, unstructured interviews – a few conducted

did not have a long period in which to develop trust with the children

telephonically and most face-to-face – were carried out with a number

involved in the program. Following Chesner’s view that “games

of people to gather narratives around the history of the program,

dramatised or enacted are central to the life of young children”, and

and the individual experience of adults and a few children involved

hence are a comfortable and familiar space in which children may

in it. The list of people whom I interviewed, sometimes on several

express themselves (Chesner 1994, p.5), I used theatre improvisatory

occasions, is: the Program Director, her assistant, two women

and participatory techniques in interacting with the children that

who maintain the school vegetable garden, the school’s principal

were enjoyable for all. Improvisation enabled children to act out their

cook (who also sells used clothing from the school premises to the

experience of living with HIV in Tshikombani. This method produced

community to earn money), two women involved in the adult HIV

four short improvised plays, all of which demonstrated the importance

support group who also have children who are members of the

of social dimensions affecting children with HIV and their adherence, or

paediatric ARV program, the outreach officer who visits children in

lack thereof, to prescribed medicinal regimens. In particular, social stigma

their homes at least once a month, and two children from the ARV

emerged in the children’s plays as a painful aspect of their everyday

program. I engaged in casual conversations with the teachers at the

experience, and suggested that while they may have felt at ease within

school during school breaks.

the program, this did not necessarily extend to their lives within the

community at large. Themes for the plays were chosen by the small groups of children creating them and not by myself, the facilitator. On my first visit to Vhutshilo Mountain School in 2009, I also conducted a focus group discussion with all the children involved in the ARV program. Questions put to them revolved around their knowledge of HIV and AIDS and their medication, aspects of the ARV program that they enjoyed and others that they disliked, as well as how relationships with adults mediated their experience of living with HIV and their adherence to treatment regimens. I visited the homesteads of four children involved in the ARV program in order to have conversations with their guardians and to gain an impression of caregivers’ perceptions of the program. These visits taught me about local etiquette between children and adults and in particular the marked forms of embodied respect children were expected to demonstrate to adults.

“there were 32,000 children under 15 years old on treatment, less than half of the children estimated to require it”

In addition to these methods, I also used participant observational

their identities further. On my first visit to the school, signed consent

techniques by taking part in and watching activities as they unfolded

forms were used with all participants stating that individuals were

at the school. I attempted a visit to the ARV clinic at Siloam Hospital,

free to choose not to answer questions or to withdraw their participation

a rural state hospital, to speak with a popular nursing sister, but

from the study if at any time they wished to do so. On my second

because of the long queue of people waiting for her attention (over 60

visit to the school in 2010, the children in the program remembered

in number) this proved unachievable.

me, and Sue-Anne and Khathu had already negotiated consent with all participants prior to my arrival. Children, as well as adults involved in

In the report, I have used the actual names of the Program

the program gave their ongoing verbal consent to conversations with

Director and her Chief Assistant, as Sue-Anne Cook and Khathu

myself and also to being photographed by a photographer. In addition to

Nemafhohoni are already well known beyond the community in which

face-to-face encounters and interviews with participants, I have watched

they work. I have also used the real name of Sue-Anne’s foster

several DVDs on the school, one recording the teaching style of a

daughter, Vhuwhavho, who is a known child activist in the region. I

nursing sister in educating the children in the program about the technical

have however, used pseudonyms for all the other children and for the

aspects of measuring their medication, testing their abilities to tell the

other adults referred to in the report. Where necessary, I have slightly

time, and determining their general knowledge about HIV and AIDS.

altered details of their circumstances and struggles in order to protect

I have also consulted the school website on which newsletters are posted concerning ongoing developments within the program. 7

3. Development of the program Vhutshilo Mountain School and its paediatric ARV program developed

The paediatric ARV program for children living with HIV children

organically from the initial commitment of its Program Director, Sue-Anne

run from Vhutshilo Mountain School grew out of a increasing

Cook. More specifically, new initiatives have suggested themselves

need to support children who required ARV treatment. The idea of

as problems and challenges have arisen in working with children living

“empowering” children to take control of their own medication began

with HIV. In Sue-Anne’s words, “The work has shown us where to go

when the Program Director realised that if her own foster child,

next. We are living at a grassroots level where we work out things as

Vhuwhavho, could be responsible for taking her medication, so could

we go along.” In 2002, Sue-Anne began a preschool for the children

other children. Vhuwhavho began taking ARVs in 2004 when she was

of civil servants who worked for the department of forestry around the

four years old. She obtained the medication a few months before the

mobile home in which she lived in the Thathe Forest Reserve. She

state rollout through the sponsorship of an individual from Scotland.

became aware of a growing number of children who had lost one or

As Vhuwhavho stayed with her grandmother from time to time on

both parents to AIDS, and who were predominantly cared for by their

weekends, her foster mother was worried that she would forget to

maternal grandmothers. A preschool was established at her “modified”

take her medication during such visits. It therefore became imperative

mobile home, from which she provided transport, a basic education,

to teach Vhuwhavho to manage her own drug intake. Once she had

two daily meals and clothing for children. Through a protracted process

learned to manage her daily medication on her own, a doctor invited

of negotiations with the local traditional authorities, a piece of land was

her to the AIDS clinic at Siloam Hospital to talk with specific children

secured next to a stadium on the main road to Thohoyandou (a few

who were having difficulties in taking their medication. Her message

kilometres from the local hospital and AIDS clinic). In 2005, a relationship

to other children was simple and to the point: “Take these meds and

with the Greenock and Gourock Presbytaries of the Church of Scotland

soon you will play soccer again”, or “Don’t take them and you will

in the United Kingdom led to a sufficiently large monetary donation to

spend time sick in hospital and you will probably die.” Her own healthy

build a small school of two classrooms on the present site. The school

appearance and the fact that she took ARVs was an encouragement

has expanded from a preschool, to teaching pupils until the completion

to the children. From these beginnings, Vhutshilo Mountain School

of Grade 3, and although it remains unregistered with the department

developed a reputation for assisting children living with HIV from

of education, has a good reputation, as many professionals pay fees

Tshikomabani and the surrounding villages of Khalavha, Fondwe,

of R400 a month to send their children to it.2 According to the school’s

Tshirenzheni, Mudunungu, Siloam and Phadzima.

constitution only 30% of children admitted to the school may come from families able to pay the fairly high local fees. Increasingly the school is

Lack of adherence to medication, however, persisted in some cases

forced to turn away large numbers of applicants. This is evidence of the

and was due to several complex and not easily resolved reasons,

way in which the stigma associated with HIV and AIDS is being dispelled

some of which are expanded upon below and some of which mirror

in relation to the school. Three qualified teachers have been hired over

factors reiterated in the literature review. Sue-Anne and Khathu,

the past six years: the headmistress, who teaches the Grade 2 and

together with nursing sisters, nutritionists and social workers from

Grade 3 pupils, a teacher for the Grade R and Grade 1 classes, and a

Siloam Hospital, developed an approach to train children to take

preschool teacher for the younger children.

responsibility for taking their own medication – a radical innovation if

The school requires R8000 to purchase a stand number from the municipality before they can register as an official school. At present they do not have the means to do so.

we compare the program with those reflected in the literature review.

sense of their own efficacy. This aim is well expressed in Sue-Anne’s

Given the fact that adults often forgot to remind children to take their

remarks about Vhuwhavho: “She is responsible for taking her meds.

medication, and that many children move between caregivers over

She knows she cannot rely on me to give them to her, because I have

time, it was imperative that they learn responsibility for their treatment

lots of different things I have to do. She knows that when she hears

regimens. Such training also underpinned a broader aim to assist

the seven o’clock news in the morning and in the evening she will

the children to live their lives with hope and determination, and with a

take her meds on her own.’’ (Interview: Sue-Anne Cook, 2009).

