THE DIFFICULTIES EXPERIENCED BY CAREGIVERS OF 
AIDS ORPHANS 
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) 
ELIZABETH QALlWE MOTAUNG 
HONS B.Ed. (NWU), ACE (NWU), JPTD (Sebokeng College of 
Education) 
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A dissertation submitted in fulfilment of the requirements for the 
degree 
MAGISTER EDUCATIONIS 
In 
EDUCATIONAL PSYCHOLOGY 
NORTH-WEST UNIVERSITY 
(VAAL TRIANGLE FUCULTY) 
) 
SUPERVISOR: Dr NJL Mazibuko 
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) 
Vanderbijlpark 
2007 
NORTH.wE!ST UNIWf¥lITV
eLYYUNIBEsmVA aOKONE·BOPHIRIMA NOOROwes-uNIVERSITEIT VAALDAJEHOEKKAMPUS fil 
, "., 'I,' 
2008 -12- 12 
Akademiese Administrasie
 
Posbus Box 1174
 
VANDEABIJLPAAK 
1900 
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DECLARATION 
"l hereby declare that the thesis for the degree of .Magister Educationis in 
Educational Psychology, at the North-West University hereby submitted, has not 
previously been submitted by me for a degree at this or any other university, that it is 
my own work in design and execution, and that all material contained herein has 
been duly acknowledged." 
ELIZABETH QAUWE MOTAUNG 
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ACKNOWLEDGEMENTS 
I am grateful to the Almighty God for his Grace; Love; Care and above all His 
everlasting protection during my entire study. 
I am also grateful to my supervisor Dr N.J.L Mazibuko for giving me an opportunity to do 
this highly demanding, but yet exciting project, as well as his valuable advice and 
discussions, and his critical assessment of this work. 
I am thankful to Mr. I. Letsapa of Ikokobetseng Primary School for his moral support, as 
well as his involvement with HIV/AIDS affected and infected learners. 
I thank my sister's son Thoriso Lemeko, for his technical help, especially using his time 
to take videos of my interviews. 
I sincerely thank the Ikokobetseng staff for their support during my entire study. 
My appreciations go to Dr. W. Smith for editing this manuscript. 
I am sincerely grateful to my mother Julia Mphuthi, especially my mother for her support 
and encouragements, as well as taking care of my two sons during my studies. 
To my siblings Mrs Sesi Lemeko; Mrs Selina Malindi; Mr Pakiso Mphuthi and Mr Tshepo 
Mphuthi , I am truly grateful for your emotional support. 
To my brothers in law, Mr Lucas Motaung and Dr Aggrey Lemeko, I appreciate your 
support, especially providing me with transport and photocopying. 
)	 My appreciations go to all the caregivers who gave me their time, as well as allowing 
me to intrude into their private lives. 
My appreciations also go to educators, f\lGOs, social workers for all their contributions 
in my studies. 
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IV 
I am truly grateful to my loving husband Majorobela who supported me throughout my 
studies. 
Last but not least, I am sincerely thankful to my two sons Itumeleng and Oreratile their 
forbearance throughout my study, and yet still encouraged me to go on with my studies. 
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ABSTRACT 
The aim of this study was to identify difficulties experienced by caregivers of children 
orphaned by HIV/AIDS. The This aim was achieved through the following objectives: 
investigate the family background of caregivers of AIDS orphans; investigate the 
general emotional impact of caring for AIDS orphans on caregivers; investigate the 
health impact of caring for AIDS orphans on caregivers; investigate the extent of 
financial impact of caring for AIDS orphans on caregivers; investigate the impact of 
caring for AIDS orphans on the social life of caregivers; to make recommendations so 
as to assist in helping caregivers. 
A literature review and the qualitative empirical research method were used to achieve 
the aim and thus, the objectives stated above. 
The literature review revealed the following difficulties experienced by caregivers of 
AIDS orphans: lack of knowledge regarding the formal adoption of orphans; lengthy 
process administered by an increasingly overstretched system; bad behaViour by 
orphans; stress resulting to poor physical and mental health, strained personal 
relationships and lowering of standards of care; poverty; "role strain" and "identity"; 
) Interpersonal and family conflicts; isolation and fear for the future; excessive workload 
of having to care for children; and stigma and discrimination relating to HIV/AIDS. 
) 
However, this study highlighted the following difficulties: poverty; stress and depression; 
family fights; adoption; bad influence on orphans by neighbours; education; lack of ) 
training; lack of social services support; lack of community support structures; and lack )
 
) of prior planning by orphans' parents.
 
The conclusions drawn from this study are that there were similar problems revealed in 
this study to those identified in the literature. For example, both literature and this study 
revealed poverty, stress and interpersonal and family conflicts as major problems 
experienced by caregivers. Grandparents and other family members who were 
caregivers in this study did not see "role strain" and "identity" as major stumbling blocks. 
Stigma and isolation were also some of the problems not directly experienced by most 
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caregivers. However, it was evident that lack of involvement of some of these 
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caregivers with the community, has led to their not experiencing stigmatisation and 
isolation. 
The following recommendations were made: caregivers should be given adequate 
training on how to use the grants given to orphans; researchers should use their 
research findings to influence government policy regarding termination of grants for 
orphans, that is, as long as orphans are still attending school or university, grants 
should not be terminated; universities and government should set aside special 
bursaries or study loans for orphans at universities, and these loans must only be paid 
when the orphans are in the position to do so; government s~lould make extra funds 
available to give to caregivers as incentives; social Welfare Department should be 
strengthen so that free counselling could be given to caregivers whenever is necessary; 
School-Based Support Teams (SBST) committees in schools should be capacitated and 
empowered; capacitate and empower non-governmental organisations (NGOs); and 
there should be a strong interaction between schools, NGOs, social workers, nurses 
and police. 
.Limitations of the current study were also identified. This study could not show with 
absolute certainty whether the problems identified are related to orphanhood in general, 
rather than orphanhood by HIV/AIDS. Thus it was deemed necessary in future to have a 
comparison group of caregivers of orphans due to reasons other than HIV/AIDS. 
Other limitations included reliance on one population race. The study cannot ascertain 
whether these findings can be applicable to caregivers from other race groups such as 
white or coloured races. South Africa is a multicultural society with different norms and 
values. Thus, the way we react to certain stimuli might be influenced to a large extent by 
our customs and values. 
) Further limitations included reliance on one specific type of caregiving. The study did 
) not explore other type such as orphanages, but concentrated on what is regarded as 
) \ the traditional safety net. 
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TABLE OF CONTENTS 
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)	 DECLARATION ii
 
ACKNOWLEDGEMENTS iii
 
ABSTRACT v
 
TABLE OF CONTENTS vii
 
CHAPTER ONE 1
 
ORIENTATION 1
 
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1.1 INTRODUCTION	 1
 
1.2 Significance of Study	 4
 
1.3 STATEM ENT OF TH E PROBLEM	 5
 
1.4 AIMS OF THE STUDY	 10
 
1.5 THE RESEARCH METHODS USED TO CONDUCT THIS STUDy 10
 
1.5.1 Literature review	 10
 
1.5.2 Qualitative research	 11
 
) 
1.5.3 A measuring instrument used for the qualitative research method 11
 
,
 
) 1.5.4 Demographic information 12
 
1.6 CHAPTER DIVISION	 12
 
1.7 CONCLUSION	 13
 
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CHAPTER TWO 14
 
LITERATURE REVIEW ON HIV/AIDS, AIDS ORPHANS AND CAREGIVERS 14
 
2.1 INTRODUCTION	 14
 
) 
) 2.2 THE LATEST HIV/AIDS GLOBAL STATISTICS AND THE HAVOC .. 
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_IT CAUSES IN THE WORLD	 19
 
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) 2.3 THE IMPACT OF HIV/AIDS ON CHILDREN	 22
 
2.3.1 Emotional impact.	 28
 
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V111 
2.3.2 Household impact. 29
 