“Once she had learned to manage her daily medication on her own, a doctor invited her to the AIDS clinic at Siloam Hospital to talk with specific children who were having difficulties in taking their medication.”

4. Program structure The paediatric ARV program at Vhutshilo Mountain School consists

4. Seven of the youngest children in the program are accompanied once a

of several “threads” of social relationship, each of which augments

month by an enthusiastic member of the women’s support group

the others. It is precisely the interweaving of aspects of the program

to Siloam Hospital to have their medication reissued and for individual

that in my view makes it successful. The social threads, or conduits of

consultations with a doctor. Food, games and drawing equipment are

relationship, comprise specific sorts of activities undertaken by groups

taken by the children to the hospital to sit out the inevitably prolonged wait

of people. They are outlined below:

before being attended to. Transport costs are met by Vhutshilo Mountain School until relevant social grants are accessed.

1. Thirty-one children, 29 of whom are on ARV treatment, meet four times a year at the school to learn about living with HIV and AIDS,

5. A flourishing vegetable garden at the school provides work for two

their medication, the importance of adherence and increasingly to

women, one of whom is a member of the women’s support group.

enjoy themselves with other activities.

The garden supplies food for the children of the school, who are served breakfast and lunch every day, as well as food parcels

2. Visits to each of the above children’s homes are carried out by

twice a month for children in the ARV program and for the women’s

an outreach officer. The children receive at least one visit a month,

support group members.

and sometimes up to three if a particular child is in any difficulties. Home visits build relationships with the children’s families and with

6. A few children, who have long been involved in the program, are

each child, and on a more pedestrian yet vital level, assist in

slowly becoming advocates for adherence to treatment regimens.

checking whether medicine is being taken correctly and

They also offer hope and emotional support to their peers. It is

replaced timeously.

of the utmost importance that children from the program itself are becoming advocates for living a full life on ARV treatment.

3. A support group for women living with HIV from surrounding villages convenes at the school. (There were 16 members of the

7. Separate meetings for caregivers of the children are set up in

group in 2009 and 18 in 2010.) Some of the women involved have

which they learn about other people who are experiencing similar

children who are part of the children’s ARV program. It is often

problems, and in which they share their fears. Given specific

women from the support group who bring children suffering from

cultural influences within Venda, and indeed many other areas in

the same affliction into the program, while other children are

the country, sharing is extremely important, as there is often

referred through the hospital and through word-of-mouth. One of

reticence in speaking openly about the disease, even within family

the women’s support group members died recently. She had gone

groupings, because of the shame and stigma attached to it, and

to Johannesburg to look for her husband to secure maintenance

to any open discussion about sexual matters. This is particularly

for her children. She was afraid to inform her husband about

because of the way in which sexuality and the fear of death

her illness and therefore defaulted on taking her medication. Her

become conjoined in perceptions of AIDS.

story underscores the contribution of social conditions, gendered

hierarchies, and differential social power in affecting people’s

8. The school, in addition to involving children and adults from the

adherence to medication.

region, also receives support from various outside organisations

and individuals. These include Oxfam, which provides financial

program, but refer children living with HIV to the program, because

support for the running of the ARV outreach program. Members

they have come to appreciate its thoroughness in addressing some

of the relevant Presbyteries of the Church of Scotland individually

of the needs of these children, and in particular, in impressing upon

sponsor 23 of the children, and pay their school fees. They also

children the importance of discipline in taking ARV medication. It is

provide intermittent monies for the school and more regularly

not unusual in South Africa for non-government organisations

large bales of used clothing. Some clothing is distributed among

(NGOs) to augment the work of state institutions and to form

the children at the school, the support group women, and the

cooperative links with one another. The Thohoyandou Victim

needier families in the outreach program. The excess is sold

Empowerment Program (TVEP), an NGO, funded the first ARV

to community members at a low price, to generate income for

workshop for the children at the school. Vhutshilo Mountain School

the school. A retired architect has offered his services to design the

often draws on TVEP for legal assistance.

schoolâ&#x20AC;&#x2122;s classrooms and provide technical advice. The department of agriculture, impressed with the school garden, has recently

In June 2009, there were 21 children involved in the paediatric ARV

made contact with the program and provides technical assistance

program at Vhutshilo Mountain School. In July 2010, when I visited

and advice. The school has developed a good relationship with

the school for a second time, there were 31, two of whom were not yet

doctors, sisters, nutritionists and social workers at Siloam Hospital,

ready to begin ARV treatment. The following table records the number

who not only attend to the medical needs of the children in the

of children and their ages in the ARV program as of July 2010.

Table 1: Numbers and ages of children in Vhutshilo Mountain School ARV Program, July 2010.

10 11 Years

16 11

Children who are younger than eight years old are taught how to measure ARV syrups, as are those who are older, but who are underweight. Eight-year-old children whose weight is acceptable take their medication in pill form. Most of the children in the program began taking ARV medication in 2005. To date, only one of the children has developed drug resistance to their initial medication, and is now on a different regimen. There is a possibility that one other child has developed drug resistance to one of the drugs comprising his regimen. He is extremely thin, and his CD4 count has recently dropped to 26. At the time of writing the report, he was taken to Coronation Hospital in Johannesburg for treatment. Usually, if a child stops taking medication twice, doctors refuse to continue providing ARV treatment. In several cases where this has happened the school has persuaded doctors to continue issuing the medication with the promise of ensuring the child’s adherence.

4.1 Exploring predominant themes emerging from the research: secrecy, stigma and taboo and reasons for the suspension of medication In many instances, caregivers of the children attending the ARV program at Vhutshilo Mountain School have numerous children to look after, and it may become difficult to be attentive to all the children in their care. Not surprisingly, in the initial stages of the program, grandmothers and caregivers often had explanations for why a child was ill that were based on local understandings of health, illness and wellbeing. It is well known that across all groups in South Africa the pursuit of good health involves a range of healing frameworks including biomedicine, “traditional” and “alternative” medicine, as well as religious and other rituals. People often use various healing frameworks in tandem, and may even oscillate between frameworks

that for various reasons they deem incompatible. As ill-health in most of southern Africa is understood not only as describing a state of being free from physical ill-health, but also from social distress and rancour, bewitchment may be one of the explanations people give to why an individual has contracted HIV or AIDS (Henderson 2004, Ashforth 2007, Niehaus 2001). The presence of HIV and AIDS among co-resident and dispersed families not only affects the physical health of the individual concerned, but often has the effect of wearing thin social relationships within family groupings (Henderson 2004). Secrecy, stigma and taboo, as well as hierarchical gender configurations in which power is differentially invested, have much to do with the creation of social difficulties around the

“Silence, therefore, has resulted in some children in Tshikombani and surrounding villages stopping their ARV medication as soon as they feel well, because their guardians have told them that their illness is a temporary condition”

illness. Displays of respect between generations and genders often reflect

around the disease. Some of these are explored below. Often older

cultural norms, and can take the form of different kinds of avoidance,

people keep the knowledge that a child has the disease from the child

reflected in bodily comportment and styles of speech.

concerned. This is done with the aim of protecting the child from what is deemed burdensome knowledge. The idea is that in remaining silent

In July 2010, a song sung by children attending the Vhutshilo

about the real cause of the child’s illness, the child will be able to live as

Mountain School, during their 11 o’clock break, and accompanied by

if they are an “ordinary” child. This results in particular complications,

a dance, implicitly celebrated respect by children of old people. The

where children do not understand why they have to keep on taking

words of the song are: “Walking with a stick (a reference to an old

medicine, even when they feel well and have regained weight.

person walking bent over with a walking stick). You are not trying to

Silence, therefore, has resulted in some children in Tshikombani and

show off. I’ve seen my aunt [walking with a stick].” “U tshimila nga

surrounding villages stopping their ARV medication as soon as they

makombodo, a si u tonga ndo vhona nga makhadzi wanga.”

feel well, because their guardians have told them that their illness is a temporary condition, as opposed to the chronic condition of living

Certain subjects become taboo in everyday speech. These include

with HIV and AIDS.3 Because of taboos around speaking of sexuality

speaking openly about illness, especially when it is linked to moral

between proximal generations, people of different ages feel extremely

judgements around sexuality (see also Sontag 2002). It is not uncommon

shy in speaking about sexuality with one another, and also of HIV and

in the region to associate open discussions around HIV and AIDS with

AIDS, because of its association with stigmatised unbounded sexuality.

attracting the illness (see also Henderson, unpublished manuscript).

Some of these complexities are captured in interviews with Sue-Anne Cook and Khathu Nemafhohoni, one in 2009 and one in 2010. They

Taboos around overt speech about HIV and AIDS, the shame attached

also, in contrast, refer to an atmosphere of openness that has been

to it, as well as local conceptions of childhood and children’s position

painstakingly created at the school between the children themselves

within social hierarchies, conjoin to create different forms of silence

and between children and adults at the school:

In many African languages in southern Africa, a general category of illness associated with coughing implies an ordinary and not particularly serious illness that may be cured through herbal

medicines and that is not associated with malevolent intent.

“There is a lot of stigma around people and children having HIV.

on the medication, how well they look, and how strong they are.

Sometimes when grandmothers already know that their grandchildren

The children in the school are open about their illness. They say, for

are HIV positive they do not tell them. There is often a barrier between

example, ‘I have to go for my HIV medicine.’ Children from the school

the grandmothers and the children, because even if the children

talk openly at the school. When they leave the school and go on to

know they have the disease, the grandmothers will sometimes deny

other schools they are still part of our outreach program, so that we

it. You have to try to persuade the children not to stop taking their

don’t lose touch. Most people are now continuing with the meds.

medication, because if they do, they will die. Some grannies try to get children to stop taking their medication because they believe more in

“At home children don’t have much of a say. Children are more

traditional medicines. We have to deal with these kinds of problems

accepting of this fact within their families. They know of the problems

through example, through showing the effects of children remaining

families are facing and they do not challenge their caregivers easily. But with our support the group is becoming more confident.

“Children have little space to express what they feel about death. It is very difficult to get people to speak of it. The death issue is skirted. Death has become so common, though, that one does not see people grieving openly. People expect children to be stoic about it. There is very little feedback from the children as to how they might experience death or how they might feel” (Sue-Anne Cook: Interview 2009). “Stigma is a very big issue and people try to hide the fact that their relatives are ill. This creates difficulties in taking your medication because sometimes you have to hide it from your family. Adults who are on the medicines try to hide this fact from their spouses. Kids won’t let other siblings know about the meds … More recently, I thought the women in the support group were ready to talk openly in public. I organised an appearance for some of them on a TV program, but they refused to go on it. They were afraid of the reaction of their spouses if they spoke publicly. Some of them had not disclosed to their partners, and they were also often dependent on them for financial support” (Sue-Anne Cook and Khathu Nemafhohoni: Interview 2010). “People are afraid of how others will treat their children if other children get to know their status. One child who lives at the nearby orphanage, and who had been on ARV treatment for over a year, when asked what she would do if an HIV positive child approached her, said that she would not talk to the child and would not sit next to them or play with them. She did not know that she herself was HIV positive. People at the orphanage had not told her. We, together with people there and an AIDS counsellor, were asked to tell her. Having heard of her status, she cried for a long time. She has been coming to the quarterly children’s ARV workshops and is doing very well so far.

“They are not ashamed to tell their peers at various schools that they are going to an ARV workshop. If they go to a new school they will tell the children and teachers about their status.” “The quarterly workshops have led to children forming their own support group, if you like. It is most important for them to know that they are HIV positive. Now they have a place to talk about HIV and are not just told to take their meds. They know so much about it now that they are bored. They are not ashamed to tell their peers at various schools that they are going to an ARV workshop. If they go to a new school they will tell the children and teachers about their status. They are not afraid to tell teachers that they need a day off to go and fetch their meds. They take their medicines with them on school trips. Children would sometimes leave them at home before, because they did not want teachers or pupils to see that they took ARV medication. One child who had to go to hospital for an operation openly displayed her medication on the window sill. Nurses at the hospital could not believe that the child was not afraid to display her ARVs. Children come running to the school and are not afraid to be seen doing so. Bigger children look after the little ones. The children have developed confidence” (Sue-Anne Cook and Khathu Nemafhohoni: Interview 2010).

She is looking after herself and now knows that she is not alone.4

At the time of writing the report, an orphanage in Tshikombani to which children were referred by social workers had 41 children living there. One of the children in the Vhutshilo Mountain

School ARV program chose to live in the orphanage because of often violent conflicts with her family.

5. Training children on ARV treatment When I visited Vhutshilo Mountain School in 2009, Khathu showed

The sister then asked the children how they knew when they had to go to

me a DVD of an ARV workshop that recorded the style of teaching

their next appointment at the hospital. They replied that this was written

of a trained nursing sister with the children in the ARV program.

on their clinic cards. The children also spoke about the importance

Her teaching style was conventional, but kind. Children learned to

of eating “yellow, green and red foods” and named vegetables in the

tell the time by drawing on a cardboard clock the times they took

different colours. The sister concluded the workshop by impressing

their medicine everyday. They were also involved in measuring

upon the children how important it was not to stop taking one’s ARV

their syrups, and were asked various questions by the nurse, and

medication and that if one did, one would have to start another drug

individuals would answer her shyly. Whenever a child answered

regimen. “The virus will wake up and make you sick. If you do not

correctly, or measured correctly, the nursing sister orchestrated

take the treatment, you will die,” she said. Commenting on the degree

applause for the child by telling them that they had done well

to which aspects of training in the program were of necessity directed

and by inviting other children to clap for the particular child. The

by adults, Sue-Anne said: “We have an outreach coordinator who trains

DVD depicted a three-day workshop in which children between

the children. The children have memory books and play various board

four and 14 took part. Throughout the activities, the nursing

games in which they participate. And then of course the emphasis is on

sister punctuated her teaching with certain remarks: “Correct

the children learning how to identify and take their own medicines. These

measurements are very important”; “You must store your medicine

activities are participatory to an extent. We come up with them really and

in a cool place away from the sun”; “You must measure your syrup

direct them if you like because they seem of such importance. We do not

very carefully”; “If you are sick you must rush to the hospital”; and

get many ideas directly from the children themselves. They are not very

“Eat before you take the medication.”

forthright with suggestions because of the ways in which they have been socialised to listen to adults” (Sue-Anne Cook: Telephonic interview 2009).