2.3.3 Education 29
 
2.3.4 Stigmatization 30
 
2.3.5 Family structures 31
 
2.3.6 Manifestation of depression and anxiety 32
 
2.4 ISSUES RELATING TO PEOPLE WHO PROVIDE CARE TO AIDS ..
 
_ORPHANS 33
 
2.5 THE NATURE OF CARE NEEDED FOR AIDS ORPHANS 50
 
2.5.1 Social grants ; · :.: i 50
 
2.5.2 Home- and Community-Based Care and Support Programme 52
 
2.5.3 Services for children 53
 
2.5.4 Partnerships 53
 
2.5.5 Inclusion 54
 
2.6 Caring as the way to help AIDS orphans 57
 
2.6.1 Support for carers 58
 
2.6.2 Keeping children in school 59
 
2.6.3 Empowerment for children 60
 
2.6.4 Protection for the legal and human rights of orphans 60
 
2.6.5 Meeting emotional needs of AIDS orphans 61
 
2.7 CONCLUSiON 62
 
CHAPTER THREE 63
 
EIVIPIRICAL DESIGN 63
 
3.1 INTRODUCTION 63
 
3.2 QUALITATIVE RESEARCH METHOD 63
 
3.3 RATIONALE FOR CHOOSING THE QUALITATIVE RESEARCH METHOD 64
 
IX 
3.3.1	 Interviews 67
 
3.4	 CHARACTERISTICS OF A RESEARCH INSTRUMENT 71
 
3.4.1	 Validity 71
 
3.4.2	 Reliability 73
 
3.5	 POPULATION AND SAMPLE SELECTION 73
 
3.6	 EMPIRICAL RESEARCH DATA COLLECTION 75
 
3.7 The interview schedule	 75
 
3.8	 Development of the questions for the interview schedules 76
 
3.9	 Ethics and informed consent.. 77
 
3.1 OCOI\ICLUSION 78
 
CHAPTER FOUR 79
 
ANALYSES AND INTERPRETATIONS OF THE EMPIRICAL RESEARCH DATA 79
 
4.1	 INTRODUCTION 79
 
4.2	 RESPONSES OF CAREGIVERS (N=11) WHO FORMED THE POPULATION
 
SAMPLE OF THIS RESEARCH 80
 
4.2.1	 Questions one to six of the interview schedule sought to investigate the
 
family background of caregivers 80
 
4.2.2	 Questions seven to sixteen investigated the general emotional impact of
 
caring for AIDS orphans on caregivers 87
 
4.2.3	 Questions seventeen to nineteen investigated the health impact of caring
 
for AI DS orphans on caregivers 99
 
4.2.4	 Questions twenty to twenty-seven investigated ways in which caregivers
 
are experience financial problems because of their caring for AIDS
 
orphans , 101
 
x 
4.2.5	 Questions twenty-eight to thirty-six investigated the impact of AIDS
 
orphans caring on the social li'Fe of caregivers 109
 
4.3	 Responses of grandparents (n=2) of caregiver one's orphans 118
 
4.4	 Responses obtained from educators of caregiver one's orphan 120
 
4.5	 Responses received from members of a non-governmental organization working
 
with HIV/AIDS infected and affected persons 122
 
CHAPTER FiVE 128
 
FINDINGS FROM THE EMPIRICAL RESEARCH 128
 
5.1	 INTRODUCTION 128
 
5.1 .1	 Findings from literature 128
 
5.1 .2	 Findings from this study 129
 
5.2	 RECOMMENDATIONS AND MOTiVATIONS 137
 
5.2.1	 Adequate training for caregivers and monitoring of grants for orphans. 137
 
5.2.2	 Intervention from researchers in convincing the government for a need to
 
continue issuing grants even after eighteen years of age 137
 
5.2.3	 Special grants or loans for university studies 137
 
5.2.4	 Extra government incentives for caregivers 137
 
5.2.5	 Empowerment of Social Welfare Department.. 138
 
5.2.6	 Training and empowerment of School-Based Support Teams (SBST) in
 
schools 138
 
5.2.7	 Capacitate and empower non-governmental organisations (NGOs) 138
 
5.2.8	 Synergy between schools, NGOs, social workers, nurses and police 138
 
5.3	 LI MITATIONS OF TH E STUDy 139
 
5.4	 CONCLUSIONS 139
 
REFERENCES	 140
 
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CHAPTER ONE 
ORIENTATION 
1.1 INTRODUCTION 
According to estimates from the Joint United Nations Programme On HIV/AIDS 
andAccording to estimates from the Joint United Nations Programme On HIV/AIDS and 
World Health Organisation (UNAIDSIWHO) AIDS Epidemic Update (2007:4), around 
thirty-paint-eight million adults and two-paint-five million children in the world were living 
with HIV at the end of 2007. Cluver and Gardner (2006:2) argue that an estimated 
twenty-four-point-eight per cent of South Africa's population are HIV positive, with four­
paint-seven million infected by 2001. They further assert that numbers of children 
parentally bereaved by AI DS in South Africa are expected to rise from one-paint-one 
million in 2003, to three-paint-one million by 2010. These numbers, as they suggest, 
would peak at five-paint-seven million in 2015. The human toll and psychosocial and 
economic suffering of people due to HIV/AIDS is already enormous. For example, Avert 
(2005:3), in a study that was conducted in South Africa, found that already poor families 
coping with an AIDS-sick member were reducing spending on basic necessities like 
clothing by twenty-one per cent, electricity by sixteen per cent and other services such 
as water and transport by nine per cent. This impact on household income has in tum 
lead to some children going to school without food and/or proper school uniform, and 
further leading to these affected learners being discriminated against by educators, 
fellow learners or both. 
According to Monasch and Boerma (2004:S55), the AIDS epidemic has caused rapid 
recent increases in the prevalence of orphanhood. They further argue that although high 
levels of adult mortality resulted in high levels of orphanhood in the era before AIDS, 
there is now a clear evidence of an increase in orphanhood in countries severely 
affected by HIV/AIDS. Throughout Africa, South Africa not exempted, large numbers of 
children are being orphaned by HIV/AIDS epidemic. Foster (2002:3) argues that this is 
generating serious psychological, social and economic problems for such children. 
Foster (2002:3) further suggests that many children who are not themselves infected, 
suffer the consequences of prolonged parental illness, and many others have already 
experienced the loss of their mother, father, or both. Due to this prolonged illness or 
loss of their parents, many of these children are forced to live with caregivers, w~lich is 
2 
an indication that children orphaned by AI OS experience psycho-social and economic 
problems long before the death of their parents. 
This problem has led to the development of family coping mechanisms including placing 
children with relatives, foster families or in residential institutions in the belief that their 
material needs will be met (ISS/UNICEF, 2004:2). South Africa's orphaned children, 
which is also typical of all African countries, have traditionally been cared for within the 
extended family, often by elderly grandparents (Foster, 1998:517). However, these 
mechanisms are showing signs of failure and this has led to the establishment of child­
headed households (Olsen, 2005:1). The main event t~lat leads to establis~lment of 
c~lild-~leaded household is the death of parents, parental illness or disability. However, 
in some cases one or both are still alive (Alliance, 2006: 1). 
A study conducted by Nakiyingi, Brac~ler, Whitworth, Ruberantwari, Busingye, 
Mbulaiteye and Zaba (2003:1828) found that whereas infection may directly affect child 
mortality, unaffected children may also experience higher mortality if they are orphaned 
or if family resources are diverted to care for HIV-infected parents. The most unpleasant 
situation is having these learners taking on more responsibility to eam an income to 
produce food as well as taking care for family members. This situation forced the 
International Labour Organisation International Programme on the Elimination of Child 
Labour (ILO/IPEC) to commission in 2001 qualitative rapid assessments (QRAs) in four 
countries in sub-Saharan Africa, namely South Africa, the United Republic of Tanzania, 
Zambia and Zimbabwe (Amorim & PipreI2003:2). 
The most visible effects of the epidemic are a decline in school enrolment, which 
impacts on both learner as well as the education sector (Pharoah & Weiss, 2005:1). 
This highlights the fact that fewer children will receive basic education, which in South 
Africa is the basic right enshrined in the Bill of Rights (SA, 1996) The decline in school 
enrolment has a direct effect on HIV prevention because children who are supposed to 
be at schools end up not being effectively educated on the nature, extent and the 
impact of this disease on human development. Piot (2005:6), who is the Director of 
UNAIDS illustrates the relationship between education and AIDS when he posits that 
without education AIDS will continue its rampant spread in communities and affecting 
the lives of many people, including children. Consequently, with AIDS out of control, 
education will be out of reach of many children. 
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This importance of education to stop the spread of AIDS is further emphasised by Booi 
(2005:7), the Gauteng Education department's HIV and AIDS Education coordinator, 
who remarks that schools are critical vehicles to help reduce the spread of HIV and 
AIDS in Gauteng. Boler and Jellema (2005:11) best describe education as a social 
'vaccine'. According to Bolar and Jellema (2005: 11), school systems have a three-fold 
role to play in fighting AIDS, namely: 
•	 education protects individuals, and completion of at least primary education is 
directly correlated with dramatic reductions in HIV infections even if learners are 
never exposed to any speci'flc AIDS education or life skills programme in the 
classroom. They argue that a general foundation in education equips individuals· 
with cognitive skills needed to understand, evaluate and apply health information; 
•	 education also boosts earning power, self-confidence and social status, giving 
young people and especially women increased control over their sexual choices; 
•	 schooling is a sustained and powerful socialisation process (including in sexual 
education), shaping values, identities and beliefs through daily exposure to the 
nature of sexually transmitted diseases; and 
•	 education informs individuals because schools have the potential to be 
inexpensive vehicles for passing on HIV/AIDS information and promoting safe 
behaviour among learners, since they reach the right target group (children and 
adolescents). 
Wijngaarden, Mallik and Shaeffer (2004:3) argue that the education sector should be 
used as a vehicle to reduce the fear of HIV/AIDS and fear of people who have HIV/AIDS 
so that stigma and discrimination targeted towards this group is lessened by promoting 
care, compassion and non-judgemental attitudes among learners. Stigma and 
discrimination may lead to many forms of social exclusions, for example at home, and 
family, and school settings, including health-care facilities in communities and in 
societies in general (Gifford, 2003:3). Stigma and discrimination resulting from, home 
and family settings may lead to the following (Gifford, 2003:4): 
•	 shortened life span or increased illness in children affected by HIV because of 
neglect by caregivers; 
4 
•	 rejection of orphans by extended families, leading to child-headed households 
in the community. Caregivers may also feel that these orphaned children are 
difficult to stay with and therefore a social burden to them; and 
•	 verbal abuse, for example regular reminders from relatives that they have been 
orphaned due to AIDS) and physical or sexual abuse 
At the end of 2006, women accounted for fifty per cent of all adults living with HIV 
worldwide, and for sixty-one per cent in sub-Saharan Africa, which is an indication that 
the majority of AIDS orphans are motherless (UNAIDSIWHO AIDS Epidemic Update, 
2006: 1). Young people (under twenty-five years of age) account for half of all new HIV 
infections worldwide, which is an indication that AIDS orphans are still going to be a 
reality in South Africa because most of the persons in this age group could die untimely. 
In developing and transitional countries, seven-point-one million people are· in 
immediate need of life-saving AIDS drugs; of these, only two-point-zero-one-five million 
(28%) are receiving the drugs (UNAIDSIWHO AIDS Epidemic Update, 2006:3). 
1.2 SIGNIFICANCE OF STUDY 
In September 2003, Lewis (2007: 1), the UN Secretary-General's Special Envoy for 
HIV/AIDS in Africa spoke about the AIDS orphan problem, like this: "... in Zambia, [we] 
were taken to a village where the orphan population was described as out of control. As 
a vivid example of that, we entered a home and encountered the following: to the 
immediate left of the door sat the 84-year-old patriarch, entirely blind. Inside the hut sat 
his two wives, visibly frail, one 76, the other 78. Between them they had given bilih to 
nine children; eight were now dead and the ninth, alas, was clearly dying. On the floor .of 
the hut, jammed together with barely room to move or breathe, were 32 orphaned 
children ranging in age from two to sixteen... It is now commonplace that grandmothers 
are the caregivers for orphans". "The grandmothers are impoverished, their days are 
numbered, and the decimation of families is so complete that there's often no one left in 
the generation coming up behind. We're all struggling to find a viable response, and 
there are, of course, some superb projects and initiatives in all countries, but we can't 
seem to take them to scale". Additionally, the Executive Director of UNICEF, Carol 
Bellamy stated that: "The silence that surrounds children affected by HIV/AIDS and the 
inaction that results is morally reprehensible and unacceptable. If this situation is not 
addressed, and not addressed now with increased urgency, millions of children will 
5 
continue to die, and tens of millions more will be further marginalized, stigmatized, 
malnourished, uneducated, and psychologically damaged" (Bellamy, 2007:3). 
It is evident that AIDS orphans will continue to be a reality in South Africa and 
furthermore caregivers would continue to provide care for these orphans. However, in 
order to find viable responses to this catastrophic problem, we need to investigate other 
problems encountered by these caregivers, apart from poverty. This might help to start 
new projects or initiatives, or even take already existing projects and initiatives to scale. 
1.3 STATEMENT OF THE PROBLEM 
South Africa has the most Aids orphans in the world, according to a United Nations 
Children's Fund (2007:4) report released in January this year. According to this report, 
South Africa has approximately one-point-two million children who have lost one or both 
parents to AIDS, and it is estimated that by 2020 one in five children could be orphans if 
parental deaths continue at the same rate as seen over the past ten years. According to 
Alcorn (2007:1), AIDS orphans in South Africa suffer significantly higher levels of 
psychological distress than other orphans. A study conducted by Oxford University and 
Cape Town Child Welfare found high levels of psychological distress in AIDS orphans. 
The research team, led by Culver (2007: 1), interviewed one-thousand-and-twenty-five 
(1\1=1 025) children aged ten to nineteen years in poor neighbourhoods of Cape Town 
using a standardised questionnaire. Children orphaned by AIDS were compared with 
children orphaned by other causes, and non-orphaned children. Culver (2007:1) 
collected information on socio-demographic factors and selected poverty indicators, 
household employment, food security, social security and school access. Culver 
(2007:1) found that children orphaned by AIDS had significantly poorer psychological 
health than other children in the study, and suffered levels of post-traumatic stress 
equivalent to those of children experiencing sexual abuse. 
According to Culver's (2007:1) report, AIDS orphans were less likely to have 
psychological ill health if they lived in a household with access to social security grants, 
food security and at least one member in employment, suggesting that efforts to 