5.1 Children’s plays: the theme of social stigma

Over the two visits to Tshikombani, I watched four short improvised plays created by the children at the school on the broad theme of their

When I first visited the children in 2009, I began the day’s proceedings

illness. The first two were facilitated by myself when I first met the group

by playing a few theatre games with them. It became apparent to me that

in 2009.The second set of plays was created by the children without

they were extremely subdued, although once they began to enact made-up

facilitation at a quarterly workshop that I attended in 2010. The plays

scenarios they became lively. I was not sure whether this reticence was due

depicted prejudice against people living with HIV and the perception of

to particular kinds of muted cultural comportment in the area, and/or the

not always being supported by friends or grandparents. The loneliness

fact that children were ill and on powerful medication, and that I was a

of children living with HIV was conveyed, as well as a sense of their

stranger to them. What emerged most strongly during the course of the day

being scrutinised by others and being treated badly through harsh

was a sense in which children, who were all living with HIV, felt discriminated

language and pernicious gossip. There was also the issue of how

against in their broader community, and were extremely aware and

hard it could be to take one’s medication on time every day, given the

self-conscious about the harmful effects of the circulation of gossip and

way in which children were caught up in games with other children

stigma to their sense of self. On the other hand, they expressed an

and in travelling on various journeys, including those of visiting and

appreciation of help from friends, of the school and their support group

assisting their friends who were also ill. The above concerns resonate

where they could share their affliction, knowing that others suffered from

with those of Roberts (2005) as explored in the literature review.

the same things. They also expressed their appreciation of Khathu’s support, as well as an understanding of their medicinal regimens. 17

6. The children’s focus group discussions In 2009, I conducted focus group discussions with the children in

What the children particularly enjoyed about the project included: “going

which they were divided into four groups. The questions put to each

on camps” and “loving one another”. In open discussion, children

group were as follows: In Question One, children were asked what

expanded upon the above points: “I used to hate taking the medicine,

important things they had learned in their support group, and what had

but coming here has helped. I thought I was the only one like this. So

been important for each of them personally. Question Two asked what

coming here has helped. We love the group because the group members

worked well and what did not work well in the group. Question Three

encourage us to take care of ourselves.” And “I liked going on trips

asked the children broadly to explore their relationships with adults.

and meeting other people who have the same problem as me. I need other people who have the same problem. I have made new friends.”

In reflecting the children’s answers to the questions, I have combined the answers of all four groups, many of which echoed one another.

Of relationships with adults one child said: “I hate it when they beat

In response to the question about what they had learned, children wrote

me for no reason. I am scared to tell adults not to beat me.” This child

the following points: “A person with HIV must eat healthy food.” “A person

said she usually told her older sister when she was unhappy and the

must take the medicine on time.” “Don’t come home late because

older sister then spoke to her mother. Another child said, “When I feel

the time for the medicine will have passed.” “Don’t leave the medicine

sick they say I must do the dishes and go and buy bread.” Khathu

open.” “Do not help someone who is bleeding without a hand glove.”

and I then asked the question, “How do you tell your grandmothers

“Take the ARVs for the rest of your life.” “Do not skip the day for your

when you are sick?” A child stood up, and then adopted a crunched-

hospital appointment.” It is of interest that all these statements are

up body posture, pretending she was speaking to her grandmother,

written in the form of injunctions and become a set of commands.

she said, “Gogo (grandmother), can I go and sleep now?” She said that her gogo allowed her to rest when she was feeling ill. Another

In response to what children did not like in the program, they wrote:

child said the opposite: “If you say you are sick you are told to do the

“Coming and sitting and going home without learning something about

dishes. Even if you repeat that you are sick they keep on asking me to

HIV.” “We do not just want to play and eat, but we want to learn.” “We do

wash them. If I have no strength, I put them back on the rack without

not like it when members do not care for one another, or going to school

the adults being aware that they are still unwashed.”

and getting sick and vomiting. We do not like going on a trip and wanting to stay, but having to come back home again.”5 A small lively girl said

The children remarked that it was acceptable for older people to

that she hated it when her grandmother shouted out loud, “Come home

speak to them but if they initiated speech, adults often got angry

and take the medicine!” because everybody in the community, and her

and shouted at them. Children generally felt that, “If you don’t do

friends, could hear this. Khathu then suggested that she speak with

the dishes the older people will punish you.” The bravest girl in the

her grandmother telling her what she did not like, and the little girl

group, in response to my question about what children could do about

replied that she was too scared to tell her granny – a point that again

extreme beatings, said, “I think I could call the police and maybe they

underscores differing social power between adults and children.

will stop beating her (referring to the child who had initially raised the problem of being beaten at home).”

Children in the Vhusthilo Mountain School paediatric program take part in two camping events every year. These holidays away from home are greatly enjoyed.

I then asked a further question: “When older people say, ‘We can speak to you but not you to us,’ What reasons do they give?” A child replied: “When you speak your mind you are disrespecting adults.” Having explored above the structure and broad parameters of the outreach program for children requiring paediatric ARV treatment at the Vhutshilo Mountain School, I end the report turning to more individual stories. I describe a boy who developed drug-resistant tuberculosis; a mother and daughter living with HIV; a young child activist and the outreach officer’s experience of visiting children on ARV medication in their homesteads.

“The support group for us women is important because if you see others who are suffering in the same way you become strong. You learn to do this, and do this, and so you are not alone, and you become strong.”

7. Mukona’s story: Developing drug resistance in the context of fraught relations of care In 2006, Mukona and an older brother were living with his deceased

When I visited Mukona and his grandmother in their home in 2010 I

mother’s sister. His aunt had three of her own children and was too busy

was moved by his liveliness. Sue-Anne had shown me a photograph

to pay much attention to her sister’s children. Mukona’s older brother

of Mukona during his hospitalisation. His face seemed the face of a

did not want anyone to know that he had HIV and persuaded him to

wizened old man and he was emaciated. On the new drug regimen

stop taking his medication. Mukona’s illness had sometimes resulted in

his health had improved exponentially. His body had filled out and he

violent conflicts between the two boys. Because he was sickly, Mukona

looked like the nine-year-old boy he was. His grandmother told me

was sent down a grade at school. He then stopped going to school

that his health had improved so much that he could now help to clean

altogether, and when Sue-Anne went to find out what had happened to

the house. He was strong enough to cook pap (maize meal porridge),

him, he was extremely ill, lying on a cement floor and “weighing nothing”.

to fetch water and to wash the dishes.

He was taken to Siloam Hospital and Sue-Anne and Khathu began looking for another caregiver for him, who would consistently help with his medication. An unrelated woman volunteered. Mukona then regularly attended the ARV quarterly workshops at Vhutshilo Mountain School and soon rallied. His aunt subsequently got married, and left her two children, whom she had had with previous partners, as well as Mukona and his brother, to be looked after by their maternal grandmother. Until then, the children’s grandmother had worked as a labourer in Sekukuniland, a district in Limpopo, for the local department of public works. Having acquired a pension, she returned to Tshikombani to look after her five grandchildren. In August 2009, Mukona had another bout of extreme illness. In mid December of the same year, a board member of Vhutshilo Mountain School borrowed a car from a friend and drove Mukona to Coronation Hospital in Johannesburg, 560km away. This had been necessary as there were no proper facilities for testing drug resistance at Siloam Hospital. Some money from the Oxfam funding was used for Mukona’s grandmother’s train fare to and from Johannesburg and for transport to and from the hospital in which Mukona was staying for the duration of his recuperation there. She befriended a woman whom she heard speaking Tshivenda at the railway station in Johannesburg who put her up for the three months Mukona was in hospital.

8. Wanga’s story: A mother’s and daughter’s struggle for survival In 1997, Wanga began working in Johannesburg, making furniture in

had HIV. She joined the support group – the one for the little ones at the

Alexandra Township. She returned to live in Tshikombani in 2001, and

school. When I took my child to the hospital I did not know that I was

supports two daughters aged 19 and nine years old through running

also sick. They asked me to check and I checked. I also had the illness.

a spaza (tuck) shop, selling chips, cigarettes and biscuits from her

My little daughter started drinking ARVs and so did I. The medicines

home. Her oldest daughter, who is 22, lives in Johannesburg. Wanga,

are good and strong and I have not experienced side effects.

who is 43, and her youngest daughter have HIV. She has become an active member of the women’s support group at Vhutshilo, as has

“The support group for us women is important because if you see

her daughter in the children’s ARV program. Her story illustrates how

others who are suffering in the same way you become strong. You

social relationships within the school traduce its various programs

learn to do this, and do this, and so you are not alone, and you

and, precisely because of this, come to make a difference to people’s

become strong.

lives. When I visited Wanga and two of her daughters, her home comprised two rooms, in front of which she had built a beautifully

“I support the work of Vhutshilo. I go with the children, only not the

crafted wall and courtyard smeared with cow dung and mixed with

whole group [to the hospital once a month to receive their medicines].

different coloured earths. She and her children were watching a

Some have grown and go by themselves. As to why I do this, not all

Nigerian film, a soap opera about conflict between children and their

parents (meaning all adults) have love. I look after the children with

parents, that Wanga had bought in Thohoyandou. On the wall of

love. When we go, we take food and toys to wait the whole day for

the room in which we sat, the photograph of the head of the Zion

the doctor. We take sandwiches and oranges. I bring pap from home.

Christian Church, BE Lekganyane, as a handsome young man,

I give the children porridge, because bread will never satisfy them for

was hung. Beneath the photograph was a woven grass mat with

the whole day. I am not afraid to talk about my illness.

the word “Moria” embroidered on it, a reference to the sacred place where millions of South Africans journey each year at Easter to hear

“I helped a couple in the next village the other day. They were both

Lekganyane preach.

very ill and thought they would die soon. They were giving up on life and wanted to sell everything so that they could leave their children

I asked Wanga how she came to be involved in activities at Vhutshilo

with some money. They were scared that if they left their property as

Mountain School. What follows is a transcript of our discussion. Her

it was, after their deaths, other relatives would come and take it all,

story shows how the school has made a difference to her family and

leaving their children with nothing. I spoke with them, using myself as

how she in turn has invested energy in assisting the school in its

an example of someone who continued to live. I told them to join the

work. She has also reached beyond the parameters of the program

support group. They said they were still too shy to join. They did not

and its immediate community to form relationships with others in her

feel ready to join. We have become friends through our talking.

neighbourhood and its surrounds around issues to do with HIV: “Vhutshilo has helped a lot. Without Vhutshilo my daughter and I “I heard about a white person near the stadium on the main road

would no longer be here. Vhutshilo has helped a great deal. It is a

who helped people with HIV. She started a crèche there. In 2005,

little community helping people to stay alive and giving them hope”

my daughter became ill. She went to hospital and they found out she

(Wanga: Interview July 2010). 21

9. Vhuhwavho’s story: Developing confidence and becoming a child advocate dolls and a guitar decorate the room. An unusual photograph commemorates her deceased mother, Tshifiwa. Before she died, Tshifiwa worked as a cleaner at a hotel in Johannesburg. Images of Nelson Mandela, Walter Sisulu and other important ANC leaders appear in the photograph with Vhuhwavho’s mother at the hotel, the photograph having been taken after a meeting they attended there. Vhuhwavho has developed a warm and loving relationship with her foster mother and now regularly sees her older brother, who takes her out and buys her clothes. She also attends a local school where her cousins are pupils. She speaks fluent Tshivenda and English, and has often helped children in the ARV program when for some reason they have stopped taking their medication. She has encouraged a number of children to resume their medication, persuading them through the example of her own health and prolonged life. She has also acted as an ambassador for the school by travelling with Sue-Anne to Scotland The Program Director, Sue-Anne, first began to look after Vhuhwavho

and France where she spoke publicly on behalf of the children in

on a part-time basis when she needed treatment for tuberculosis, and

the ARV program. Like most girls from the area, Vhuhwavho is soft

when Vhuhwavho’s grandmother, the person with whom she lived,

spoken and gentle. Her words and self-confidence, however, point to

was herself extremely ill. Vhuhwavho’s mother died of the disease

a quiet inner strength and an enjoyment of life, despite the hardships

when she was still a baby. Medication for tuberculosis required that

she has borne:

Vhuhwavho take it consistently. She therefore stayed with her foster mother during the week, attending the preschool run from Sue-Anne’s

“My mother died. I lived with my granny. I was always getting sick.

mobile home, and returned to her grandmother’s home on weekends.

Susie, my foster mother, came and took me to the doctor and asked

After her grandmother died when Vhuhwavho was four years old, her

him to find out what was wrong with me. He said I had HIV and that I

much older brother, studying in Johannesburg, and her uncle and

would not live beyond tomorrow. But Susie did not believe that. She

aunt, a teacher and a nurse respectively, gave permission for her

got someone to get the right medicines for me and I became well.

to live with Sue-Anne on a more fulltime basis. As a little girl, when

I am still here, and on the 9th of August I will be nine. When I was

Vhuhwavho had been diagnosed with HIV, her family had shown

living with my granny I was very sick. I had Kwashiorkor and TB.

little interest in her, and perhaps through fear of the disease chose to

Susie fostered me from when I was about two-and-a-half. If there

distance themselves, even though they lived fairly close by.

is one thing I would like to tell the children of South Africa it is this. ‘Please take the right medicine, the right mushango (medicine) and

In Vhuwavho’s sun-filled bedroom in the home she shares with Sue-

not the traditional mushango.’ I can now help other children take their

Anne, photographs of friends and relatives, cuttings from magazines,

medicines because I have lived” (Vhuhwavho: Interview 2010).

10. Livhuwani Masindi: Observations of an outreach officer Livhuwani, the outreach officer of the children’s ARV program, visits

“Another problem that we have now fixed is that when I asked some

each of the 31 children in the program at least once a month. She

of the children for the date they were due to go back to the hospital

checks to see whether medicine is being taken correctly. In one

for their meds, they gave a date when their medicine would already

case, she found that a young boy had only taken one of the required

be finished, so that there would be a few days without medication

medicines. Because the boy had defaulted twice on his medication,

before they got more. It was a problem with the pharmacist at the

a doctor at first refused to give him any more, and it was only after

hospital, giving the wrong dates to the children. It was happening to

Livhuwani and the grandmother had pleaded with him that he

many children. Susie (Sue-Anne) wrote to the pharmacist and fixed

relented. The boy has moved away from the area and Livhuwani is no

the problem.

longer sure whether he is taking his medicine. She says of her work: “As to how the families of the children I visit receive me, it differs. “I will tell you about a child whose mother died when she was two

Most welcome you and some do not like you. Some people see me

years old. A volunteer looked after the child from when she was

coming and they laugh and welcome me, offering me tea and we talk

two, because the child was sick. She made sure that she took her

freely. With families who are hiding something, they get angry when I

medicine. Now that she is 11 and appears to be well her family has

ask a child to walk me half way. (It is polite manners to accompany a

called her back to take care of an old grandmother. The girl needs

visitor half way to their own home after they have visited one in many

comfort. She does not need to work hard in this way, to make tea

rural communities in South Africa.) One child, for example, had the

and breakfast for her grandmother early in the mornings, to go to

problem of being beaten at home and not given food. He would tell

school and then to come back and cook and clean. What about her

me many stories on our walks about how his father beat the children

medication? The volunteer caregiver said that when she was looking

of the home and how his brothers shouted at him and one another.”

after the child she took her medicine every day at seven o’clock, but

(Livhuwani, Interview 2010)

because she has so much work to do for her grandmother, the time passes and she sometimes takes her medicine later than that. So what is going to happen? The old caregiver is crying, but the family says: ‘No! We need the child’s help.’ This is not good. How can a little child, who is not strong, take care of a family? “Another problem is that people mix traditional medicines (mushonga ya tshirema) with the ARV medicines. I have even heard of some people selling ARVs. There is gossip that others mix stavodine and efivarents with dagga and smoke it.6 So some people stop ARVs to use traditional

“Perhaps one of the strengths of the program is the fact that it grew organically, as problems and needs emerged within the community of people encompassed by it.”

medicines. They say that ARVs build up in the body, and after five years no longer work. They maintain that traditional remedies always work.