alleviate poverty could mitigate the psychological problems manifesting as depression 
and delinquency in AIDS orphans. Culver (2007:1) posits that if AIDS orphans are given 
6 
enough food, enabled to go to school, and given a social grant, it reduces depression 
and behavioural problems. This report also highlights that, in South Africa, more than 
seven-point-one million children under fourteen-years-of-age are living in poverty ­
seventy-nine per cent of those eligible - were benefiting from the child-support social 
grant by April 2006. This represents a two-thirds increase since 2004 and a twenty-fold 
increase since 2000. More than three-hundred-and-twenty-five children were benefiting 
from foster care grants in 2006. 
The above-mentioned report focused on data from 2005. It found that a total of fifteen­
pOint-two-million children around the world had lost at least one parent to HIV/Aids. 
Most of these children were in sub-Saharan Africa, and one-point-two million were in 
South Africa. United Nations Children's Fund (2007:4) report also highlights that 
orphans: 
• often lost out on schooling, food and clothing; 
• may suffer anxiety, depression and abuse; and 
• had a higher risk of exposure to HIV. 
Orphans due to Aids are not the only children affected by the epidemic. Many more 
children live in households that have taken in orphans due to Aids. The United Nations 
Children's Fund (2007:4) report therefore estimated that about two-hundred-and-forty 
South African children under fifteen were HIV-positive, a figure matched globally only by 
Nigeria. About twenty-eight per cent of these children needed antiretroviral (ARV) 
treatment but only eighteen per cent of those who needed it were getting it. From the 
foregoing findings from the literature review, it is clear that AIDS orphans can place 
strain on households. 
By 2010 more than one in five children in Botswana, Lesotho, Swaziland and Zimbabwe 
will be orphaned by AIDS (Children on the Brink, 2004:5). Alarmingly, the studies found 
that twenty per cent of households with children in Southern Africa are taking care of 
one or more AIDS orphans. About seventy-eight per cent of Zimbabwe's orphans and 
seventy-seven per cent of Botswana's had lost their parents to AIDS. Botswana, with 
twenty per cent of its children orphaned, has the highest rate of orphaning in sub­
Saharan Africa, followed closely by Zimbabwe with nineteen per cent. More than fi"fteen 
per cent of children in Lesotho, Zambia, Swaziland, Mozambique and Angola were 
7 
orphans in 2003. About sixty-three per cent of Swaziland's orphans had lost their 
parents to AIDS, as was the case with sixty per cent of Zambia's orphans. According to 
Children on the Brink (2004:6), the number of AIDS orphans worldwide had shot up 
from 11,5-million in 2001 to 15-million in 2003. 
From the latter statement it is clear that the worst may still be ahead of the world in as 
far as AIDS orphans is concerned - far too 'many parents will die as a result of AIDS. 
While not all orphaning is due to HIV/AIDS, orphaning remains the most visible, 
extensive, and measurable impact of AIDS on children. After losing parents and 
caregivers, children have an even greater need for stability, care and protection, HIV is 
a terrible disease because it starts to affect a child early in a parent's illness, and its 
impact continues through the course of the illness and throughout the child's 
development after the parent's death. 
According to the Children on the Brink (2004:7), orphans are increasingly more likely to 
be living in households headed by females or grandparents. In Zambia, for example, 
female-headed households are twice as likely to care for double orphans, children aged 
less than eighteen years who have lost both parents, as male-headed households. 
Female-headed households also take in more orphans than male-headed households. 
In South African households that have assumed responsibility for orphans, there are on 
average two double orphans in each female-headed household, while in male-headed 
households the average is around one. The burden on· grandparents and older 
caregivers is also increasing. In Namibia, for example, the proportion of double orphans
 
. and single orphans not living with a surviving parent being taken care of by
 
grandparents rose from forty-four per cent in 1992 to sixty-one per cent in 2000. In the
 
absence of their primary caregivers, AI DS orphans are more susceptible to: 
• health risks; 
• violence; 
• Exploitation; and 
• discrimination. 
A study in rural Zimbabwe (Alcorn, 2007:1) showed that young people aged sixteen to 
twenty-one years had a significant burden of psychological well being problems, with 
8 
AIDS orphans most severely affected. Fifty-one per cent of one-thousand-four-hundred­
and-ninety-five (1\1=1495) young people recruited as part of a larger study were found to 
have substantial mental ill health as measured by a locally validated psychological well 
being scale, and ten per cent said that they had thought about committing suicide in the 
previous week. Psychological well-being symptoms were associated with being 
stigmatised by others (72% vs 34%), having to work more than others (37% vs 17%), 
and being given less food (17% vs 6%) (all p=0.0001). 
Maternal orphanhood was significantly associated with mental ill health. Cases had 
lower self-esteem as judged by responses to five questions and were more likely to be 
sexually active (66% vs 34%). Cases were also more likely to report forced sex or rape 
(7% vs 3%). Alcohol and drug use was higher among cases (60% vs 40%). 
DeSilva (2007:1) and Culver (2007:1) assert that caregivers of AIDS orphans also 
report significantly poorer health than caregivers of otrler children. A study by the 
Boston University School of Public Health Centre for International Health and 
Development (Alcorn, 2007:1) found that the caregivers of AIDS orphans were 
significantly more likely to report ill health and to describe their health as poor, 
suggesting the high burden being placed on households that are caring for orphaned 
children. The research group found that the carers of orphans were older (50 years vs 
45 years), less likely to be married or cohabiting, more likely to have cared for a sick 
adult child in the previous year, and likely to be caring for a larger number of children 
than the caregivers of non-orphans. The researchers concluded that caregivers of 
orphans, already under strain, are more vulnerable than others in society. 
In the light of the foregoing literature review findings and DeSilva and Cluver's 
assertions, there is a need for the strategic framework for the protection, care and 
support of orphans and vulnerable children living in a world with HIV/AIDS as the best 
hope for pulling orphans and other vulnerable children back from the brink of despair, 
poverty, ill-health, uneducatedness. The strategy calls for: 
•	 the strengthening of the capacity of caregivers by providing economic, 
psychological and other support; 
9 
•	 the mobilising and supporting of community-based responses to provide long­
term assistance to vulnerable households; 
•	 ensuring that orphans and vulnerable children have access to essential services, 
including education, health care and birth registration; and 
•	 ensuring that governments protect the most vulnerable children through 
improved policies and legislation. 
Having highlighted in the first paragraph of this section that South Africa has the most 
AIDS orphans in the world, this researcher has realized that there is a need to conduct 
research on the lived experiences of caregivers of AIDS orphans and ways in which the 
caregivers address the situation in. which they find themselves. Little has been 
documented on the plight· of extended family members such· as grandparents,· elder 
children who themselves are not yet matured adults, aunts, uncles and others. that take 
care for AIDS orphans. lVIost researchers place more emphasis on the impact of 
HIV/AIDS on children and educators, and little emphasis has been placed on the impact 
of caring for AIDS orphans on the caregivers. For example, the emotional impact 
suffered by caregivers, as a result of having to listen to the abuses these orphans 
experience at schools or even in their neighbourhoods because of the death of their 
parents. The economic impact, due to shortage or insufficient government social grants 
may lead to poor caring, and under severe conditions, may even cause the death of 
those children who are themselves infected by the HIV virus. Therefore, the following 
questions arise: 
•	 What is the family background of caregivers of AIDS orphans? 
•	 What is the general emotional impact of caring for AIDS orphans on caregivers? 
•	 What is the health impact of caring for AIDS orphans on caregivers? 
•	 What is the extent of financial impact of caring for AIDS orphans on caregivers? 
•	 What is the impact of caring for AIDS orphans on the .social life of caregivers? 
•	 Can a ecosystemic programme be proposed for helping caregivers of AIDS 
orphans give the best care to these children who may be vulnerable to 
discrimination, stigmatization, streetism (that is, children ending-up on the 
streets) and poverty? 
10 
1.4 AIMS OF THE STUDY 
The aims of this study were to: 
• investigate the family background of caregivers of AIDS orphans; 
> 
•	 investigate the general emotional impact of caring for AIDS orphans on 
caregivers; 
) • investigate the health impact of caring for AIDS orphans on caregivers? 
•	 investigate the extent of financial impact of caring for ArOS orphans on 
caregivers; 
•	 investigate the impact of caring for AIDS orphans on the social life of caregivers; 
•	 propose an ecosystemic programme for helping caregivers of AIDS orphans give 
the best care to these children who may be vulnerable to discrimination, 
stigmatization, streetism and poverty. 
1.5 THE RESEARCH METHODS USED TO CONDUCT THIS STUDY 
A literature review and the qualitative empirical research method was used to answer 
questions raised in section 1.3 above, and to achieve aims of this study, which were 
mentioned in section 1.4 above. In the following paragraphs these research methods 
are briefly discussed. 
1.5.1 Literature review 
A literature review was done to acquire understanding of the theoretical framework of 
caregiving orAIDS orphans. To achieve this, all the available data bases (both national 
and international) were consulted during t~le study, for example, the NEXUS, SABII\lET 
- On-line, the EBSCOHost web and various other web-based sources as well as a 
DIALOG search were conducted to gather recent (from 1980-2007) studies on the 
subject. The following key concepts/words were used in the search: caregivers, 
caregiving, AIDS orphans, emotional problems, health problems, social problems, 
ecological and systems theories. 
11 
It ought to be mentioned that an on-line internet search was conducted in 2006 and 
2007 on the above-mentioned key words. 
1.5.2 Qualitative research 
Hie researc~1 method used in this research is mainly qualitative. Coleman (1998: 183), 
Verma and Mallick (1999:6) and Pogrebin (2003:4) define qualitative research as an 
inquiry process of understanding a social or human problem based on building a 
complex and holistic picture formed with words, reporting detailed views of informants 
and conducted in a natural setting. Denzin and Lincoln (1998: 17) posit that one of the 
chief reasons for conducting qualitative research is that: 
•	 not much ~Ias been written about the topic or population being studied; 
•	 the research is exploratory; and 
•	 the research seeks to pay attention to the ideas of informants and build a picture 
based on t~leir ideas. 
This method is deemed relevant to this research as it may afford the participants the 
opportunity to clearly state their opinions regarding their problems (Neuman, 1997:196). 
A qualitative research method was used to collect and analyze empirical research data 
and describe the meanings of the experiences the caregivers go through. 
A purposive sample of twenty-nine participants (N=29) was interviewed. It is apparent 
that there are more caregivers than might be expected from a random sample. 
However, this sample is a purposive sample, selected to be maximally informative of a 
particular group, which is caregivers. The interviews were tape recorded in the local 
African languages such as IsiZulu, SeSotho, Setswana and IsiXhosa, transcribed 
verbatim, and translated into English. 
1.5.3 A measuring instrument used for the qualitative research method 
Self-developed interview schedules were used as empirical research data-gathering 
tools for administration during the interviewing process. An interview is a manner of 
finding out what is in or on someone else's mind, his or her individual lived experiences 
12 
and knowledge, opinions, beliefs, and demographic d~ta (Reason & Bradbury, 
2001 :350). It is conducted face-to-face with the participants. Piantanida and Garman 
(1999:165) and Wragg et a/. (2000:15) further assert that the interview may be primarily 
used as a strategy to collect narrative data and also for the researcher to develop 
insight into the way participants interpret the idea of their social context. The advantage 
of an interview is that it provides feedback immediately. Semi-structured interviews were 
conducted in t~lis research to elicit information from t~le participants. 
1.5.4 Demographic information 
This research was conducted in the Gauteng Province's Vaal Triangle and the focus 
was on the population sample in Vanderbijlpark and Vereeniging districts. Sampling in 
Vanderbijlpark districts was done in Vabderbijlpark suburbs, Bop~lelong and Sebokeng 
townships. Sampling in Vereeniging districts focused in the Vereeniging suburbs. T~le 
exact total populations of caregivers in Vanderbijlpark and Vereeniging are not known. 
The sample population was drawn, mainly from cases supplied by the social workers 
and schools. The researcher personally knew only two cases. 
The sample population for this research consists of: 
•	 eleven caregivers of w~lich two were grandparents (n=2), two children-headed 
families (n=2), one uncle (n=1), two aunts (n=2), three guardians (n=3), one­
sister-in-law (n=1); 
•	 two family member (n=2) 
•	 nine non-governmental org~nization's advocates (n=9); and 
•	 seven educators (n=7). 
The eleven caregivers are representative of different groups of caregivers. The two 
family members, nine non-governmental organization's advocates and seven teachers 
were necessitated by the need to verify some ot' t~le information given by some 
caregivers. 
1.6 CHAPTER DIVISION 
The chapter division of this research is as follows: 
13 
•	 Chapter one provides an introduction, statement of the problem, significance of 
study, aims of study, and research methods of this dissertation. 
•	 Chapter two consists of a literature review on the nature of t~le psychological, 
social and economic impact of HIV/AIDS on caregivers of learners orphaned due 
to HIV/AIDS 
')	 • Chapter three describes the empirical research design. 
•	 Chapter four deals wit~1 the analyses and the interpretations of the empirical 
research data collected dUring interviews. 
•	 Chapter five provides findings from the empirical research, recommendations 
and suggestions relevant to the ecosystemic programme for empowering 
caregivers of learners orphaned as a result of AIDS to provide the best care for 
these learners. 
1.7 CONCLUSION 
This chapter provided an orientation to the research. The next chapter provides 
literature review on HIV/AIDS, orphanage and caregivers. 
CHAPTER TWO 
LITERATURE REVIEW ON HIV/AIDS, AIDS ORPHANS AND
 