Dagga is the local term for marijuana.

11. Conclusion: Challenges and strengths The strengths of the Vhutshilo Mountain School paediatric ARV

of their own children. Women have seen the importance of openness

support program are many. To date only one child out of 31 has

about the disease within immediate family, because the day-to-day

developed resistance to his initial drug regimen through periods of

routines in ensuring that medicine is taken require it.

suspending his medication. Another child is being tested for drug resistance, as his health has not noticeably improved over a long period. Doctors are not sure whether the child concerned is reacting adversely to one of the drugs in his regimen. Given the fact that most children in the program have been on ARV treatment for five years, their continuing overall adherence is no mean achievement. One of the major reasons for this, as stated by the Program Director, is that children have been taught by example. They have seen the tangible results of sticking to oneâ&#x20AC;&#x2122;s medication in the noticeable recovery of their friends. This has had the important effect of turning many of the

â&#x20AC;&#x153;Perhaps one of the strengths of the program is the fact that it grew organically, as problems and needs emerged within the community of people encompassed by it.â&#x20AC;?

children into advocates for one another, encouraging one another

This does not mean that secrecy does not persist, and often for good

and supporting one another, not only in the group meetings but in

reason. Guardians cannot protect themselves from being victims of

the broader community. One of the themes that emerged in the plays

stigma in public space, and neither can they protect children living with

created by the children was the importance of friendship in assisting

HIV from forms of discrimination they may come across from time to

other children whom a child thought might have HIV. On a structural

time. All participants in the program therefore expressed an appreciation

level, different parts of the program complement one another and

of the social attributes of the program; the fact that they could openly

reinforce forms of organisation that assist both children living with HIV

engage with one another at support group meetings, where many have

and their guardians (see pages 13-14).

stressed they do not feel alone. There is great comfort in sharing similar health and social problems with one another, and in advising one another

Perhaps one of the strengths of the program is the fact that it grew

in how to overcome these. Yet, as the Program Director pointed out,

organically, as problems and needs emerged within the community

when she approached the women belonging to the adult HIV support

of people encompassed by it. The staff members at the school have

group with the possibility of their being part of a television program,

developed a sensitivity to local ways of being that seek to address the

they refused to participate. Many did not feel confident enough to

fears both of children and their guardians. Separate support programs

be exposed in such an unbounded way. Their position suggests

for children and their caregivers have provided social spaces in

that the social consequences of being seen to carry the disease are

which fears have been openly discussed. Because of the weight of

burdensome and often painful. In particular the women were afraid of

predominantly social concerns about perceptions of those who are

the reaction of their male partners to such participation.

seen to be ill with HIV in public spaces, facilitators have enabled

conversations between women in their support group, for example, to

Some children in the program have developed a strong confidence

find ways of disclosing their condition to children within their families,

in themselves because of their survival, and are no longer afraid to

and indeed, particularly when the virus has been passed on to one

tell teachers of their condition when they need to visit the hospital

or to take their medicines. Children also developed confidence in

we conceptualise participatory processes. It is clear that participation

being exposed to other children from outside their own everyday

within different social contexts takes place in differing social spaces.

environment on camping trips. As some of the children approach

Theoretically, what has emerged from the research is the conundrum

adolescence new problems are emerging. The Director has

of wanting to “access children’s voices” in a cultural context where

suggested that the pressures of this time of life for young people

this is difficult to do, yet at the same time devising ways in which this

may result in problems with taking their medication consistently.

may nevertheless be done – through improvisational techniques, for

This will necessitate the program developing discussions around

example. I offer a quotation from two anthropologists, Alcinda Honwana

sexuality and medication.

and Filip de Boeck (2005, p.2) who perhaps show us how difficult it is truly to hear what children are saying.

Some problems within the program emerge from the formal health care system itself. This is despite the fact that the program has

“Children have rarely been listened to, and when their voices are not

developed very good relationships with local personnel. One example

silenced, their talk is never unconstrained. Children’s voices reach

was the repeated mistakes made by the pharmacist in giving dates on

a broader platform only in rare, and sometimes tragic, cases, but

which children had to return to the hospital to renew their medication.

even then these subaltern voices are often immediately recuperated,

Children would return for medication several days after their previous

transformed, and inserted into different narratives and agendas set by

meds were finished. The problem was addressed through the

other interest groups.”

intervention of the program. The hospital nevertheless acknowledges the strength of the program through referring children with HIV to it.

I sum up the conclusion by reiterating the ways in which the report

It does so because of the program’s strength in visiting the children

has outlined the social dimensions that affect children taking ARV

regularly in their homes and in impressing upon participants the

treatments. Such dimensions will add complexities to their lives

importance of adherence.

as time goes on. Wanting to take part in local courting repertoires and becoming sexually active, for example, will raise questions as

As has been explored in the report, cultural particulars shape ways

to whether young people will discuss their status with prospective

in which children and adults interact. Children are socialised into

partners openly. Their burgeoning sexuality will inevitably raise

obeying older people and into a myriad of cultural practices that

difficulties in how they negotiate discovering sexual selves. Will

underscore manners of respect, for example, in the way people are

the “brave openness” they have learned as children with regard to

greeted, in forms of address and in naming, and in the muted volubility

their HIV status persist in their journeys towards becoming sexually

of children in replying to adult enquiries. There are also various forms of

active young people? Journeys through life with HIV are fraught with

bodily comportment that indicate respect between children and adults

anxieties. As one of the mothers in a support group mused about

and between people of different genders. Local childhoods therefore

her son who has HIV, “Will he, when he grows up, be able to be

present certain challenges to “Western” models of childhood in which

circumcised? Will he be able to have children?” Both of these events

ironically both protection and empowerment are conjoined. In local

are important in the local context for someone to be able to claim to

forms of childhood, obedience to older people and yet greater degrees

be an adult man. HIV therefore raises a host of social uncertainties,

of responsibility and independence among peers may challenge how

as well as compromising the health of those who live with it. 25

12. Appendix I: Literature Review The literature review comprised a brief analysis of three sets of

The absence of literature in which children’s presence is felt, on one level,

readings: the first dealing with developments in the field of childhood

has to do with stringent biomedical ethical requirements in undertaking

studies broadly, and new theoretical approaches to the study of

child research that have been uncritically adopted in relation to social

childhood and of children; the second dealing with a small number of

research. Notwithstanding the important aim of protecting children from

clinically based studies of paediatric ARV programs that are largely

exploitation, and a further infliction of emotional pain, there may be ways

institutionally based; and the third considering issues relating to social

of doing social research that ensure a respectful relationship between

stigma and illness. I draw on the above sets of readings to link ideas

researchers and children, and that at the same time confront difficult

around the ethical parameters of childhood research and research

lived realities without approaching, too closely, contours of personal

with children, with a more medically based set of studies in which

pain. There may also be ways of doing research in which a description

the social dimensions affecting illness and treatment regimens are

of children’s worlds are not too quickly overlain with adult conceptions,

often under-described. I also draw on literature exploring the global

where children’s views and forms of expression are taken seriously.