CAREGIVERS
 
2.1 INTRODUCTION 
Zaba, Whiteside and Boerma (2004:S1-S7) investigated about the demographic and 
socia-economic impact of the HIV epidemic in sub-Saharan Africa. They looked at the 
impact of the HIV epidemic on human mortality, policy-making and numbers of orphans 
that are growing in sub-Saharan Africa. It was also found t~lat usually HIV/AIDS affects 
prime-age adults, with the consequences that th~ probability of afi'l'teen-year old dying 
before reaching the age of sixty-years has risen dramatically, from a range of ten per 
cent to thirty per cent in the mid-1980s, to a range of thirty per cent to sixty per cent at 
the turn of the twentieth century. It is thus indicated that many school~going children 
would have lost a father, mother or even both parents before they themselves reach 
adulthood. 
With the spread of what is referred to in South Africa as informal settlements, there are 
many young men and women living in these communities under very difficult and trying 
social conditions; Many of these young people, of which the majority is young women, 
are not working and their means of survival is getting involved in sexual relationships 
with married men, as is evident from TV documentaries. It is shown that it is through 
these sexual relations~lips that many of these young parents contract HIV/AIDS and 
end-up dying through AIDS related illnesses such as opportunistic diseases such as, 
inter alia, weight loss; dry cough; recurring. fever or profuse night sweats; profound and 
unexplained fatigue; swollen lymph glands in the armpits groin, or neck; diarrhoea that 
lasts for more than a week; white spots or unusual blemishes on the tongue, in the 
mouth, or in the throat; red, brown, pink, or purplish blotches on or under the skin or 
inside the mouth, nose, or eyelids; memory loss, depression, and other neurological 
disorders; tuberculosis, pneumonia, gastro-enteritis, meningitis; and cancer which 
seriously affect the psychological and the physical well-being of human beings 
(Kwatubana, 2005: 1). This state of affairs results in their c~lildren being orphaned after 
their passing away. 
15 
The literature review (Foster, 2002:3) reveals that many AIDS orphans end up on the 
streets because their parents have died. They have either decided to live in the streets 
because they did not want to live with their caregivers. It is also predicted that by 2010, 
there will be around 15.7 million AIDS orphans in Sub-Saharan Africa (Avert, 2007:1). 
Children affected by HIV/AIDS are also forced to bear the trauma and hardship. For 
example, not only does HIV/AIDS mean children lose their parents or guardians, but 
sometimes it means that they lose even their childhood as well. Many of these affected 
children in sub-Saharan Africa have entered the world of work to supplement family 
income lost when an adult becomes ill or dies due to the HIV/AIDS epidemic (Avert, 
2007:4). Some of these children without a strong community or family support structures 
end up in the streets in search of work to support themselves or their siblings who are 
either left in the care of relatives or are left alone at home. Child labour presents these 
children with numerous risks for both sexual exploitation and HIV/AIDS infections. 
The International Labour Organisation International Programme on the Elimination of 
Child Labour (ILO/IPEC) commissioned qualitative rapid assessments (QRAs) in four 
countries in sub-Saharan Africa, namely, South Africa, the United Republic of Tanzania, 
Zambia and Zimbabwe in the year 2001 (Amorim & Piprel, 2003:2). The objective of this 
study was to better understand the complex relationships arising from the impact of the 
HIV/AIDS pandemic on child labour and the risks of HIV/AIDS infections to working 
children. The findings were expected to assist ILO/IPEC with further operational 
planning regarding policy and programme initiatives to eliminate child labour. The 
following. three basic questions of the QRAs teams about the relationships between 
HIV/AIDS and child labour were asked: 
•	 Are children entering the labour market, including the informal sector, as the 
result of the impact of HIV/AIDS on their families? 
•	 Are working children at risk of sexual exploitation and HIV infection? 
•	 Is the HIV/AIDS pandemic imposing a "care burden", such as marked 
increase in domestic work and household chores on children? 
Without strong family support, which is be provided by caregivers, many vulnerable 
children orphaned due to HIV/AIDS may escape the family safety net and be exposed to 
abuse in the form of child labour. 
16 
') 
) 
) 
The ILO/IPEC (Amorim & Piprel, 2003:2) report provided the following evidence of the 
linkage between HIV/AIDS and child labour, which were: 
•	 firstly, the linkage has been established for children who, through their 
involvement in the labour force, are at risk of becoming HIV infected and to suffer 
from AIDS and related illnesses. The ILO/IPEC gave the following reasons for 
the children's susceptibility to HIV/AIDS: 
o	 once in the workforce, the children may find life so precarious that survival 
sex, Le. exchanging sex for food, clothing, or small amounts of money, 
becomes an option; 
o	 girls, and boys, may be drawn into sex work; 
o	 children may be exploited because of their vulnerability due to age, 
location or gender; and 
o	 if HIV infected, children are less likely to have access to proper nutrition, 
health care and drug treatments for opportunistic infection and AIDS. 
•	 secondly, children who are from households affected· by HIV/AIDS often must 
enter the labour force because families cannot meet their basic needs without 
contributions from the children. As a result, children may be subjected to harsh 
and exploitative conditions and sexual abuse. The effects occur under the 
following conditions: 
o	 children are withdrawn from school to reduce family expenses, and then 
seek work; 
o	 children are placed with extended family members, but are 
expected/forced to work; and 
o	 children flee new family arrangements because of depression, neglect or 
exploitation, and have to work. 
The ILOIIPEC (Amorim & Piprel, 2003:2) study also found that tt"le HIV/AIDS pandemic 
compounds the challenge of reducing child labour by increasing the: 
•	 number of children in the labour force and vulnerable to exploitation; 
•	 pressure on both households and the children themselves to have the children 
earn income instead of attending school [Thus rendering SASSA Act (84/1996) 
ineffective in the case of South Africa.]; 
17 
•	 demands on pUblic and private services, notably the delivery of effective health 
care for children and adolescents and, in the case of South Africa, grants for 
children and caregivers; 
•	 burdens on community groups and institutions assisting caregivers and 
vulnerable children; and 
•	 the risk that vulnerable children will engage in survival sex, thereby increasing 
their risk of HIV infection. 
The following major reasons, which.relate to HIV/AIDS pandemic, were given: 
•	 the death of a parent, or the disappearance of the main income earner; 
•	 the increased burden on the extended family of caring for children of households 
affected by HIV/AIDS; 
•	 worsening economic conditions, nationally or locally; 
•	 new poverty; 
•	 the need to meet basic needs, especially that of food; 
•	 providing support for themselves or siblings; and 
•	 paying school fees. 
Gerntholtz and Richter (2004:910) reported in 2002 that 13% of children aged between 
two and fourteen years in South Africa had lost a mother, a father or both. Gemtholtz 
and Richter (2004:910) reasoned that although there was no research examining the 
impact of HIV on the number of children who have been abandoned, anecdotal 
evidence suggests that children's homes are seeing steep increases in the number of 
children requiring care, and also many of those were infected. In fact, it was reported in 
2004 that South Africa's child welfare system is under huge pressure to provide for the 
number of children orphaned by HIV/AIDS and seeking foster care (van Eyssen, 
2004:4). It was also quoted in the same newspaper that the Actuarial Society of South 
Africa projects that by the end of 2005 close to one million children will be orph.aned by 
the epidemic. It was estimated in 2004 that 18 percent of the country's children are 
Aids orphans and the Medical Research Council predicted that at least 5.7 million 
children could lose one or both parents by 2015. 
18 
Gerntholtz and Richter (2004:910) also cited the emergence of an increase in informal 
"1	 caregivers, who are classified as grandparents, aunts, uncles, siblings or sympathetic 
members of the community. These informal caregivers are not aware of the need to 
formalise the care relationship and those who do attempt to foster or adopt children in 
their care face a lengthy process administered by an increasingly overstretched social 
services system. These caregivers are therefore not recognised by law to give consent 
needed for the medical treatment of these children. The worst scenario is in the case 
where for example, the children would need antiretroviral therapy (ART) and this would 
rise to the unfortunate state of the affairs in which health worker, in keeping with the 
provisions of the Act and common law, would have to apply to the Minister of Social 
Development or the High Court for special permission to administer this treatment. 
Gerntholtz and Richter (2004:910) point the fact that with an increasing number of 
children being orphaned and abandoned by parents with HIV/AIDS, and in time 
requiring ART if they have contracted the virus, it is clear that the current legal 
arrangement creates an intolerable situation. 
The emergence of community/home-based care programmes, which are often 
organised by people living with HIV/AIDS, has become one of the outstanding features 
of the epidemic (AVERT, 2005:2). These community-bases care programmes offer an 
affordable option for the care of people affected and infected with the HIV/AIDS 
epidemic. These kinds of programmes have been used, especially in South Africa, to 
get information on the number of children who have become orphans, as well as tracing 
the orphanage homes, foster homes or relatives where these children are placed. It is 
estimated that at the end of 2001, eleven million children in sub-Saharan Africa should 
had been orphaned due to the loss of one or both parents because of HIVIAIDS 
(Amorim & Piprel, 2003:1). 
This state of affairs has led to a global meeting to discuss the Demographic and Socio­
economic Impact of the HIV/AIDS pandemic (ZABA, WHITESIDE & BOERMA, 
2004:S1), which was held in Durban, South Africa, on 26-28 March 2003. The evidence 
of the impact of the HIV/AIDS pandemic presented in this meeting revolved mostly 
around sub-Saharan Africa and highlighted that with an estimated 26.6 million, HIV 
infections out of the global total estimate of 40 million by end-2003, and with an adult 
HIV prevalence at least ten times higher than in most other parts of the world, it was 
19 
clear that the magnitude of the impact of HIV/AIDS in sub-Saharan Africa on the 
population and economies is bound to be of an astronomical scale. 
2.2	 THE LATEST HIVIAIDS GLOBAL STATISTICS AND THE HAVOC IT CAUSES IN 
THE WORLD 
The following latest statistics on the global effects of the epidemic of HIV/AIDS were 
pUblished by UNAIDSIWHO in November 2007, and refer to the end of 2007. 
Table 2.1: 2007 world AIDS statistics 
Ivariables !Estimate Range I 
IpeoPle living with HIV/AIDS in 2007 ... 133..2 million 30.6-36.1. millionl 
Adults living with HIV/AIDS in 2007 30.8 million 28.2-33.6 million 
Women living with HIV/AIDS in 2007 15.4 million 13.9-16.6 million 
IChildren living with HIV/AIDS in 2007 .12.5 million 12.2-2.6 million 
IpeoPle newly infected with HIV in 2007 12.5 million 1.8-4.1 million 
IAdUlts newly infected with HIV in 2007 12.1 million 1.4-3.6 million 
Children newly infected with HIV in 2007 0.42 millionl 0.35-0.54 million 
IAIDS deaths in 2007 12.1 million 11.9-2.4 million 
IAdult AIDS deaths in 2007 11.7 million 11.6-2.1 million 
IChild AIDS deaths in 2007 10.33 million 10.31-0.38 million 
Source: (UNAIDSIWHO. 2007) 
These figures suggest that there are more children being orphaned due to high adult 
deaths in 2007. In the light of Table 2.1 above, the global picture of the effects of the 
epidemic of HIV/AIDS on humankind could also be graphically represented in order to 
get a clearer picture of the escalation of the epidemic, which is: 
Figure 2.1: Location of AIDS graphically represented 
20 
:ss 
~o 
25 
•ii:::::l:' V3
'C.:(!l III1 I \IJj~~~ ::::::::::::j !::'::'::::j:09 j1m1m~~~ :E 1~ ·::i:~ilij 
1:~ ., 
~~:l!ilI
 Ii I:1~ jjj~~j~jl (} :. I I
;''''.~l;! :;~.~ ~.~i ~$~~~: ~'~'9)~. ~~$ ~~~tj· ~~f?7 ~~~ .t:S~~~ ~%iJ Jl}JH. ?t.{l~ :;.;:t~::!=~~ ~~'U¢ ~lJI,}!j~$-~ $'..®"'l' 
Source: (UNAIDSIWHO, 2007) 
Figure 2.1 above shows that the number of people living with HIV has risen from around 
eight million in 1990 to more than thirty-three million in 2007, and is still growing. 
The world's regional statistics for HIV/AIDS at the end of 2007 for adults aged between 
fifteen and forty-nine years, who were living with HIV/AIDS, was as follows: 
Table 2.2: 2007 Regional statistics for HIV/AIDS 
21
 
Region Adults 
children 
and 
living 
Adults and 
children with 
Adult 
prevalenc 
Deaths 
adults 
of 
and 
with newly e children 
HIV/AIDS infected 
Sub-Saharan Africa 22.5 million 1.7 million 5.0% 1.6 million 
North Africa and Middle East 380,000 35,000 0.3% 25,000 
South and South-East Asia 4 million 340,000 0.3% 270,000 
East Asia 800,000 92,000 0.1% 32,000 
Oceania 75.000 14,000 0.4% 1,200 
Latin America 1,6 million 100,000 0.5% 58,000 
Caribbean 230,000 17,000 1.0% 11,000 
Eastern Europe and Central 1.6 million 150,000 0.9% 55,000 
Asia 
Western and Central Europe 760,000 31,000 0.3% 12,000 
North America 1.3 million 46,000 0.6% 21,000 
Global Total 33.2 million 2.5 million 0.8% 2.1 million 
Source: (UNAIDSIWHO, 2007) 
Table 2.2 depicts that around sixty-nine percent of people living with HIV are in sub­
Saharan Africa. Table 2.2 also depicts that, during 2007, around two and a half million 
adults and children became infected with HIV, the virus that causes AIDS, and that, by 
the end of 2007, an estimated thirty-three-point-two million people worldwide were living 
with HIVIAl DS. The year (2007) also saw two-point-one million deaths from AIDS, 
despite recent improvements in access to anti-retroviral treatment. 
From Tables 2.1 and 2.2 it can be deduced that AI DS is responsible for leaving vast 
numbers of children across Africa without one or both parents. Table 1 above shows the 
countries with the largest numbers of AIDS orphans. 
In some countries, a larger proportion of orphans have lost their parents to AIDS than to 
any other cause of death - meaning that, were it not for the AIDS epidemic, these 
children would not have been orphaned. The second table shows the countries in which 
the children who lost their parents to AIDS make up the highest proportion of the total 
national number of orphans. 
Most of the AIDS orphans who live outside of Africa live in Asia, where the total number 
of orphans - orphaned for all reasons - exceeds seventy-three million. 
As the number of orphans varies between countries, so it varies between different 
regions within those countries. Particular areas may have higher or lower percentages 
of orphans, largely depending on the local HIV prevalence rates. There can also be 
22 
substantial differences between rural and urban areas. 
The age of orphans, however, is fairly consistent across countries. Surveys suggest that 
overall about fifteen percent of orphans are zero to four years of age, thirty-five percent 
are five to nine years of age, and fifty percent are ten to fourteen years of age. 
The scale of the orphan crisis is somewhat masked by the time lag between when 
parents become infected and when they die. If, as expected, the number of adults dying 
from AIDS rises over the next decade, an increasing number of orphans will grow up 
without parental care and love. 
Tile increased spiral of adult deaths in so many countries means that the number of 
children orphaned each day is expanding exponentially. Africa is staggering under the 
load. 
2.3 THE IMPACT OF HIVIAIDS ON CHILDREN 
The biggest losers in the HIV/AIDS epidemic that has gripped the world are children. 
For example, according to the United Nations Children's Fund (2007:4) report, there is a 
total of fifteen-point-two-million children around the world who have lost at least one 
parent to the HIV/AIDS epidemic. Most of these children are in sub-Saharan Africa ­
and one-point-two-million were in South Africa. These are not the only South African 
orphans. This United Nations Children's Fund (2007:6) report estimated that two-point­
five-million South African children under the age of eighteen years had lost at least one 
parent due to any cause, with about four-hundred-and-fifty-thousand having lost both 
parents. 
For those countries with data, according to this United Nations Children's Fund (2007:6) 
report, only seven had children who had lost both parents, that is China, Democratic 
Republic of Congo, Ethiopia, India, Nigeria, Uganda and Zimbabwe. 
The United Nations Children's Fund (2007:6) report highlights that orphans often loose 
out on schooling, food and clothing, they may suffer anxiety, depression and abuse, and 
they have a higher risk of exposure to HIV. 
Orphans due to AIDS are not the only children affected by the epidemic. Many more 
children live with parents who are chronically ill, live in households that have taken in 
23 
orphans due to AIDS or have lost teachers and other adult members of the community 
to AIDS (United Nations Children's Fund, 2007:8). 
This United Nations Children's Fund (2007:9) report estimated that: 
•	 about two-hundred-and-forty thousand South African children under fifteen­
years of age were HIV-positive, a figure matched globally only by Nigeria. 
About twenty-eight per cent of these needed anti-retroviraI treatment but only 
eighteen per cent of those who needed it, were getting it; 
•	 about one third of an estimated two-hundred-fifty-thousand HIV-infected 
pregnant mothers received anti-retroviral treatment. About a third received 
anti-retroviral treatment for prevention of mother-to-child transmission, which 
UNICEF said showed progress as this had increased from twenty-two per 
cent the year before; and 
•	 only about sixty-four thousand of the babies born to HIV-infected mothers ­
about a quarter of them - started the medication cotrimoxazole prophylaxis, 
to prevent opportunistic infections that can be fatal. 
The United Nations Children's Fund (2007:9) report said the virus progressed rapidly in 
children, with about a third dying before their first birthday and half of these children 
dead before their second birthday. In 2006 alone about three-hundred-and-eighty­
thousand children died around the world from AIDS-related causes. The vast majority of 
these deaths were preventable, either through treating opportunistic infections with 
antibiotics or through antiretroviral treatment. The World Health Organisation 
recommends giving the medication cotrimoxazole to.,HIV-positive children an.d to babies 
born to HIV-positive mothers. Some of these children may have been under the care of 
caregivers, and thus may lead to these caregivers experiencing trauma. 
It is interesting to note that this United Nations Children's Fund's (2007:6) report 
highlights that South Africa was one of a few countries which had been able to intensify 
HIV treatment of children by integrating this into HIV sites for adults. 
Antiretroviral treatment for children now cost about sixty-dollars a year (about four­
hundred-and-twenty-rands) (United Nations Children's Fund, 2007:4). The United 
Nations Children's Fund (2007:4) estimates that five per cent of South African boys 
24 
aged between fifteen and twenty-four years and fifteen percent of the girls that age were 
HIV-positive. According to this report, about eighteen per cent of South Africa's adults 
were estimated to be HIV-positive. 
The United Nations Children's Fund (2007:4) said child grants helped to allerviate 
poverty. For example, in Sout~1 Africa, for example, the country with the largest number 
of orphans due· to Aids, more than seven-point-one-million children under fourteen living 
in poverty - seventy-nine per cent of those eligible - were benefiting from the child­
support grant by April 2006. This represents a two-thirds increase since 2004 and a 
twenty-fold increase since 2000. More than 325 000 children were benefiting from foster 
care grants in 2006. 
By 2014, according to the United Nations Children's Fund's (2007:9) report, the above 
mentioned figure of AI DS orphans in South Africa, which is projected on current 
infection and death rates, could be eleven-point-five million. It is not surprising to note 
that, both in the whole world and world's regions, the figures on HIV infections and AIDS 
deaths have seen more than fifteen million children under the age of eighteen years 
being orphaned. More than twelve million of these children live in Sub-Saharan Africa, 
where it is currently estimated that nine per cent of all children have lost at least one 
parent to AIDS. As HIV infections become increasingly common among the adult 
population of t~le region, the brunt of HIV-associated mortality is expected to occur 
- - - - ~ "....- • - .". - - ..:.. - -' ._- - - -- _... -. -- - _.,. - - - - - - _. - ~ - - - - - 0" _ _ __ 
wit~lin this decade; and as a result, millions of children will lose parents to AIDS. By 
2010, it is predicted that there will be around fifteen-point-seven million AI DS orphans in 
Sub-Saharan Africa. 
If t~le above situation is not addressed, and not addressed at this stage with increased 
urgency, tens of millions of children will be orphaned, marginalized, stigmatized, 
malnourished, uneducated, and psychologically damaged (United Nations Children's 
Fund's, 2007:9). There is an urgent need to help, care and protect these children. In 
many countries, a variety of initiatives are now taking place to help AIDS orphans. The 
number of children requiring support is increasing rapidly, though, and in many 
instances the increase in response is not keeping up wit~1 the increase in need. Social 
support responses need to be scaled up, and this is going to need increases in both 
financial resources and commitment over the next few years. 
25 
The other three of the African countries that have been worst affected by HIV and AIDS 
are Botswana, Malawi, and Zambia (United Nations Children's Fund's, 2007:9). In 
Botswana, it is estimated that 120,000 children had lost their parent(s) to AIDS by the 
end of 2005. As a result of this, the Botswana government established a National 
Orphan Programme in April 1999 to respond to the immediate needs of orphaned 
children, and a comprehensive policy for helping AIDS orphans was established under 
this Programme. The government currently runs a 'food basket' scheme, where a 
basket of food is provided to orphaned households once a month. Orphans are also 
provided with school uniforms and are subsidised for transportation fees to get to 
school, among other things. By December 2005,fifty-thousand-and-five-hundred-and­
fifty-seven orphans were registered to receive support from the government. 
An example of the programme in action is the rural district of Bobirwa, where district 
authorities have contracted the Bobirwa Orphan Trust to deliver essential seNices to 
orphans in the area (United Nations Children's Fund's, 2007:7). The Trust is made up of 
community volunteers and government paid employees, including social workers and 
family welfare educators. Members of the Trust register orphans. in the district and 
identify their needs through home visits, schools and churches. They also initiate 
community-based foster placements, and support the provision of food and clothing to 
orphans through local groups. On top of this, needy orphans are assisted with blankets, 
counselling; toys,- bus fares-to and from· school, .school- uniforms and othel" educational . 
needs. 
Traditionally, orphaned children in Botswana have been cared for by extended families. 
However, due to social and economic strain some families are no longer willing - or 
indeed able - to do this. Even when they are, the level of care orphans receive is 
sometimes unacceptable. In some cases, families have been known to take on orphans 
merely to benefit from government orphan packages (United Nations Children's Fund's, 
2007:7). 
A variety of different community organisations do now provide support for orphans, and 
the government does encourage communities to provide care for orphans within the 
community, and to rely on institutional care only as a last resort (United Nations 
Children's Fund's, 2007:7). 
26 
The Kgaitsadi Society in Gabarone is an example of a community organisation set up to 
care for and educate AIDS orphans (United !\lations Children's Fund's, 2007:8). 
Established in 2002, it assists with their basic needs and provides basic and primary 
school level education through a flexible school programme. It also provides support for 
children caring for family members and for those that are working. Other examples of 
community organisations are the Maun Counselling Centre, and the House of Hope in 
Palapye both of which provide day care support for orphans. 
AIDS, extreme poverty and food shortages have all taken their toll on Malawi in recent 
years. By the end of 2005, it was estimated that Malawi Ilad over half a million children 
orphaned by AIDS (United Nations Children's Fund's, 2007:8). 
As early as 1991, the Government of Malawi established a National Orphan Care Task 
Force (United Nations Children's Fund's, 2007:8). The Task Force is made up of 
various representatives and organisations, which are· responsible for planning, 
monitoring and reVising all programmes on orphan care. One year later, in 1992, 
National Orphan Care Guidelines were established. The guidelines serve as a broad 
blueprint to encourage and co-ordinate regional and community efforts. The Task Force 
has also established a sub-committee that is reviewing existing laws and legal 
procedures to provide greater protection to vulnerable children. 
An important aspect of the government's strategy has been to promote and support 
community based programmes. In both rural and urban areas across Malawi, 
communities are developing a variety of ways to cope with the growing crisis of AIDS 
orphans. In many villages orphan committees have been established to monitor the 
local situation and to take collective action to assist those in need (United Nations 
Children's Fund's, 2007:8). 
The Government furthered its commitment to AIDS orphans in June 2005 when their 
President launched The National Plan of Action for Orphans and Vulnerable Children. 
This plan, which is due to run until 2009, aims to increase access to essential services ­
such as education, health, nutrition, water and sanitation - amongst AIDS orphans and 
other vulnerable children. It also aims to help families and communities provide support 
for such children (United Nations Children's Fund's, 2007:8). 
27 
The large number of children losing parents to AIDS in Malawi presents a daunting 
challenge to both the government and regional communities (United Nations Children's 
Fund's, 2007:8). A severe lack of human and financial resources continues to hold back 
Malawi's fight against AIDS, including efforts to support AIDS orphans. Orphans have 
little food, few clothes, no bedding and no soap and as a whole, community care 
because of HIV/AIDS is overwhelmed and breaking down. 
In Zambia the estimated number of children orphaned because of AIDS is seven­
hundred-and-ten thousand (United Nations Children's Fund's, 2007:8). The AIDS 
epidemic in Zambia is among the worst. in the world. Under the twin pressures of 
poverty and disease, many extended families (which traditionally care for vulnerable 
children in Zambia) are breaking down. 
It is very hard to find a family in Zambia (United Nations Children's Fund's, 2007:8) that 
has not been personally touched. It is very hard to find a child that has not seen or 
witnessed a deat~1 related to HIV/AIDS . The extended family in the community 
structure, have really broken under the weight of the HIV/AIDS epidemic and poverty, 
and when the burden becomes too great, families are unable to cope any more, and as 
a result, tremendous numbers of orphans and children who are no longer able to be 
cared for by their extended family are noticed. In the midst of all that, it is seen that 
within the communities themselves and within extended families there are truly heroic 
efforts to absorb the children, to work with them, to give them the nurturing and caring in 
the environment, as well as in their own communities because it is so necessary for this 
next generation. 
Child-headed households, once a rarity in Zambia (United Nations Children's Fund's, 
2007:8), are now increasingly common. Unfortunately, formal and traditional 
inheritance, land ownership and ~Iealth policies have not kept up with their needs. In 
July 2006, Zambia's Health Minister, Ronnie Shikapwasha, revealed that six percent of 
the country's AIDS orphans are homeless and that less than one percent lives in 
orphanages (United Nations Children's Fund's, 2007:8). He stressed that more needs to 
be done to support AIDS orphans, through better access to education, health care, 
nutrition, and food, among other things. 
28 
One multi-sectoral project in Zambia (United Nations Children's Fund's, 2007:9) is 
Strengthening Community Partnerships for the Empowerment of Orphans and 
Vulnerable Children (Scope-OVC). This support programme is implemented by 
CARElZambia with help from Family Health International (FHI) and funding from the 
United States Agency for International Development (USAID). Between 2003 and 2004, 
this project offered life-sustaining care and support services for over 81,709 children. 
The aim of the project is to keep siblings together and children within extended families 
and communities. Scope-OVC develops district and community level capacity and 
resources to respond to the needs of orphans and vulnerable children. Scope also tries 
to build partnerships and networks and sustain existing ones within community-based 
organizations that provide care and support for children. 
These inteNention strategies may go a long way in helping ease the financial burden on 
caregivers. 
The emotional problems faced by AIDS orphans are discussed below (United Nations 
Children's Fund, 2007:9). 
2.3.1 Emotional impact 
Children whose parents are living with HIV often experience many negative changes in 
their lives and can start to suffer neglect, including emotional neglect, long before they 
are orphaned. Eventually, they suffer the death of their parent(s) and the emotional 
trauma that results. They may then have to adjust to a new situation, with little or no 
support, and may suffer exploitation and abuse. 
In one study carried out in rural Uganda, high levels of psychological distress were 
found in children who had been orphaned by AIDS. Anxiety, depression and anger were 
more found to be more common among AIDS orphans than other children. Twelve 
percent of AIDS orphans affirmed that they wished they were dead, compared to three 
percent of other children interviewed. 
These psychological problems can become more severe if a child is forced to separate 
from their siblings upon becoming orphaned. In some regions this occurs regularly: a 
survey in Zambia showed that 56% of orphaned children no longer lived with all of their 
29 
siblings. 
2.3.2 Household impact 
The loss of a parent to AIDS can have serious consequences for a child's access to 
basic necessities such as shelter, food, clothing, health and education. Orphans are 
more likely than non-orphans to live in large, female-headed households where more 
people are dependent on fewer income earners. This lack of income puts extra pressure 
on AIDS orphans to contribute financially to the household, in some cases driving them 
to the streets to work, beg or seek food. 
The majority of children who have lost a parent continue to live in the care of a surviving 
parent or family member, but often have to· take on the responsibility of doing the 
housework, looking after siblings and caring for ill or dying parent(s). Children who have 
lost one parent to AIDS are often at risk of losing the other parent as well, since HIV 
may have been transmitted between the couple through sex. 
2.3.3 Education 
Children orphaned by AIDS may miss out on school enrolment, have their schooling 
interrupted or perform poorly in school as a result of their situation. Expenses such as 
school fees and school uniforms present major barriers, since many orphans' caregivers 
cannot afford these costs. Extended families sometimes see school fees as a major 
factor in deciding not to take on additional children orphaned by AIDS. 
AIDS orphans may also leave school to attend to ill family members, work or to look 
after young siblings. Even before the death of a parent, children may miss out on 
educational opportunities. 
Outside of school, AIDS orphans may also miss out on valuable life-skills and practical 
knowledge that would have been passed on to them by their parents. Without this 
knowledge and a basic school education, children may be more likely to face social, 
economic and health problems as they grow up. 
Boler and Jellema (2005:11-12) best described education as a social vaccine, and have 
suggested that school systems have a threefold role to play in fighting AIDS. Firstly, a 
30 
general foundation in education equips individuals with cognitive skills needed to 
understand, evaluate and apply health information. Secondly, education also boosts 
earning power, self-confidence and social status, giving young people and especially 
women, increased control over sexual choices. Again, schooling is a sustained and 
powerful socialisation process, which shapes values, identities and beliefs through daily 
exposure. Lastly, education informs individuals because sC~lools have the potential to 
be inexpensive vehicle for passing on HIV/AIDS information and promoting safe 
behaviour, since they reach the right target group (children and youth). 
Ecological systems theory looks at the child's development within the context of the 
system of relationships t~lat form his or her environment (Paquette & Ryan, 2001:1). 
The microsystem is the layer closest to the child and contains the structures with which 
the child has direct contact. These structures include family, school, neighbourhood, or 
childcare environments. Paquette and Ryan suggest that relationships have impact in 
two directions, namely both away from a child and toward the child. They cite an 
example whereby a child's parents may affect his or her behaviour, but also indicate 
that the child also affects the behaviour and beliefs of the parents. 
2.3.4 Stigmatization 
Children grieving for dying or dead parents are often stigmatised by society through 
association with AIDS (Alliance, 2003:4-8). The distress and social isolation 
experienced by these children, both before and after the death of their parent(s), is 
strongly exacerbated by the shame, fear, and rejection that often surrounds people 
affected by HIV and AIDS. Because of this stigma, children may be denied access to 
schooling and health care. Once a parent dies, children may also be denied their 
inheritance and property. Often children who have lost their parents to AIDS are 
assumed to be HIV positive themselves, adding to the Iikeli~lood that they will face 
discrimination at school and in their community, and thus damaging their future 
prospects. In t~lis situation children may also be denied access to healthcare that they 
need. Sometimes this occurs because it is assumed that they are infected with HIV and 
their illnesses are untreatable. 
31 
It should be remembered that the process of losing parents to HIV/AIDS for the children 
often includes the pain and the shame of the stigma and the fear that the disease 
carries in most of the world's societies. 
2.3.5 Family structures 
In African countries that have already suffered long, severe epidemics, such as 
Botswana, Malawi and Zambia (United Nations Children's Fund's, 2007:7) AIDS is 
generating orphans so qUickly that family structures can no longer cope. Traditional 
safety nets are unravelling as increasing numbers of adults die from HIV-related 
illnesses. Families and communities can barely fend for themselves, let alone take care 
of orphans. Typically, half of all people with HIV become infected before they are aged 
twenty-five years, developing AIDS and dying by the time they are thirty-five years, 
leaving behind a generation of children to be raised by their grandparents, other adult 
relatives or left on their own in child-headed households. In Vanderbijlpark and 
Vereeniging districts many young adults are dying daily, as confirmed by many funerals 
taking place even during the week. These young adults are leaving behind scores of 
orphans, who are likely to be taken care of family members, siblings and community 
members. 
Traditional systems of taking care of children who lose their parents, for whatever 
reason, have been in place throughout Sub-Saharan Africa for generations. But HIV and 
AIDS are eroding such practices by creating larger numbers of orphans than have ever 
been known before. The demand for care and support is simply overwhelming in many 
areas. HIV reduces the caring capacity of families and communities by deepening 
poverty, through medical and funeral costs as well as the loss oflabour. 
The Cape Gateway (Cape Gateway, 2007: 1), which is a government service aimed 
primarily at citizens of the Western Cape, provides information such as adoption, on 
local, provincial and national government. Cape Gateway defines adoption as a legal 
way for an adult single person or couple being unable to give birth to a child or wishing 
to bring another child into the family, to become the legal parent(s) of a child. Here the 
following categories of people are defined as legally able to adopt a child: 
• A married couple can jointly adopt a child. 
32 
•	 Partners in a life-partnership (including same-sex partners) can adopt a child. 
•	 A person who has married a natural parent of a child can adopt the child, that 
adoption of a step-child. 
A single person (a widow or widower or an unmarried or divorced person) can adopt a 
child as a single person. 
2.3.6 Manifestation of depression and anxiety 
Ramsden (2002:23) provides the following depression and anxiety manifestations of 
AIDS orphans, which are that in general they: 
•	 seem sad and without spirit; 
•	 do not play with other children; 
•	 do not appear interested in what is going on; 
•	 seem weak and without energy; 
•	 do not stand up straight or walk tall; and 
•	 appear unwashed, with ingrained dirt. 
Manifestations of the orphans of not having enough food are such as: 
•	 reddish dry hair; 
•	 dark patches of skin colour; 
• thin - no fat under the skin, and bones showing; and
 
• one or two years smaller in size than others of their ages.
 