diversity of childhoods to bring to the fore the importance of local cultural repertoires and their historical contexts in shaping people’s

Morrow & Richards (1996) provide a critical analysis of existing

responses to institutional health care.

guidelines of social research that challenge innumerable protective barriers to working directly with children. They argue that children’s

There is a small body of textured ethnographic work on the

experiences and opinions are not often given due consideration as

anthropology of childhoods and children’s worlds that has emerged

primary sources of knowledge about their lives. Because of power

within South Africa over the last 20 years (Bray et al 2010; Bray

differentials between people of differing ages, and in relation to

2003; Burman & Reynolds 1986; Henderson 1999, 2006; Jones

gendered inequities and a failure seriously to consider children’s

1993; Moses 2006; Ramphele 2002; Reynolds 1989, 1995; Ross

opinions, silences emerge concerning children’s experience. In

2003, 2009; Salo 2003, 2004). Equally, there are very few social

relation to children living with HIV in Zimbabwe, Ross Parsons (2005,

science and anthropological studies that pay detailed attention to the

p.74), for example, notes the suffering and grief endured by children

social conditions in which children, orphaned by AIDS, and who may

in the face of the loss of their parents through HIV and AIDS that

be infected with HIV, live and experience their everyday lives. Rare

remain unacknowledged in public life.

studies consider children’s own experience of chronic and terminal illness in general (see, for example, Blake 2007) and in particular,

I have argued that in undertaking research with adults and children,

children’s experience of living within a context of HIV and AIDS (Earls

undergoing the affliction of a chronic and sometimes terminal disease,

et al 2008; Henderson 2006). With regard to child studies in the social

ethical relationships between interlocutors and researchers are those

sciences, Giese et al (2003) note that there is a distinct lack of writing

that ideally evolve out of a carefully negotiated relationship over

that “puts faces to statistics and generalisations” concerning children

time, and that the role of researcher is to allow participants to set

and that represent and reflect the heterogeneity of their experiences,

the pace of discussions and to proffer renditions of their experience

something important if one is to address their needs.

in a manner of their own choosing and as they see fit (Henderson 2005, p.88). It is obvious that this was not possible in undertaking the research from which this report was written.

“childhood studies increasingly embrace the notion of children as creators of culture and society in their own right, a great deal of existing literature persists in emphasising a protectionist approach to working with children that has the consequence of denying their capacity to act decisively and to make decisions for themselves” Social theorists involved in child studies, for example James et

Much work emphasises externally defined psychological and socio-

al (1997) and Jenks (1996) have shown that the discipline of

economic “risks” faced by children living in the context of HIV and

psychology commandeered the field for many years through the

AIDS (Cluver & Govender 2007; Earls et al 2008; Murray 2010).

construction of a theoretical framework demarcating the discipline

Many psychological studies call for collaborative community based

of child development, a discipline that supposedly defined universal

approaches to child care, asserting that not only should material

characteristics pertaining to growing children. Little room remained for

needs of children be met, but that mental health care is “an integral

socio-cultural and political factors influencing perceptions of children’s

part of the management of chronic disease” (Earls et al 2008, p.296).

abilities linked to age, children’s differing journeys from childhood to adulthood, as well as conceptions of childhood.

Terms used in studying children often become formulaic – terms such as “AIDS orphan” and “orphans and vulnerable children” (OVCs),

In many socialisation theories, children were initially perceived as

for example. The use of the term “AIDS orphan” and its widespread

passive recipients of socialisation processes, as tabulae rasae onto

currency has been criticised by Bray (2003), Meintjes (2006) and

which social and cultural repertoires were etched through learning

Henderson (2006), who show how it circulates within global discourse

and imitation. The above models differ from new developments

in a way that differs from local conceptions of orphanhood in many

in child studies and ethnographic findings that describe children

parts of South Africa, and indeed Africa as a continent. Children

as active participants within diverse social, cultural and political

have often refused the label of “orphan”, because they associate it,

contexts in which they themselves are involved in processes of social

not necessarily with the death of biological parents, but with a sense

transformation, of meaning making, and critique.

of complete social dislocation and the erosion of one’s place in the world – with an absolute lack of care. As the majority of South African

Despite the fact that in contemporary scholarship, childhood studies

children who have lost one or both parents to the epidemic are living

increasingly embrace the notion of children as creators of culture and

within familiar environments with relatives or neighbours, the alarmist

society in their own right, a great deal of existing literature persists

predications concerning unsocialised youth and criminality (Bray

in emphasising a protectionist approach to working with children that

2003) emerging in an orphaned population have proved ill conceived.

has the consequence of denying their capacity to act decisively and to

That the use of the above terms has potentially stigmatising effects

make decisions for themselves.

and emotional repercussions is not in question. 27

Having “set the scene” in sketching general themes in the field of

to the existence of a closely coordinated hospital team comprised of doctors,

child studies, I now turn to literature describing the elements of

nurses, pharmacists, volunteers, people living with AIDS, social workers and

paediatric ARV programs. Not surprisingly, many of these studies

technicians. The team planned regular meetings with the children and

revolve around describing barriers to “adherence” in relation to

their caregivers at the hospital. Findings showed that children over

medical regimens. Some clinical studies have found that high rates of

nine years old, who were cared for by their grandparents, were less

adherence to ARV medication in children are rare (Farley et al 2003).

likely to be adherent (Hansudewechakul et al 2006, p.180). This is an

For example, a study in the United States recorded a rate of only 49%

interesting finding, given the fact that most caregivers in the Vhutshilo

adherence among a group of 51 inner-city children (Marhefka et al

Mountain School paediatric ARV program are grandmothers.

2004). Such studies resulted in a number of researchers arguing for a delay in the distribution of paediatric antiretroviral treatments and their

Hanusudewechakul et al (2006, p.180) emphasised what they called

careful introduction. Clinicians were justifiably afraid of the possibility

“educational, behavioural and affective interventions” to circumvent

of children who were not consistent in taking their medication

the problem of lack of adherence to treatment regimens. They

developing drug-resistance (Harries et al 2001; Popp & Fischer 2002).

developed the following techniques to measure adherence. I list them, as they share some similarities with the Vhutshilo Mountain

Very few social studies of paediatric ARV support programs

School program. They are: 24 hour recall, in which children and

encompass in their descriptions all the social spaces children journey

their guardians were asked when and how they had taken their

through in being part of an ARV program. Few, therefore, reach

medicines in the last 24 hours; directly observed treatment (DOT)

across the institutional spaces of hospitals and clinics into homes, and

records of the last 10 doses recorded by monitors, for example

community settings more generally, all these being structured social

nurses and carers; and self-record books compiled by children, in

spaces that together comprise the dimensions of children’s worlds in

which they recorded their medicinal intake. After a careful initial

managing their HIV status and their lives. Clinical studies in the main

stage in educating and monitoring children and their caregivers

are institutionally based, setting out structures either within hospitals

around ARV treatments, and measurement of doses over a two-

in clinical studies or within families in the case of social work and

week period, one to two monthly meetings for the first six months

therapeutic studies, for example, that have been created to deal with

of a child undergoing treatment were arranged between hospital

paediatric HIV infections and the roll-out of ARVs for children.

personnel, the children and their guardians. Thereafter, quarterly meetings were held each year for caregivers and children, in which

Hansudewechakul et al (2006, p.180) have argued that “as antiretroviral

new information, counselling and preparation of medicines were

treatment begins to reach HIV-infected children in developing countries,

practically explored (Hanusudewechakul et al 2006, p.180). The

there is an urgent need to develop and document effective and feasible

authors suggested that a high level of commitment to the program

strategies to optimise adherence in children.” Their study traces adherence

among the hospital personnel taking part in it led to the success rate

among 110 children in a hospital-based support program run from Chiang

that the intervention enjoyed. They concluded, “With limited resources

Rai Hospital in Thailand over a two-year period from 2002 to 2004. The

but high involvement of the care team it is possible to achieve rates of

project met with a high rate of success, as 87% of the children remained

therapeutic success similar or higher than those reported in resource-

adherent for 95% of the time to their treatment regimens. This was attributed

rich countries” (Hanusudewechakul et al 2006, p.188).