Orphans suffering from ill health, generally show the following signs, which are: 
•	 coughing and very rapid breathing; 
•	 diarrhoea; 
•	 runny nose, sore eyes, pus from ears; 
•	 swollen belly (especially in very young children and babies); 
•	 sore around the eyes and mouth, or on the legs; and 
•	 skin problems in general. 
Constant behaviour demonstrated by orphans, shows a child in need and are the 
following: 
•	 sadness, crying, and withdrawal; 
33 
• signs of fear and anxiety; 
• aggression; 
• clinging behaviour; and 
• attention seeking, over-anxious to please, and forced happiness. 
However, according to social constructivism theory, language is developed through 
interaction of children with their parents or caregivers, siblings and the society at large, 
thus depriVing children an opportunity to interact this way may lead to deprivation from 
learning and development (Laurillard, 1993:89). Laurillard maintains that children may 
be deprived an opportunity to interact with different sectors of the community through 
natural as well as deliberate action by the society. Deliberate actions or man made 
causes in this instance, could be abuse by the caregiver by refusing her orphans to 
interact with other children or neighbours. In Vygotsky's theory, the development of 
language and articulation of ideas was central to learning and development (Vygotsky, 
1978:5). In fact, McMahon argues that learners do not transfer knowledge from the 
external world into their memories, rather, they create interpretations of the world based 
upon their past experiences and their interactions in the world (McMahon, 1997:3). 
According to social constructivism, the learner being a member of a particular culture 
inherits historical developments and symbol systems, such as language; logic; and 
mathematical systems, and these are learned throughout the learner's life. It also 
stresses the importance of the nature of the learner's social interaction with 
knowledgeable members of the society, without which it is impossible to acquire social 
meaning of important symbol systems and learn how to utilise them (Gredler as quoted 
by Wikipedia, 2006: 1). 
These issues discussed above, implies that those who provide care, need to be looked 
into. 
2.4ISSUES RELATING TO PEOPLE WHO PROVIDE CARE TO AIDS 
ORPHANS 
Issues relating to people who provide care for orphans whose parents died as a result 
of AIDS now receive attention in the next sections. Key points about carers of orphans 
and other vulnerable children are that: 
34 
•	 most orphans and other vulnerable children in developing countries are cared for 
by family members in the local community. These family members include 
surviving parents, grandparents, other adults and brothers/sisters. These people 
are a child's primary care givers; 
•	 although men are often identified as a child's formal guardian, the burden of care 
falls mainly on women; 
•	 primary care givers may receive support from a number of sources. These 
include community-based volunteers, professional staff and traditional healers; 
and 
•	 caregivers may experience stress for a variety of reasons. In some situations, 
this stress gradually builds up until a person can no longer cope. Their physical , 
and mental health, personal relationships and standards of care may all suffer. 
This is referred to as 'burnout'. 
According to Gerntholtz and Richter (2004:910), these caregivers are classified as 
informal caregivers who are categorised as grandparents, aunts, uncles, siblings or 
even sympathetic members of the community. 
A study on caregiving has shown that community programmes that are developed to 
serve people affected by HIV/AIDS tend to rely on women as unpaid volunteers (UNFP, 
2007:4). This is despite the fact that these women are as poor or poorer than the people 
they are assisting and yet receive neither stipends nor incentives. Furthermore, the 
Report of the Secretary-General's Task Force on Women, Girls and HIV/AIDS in South 
Africa points out that there is little recognition for volunteers, who may be subjected to 
exploitation and severe stress (UNFP, 2007:4). This may in turn lead to fewer people 
wanting to be involved in such community structures. 
With the African countries having a high number of AIDS orphans as mentioned in 
section 2.3 above, it becomes necessary to have high quality care-giving for these 
children who become vulnerable to poverty, discrimination, sexual abuse, among many 
other social evils. In the early days of the AIDS orphans crisis, the most common form 
of care for orphans was orphanages, which were built by non-governmental 
organisations (Avert, 2007:4). However, given the scale of the problem, this type of 
response to this orphanage crisis was unsustainable because of the high cost of 
35 
maintaining a child in such an institution. The tendency, nowadays, is to have orphans 
cared for in family units through extended family networks, foster families and adoption 
(Avert, 2004:4). It is furthermore suggested that siblings should not be separated. 
Studies in Sub.;.Saharan Africa have repeatedly demonstrated that growing up in a 
family environment is more beneficial to a child than institutional care, which must be 
considered a temporary option or a last resort (Avert, 2004: 4). 
Foster (2002:1) sees informal caregivers, which he calls 'extended family safety net', as 
the best traditional social security system. Many affected children are passing through 
this social security safety net because of the fact that the members within these safety 
nets have been responsible for providing: 
• the protection of the vulnerable; 
• the care of the poor and sick; and 
• the transmission of social values. 
Foster (2002: 1) further points out that even when relatives died, the extended family 
support network would ensure that children are cared for, whether some of its members 
move into households to care for survivors, or whether orphans are moved out into one 
or more relatives' households. 
In the extended family safety net, uncles and aunts form the first line of protection for 
vulnerable children. However, as this customary practice of orphan inheritance is 
weakened, it has been supplemented by greater responsibility on the part of 
grandparents or other relatives ,- almost always women. Those children who escape 
these two lines of protection end up in child-headed households, street or labour force 
(domestic work or other work). 
Although the creation of child-headed households may be seen as evidence that the 
extended family safety net is unable to cope with situations created by HIV/AIDS, 
however, more evidence is surfacing that suggests that this migl"lt not be the case. 
Rather, child-headed households may be a mechanism used by extended families to 
cope with the situation. For example, many child-headed households live closer to their 
extended families, and are often visited by them as well as receiving limited amounts of 
36 
material support. Very often, younger children (under five years) are taken to live with 
the extended family, and the older ones and young people are kept together within 
child-headed households. It is well documented that female-headed households are 
among the poorest, and have little opportunity to escape from poverty (Rau, 2003: 22). 
Various reasons are given for children and young people living in child-headed 
households rather than with extended families (Alliance, 2006:2). These reasons among 
others include: 
•	 no relative could be identified to take care of them; 
•	 it may reflect the wishes of the parent and/or the children; 
•	 parents and children avoid risking loss of the family home and other property; 
and 
•	 children and young people's wish of staying together. 
International Social Services (ISS) and UNICEF outlined some of the advantages and 
disadvantages associated with this form of care (ISS/UNICEF, 2004:5). This form of 
care allows sibling groups to remain together and retain their family home. Some 
children see it as preferable to fostering, or being placed in a family where they may 
experience discrimination, and all fear immediate or subsequent separation from 
siblings in such alternative situations. On the ot~ler hand, child-headed households face 
difficulties in earning a sufficient livelihood, and are likely to lack experience in dealing 
with problems, and are especially vulnerable to abuse and exploitation. 
The ISS/UNICEF Working paper (2006:3) provides a list of issues for which 
internationally agreed guidelines or minimum standards do not exist and are needed, 
almost all of which are relevant in the context of HIV/AIDS. Those issues, which are 
considered of absolute importance in this regard, include: 
•	 services to be provided for maintaining children in safety with their parents 
wherever possible; 
•	 conditions to be met when children are to be removed from their parental care; 
37 
•	 processes and mechanisms enabling the children (and, where applicable, 
their parents) concerned to have a real say in the care option chosen, and to 
be consulted regularly throughout the period in which out-of-home care is 
provided; 
•	 permanency planning; 
•	 protection in informal care situations; 
•	 selection, training, monitoring and support for foster carers; 
•	 recourse to, and conditions in, residential care; and 
•	 responses to child-headed households. 
The UNICEF/ISS recommends that both the international and national standards and 
guidelines be advocated in order to respond to the specific concerns, and also explicitly 
address the following: 
•	 the importance of provision to prevent separation. In the case of parents or 
children living with HIV - and other chronic diseases - access to health care and 
related services can prolong lives a~d make it possible for parents to remain with 
their children, and siblings to remain together; 
•	 mechanisms for supporting and monitoring kinship care as well as other forms of 
informal foster care which can be met by a majority of countries and which help 
ensure greater protection for children living in such care arrangements; 
•	 care options and legal mechanisms to ensure appropriate support for abandoned 
children, and prevent unneeded separation of children from their peers or other 
discriminatory treatment; 
•	 guidance on appropriate use (if any) of medical considerations in the 
determination to remove children from care or to isolate them with their care 
environment; 
•	 guidance on appropriate use of different care options, including innovative 
options for older children, such as child-headed households and other supported, 
independent living arrangements; and 
•	 standards relating to inheritance and succession rights as an integral part of 
permanency planning. 
38 
Foster (2002:4) obseNed that although these vulnerable children slip through the 
extended family safety net, the community visiting these AIDS-affected child-headed 
households is a major element in community solidarity. Most of these visits are 
conducted by village women and consist of brief social visits to ensure the well-being of 
their neighbours. Even in this study, most of the cases identified of child-headed 
households have been brought to our attention through neighbours who were 
concerned about the well-being of these children, but could not help due to poverty. 
Marcus (2004:5), the head of psychosocial seNices at Hospice, one of the South 
Africa's main palliative-care facilities, commented in the country's major newspapers 
that children in South Africa very seldom reach formalised counselling. However, there 
was a growing realisation among people at the forefront of the fight against AIDS, for 
example caregivers, social workers and educators - those children who had been 
affected by the pandemic needed more than just shelter, food and clothing. Children 
need to talk about their feelings as opposed to these feelings just being absorbed into 
their everyday lives. van Eyssen (2004:3) wrote in her weekly column of The Star 
newspaper about the Magical AIDS Journey, a board game designed to help children 
affected with HIV/AIDS come to terms with the impact of the disease on their lives. 
Ebersohn and Eloff (2002:77) published an article on the complexities of HIV/AIDS to 
the coping of traumatised South African children. In their study, they found that 
HIV/AIDS constitutes a chronic stressor in the lives of many South African children. For 
example, children live with the stress of being without the familiar care of a mother, 
have to bear hardship and responsibility on account of parents' unemployment, face 
being stigmatised by peers and treated as social outcasts, are burdened by grief for lost 
family members, lost homes or lost opportunities. They further assert that these 
traumatised children are prone to feelings of inadequacy and depression and may 
further suffer Post Traumatic Stress Disorder. Ebersohn and Eloff (2002:77) highlighted 
the following effects of HIV/AIDS to contextualise the predicament of these vulnerable 
children: 
•	 demographic effects - They estimated that sixty one percent of 16.3 million 
children, which is half of South Africa's 38.8 million population, live in poverty. It 
39 
is estimated that in sub-Saharan Africa, children under the age of five are 
expected to outnumber adults over the age of 44 of HIV/AIDS; 
• health effects - Children living in infected communities suffer from poor nutrition 
and ill health, and show signs of failure to thrive. Furthermore, children's 
nutritional status suffers in rural areas that are dependent on household labour 
for subsistence agricultural production. Where social services, hospital and 
home-care systems are stretched or absent, vulnerable children have 
inadequate access to health care; 
• family-life effects - As young or middle-aged fathers and mothers die, 
grandparents take full-time care of young children and sometimes these children 
have to assume unfamiliar adult roles at home for which they are ill-prepared. 
Sometimes they even become primary caretakers of their infected elders, 
assuming adult responsibilities, washing, cooking for and feeding sick elders 
and young siblings; 
• welfare effects - Economically children and their families are hard hit. For 
example, on account of poor health productive members of the family are often 
unable to continue work. Even when caregivers attempt to protect children by 
not discussing economic difficulties with them, the children are attuned to their 
emotional environment and readily adopt the anxiety, fear and frustration that 
accompany financial strain; 
• educational effects - A marked decline in school attendance already 
characterises the South African education landscape. Affected and/or infected 
children shy away from disclosure because of illness, morbidity and death, fear 
of discovery and shaming at school, increased demands for child labour, 
including caring for sick relatives (both in and outside home), and inability to pay 
school fees; 
• psychosocial effects - Children's psychosocial distress and trauma is often not 
as visible as that of their health, education and economic needs. The 
psychosocial challenges children face include coping with grief, loss of identity 
(self-, family- and cultural identity), coping with shame, stigmatisation and fear of 
abandonment, rejection, and death; and 
• orphanhood effects - It is estimated that on current mortality trends, orphans will 
comprise nine to twelve percent of South Africa's total population by 2015. 
40 
These orphans may live in child-headed households with older siblings looking 
after younger ones, thus assuming parenting roles that they are ill-prepared for, 
while others are taken care of by communities, some are placed in institutions, 
and still others loose all contact with carers and become street children. 
Outside of school, HIV/AIDS orphans may likely miss out on valuable life-skills and 
practical knowledge that would have been passed on them by their parents (Avert, 
2005: 3). Salaam (2005:2) argues that without this knowledge and basic school 
education, children may be more likely to face social, economic and health problems as 
they grow up. 
The ILO report provided the following evidence of the linkage between HIV/AIDS and 
child labour, which appeared in all the rapid assessments (RAs): children who are from 
households affected by HIV/AIDS often must enter the labour market because families 
cannot meet their basic needs without contributions from the children (Rau, 2003:32). 
The report argues that as a result, children may be subjected to harsh and exploitative 
conditions and sexual abuse. The report suggests that the effects occur under the 
following conditions: 
•	 Children are withdrawn from school to reduce family expenses, and then seek 
work; 
•	 Children are placed with extended family members, but are expected to work; 
•	 Children flee new arrangements because of depression, neglect or 
exploitation, and have to work. 
Schools should be enabled to learn how to play an active role in looking for HIV affected 
and infected children in their communities, and persuading them, or their caregivers or 
guardians to come back and remain in school (Wijngaard & Shaeffer, 2004). 
According to Resilience Theory, children should have access to resources (internal and 
external) to cope effectively, so as to change what they can or make the best choices 
regarding things they cannot change (Ebersohn, & Eloff, 2002:77). 
41 
Figure 2.2: The universal stages of transactional coping process 
Demand = Internal or external event 
~ 
Stress 
~ 
Experience (physical, mental, emotional tension) 
~ 
Cognitive appraisals 
(a) give meaning to tension based on personal system of beliefs and values; 
(b) guide decision making; and 
(c) evaluate outcome of coping response 
~ 
Emotional reactions 
(reciprocal influence between emotion and cognition) 
t 
Coping response or reappraisal 
Source: (Zitlin & Williamson as quoted by Ebersohn & Eloff, 2002:78) 
Figure 2.2 illustrates the universal stages of transactional coping process. According to 
the transactional coping process the environment makes constant demands on the 
individual. The individual experiences these demands as stress (anxiety, tension). The 
individual has to decide how to manage the stress. The outcome of decision-making is 
either a coping response or reappraisal. For example, a child's infection may become 
less threatening to his/her educators when the educators acquire knowledge t~lat 
encourages them to believe his/her presence is not harmful to others. 
Furthermore, a certain coping response will influence the child's environment, and may 
in tum present new demands on the individual or alleviate the stress. The following 
example illustrates the reciprocity in the transactional coping process. An orphaned girl 
may decide to cope with trauma by having a sexual relationship with an educator. Her 
choice increases her susceptibility to infection, yet provides her with lunch money and 
assistance in passing grades. Herstigmatised family, seeking social acceptance, may 
strengthen her acquaintance with an admired community figure. If she becomes 
42 
pregnant, or infected, or both, she may be abandoned by the educator, which adds her 
personal trauma to the distress already experienced by the family. 
Figure 2.3: Protective factors that act as buffer to the effects of trauma on children 
Human support (kinship networks, peer support, sangomas 
Material support (health, welfare and education services) 
Environmental suooort (infrastructure. e.o. school buildina) 
Source: (Ebersohn & Eloff, 2002:79) 
Figure 2.3 illustrates the interrelatedness between protective factors that might buffer 
the effects of trauma oli a child, and these protective factors become crucial when 
children are under threat of getting AIDS. Ebersohn and Eloff (2002:80) argue that in 
times of crises children revert to primary emotional coping strategies, where their 
dependence on adult support to assist them in coping is critical. 
Table 2.3: Coping stages oftraumatised children 
Stage One Stage Two (similar to stage one, but less 
intense) 
• Initial shock • Less crippling emotional state 
• Poor solutions may be maintained because they 
lack other options 
• Support from adults means that fears can be 
voiced and options explored 
• High level of distress (anxiety, 
helplessness) 
Source: (Eberso~m & Eloff, 2002:80) 
~ 
Gender 
Age 
Beliefs and values (culture) 
Self-concept 
Physical health (ill, malnourished) 
Affective state (anxiety, grief) 
Knowledge and skills 
Coping style 
Family 
One consistent primary 
caregiver 
Warm, supportive, nurturing 
Familiarity 
Income 
43 
Table 2.3 illustrates the integration of the essence of the transactional process (Figure 
2.2) with protective factors (Figl~re 2.3), where the emphasis is on emotion, basic 
solutions and support from adult caregivers for children's effective coping. 
In the absence of such support (child-headed households, abandoned orphans, street 
children) children's repeated experiences of helplessness will result in despair at their 
lack of control. Experiencing that they consistently cope ineffectively may generate an 
unwillingness to try managing similar situations, may bring about additional stress and 
create feelings of inadequacy, as will be investigated in this study. 
HIV/AIDS triggers multiple anxieties in a child. For example, stressors may be 
environmental demands such as exclusion from school, or having to find money for a 
funeral. Internal challenges may be bewilderment at drastic changes in family 
circumstances, profound grief at the loss of a mother or father. The challenges could be 
the physical changes of a weakening body. A child may experience anguish trying to 
find out what is happening to herlhim when shelhe is removed from a familiar 
community and placed in an institutional care. 
Connard and Novick ( 2001:1) suggest that the "goodness of fit" model could be useful 
for understanding how to support and strengthen families. They purport that stress 
builds when the resources and coping skills of a family are inadequate to meet the 
demands and expectations of the social environment. They further suggest that family 
stress levels are a predictor of "rotten outcomes" for children. According to Family­
Centred Approach (Connard & Novick, 2001:1), one part of the system cannot be 
understood in isolation from the other parts. For example, children cannot be 
understood outside the context of their families (Connard & Novick, 2001 :2). The theory 
states that every member of a system influences every other member in a circular chain 
reaction. Thus a family system is constantly changing as children develop; hence it is 
almost impossible to know for certain the cause of behaviour. Krauss and Jacobs 
(Krauss & Jacobs as quoted by Connard & Novick, 2001 :3) view all behaviour as 
interpersonal messages that contains both factual and relationship information (Krauss 
& Jacobs quoted by Connard & Novick, 2001 :4). This suggests that an orphan, who 
lies about her caregiver physically abusing another orp~lan, and even signing a 
44 
declaration at the police station, may be trying to pass on a personal message of a 
relationship that has turned sour to her caregiver. 
Fredriksson and Kanabus (2005:3-4) regarded prevention and care as a way forward 
for supporting children orphaned by HIV/AIDS. They further proposed the following as 
intervention mechanism to support children orphaned by HIV/AIDS: 
•	 care in the Extended Family - Most people are now beginning to realise and 
convinced that orphans should be cared for in family units through extended 
family networks, foster families and adoption. Furthermore, siblings should not 
be separated. This perception was brought about by the fact that orphanages 
built mainly by non-governmental organisations provided an unsustainable 
response, due to the magnitude of the scale of the problem; 
•	 support for Communities - The extended family can only serve as part of the 
solution to mass orphanhood if adequately supported by the state, community 
and other sectors. Orphans need to be accepted as part of the community and to 
have access to essential services such as health care and education. This 
implies that existing services have to be improved and reducing the stigma 
surrounding children affected by AIDS so they are not stigmatised and denied the 
services they need; 
•	 keeping Children in School - Keeping children at school provides education that 
can work as a safety net in the child's life. Schooling can also break the cycle of 
poverty. Orphans may be the first to be denied education when extended families 
cannot afford to educate all the children of the household; 
•	 empowerment for Children - Children can be empowered by regarding them as 
active members of a community rather than as victims. Since many of these 
children already function as heads of households and as caregivers, they are a 
vital part of the solution and thus should be supported in planning and carrying 
out efforts to lessen the impact of HIV/AIDS in their farnilies and communities; 
•	 protection for the Legal and Human Rights of Orphans - Many communities 
should be made aware of the importance of writing a will, so as to protect the 
inheritance rights of children and to prevent land and property grabbing, i.e. an 
45 
adult attempting to rob orphans of their property once the children have no 
parents to protect their rights; and 
•	 meeting Emotional Needs: Many orphans will often have many physical needs 
such as nutrition and health care, and these can often appear to be the most 
urgent. They will also have significant emotional needs as well as the sickness 
and death of a parent, which is clearly a major trauma for any child. 
Links and Masson (2004:127) highlighted the adverse effects of the impact of HIV/AIDS 
on grandparents and other relatives caring for HIV/AIDS affected children, in the USA. 
They noted that parental absence or incapacity resulting from HIV/AIDS is one of the 
reasons for an increase in non-parent relatives raising children. Research on 
grandmothers as caregivers has documented adverse psychological functioning that 
results from care giving, such as distress, depression, anger, resentment, and parenting 
stress. Grandparents caring for their grandchildren also reported reduced level of 
physical functioning or physical limitations that may affect their quality of life and 
caregiving capacity. 
Ogunmefun and Schaltz (2006:2) argue that as more young men and women are falling 
prey to the HIV/AIDS epidemic, older women are more likely to be asked to provide care 
for the ill and orphans left behind (Ogunmefun & Schaltz, 2006:2). Ogunmefun and 
Schaltz further maintain t~lat as caregivers, they incur some losses, w~lich include 
income (earnings forgone as they stay at home to give care), saVings, wealth assets, 
and health (due to stress and strain). Other losses associated with care are increases in 
expenditure on health care, funeral costs and payment of debts, which strain already 
thin household budgets that must cover food, housing, and educational expenses 
(Ogunmefun & Schaltz, 2006:2). 
Albertyn (2003:595) argues that the HIV/AIDS epidemic is likely to undermine the efforts 
being made by the government to redress the inequalities created by apartheid by 
forcing the elderly to use economic resources meant to alleviate their own poverty, to 
assist the needs of their families. This stUdy has shown that caregivers, who are also 
pensioners, are using their old-age grants to supplement the foster grants given for 
orphans. In fact,. Ogunl11eful1 and Schartz's data had shown that female pensioners 
were using their grants to reduce financial burdens associated with adult illness and 
46 
death, especially HIV/AIDS related morbidity and mortality, rather than alleviating their 
own poverty. This is supported by a joint report by UNAIDS, UNFPA and NUNIFEM, 
which has shown that women's role in the care economy intensifies their poverty and 
insecurity since a large proportion of an already meagre income is used to support their 
. care giving and purchasing of items such as water, gloves and medicine or paying for 
funerals. This report further suggested that the increased workload of family income and 
deepening poverty make women more dependent on others and exacerbate gender 
inequalities. 
In other studies, grandparents often report that despite the burden, caregiving is 
rewarding; they express relief and happiness at being able to provide a good home for 
their grandchildren (Burton, 1992:7; Minkler, Roe & Price, 1992:4). In another study 
conducted in India, D'Cruz (2005:90-92) attests to that, by asserting that the family­
based care is becoming more important across the globe. D'Cruz noted that home and 
community-based care is now widely preferred, and acknowledges that cutbacks in 
social expenditure force families into these modes even when institutional care would 
have been their first choice. 
The UNAIDS agency has learnt very important lessons, which is recognition that the 
extended family, with t~le support of t~le surrounding community, are the best people to 
care for orphans and probably the only viable and sustainable solution, especially in 
areas of mass orphanhood (Zaba, Whiteside & Boerma, 2004:66). In another study 
conducted in Uganda, the main challenge which kept unfolding during the study, and 
which is consistent with studies conducted in sub-Saharan African countries is the fact 
that grandmothers, who form the majority of caregivers, are in most cases incapable of 
providing adequately for orphaned children. Often grandmothers would desire to offer 
the best support for their grand children. However, monetary and other constraints do 
not allow them to live up to this expectation. 
Other problems experienced by the caregivers were "role strain" and "identity". For 
example, many grandmothers had problems whether they should see themselves as 
mothers (as they are normally referred to by grand children) or grandmothers. They also 
find it difficult having to care for their grand children under conditions of increasing 
47 
personal impoverishment, associated with problems such as depression for both 
generations. 
Shilubana and Kok (2006:101-107) conducted a study to investigate the performance of 
without adult care at home. Most of the learners who succeeded at school cited the 
following coping mechanisms, which were that: 
•	 all learners interviewed highlighted some form of support that they get from either 
relatives staying in the same community, friends, or educators, especially the 
guidance educators at the school; 
•	 the feeding schemes and the food parcels organised by the school; 
• some relied mainly on peers for completion of homework; and
 
• others relied on study groups.
 
The study also revealed that there were some challenges that learners highlighted, 
including: 
•	 insufficient money, which contributed to shortages in food, electricity cuts, lack 
of school uniforms and other school requirements; 
•	 inadequate basic necessities; 
•	 lack of security; 
•	 siblings fights; and 
•	 lack of medical care. 
Support mechanisms provided by the school, highlighted by the study, were: 
•	 bread and milk prOVided to the affected learners; 
•	 motivational talks and advise organised for learners; 
• visits of staff from local clinic on health matters; and
 
• old clothes and food parcels were organised for distribution to needy learners.
 
Pharaoh and Weiss (2005:1) investigated the impact of HIV/AIDS on orphans, crime, 
and stability. They found that in much of the developing world, particularly in Africa, 
48 
AIDS is undermining education and health systems, economic growth, micro­
enterprises, policing and military capabilities, political legitimacy, family structures, and 
overall social cohesion. The authors also argue that when growing up without parents, 
and children badly supervised by relatives and welfare organisations means that, this 
growing pool of orphans will be at greater than average risk of engaging in criminal 
activity. For example, without caring adults to protect them, orphaned children can be 
manipulated into doing almost anything. 
The older and younger ages of many caregivers make them particularly vulnerable to 
physical strains of care-giving, which manifest in the form of stress and burnout. Care 
givers may experience stress for a variety of reasons. In some situations, this stress 
gradually builds up until they can no longer cope. Tlleir physical and mental health, 
personal relationships and standards of care may all suffer. This is referred to as 
'burnout'. Primary care givers may experience stress and burnout, as well as volunteers 
and professional staff, and signs of stress include: 
•	 physical symptoms, such as inability to sleep and bowel disturbances; 
•	 emotional problems including feelings of inadequacy, helplessness and guilt; 
•	 withdrawing from other people; 
•	 reduced quality of care; and 
•	 worsening relationships with other people. 
Stress in caregivres can be caused by a number of factors including: 
•	 poverty and its effects, including lack of resources to meet survival needs of both 
the child and carer. This includes lack of food and medicines; 
•	 interpersonal and family conflict. This is common within families affected by 
HIV/AIDS because the virus spreads mainly through sex. This often leads to 
people being blamed for 'bringing the virus into' the family; 
•	 isolation and fear for the future; 
•	 excessive workload; 
•	 stigma and discrimination relating to HIV/AIDS; 
•	 excessive personal involvement in issues relating to the child; and 
49 
•	 poor organizational arrangements. This applies particularly to secondary care 
givers. issues include lacking a voice in the way things are done, inadequate 
support and lack of clarity over roles. 
On the other hand, stress and burnout can be managed by developing personal coping 
mechanisms and organisational strategies. Religious faith may be important as part of 
personal coping mechanisms. Organisational strategies include: 
•	 recognising that caring is stressful and that stress and burnout are complex; 
•	 ways of dealing with problems that carers can not deal with; 
•	 finding ways of showing that carers are valued; 
•	 providing carers with training; 
•	 relieving poverty and ensuring that activities are reliably funded; 
•	 effective stress management measures including regular time off, realistic 
workload, team meetings and participation in decision-making; 
A similar study conducted by Burgos, Hernandez-Reif, Mendoza, Castillo and 
Shorposner (2007:2) on Dominican children behaviour, found that caregivers of HIV 
positive children face many challenges related to both physical demands and emotional 
well-being. They assert that caregivers of children with HIV face many challenges such 
as depression, fatigue and exhaustion, similar to problems of those who care for 
children with life-threatening diseases. They purport that diminished stamina and 
physical demands of a HIV positive child leave many caregivers without adequate time 
for self-care and counselling. Burgos et al. maintain that stress of raising HIV-infected 
children may precipitate or exacerbate chronic psychological conditions in caregivers, 
and thus impacting on their perception of the child's behaviour. Furthermore, HIV is 
associated with additional stressors, such as social stigma and isolation that may limit 
caregivers' willingness to seek assistance from formal agencies, for t~lern or their 
families. 
Ebersohn and Eloff (2002:77) highlighted some of the complexities of HIV/AIDS to the 
coping of traumatised South African children. They established that HIV/AIDS 
constitutes a chronic stressor in the lives of many South African children. For example, 
the authors argue that some of the chronic stressors include children living with the 
stress of being without the familiar care of a mother, having to bear hardship and 
50 
responsibility on account of parents' unemployment, facing being stigmatised by peers 
and treated as social outcasts. Furthermore, these children are burdened by grief for 
lost family members, lost homes or lost opportunities. They further assert that these 
traumatised children are prone to feelings of inadequacy and depression and may 
further suffer Post Traumatic Stress Disorder. 
In his opening address to the conference on orphans and other children made 
vulnerable by HIV and AIDS, the Minister of Social Development, Dr Zola Skweyiya 
emphasised that the protection of the rights of orphans and other children made 
vulnerable by HIV/AIDS and other social ills requires the involvement of government 
and other sectors, including faith-based organisations, community-based organisations, 
business sector, labour, donor and development agencies (SARPN, October 2007:1). 
2.5 THE NATURE OF CARE NEEDED FOR AIDS ORPHANS 
The nature of care needed for AIDS orphans can take the following forms, which are 
social grants; home- and community-based care and support programmes; services for 
children; partnerships; United Nations Children's Fund; Save the Children Fund; and 
faith-based organisations and the business sector, and are discussed in the sections 
that follow: 
2.5.1 Social grants 
In Thailand (Avert, 2005:6), the wide availability of basic government health insurance 
helps moderate the economic impact on families. Parents reported that, in three-fifths of 
cases, insurance helped pay health care costs, and more than one-half of these said it 
helped very mUCh. Such a situation is far less probable, however, in the countries 
hardest hit by the epidemic, especially much poorer ones in Africa. The Thai insurance 
also did not cover antiretroviral treatment. Expenses to be borne by parents in Thailand 
and other developing countries may increase sharply as awareness and availability of 
antiretroviral treatment spreads. Features of the Thai context may also have moderated 
the amount of stigma experienced by AIDS parents and their infected children. 
Community reaction is variable, but generally much more sympathetic and supportive 
than typical media descriptions and accounts given by advocacy groups imply. The 
WHO study in Zimbabwe (Fischer & Mutikani, 1998:4) also indicates that only a minority 
51 
of older-age caregivers reported experiencing stigma. Clearly, more research is needed 
on the way AIDS affects the older parents in a wide variety of social, economic, and 
epidemiological settings. 
In order to take care of AIDS orphans, Ramsden (2002:32) suggests the following social 
grants provided by the South African government, which are: 
•	 child support grant - given for children up until 7 years of age; 
•	 foster care grant - for children up until 18 years of age; 
•	 care dependency grant - for parent or foster-parent of a severely mentally or 
physically disabled child who needs constant care; 
•	 social relief of distress grant - meant as a temporary help for persons who are 
vulnerable (at risk) and those who are destitute and so poor that they have 
nothing to meet their needs; 
•	 free health care for children under 6 years; and 
•	 exemption from school fees. 
In terms of SASA (84/1996) children of 7 - 15 yrs of age are exempted frm school fees. 
According to the Bulletin of the Department of Social Development, by lVIarch 2006, 
social grants were being paid to 11 million South Africans (Social Development Bulletin, 
2006:510). The number of people benefited are categorised as follows: 
•	 foster care grants (300 119); 
•	 care dependency grants (91 604); 
• war veterans' grants (2 858);
 
• old-age grants (2 131 820);
 
•	 disability grants (1 312726); and 
•	 child support grants (6961 046). 
From this information, it can be seen that child support grants made up the largest 
social grant. Old-age grant contributed as the second largest social grant. 
52 
Table 2.4: Amounts of grants per month in South Africa as at 1 April 2006 
Grant type Amount (Rand) per person 
Old-age grant 820 
Disability grant 820 
War veterans' grant 758 
Foster care grant 590 
Care dependency grant 820 
Child support grant 190 
Grant-in-aid 170 
Source: (Social Development Bulletin, 2006:512) 
Table 2.4 shows the amounts of social grants per month as at 1 April 2006, of different 
types of social grants available in South Africa. It is clear from this table that the 
amounts of the old-age, foster care and child support grants are insubstantial compared 
to the economic demands of caregivers. 
The Social Development Department, in addition to providing social assistance, is also 
managing the Poverty-Relief Programme. The department has contracted the 
Independent Development Trust (IDC) to provide implementation support of these 
projects. 
2.5.2 Home- and Community-Based Care and Support Programme 
The department of Social Development in South Africa stated that about R4,2 billion 
was expected to be spent in 2006107 on social-sector employment programmes, which 
include home- and community-based community care, community health workers and 
social-development partnerships with non-governmental organisations, NGOs (Social 
Development Bulletin, 2006:512). The department emphasised that care of child­
headed households, strengthening of HIV and AIDS programmes, and appropriate 
management of children in conflict with the law are among the social-service priorities. 
The Home-and Community-Based Care and Support Programme is aimed at teaching 
life skills to children and the youth. It also provides voluntary testing and counselling 
services and a range of care and support services, focusing on families and on children 
orphaned by AI DS-related deaths of their parents. 
53 
2.5.3 Services for children 
These services are provided through "drop..,in" centres that have been identified by each 
province, and are contracted to provide cooked meals to identified beneficiaries (Social 
Development Bulletin, 2006:512). The beneficiaries are classified as people who are 
unable to cook for themselves, for example, child-headed households. 
2.5.4 Partnerships 
The Social Development Department has, since 2000, strengthened its partnerships 
with national and international organisations involved in the fight against HIV and AIDS 
(Social Development Bulletin, 2006:513). The following are some of the organisations 
that the department is working in collaboration with: 
•	 United Nations Children's Fund (Unicef) - Unicef, has conducted various studies 
on caring for vulnerable children and children orphaned through HIV/AIDS (Social 
Development Bulletin, 2006:513). Unicef has also conducted studies on the cost­
effectiveness of several models of care for vulnerable children. The Department of 
Social Development has implanted the results of these studies in its design of 
programmes for children. Unicef has further indicated interest in providing further 
support to the department in fast-tracking the Home- and Community-Based Care 
and Support Programmes. 
•	 Save the Children Fund - This organisation provides secretariat and other 
assistance to the National AIDS Childen's Task Team (NACTT) and has undertaken 
research. on abused children and children affected by HIV/AIDS (Social 
Development Bulletin, 2006:513). It has also compiled a directory of social services 
and children's organisations. 
•	 Faith-Based Organisations (FBOs) and the Business Sector -The department 
has strengthened its partnership with churches and other FBOs, the business sector, 
volunteer organisations, and individuals, to assist with poverty-relief, HIV/AIDS and 
social-grant registration programmes (Social Development Bulletin, 2006:513). 
In a study conducted by Sengendon and Nambi (1997:105) in rural Mozambique, they 
found that carers of orphans showed more depression and less social support. 
54 
A study conducted in Namibia has uncovered that the majority of households caring for 
orphaned children were already suffering financial hardships (Anon., 2000:3). This study 
suggests that the care giving household was not able to rely on financial support from 
the dying parent(s) because either the family was already in poverty, or because they 
used their resources treating the dying parent(s). It is purported that this leads to the 
inability of the extended family system to provide orphans with basic requirements such 
as shelter, food, medical care, education, love and support (SARPN, 2005:1). Stigma, 
discrimination and poverty are also identified as contributors that lead to orphans being 
denied or discouraged from accessing basic services, such as health care, education 
and social services. Caregivers have great difficulty in having to disclose to orphans the 
source of their parent(s) death, or even the orphan's HIV status. In fact, Cluver and 
Gardner (2006:2) reported that caregivers suffered psychological health themselves. 
They also mentioned that South African orphans reported that stigma and secrecy 
surrounding AIDS, causes social isolation, bullying, shame, and a lack of opportunity to 
openly discuss their loss. 
2.5.5 Inclusion 
One of the mechanisms used in addressing stigmatisation and discrimination of children 
orphaned by HIV/AIDS related diseases in South African schools is 'inclusion'. Inclusion 
is seen as a process of addressing and responding to the diversity of needs of all 
learners through increasing participation in learning cultures and communities, and 
reducing exclusion within and from the education system. Inclusive education aims at 
providing appropriate responses to the broad spectrum of children's learning needs. It 
has ~Iready been highlighted that many countries are faced with the problem of having 
to deal with vulnerable and disadvantaged children. Among some of these vulnerable 
and disadvantaged orphaned children, the following categories can be identified: 
•	 poor: those who can not afford to pay school fees, and forced to join the labour 
force in order to take care of their siblings, or family members, as well as coping 
with malnutrition; 
•	 street children - they rarely attend school regularly and if they do they usually 
drop out early; and 
•	 children liVing in remote and rural areas or constantly moving - they live in places 
with lack of infrastructure or they are not registered as living in one place so they 
55 
do not have the means to enrol at school. Schools may be used as a vehicle to 
offer support to caregivers of orphaned children. 
HIV/AIDS is also associated with 'taboo' subjects such as sex, death and blood, and 
with behaviours such as commercial sex, drug use and homosexuality (Alliance, 
2003:3). This leads many people to stigmatise and discriminate against anyone with 
HIV or affected by HIV. Children are especially sensitive to the damaging psychological 
effects of stigma. Stigmatisation and discrimination create and reinforce the social 
isolation of those affected by the epidemic. Orphans, vulnerable children and their 
caregivers are often unaware of their rights and the laws intended to protect them from 
discrimination. However, if they are aware of these rights, they fail to demand better 
treatment from their caregivers or community. 
Clasen (2004: 1) considers ones integration into society as being a critical aspect of 
good citizenship, which he argues should be classified among the most fundamental 
. rights available to all, for example, food; shelter; education; and health care. To date, 
inclusion remains a controversial concept in education because it relates to educational 
and social values, as well as to our sense of individual worth. Inclusion is a term that 
expresses commitment to educate each child, to the maximum extent appropriate, in 
the school and classroom he or she would otherwise attend. Inclusion is a process by 
which schools; local education authorities and others develop their cultures, policies and 
practices to include all children and young people (Smith, 2002:7). Its main concern is to 
overcome barriers to access and participation in education, by bringing the support 
services to the child (rather than moving the child to the services) and requires only that 
the child will benefit from being in the class (rather than having to keep up with the other 
learners). 
Inclusive education means that all students in a school, regardless of their strengths or 
weaknesses in any area, become part of the school. Both the Advocacy Board at the 
Centre on Human Policy, at the Syracuse University in New York and the School of 
Educational Sciences at the Vaal campus of the University of Potchefstroom (Smith, 
2002:5), maintain that inclusion involves, among others: 
•	 providing all students enhanced opportunities to learn from each other's 
contributions; 
56 
•	 providing necessary seNices within the regular schools; 
•	 teaching all children to understand and accept human differences; 
•	 seeing the difference between students as a resource to strengthen learning, 
rather than as a problem to overcome; 
•	 reforming the cultures, policies and practices in schools so that t~ley respond to 
the diversity of students in the neighbourhood; 
•	 acknowledging the right of students to an education in their neighbourhood; and 
•	 promoting mutually sustaining relationships between schools and communities. 
It is argued that discussions about inclusion should address several important 
questions, among which are: 
•	 Do we value children equally? 
•	 Is anyone more or less valuable? 
•	 What is meant by inclusion? 
•	 Are there some children for whom "inclusion" is inappropriate? 
There are advocates on both sides of the issue. Before any recommendations can be 
made towards effective implementation of inclusion, several factors will be presented. 
The legal enforcement of segregation on the grounds of disability, learning difficulty or 
emotional need is said to be against international human rights agreements including 
the UNESCO Salamanca Statement and Framework for Action (Spain, 1994), which 
was later restated at the World Education Forum in Dakar (Senegal, 2000); the UN 
Standard Rules on Equalisation of Opportunities for Persons with Disabilities 
proclaiming participation and equality for all (1993); and the U1\1 Convention on the 
Rights of the Child (1989): 
•	 caregivers of orphans and vulnerable children are often very poor and receive 
less attention from health workers. They are often treated badly, shouted at and 
handled without proper care; and 
•	 in order to protect them from further opportunistic infections, children with AIDS 
may be isolated from others in labelled wards or clinics; for example, AIDS 
clinics. While the intentions are good, this separation is stigmatising for children 
and their caregivers. 
57 
As a result of above issues, the following intervention strategy is proposed (Alliance, 
2003: 8): 
•	 promote a supportive legal framework - advocate for laws and policies that make 
stigma and discrimination illegal; 
•	 promote a supportive community environment - information can help to reduce 
stigma. Ensure that communities are aware of laws and policies that support the 
rights of children, and they have basic knowledge about HIV/AIDS and the 
modes of transmission; 
•	 promote psychosocial support for children affected and infected by HIV; 
•	 target influential community members such as educators, health workers, 
traditional leaders, religious leaders and organisations by encouraging them to 
play an effective role; 
•	 promote children's platforms w~lere their voices can be heard and they can 
express themselves freely; 
•	 provide necessary training for educators and help other school children to 
become aware of how children affected by HIV might feel; 
•	 target support to vulnerable households and children - bearing in mind that 
where the majority of families are living in poverty, targeting assistance to 
children affected by HIV/AIDS can cause resentment and increase stigmatisation 
of these children; 
•	 help children and caregivers to cope with stigma and discrimination - strength the 
ability in terms of skills and resources (capacity) of children and their caregivers 
to challenge stigma and discrimination; 
•	 enable children to protect themselves from HIV infection - provide children with 
information, skills and the means to protect themselves; and 
•	 take a multi-sectoral approach to meet the needs of socially excluded children. 
2.6 CARING AS THE WAY TO HELP AIDS ORPHANS 
Caring is one way to help AIDS orphans (Alliance, 2003:9). Care must be provided for 
those children who are already orphaned. This section is devoted to issues around the 
care of AIDS orphans in Africa. The situation of AIDS orphans is generally generated by 
adult deaths. 
58 
Most orphans and other vulnerable children in developing countries are cared for by 
family members in the local community. These family members include surviving 
parents, grandparents, other adults and brothers/sisters. These people are a child's 
primary care givers. 
A study in Uganda (Avert, 2005:3) showed that orphans received care from a surviving 
parent in fifty per cent of situations. Other carers were grandparents (35%), 
aunts/uncles (11 %) and brothers/sisters (3%). Most of the brothers and sisters providing 
care were aged over eighteen years of age but there was one situation where care was 
being provided by a child under the age of eighteen years. 
Although many children are cared for by surviving parents, this is not automatically the 
case when one parent dies. Reasons why this might not be the case include: 
•	 cultural practices which lead to children being 'inherited' by one side of the family 
(often the father's) rather than by the surviving parent (usually the mother); 
•	 the surviving parent remarrying and the new partner being unwilling to take on 
responsibility for the children. This is strongly influenced by cultural norms and 
practices; 
•	 better economic prospects for the child with the extended family; and 
•	 the surviving parent being unable to care for the children. A common reason for 
this relates to the parent's need to work. 
Although men are often identified as a child's formal guardian, the burden of care falls 
mainly on women. Primary care givers may receive support in different ways, which 
include the ones that are discussed below (Avert, 2005:5). 
2.6.1 Support for carers 
As said above, in the early days of the AIDS orphans' crises, there was a rush by well 
meaning non-governmental organisations to build orphanages. Given the scale of the 
problem, though, this response was unsustainable, as the cost of maintaining a child in 
such an institution is much greater than other forms of care. Most people now believe 
that orphans should be cared for in family units through extended family networks, 
foster families and adoption, and that siblings should not be separated. Studies in Sub­
Saharan Africa have repeatedly demonstrated that growing up in a family environment 
59 
is more beneficial to a child than institutional care, whic~1 s~lould be considered a 
temporary option or a last resort. 
Ultimately, though, the extended family can only serve as part of the solution to mass 
orphanhood if adequately supported by the state and t~le community, as well as other 
sectors of society. 
The community needs to be supportive of children when they are orphaned, making 
sure that they are accepted and have access to essential services, such as health care 
and education. This means improving existing services and reducing the stigma 
surrounding children affected by AIDS so that they do not face discrimination when 
trying to access these services. 
According to Paquette and Ryan (2001:1), communities must provide parents wit~1 
access to people with similar concerns that can function as resources and emotional 
support. In fact, community support is a cornerstone of a "Family-Centred Approach" 
theory, whose key components are the following (Connard & Novick, 2001 :3): 
•	 Creating partnerships and helping relationships: families are supported and 
child development is enhanced through helping and partnership relationships; 
•	 Building the community environment: families gqin information, resources and 
support through their connections to the community environment; 
Linking families and community support: participation, two-way communication, and 
advocacy strengthen both the community support network and family functioning. 
2.6.2 Keeping children in school 
Schools can playa crucial role in improving the prospects of AIDS orphans and 
securing their future. A good school education can give children a higher self-esteem, 
better job prospects and economic independence. As well as lifting children out of 
poverty, such an education can also give children a better understanding of HIV and 
AIDS, decreasing the risk that they will become infected. Schools can also offer benefits 
to AIDS orphans outside of education, such as emotional support and care. 
Unfortunately orp~lans may be the first to be denied education when extended families 
60 
cannot afford to educate all the children of the household. This will lead to an idictment 
against SASA (84/1996) in the case where such orphans are between 7 - 15 yrs of age. 
2.6.3 Empowerment for children 
If AIDS orphans are as active members of the community rather than just victims, their 
lives can be given purpose and human dignity. Many children already function as heads 
of households and as caregivers. They are a vital part of the solution and should be 
supported in planning and carrying out efforts to lessen the impact of AIDS in their 
families and communities. 
2.6.4 Protection for the legal and human rights of orphans 
Much can be done to ensure the legal and human rights of AI DS orphans. Many 
communities are now writing wills to protect the inheritance rights of children and to 
prevent land and property grabbing, where adults attempt to rob orphans of their 
property once they have no parents to protect their rights. 
United Nations Children's Fund (2007:4) states that "You find that the parents have 
been productive and have left assets for the children but immediately after their deaths, 
the relatives squander everything. Those that are left without anything are just being 
used for the food rations". Pelonomi Letshwiti, a social worker for Childline Botswana. 
Children orphaned due to AIDS may face exploitation in other areas of their lives as 
well. For instance, evidence suggests that there is a relationship between AIDS orphans 
in Sub-Saharan Africa and increased child-labour (Children on the Brink, 2004:3). 
In his opening address to the conference on orphans and other children made 
vulnerable by HIV and AIDS, the minister of Social Development, Dr Skweyiya, 
highlighted HIV and AIDS as the key challenge of our times (SARPN, 2007:1). The 
minister indicated that this key challenge tests our capacity to build truly caring 
communities. He further indicated that in South Africa in particular, the epidemic 
increases the popUlation of orphans and vulnerable children, while reducing the pool of 
traditional caregivers and the number of breadwinners. The minister argued that South 
Africa's greatest challenge was identification of these children so that we have an idea 
of numbers, in order to plan accordingly. Dr Skweyiya mentioned that Census 2001 put 
61 
the numbers of child-headed households then at more than 248 000, while more than 
30 000 children obtained the foster care grants. However, he maintained that there 
were many others that the department has not yet managed to reach. He indicated that 
it was in this regard that the provincial social departments are prioritising efforts aimed 
at bringing vulnerable children into the social safety net, in cooperation with the 
Department of Justice and Home Affairs. 
TI1e lack of social services support might lead to deprivation of caregivers from 
obtaining foster care grants for their orphans. This may in turn have the consequences 
of orphans escaping the social safety net, thus increasing their vulnerability. These 
vulnerable children could be forced into the streets, or suffer exploitation in the child 
labour force. Furthermore, this lack of social services support could contribute to further 
increase in popUlation of vulnerable children, thus derailing the Social Development 
Department's efforts to obtain the exact number of these orphans and vulnerable 
children. It could also lead to the reduction in the pooi of caregivers willing to give care 
to these orphans and vulnerable children. The minister of Social Development 
reiterated that what makes it imperative for the State and the nongovernmental sector to 
intervene was the pressure on community structures. These structures include the 
extended family system, which has traditionally acted as a safety net for children and 
orphans. 
In 2004, the SASSA Act, 2004 (84/1996) was signed into law. With a view to 
operationalising Sassa, government has committed itself to ensuring that ordinary South 
Africans notice tangible changes to the social-assistance administration system, 
particularly as improved service delivery will affect them directly (Social Development 
Bulletin, 2007:4). 
2.6.5 Meeting emotional needs of AIDS orphans 
Hie physical needs of orphans, such as nutrition and health care, can often appear 
toThe physical needs of orphans, such as nutrition and health care, can often appear to 
be the most urgent (Olsen, 2005:9). But the emotional needs of children who have lost a 
parent should not be forgotten. Having a parent become sick and die is clearly a major 
trauma for any child, and may affect them for the rest of their life. 
62 
The Minister of Social Development, in the same conference on orphans and other 
children made vulnerable by HIV and AIDS, urged delegates to discuss one of the most 
critical but difficult issues, which was succession planning (SARPN, 2007:1). The 
Minister indicated that experience has deemed it necessary that in mitigating the impact 
of the epidemic on children, people need to proactively look at the issue of succession 
planning. He argued that families needed to confront this issue, and be assisted with the 
drawing up of wills and other important documentations and planning. The Minister 
asserts that such action will provide them with opportunity of choosing who will take 
care of their children, and what will happen to family assets such as the family home. 
Failure of parents in drawing up a will has led to fierce fighting between the paternal and 
maternal relatives of one of the orphans whose caregiver was interviewed in this study. 
The fighting was over the legal adoption of the orphans. 
In fact, Levine reports that when a parent dies of AIDS in USA, surviving children face 
an uncertain future about their custody arrangements and financial benefits (Levine, 
1995 as quoted by Ntozi, 1997). This kind of situation is also common in sub-Saharan 
Africa including South Africa. However, in most African countries paternal grandparents 
usually decide who should take care of the orphan. In a survey conducted in some 
regions in Uganda, households were probed on the person who made the decision on 
who is to care for the orphans. The stUdy showed that the clan members (29.8%) 
followed closely by the parents (26.8%) and the orphans themselves (25.4%) made 
decisions (Ntonzi, 1997:29). The study showed that grandparents also made 14.8% of 
the decision-making. When such decisions are taken when parents are still alive, it may 
help in avoiding family members fighting over who is eligible to care for such orphans. 
This may also help improve the relationship between caregivers and other relatives. 
2.7 CONCLUSION 
This chapter presented a literature review on HIV/AIDS, AIDS orphans and caregivers. 
It highlig~lted the global, regional and local (South African) situation of HIV/AIDS. The 
chapter also shared some light on the impact of HIV/AIDS on children, as well as 
caregivers. This involved issues relating to people who provide care to AIDS orphans 
such as the nature of care needed for AIDS orphans. The next chapter presents the 
design of the empirical research. 
CHAPTER THREE
 