Shah (2007), working with paediatric patients infected with HIV in

In an unusual study, touching on the everyday routines of caregivers

India, suggests that three factors influence adherence to antiretroviral

and children’s lives, Roberts (2005) identifies six main barriers to

treatment, these being regimen related complexities, patient–family

adherence related to: family daily routines; medicinal side-effects;

related issues, and organisation within the healthcare delivery system

taste, size and shape of medicines; children’s experience of social

(Shah 2007, p.55). Major factors within families that had a negative

stigma in relation to HIV and AIDS; the taking of medicines as a

effect on adherence to drug regimens included the presence of anxiety,

reminder of HIV and AIDS; and children choosing to hide that they

depression, active substance abuse, fear of disclosure, other family

may not have taken their medicine. As intimated above, most studies

members with HIV infection, financial burdens, struggling with one’s

have relied on reports of children’s guardians. Roberts’s work differs,

own infection, inadequate caregiver’s knowledge about antiretroviral

in that she directly consulted children. When she wrote her article,

treatment, and denial and fear of HIV status (Shah 2007, pp.55–6).

she knew of no other studies that had collected the perspectives of children themselves who were living with HIV and AIDS, regarding

Very few examples of intervention programs for children with HIV

what may have prevented them from taking their medication. This

and adherence problems are reported in the literature. Ellis et al

was despite the fact that scholars argue that even very young children

(2006), as well as many other studies, have shown that an increase in

are capable of reporting on their own health (see, for example,

knowledge does not necessarily lead to adherence or to prevention.

Riley 2004). Her study is important, because it underscores the

Ellis et al (2006, p118) advocate collaborative and intensive work with

necessity of understanding the intersection of local worlds with formal

families to overcome problems with regard to adherence. They argue

institutions and of incorporating directly the views of children.

that home-based approaches to support, involving multi-systemic therapy, provide “an ecologically valid, family-centred means of

Roberts conducted nine face-to-face interviews with children who

engaging children and their parents. They also allow the treatment

were taking ARVs and whose average age was 9.5 years. She also

provider to better understand the real-world barriers to regimen

conducted 14 interviews with guardians, some of whom were looking

adherence that families face” (Ellis et al 2006, p.120).

after children who did not know that they were HIV positive (Roberts 2005, p.234). In relation to everyday routines, findings showed how

Ellis et al, who undertook research into the forms of support for

mornings were often extremely busy. There was often not enough

children involved in ARV programs, list the attributes of what they call

time to do everything needed in getting ready for school. Children

“multi-systemic therapy” as follows: It is based in the home and any

were rushed in washing, dressing, eating and catching transport on

other necessary setting (for example the homes of extended family

time. Given mornings’ busyness, they sometimes did not take their

members or a school); it addresses multiple contributors to adherence

medication, or did not take it on time. Children also expressed the

across multiple systems; it addresses specific causes of problems

opinion that if they were too busy having fun, playing or watching

for each individual or family; it develops skills practised in real-world

television, they sometimes forgot to take their medication. It was

settings and schedules individualised sessions for each family and

often difficult to interrupt an enjoyable game or experience (Roberts

with others, including peers, and school, for example (Ellis et al 2006,

2005, p.234). Deviation from routine also created problems. Children

p.115). As such, this is a study in sympathy with social work practice.

going on holiday or travelling into a different time zone, for example,

often disorientated them and prevented them taking their medication

I end the literature review with a brief exploration of social stigma, as

on time. Children sometimes complained about the horrible taste of

it has bearing on some of the findings of the study. Irving Goffman’s

medication, especially liquid meds. If they experienced nausea and

(1963) original definition of stigma implies “an attribute (affixing to

diarrhoea on taking medication, especially on an empty stomach, they

a person) that is severely discrediting” (cited in Brown, Trujillo &

would sometimes neglect to take the medicine that made them feel ill.

MacIntyre 2001, see also Link & Phelan 2001). The term derives from the practice in ancient Greece in which certain people were

Many children experienced social discrimination and some tried to

made to bear a physical mark that labelled them as inferior to others.

keep the knowledge of their condition from members of their own

Particular kinds of stigma adhere to different diseases and states of

family. Others became embarrassed about taking medication in public

ill-health, and these may change over time (Sontag 2002). Susan

spaces, as this became a signifier to observers of their affliction.

Sontag is famous for her exegesis of metaphor in relation to cancer,

Some children overcame the latter problem by telling stories about

tuberculosis and HIV and AIDS, during different historical periods.

their medication, saying, for example, that their pills were vitamins,

Some scholars from different disciplinary backgrounds have pointed

or for some other condition that did not carry such negative symbolic

out the importance of language in the infliction of pain associated with

weight. Taking medication day after day also became a constant

stigma (Mawadza 2009). Veena Das (2006), drawing on the linguistic

reminder of the chronic illness children bore. Sometimes they

philosophy of J. Austin and Ludwig Wittgenstein, has examined

chose not to take it in order to “forget” that they were ill. Many of the

ethnographically the force of language in social life, and in particular

children’s concerns explored above have resonance with the children

the pernicious effects of gossip and rumour in times of heightened

involved in the Vhutshilo Mountain School program.

social violence (see also Das 1996). Ogden and Nyblade (2005, p.26) identify different dimensions of AIDS-related stigma in their

What is interesting about the above studies is that they bring out

study covering Ethiopia, Tanzania, Vietnam and Zambia; these being

the ways in which forms of surveillance are necessarily imbricated

linguistic and verbal, social, institutional and physical forms of stigma.

with the treatment of HIV. This factor in itself may be experienced as

The latter writers concluded that stigma is reproduced in a discursive,

burdensome, especially in a context of fraught social and political

social space and produces physical and emotional forms of exclusion

histories such as in South Africa, where formal health delivery for the

that result in profound senses of negation. Dimensions of such

majority of the population has been discriminatory and often highly

negation include separation, loss, discrimination, labelling, alienation,

inadequate. The medical anthropologist Didier Fassin (2007) and

and often the attribution of blame, pollution and malevolence to those

the social historian Shula Marks (2002) have brought out the ways

stigmatised (see also Link & Phelan 2001, De Boeck & Plissart 2006,

in which oppressive regimes of power, culminating in the apartheid

& Henderson 2004). Parker and Aggleton (2003) have explored fear

state, have shaped people’s perceptions of formal healthcare in a

of HIV and AIDS as a distancing device between those who label

highly unequal society. It is not surprising that people’s responses

others as ill in contrast to their own state of presumed health. My own

to institutionally based biomedical care are often characterised by

work (Henderson 2004) and that of Julia Kristeva (1982) explores

ambiguity and distrust.

horror and abjection in relation to visceral aspects of disease and their effects on social relations and their fracturing.

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