EMPIRICAL DESIGN
 
3.1 INTRODUCTION 
This chapter deals with the ways in which the empirical research of this study was 
designed. A qualitative research approach is employed to identify psychological, social 
and economic problems experienced by caregivers of learners orphaned as a result of 
AIDS. The rationale for the selection of the qualitative method of research is explained. 
Technical details such as the reliability and validity of the research method used in this 
study are also considered in this chapter. 
3.2 QUALITATIVE RESEARCH METHOD 
The qualitative research method was chosen as most relevant and suitable for 
identifying psychological, social and economic problems experienced by caregivers of 
learners orphaned as a result of AIDS, which is the aim of this study in Vanderbijlpark 
and Vereeniging. According to Strauss and Corbin (1998:72), Leedy and Ormrod 
(2001: 149) and Brown and Jones (2001: 13), one of the features of qualitative research 
is that it is interpretative in character, that is the inquiries try to account for what 
researchers have given an account of (by asking themselves questions, for example, 
why should learners orphaned as a result of AIDS be given care) and thereafter collect 
the responses from caregivers. 
This interpretative character of qualitative research described above, is in line with the 
sUivey method considered for this research (Bodgdan & Biklen, 2003:147). Surveys 
are used to learn, among other things, about people's attitudes, beliefs, opinions and 
values (Charles, 1995:20). This corresponds with qualitative research in that qualitative 
research also enquires about attitudes, such as why people behave in the manner they 
do when in their natural settings (Denzin & Lincoln 1998:47; Brown & Jones, 2001 :13). 
Qualitative research also concentrates on verbal responses and approaches are not 
limited to formality. The scope is less defined, less structured and data appears as 
words (Bodgdan & Biklen, 2003:7). Strauss and Corbin (1998:91) argue that qualitative 
64 
research is a foundation aimed at covering various methods and approaches into the 
inquiry of human behaviour. It includes exploring the world of people interviewed, 
researching their background and examining the information gathered with the purpose 
of establishing the meaning of facts being provided. What people perceive tends to 
expose how they think things should be, whereas what is initially identified is more likely 
to reveal how things are, especially when field observation extends throughout an 
adequate period of time (Denzin & Lincoln, 1998:56). In the context of this research, 
the psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS were established. 
McMillan and Schumacher (1997:390) contend that, by trying to understand and 
observe a problem, qualitative researc~1 may en~lance the following elements of 
endeavour related to educational intervention in the identified patterns of human 
behaviour, namely: 
• establishing which causal factors can be influenced and which cannot; and 
• predicting transformation that might be introduced in the domains concerned. 
In the light of the above paragraphs, the qualitative research method may be explained 
as a guideline which produces descriptive information as engaged in people's own 
written or verbal words and identified behaviour rather than in figures. This implies that 
the correct meaning of perception held by psychological, social and economic problems 
experienced by caregivers of learners orphaned as a result of AIDS should be deduced 
(Denzin & Lincoln, 1998:35). McMillan and Schumacher (1997:233) further assert that 
qualitative research interprets reality as interactive and as a distributed experience 
viewed by individuals. In this research, di1:ferent psychological, social and economic 
problems experienced by caregivers of learners orphaned as a result of AIDS, are 
examined and a relevant conclusion is reached. 
3.3 RATIONALE FOR CHOOSING THE QUALITATIVE RESEARCH METHOD 
The qualitative research method was considered with the purpose of revealing the 
psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS. Due to the evidence that various people view the world 
65 
differently, responses of caregivers are sought in order for relevant conclusions to be 
drawn. The qualitative method of research is viewed as appropriate for this research 
because it becomes possible to measure the reactions of many people to a limited set 
of questions, thus facilitating direct comparisons between people (Best & Kahn, 
2003:241). 
The word qualitative signifies that emphasis is placed on processes and meanings, not 
accurately scrutinizing or measuring in terms of quantity, amount, magnitude or 
frequency. The socially assembled nature of reality is stressed; answers are sought 
about questions and subsequently given meaning (Leedy & Ormrod, 2001 :147-148; 
Denzin & Lincoln, 1998:4). In this regard, qualitative inquiry gives rise to new questions, 
expands the frame of reference· of the individual and enables the examination of 
evidence in a productive manner. Qualitative researchers also concentrate on natural 
settings as they are interested to discover new insights. Nothing is taken for granted 
and they want participants who are the focus of the study to speak for themselves 
(Henning, van Rensburg & Smit, 2004:1-5; Leedy & Ormrod, 2001:149; Best & Kahn, 
2003:240). In present research, caregivers of learners orphaned as a result of AIDS are 
the focus of the study and they respond to particular questions. An open-ended section 
where the opinion of the participant is invited accompanies each question. This is 
necessary in present research because when caregivers speak for themselves, new 
insights are discoverable about their psychological, social and economic problems they 
experience when giving care to learners orphaned as a result of AIDS. 
Qualitative research also places emphasis on comprehension by paying attention to the 
words used by people and the intention of such research is to discover patterns 
emerging from thoughtful analysis of the research topic. Socially contextualized 
findings and limited generalizations are the discoveries made through qualitative 
research (Evans, 1995:55; Bodgdan & Biklen, 2003: 10). 
Finally, qualitative investigation broadens the understanding of educational research by 
extending the researcher's frame of reference. It provides a means of counteracting 
rationalization of researchers and assists them to search for universal and infinite 
generalizations. In present research, the qualitative method of investigation should 
66 
provide constant truths pertaining to the concept of psychological, social and economic 
problems experienced by caregivers of learners orphaned as a result of AIDS (Leedy & 
Ormrod, 2001: 147). 
Strauss and Corbin (1998:30) indicate that the qualitative researchers should apply the 
following important concepts: 
•	 qualitative research is designed to discover what can be learned about a 
phenomenon of interest; 
•	 qualitative research has various interpretations. It reveals logistics and the 
relevance, which has an influence on the readers. It enables a researcher to gain 
insights about the nature of a particular phenomenon. It develops new concepts or 
theoretical perspectives about the phenomenon and also discovers the problems 
that exist within the phenomenon; 
•	 impressive conceptions, related to the origin of truth of the world, the nature of 
certain situations, settings, processes, relationships, systems, or people, are 
revealed; 
•	 the focus is based on the participants' ideas and experiences; 
•	 simple social events in their original situations display aspects of real life in the 
research process; 
•	 it assists in the justification of correct life skills and the future success of the 
individual; 
•	 it stresses identification, induction and formulated theory; 
•	 it involves the participant's observation in detailed interview and conversational 
analysis; 
•	 it allows a researcher to test the validity of certain assumptions, claims, theories and 
generalizations within real world contexts; and 
•	 it provides a means through which a researcher can judge the effectiveness of 
particular policies, practices and innovations (Best & Kahn, 2003; Charles, 1995:21). 
67 
From the foregoing paragraphs it is clear that qualitative research methods enable the 
researcher to investigate selected matters in depth and detail. The nature of the 
qualitative method used in this research was interviewing. 
3.3.1 Interviews 
The interview was selected as an instrument to be used for collecting information as 
well as to give clarity on certain questions posed in the interview schedule. Hlrough the 
interviewees, the researcher has the chance to discuss, answer and pose questions 
related to the phenomenon (Rubin & Rubin, 1995:36). This method is regarded as 
characterized by open-response questions which enable the researcher to determine in 
what way participants interprete their world and how they interprete events in their lives. 
This type of interview provides researchers with a uniform method of recording 
information, and therefore enhances the validity of the interview as a measuring 
instrument (Evans 1995:53; Bodgdan & Biklen, 2003:121). 
Conducting an informative interview is not as easy as it might seem. Eisner (1998: 183­
185), Best and Kahn (2003:255-257), Henning, van Rensburg and Smit (2004:50-56) 
and Briggs (2002:916) offer the following guidelines to researchers for conducting 
productive interviews: 
•	 Make sure interviewees are representative of the group - The researcher 
should choose people who are expected to give typical perceptions and 
perspectives. In some cases, the researcher may intentionally "pick extremists" who 
should be identified as such in the notes. 
•	 Find a suitable location - In theory, the researcher can conduct an interview 
anywhere people are willing to talk. It will probably be a more successful interview if 
a quiet place is found where the interviewee is unlikely to be distracted or 
interrupted. 
•	 Take a few minutes to establish rapport - Commence the conversation with 
small talk that can break the ice. Be courteous and respectful at all times. 
•	 Get written permission from participants - Explain the nature of the research 
and plans for using the results. Ask the participants to sign an informed consent 
68 
form. Offer to provide an abstract or copy of the research report once the research is 
completed. 
• Focus on the actual rather than on the abstract or hypothetical -
Researchers are more likely to get revealing information if they ask what a person 
does or would do in a specific situation. 
• Do not put words in participants mouths ­ Let participants choose their own 
way of expressing their thoughts. A good interviewer is a good listener who lets 
people say what they want to say in the way that they want to say it. 
• Record responses verbatim - Whether researcher uses handwritten notes, 
shorthand, or a tape recorder, everything the participants says should be captured, 
especially if the interview is an unstructured one. If the researcher suspects that an 
interviewee may have said something other than was intended the response must 
be played back to check accuracy. 
• Keep your reactions to yourself - Although researchers would not necessarily 
want to maintain a continual "poker face", they are more likely to get accurate 
information if they do not show surprise or disapproval of what is being said. 
• Remember that researchers are not necessarily getting the facts - As 
confident and convincing as some participants may be the researcher should always 
treat their responses as perceptions rather than as facts. 
In qualitative research studies, interviews are often quite open-ended, revolving around 
one or two central issues while addressing di'lferent social problems for different 
participants (Laws, Harper & Marcus, 2003:197; Kitc~lin & Tate, 2000:12). In survey 
research, interviews are more structured. In a structured interview, the researcher asks 
a standard set of questions and nothing more. In a semi-structured interview, the 
research may follow the standard questions with one or two individually modified 
questions to get clarification or probe a person's reasoning (Gubrium & Holstein, 
2002: 13). In this research the researcher used personal interviews. 
Personal interviews have the distinct advantage of enabling the researcher to establish 
rapport with potential participants and therefore gain their co-operation (Henning, van 
Rensburg & Smit, 2004:66-67). It also allows the researcher to clarify ambiguous 
69 
answers and when appropriate, seek follow-up information. These interviews take time 
and may not be effective when very large sample sizes are incorporated in the particular 
research (Johnson, 2002:103). 
The following are advantages of interviews: 
•	 by making personal contact, interviewees get the impression that they are being 
valued and they therefore provide sincere responses; 
•	 the interview setting enables the interviewer to clarify questions that participants may 
find confusing; 
•	 participants may broaden their answers or be limited from the central topic in ways 
that prove useful to the researcher; and 
•	 provide an in-depth understanding of participants' motives, their pattern of reasoning 
and emotional reactions not possible with questionnaires (Thomas, 1998:135). 
The main disadvantage of interviews is that they are more expensive and time­
consuming than questionnaires (Frey & Oishi, 1995:3). 
An interview was planned for identifying the psychological, social and economic 
problems experienced by caregivers of learners orphaned as a result of AIDS. Rubin 
and Rubin (1995:56) claim that an interview permits the interviewer to maintain an 
understanding of what the interviewee means by responses he/she gives to questions 
asked. Interviews have been employed extensively across all the disciplines of the 
social sciences and in educational research as a key technique of data collection. 
The following features (Thomas, 1998:134) are deduced from interviews: 
•	 interviewers-can probe for more specific answers and can repeat a question when 
the response indicates that the interviewee has misunderstood the question; 
•	 an interview does not have a time limit, people who cannot read and write could still 
answer questions in an interview; 
•	 the interviewer is present to observe non-verbal behaviour as well as to assess the 
validity of the interviewee's answers; 
70 
•	 the interviewer may standardize the interview environment, for example by making 
sure that there is privacy and no noise; 
•	 the interviewer has full control over the order of questions to be answered; 
•	 the interviewee cannot retract an answer once it has been given and thus the 
interviewer can record answers from the interviewee as they arise; 
•	 the interviewer can ensure that all questions are answered; 
•	 provide an in-depth understanding of the participants' motives, pattern of reasoning 
and emotional reactions not possible with questionnaires; and 
•	 the interviewer can record the exact time, data and place of the interview (Thomas, 
1998:135). 
In this research, the participants were requested to be interviewed and informed how 
important this research could be in adding to existing information on the caregiving of 
AIDS orphans. They were also told before the interview that the research may also 
provide solutions or alternatives to problems AIDS orphans faced and thereby 
contribute to the improvement of their psycho-social well-being and wellness. 
A semi-structured interview was employed in this study, during which the researcher 
listened intently, made notes and where necessary, sought clarity or more information 
from interviewees (Laws, Harper & Marcus, 2003:198; Kitchin & Tate, 2000:212). 
The interviews were conducted as follows: 
•	 the interviewer introduced herself and explained .the need for the interview and 
how the interviewees were selected; 
•	 secondly, questions were asked and answers were recorded. The interviewer 
accurately recorded answers and did not summarize or paraphrase, because this 
may have caused loss of information or could have distorted the answers; 
•	 thirdly, the interviewer elicited to seek clarity from the interviewees by means of 
asking probing questions to supply more information. A probe is a neutral request to 
clarify any ambiguous answers or to obtain a relevant response; and 
71 
•	 finally, the interviewer thanked participants and then entered details like time, 
place of interview and attitude of participants. Every disturbance that might have 
taken place, such as a phone ringing and the participants going to answer it for ten 
minutes was also recorded (Neuman, 1997:258). 
In order to reach the correct conclusion for this research, it is necessary in the next 
section to focus on the character of a research instrument. 
3.4 CHARACTERISTICS OF A RESEARCH INSTRUMENT 
An imperative attribute of research instruments is the existence of reliability and validity, 
the latter being the most important characteristic (Bryman & Cramer, 1999:5; Thomas, 
1998; 133). Mouton (1996:78) postulates that research is a scientific method of enquiry, 
thus information should be carefully assessed by means of reliability and validity 
focuses on the trustworthiness (Charles, 1995:101), which invite explanation of 
phenomena reliability and validity. Validity involves what is intended to be evaluated and 
for whom it is relevant, whereas reliability includes the consistency with which the 
instrument appraising whatever should be measured (Thomas, 1998: 138; David, Bryd & 
Mcintyre, 1999:49). 
3.4.1 Validity 
The relevancy, meaningfulness and usefulness of conclusions made by researchers, 
can be defined as the validity thereof (Henning, van Rensburg & Smit, 2004:146-149). 
Strauss and Corbin (1998:76) state that validity is employed to guarantee that 
information includes everything it should and that it does not include anything that 
should not be included. Validity is the way of discovering a true and precise picture of 
what is claimed to be described and is dependent on the purpose in which 
measurement takes place (RUbin & Rubin, 1995:85; Charles, 1995:102; Laws, Harper 
& Marcus, 2003:417; Kitchin & Tate, 2000:35). The results of an interview can therefore 
be valid in one situation and invalid in another. 
Validity, therefore, is the degree to which a survey instrument evaluates what it purports 
to measure (Best & Kahn, 2003:166). For instance, the research of the psychological, 
72 
social and economic problems experienced by caregivers of learners orphaned as a 
result of AIDS,is valid if the researcher formulates and asks questions that are relevant 
to psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS. 
A more appropriate definition of the concept validity is provided by Best and Kahn 
(2003: 166) below. 
"Validity is concerned with the accuracy of scientific findings. Establishing 
validity requires: determining the extent to which conclusions effectively 
represent empirical reality, and assessing whether constructs devised by 
researchers represent or measure the strategies of human experience that 
occur". 
The functionality of present research is to ascertain the concepts pertaining to 
psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS. Reality is represented in the interview schedule (cf. 
Appendix 1) used in this research by posing questions which are relevant to the 
concepts of the psychological, social and economic problems experienced by 
caregivers of learners orphaned as a result of AIDS, and supported by the fact that it is 
relevant to human experience as well. Therefore only caregivers taking care to AIDS 
orphans were requested to participate in this research. Accurate interpretation of 
results can only be made if the group to be studied precisely conforms to specified 
standards in all aspects. 
To obtain validity, Leedy and Ormrod (2001 :31) and Fink (1995:500) claim that the 
researcher has to employ standards which may have a meaningful link with research 
questions and with data analysis, in order to direct him/her in creating valid arguments, 
findings and reports. This emphasis is considered with the idea that validity is a single 
unitary concept that requires evidence for the specific use that it cited. The questions 
posed in the interview schedule are of such a nature that ambiguity should not occur in 
response. Reliability, dealing with the consistency with which an instrument evaluates, 
is closely linked to the concept of validity. 
73 
3.4.2 Reliability 
Reliability refers to the consistency of measurement to the extent with which the results 
are similar over different forms of the same instrument or occasions of data collecting 
(Leedy & Ormrod, 2001 :31-32; Best & Kahn, 2003:276-277). In other words, the same 
results are obtained each time the researcher uses various techniques for assessing the 
collected data (Charles, 1995:103). Charles adds that reliability, in ordinary terms, 
means dependability or credibility. With respect to measurement, the meaning is 
similar. The ratio to which a test constantly measures what it is intended to measure, is 
referred to as the reliability thereof. If a reliable test were to be re-administered, the 
scores obtained would essentially reveal similar scores the second time. 
Reliability directly points to the consistency of the scores acquired. If scores are 
inconsistent they provide no useful information and cannot be declared valid. If 
reliability of a test improves, the validity improves as well (Henning, van Rensburg & 
Smit, 2004:146). 
The questions contained in the interview schedule are aimed at concepts relevant to the 
psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS which safeguards that only relevant responses will be 
given. There might be errors in a set of collected data; therefore reliability is utilized 
with the aim of achieving a more precise reflection of the truth. Clear and relevant 
questions were formulated for the interview with the purpose of attaining reliable data 
that is free from measurement mistakes (Mouton, 1996:97). 
The next section gives a careful thought to sample selection and .data collection. 
3.5 POPULATION AND SAMPLE SELECTION 
Cormack (2000:51), Best and Kahn (2003:12) and Leedy and Ormrod (2001 :223-224) 
postulate that sampling is a process of choosing a small group of participants from a 
defined population. They further define sampling as the scientific research in which a 
number of individuals are stakeholders in establishing a concise conclusion about a 
large number of people. Sample selection is the primary technique used to collect data 
and the manner in which cases rich in information, present themselves. 
74 
The reasoning behind sampling is associated with the purpose of the research as well 
as the research problem studied (Evans, 1995:56; Best & Kahn, 2003:12). Cormack 
(2000:52) states that, when an educational design is in the planning stage, the 
researcher should take the population, to which the results should be generalized, into 
account. Such intention should involve decisions over sample sizes and sampling 
methods. Qualitative research is mainly focused on the description of the site and 
sample (Frey & Oishi, 1995:14-15). In this instance, questions regarding where, how 
and with whom a particular phenomenon prevails, may be asked. Best and Kahn 
(2003:342) and Frey and Oishi (1995:16) emphasize the importance of a selection 
strategy which should be employed in order to achieve the sub-set of the population 
from whom data is collected by means of interviewing, observation and documentation. 
It is therefore important to conceptualize sampling as an aspect of research. 
This research has chosen a specific population, which comprises the population of 
caregivers of AIDS orphans in the Vanderbijlpark and Vereeniging districts, in the Vaal 
Triangle. Due to a large population of caregivers taking care of AIDS orphans in these 
districts, the population sample was limited to the following categories of families: 
•	 two caregivers in Vereeniging who were personally known by the researcher 
to be taking care of AIDS orphans attending at her school 
•	 five caregivers provided by Bophelong primary schools in Vanderbijlpark. 
•	 four caregivers provided by social workers (Three from Bophelong in 
Vanderbijlpark and one from Sharpville in Vereeniging) - n=11 . 
The sets of caregivers interviewed ranged from single- to two-parent families. 
Furthermore, the families were categorised as foster-home, extended and child-headed 
family. In certain selected cases relating to specific caregivers, people from the 
following organisations were interviewed in order to get more clarity on the facts 
provided by the caregivers: 
•	 nine members from a non-governmental organisation (NGO) working on different 
HIV/AIDS related cases and community related projects - n=9; 
•	 seven school teachers of one of the affected orphan - n=7; and 
75 
• two family members of one of the orphans - n=2. 
These follow-up interviews were conducted with the consent of the caregiver, and were 
necessitated by a need to verify some of the information given by this caregiver, as well 
as comparing the responses with the literature. 
3.6 EMPIRICAL RESEARCH DATA COLLECTION 
Empirical research data collection forms an important part of any research because it 
does not only give a description of what empirical research data could be collected and 
how it should be collected but it also constitutes the basic primary information from 
which conclusions are drawn (Coleman, 1998: 161; Bryman & Cramer, 1999:5). It 
creates an essential component of any research because it does not only supply an 
explanation of what data is collected and how it is received, it further impacts the 
important data from which conclusions are drawn (Best & Kahn, 2003:254; Bassey, 
1999:81). 
The instrument that was used to collect data in this research was an interview schedule. 
The interview schedule was the research measuring instrument used in order to collect 
primary information. The researcher made use of interviews to formulate an opinion 
about the psychological, social and economic problems experienced by caregivers of 
learners orphaned as a result of AIDS. In order to follow this course, the researcher had 
to obtain permission from all the above stated participants to voluntarily participate in 
the study. 
3.7 THE INTERVIEW SCHEDULE 
Different interview schedules (see Appendix Schedules 1, 2, 3 & 4) were used to 
conduct research, in order to select a sample of participants and administer an interview 
schedule to collect empirical research data. The items in the interview schedules were 
developed by the researcher according to the method suggested by Reason and 
Bradbury (2001 :329), Mouton (1996:36) and Bounds, Malgee and Mayhew, (2005:37). 
76
 
The interview schedule is the most broadly used technique for acquiring qualitative 
research information from participants. It is relatively economical, contains structured or 
unstructured questions, ensures that the participants remain anonymous and the 
questions can be asked with a specific purpose in mind (Evans, 1995:55; Best & Katm, 
2003:301). 
Interview schedules are conversationally administered to resolve opinions, attitudes, 
preferences and perceptions whereas studies that deal with sensitive topics that invoke 
a deeper response that cannot be measured by means of a questionnaire. Complex 
responses are not required where the concept or notion of the psychological, social and 
economic problems experienced by caregivers of learners orphaned as a result of 
AIDS. This qualitative research dissertation therefore revolves around opinions, 
attitudes, preferences and perceptions on the psychological, social and economic 
problems experienced by caregivers of leamers orphaned as a result of AIDS. The 
above mentioned method of obtaining information about the psychological, social and 
economic problems experienced by caregivers of learners orphaned as a result of AIDS 
is regarded appropriate for the present research. Certain practical considerations 
require attention to ensure the functionality of the interview schedule. 
3.8 DEVELOPMENT OF THE QUESTIONS FOR THE INTERVIEW SCHEDULES 
Piantanida and Garman (1999:250), Bassey (1999:67) and Best and Kahn (2003:303­
308) indicated that once objectives have been defined and it has been ascertained that 
no existing methods can be used, the task of writing the questions may begin. It is best 
to write the items objectively and to consider the way the results are analyzed once the 
data has been collected (Reason & Bradbury, 2001 :83). In this research all questions 
that were deemed irrelevant were eliminated. It is essential to provide clarity to what 
the researcher wants to achieve by posing the types of questions listed below. 
Questions listed below solicited the opinion of participants on issues related to the 
psychological, social and economic problems experienced by caregivers of learners 
orphaned as a result of AIDS. 
Generally, the questions were designed to investigate the impact of HIV/AIDS on 
caregivers, with regard to the following factors: 
77
 
• Family background; 
• Emotional and health; 
• Financial; 
• Social 
Although not structurally arranged during the interview, typical questions, which guided the 
interview, are contained in different appendices (see Appendix Schedule 1, Appendix 
Schedule 2, Appendix Schedule 3 and Appendix Schedule 4). 
Questions 1 to 6 (see Appendix Schedule 1) sought to investigate the family 
background of caregivers. This background is necessary because it has some effects 
on the aspects being investigated, that is, the emotional; economical; social and health 
impact of HIV/AIDS on caregivers. Questions 7 to 16 (see Appendix Schedule 1) 
investigate the general emotional impact of HIV/AIDS on caregivers, while questions 17 
to 19 (see Appendix Schedule 1) investigated the health impact. Questions 20 to 27 
(see Appendix Schedule 1) investigate the extent to which caregivers are sUbjected to 
the financial impact of HIV/AIDS. The impact of HIV/AIOS on the social life of caregivers 
is investigated in questions 28 to 36 (see Appendix Schedule 1). 
Questions 37 to 43 (see Appendix Schedule 2) sought to verify from grandparents of 
caregiver one's orphans, while Questions 44 to 56 (see Appendix Schedule 3) sought to 
get clarity from educators of the same orphan. Questions 57 to 64 (see Appendix 
Schedule 4) soug~lt to establish any community help given to orphans and their 
caregivers. 
3.9 ETHICS AND INFORMED CONSENT 
Since the nature of the empirical research that was conducted for this study is highly 
invasive of intimate aspects of the participants' lives and their lived experiences, great 
care was taken to protect research participants by obtaining permission from legal 
guardians where health authorities or schools were contacted. A copy of this letter of 
permission is contained in Appendix 5. 
78 
3.10 CONCLUSION 
In this chapter the empirical research methods of data collection were described in 
detail. Clarity was provided for reasons of using qualitative methods of research. 
Characteristics of a research instrument, population and sample selection also received 
attention. A research instrument, namely an interview schedule was explained. The 
reasons for including specific questions in the interview schedules were also given 
attention. Questions asked in the interview schedule were also clarified. 
The next chapter deals with the analyses and interpretations of the empirical research 
data which were collected during the interviewing sessions. 
CHAPTER FOUR
 
ANALYSES AND INTERPRETATIONS OF THE EMPIRICAL RESEARCH
 
DATA 
4.1 INTRODUCTION 
Chapter four provides analyses and interpretations of the empirical research data, which 
the researcher elicited, from the participants. Bodgdan and Biklen (2003: 147) postulate 
that analysis is a way of gathering and explaining the content of text. The content 
includes meanings, thoughts, words, themes and messages that can be communicated. 
The text in this regard is anything written, visual and spoken, which is utilized as a 
medium for communication. 
Collected data has to be analysed and organized before interpretations can be made 
(Charles, 1995:35). Firstly, data analysis is defined and thereafter responses from 
caregivers of AIDS orphans are presented. 
Data analysis is the way of choosing, classifying, Viewing and discarding information. In 
this research, the mass of collected empirical research data were analysed and 
interpreted with the purpose of bringing order and structure to information (Bassey, 
1999:81). The researcher assumes that caregivers of AIDS orphans experience 
emotional, economic, social and health problems. 
Analyses of empirical research data in qualitative research involve logic. This implies 
that reasoning is used and conclusions are drawn based on evidence (Strauss & 
Corbin, 1998:58). Bassey (1999:83) stipulates that once reasoning draws a conclusion, 
it should clarify the logic of the data for analysis purposes. In this process of research, 
the researcher investigates patterns of similarities and differences and attempts to 
disclose their diversity. The researcher is responsible and accountable to establish the 
extent to which materials are valid and reliable (Strauss & Corbin, 1998:179). Charles 
(1995:48) further emphasizes that reliability and validity of the participants' responses 
should be maintained as far as possible. 
80 
4.2	 RESPONSES OF CAREGIVERS (N=11) WHO FORMED THE POPULATION 
SAMPLE OF THIS RESEARCH 
This section provides the responses of the eleven caregivers (n=11) who formed the 
sample population of the empirical research of this study. 
4.2.1 Questions one to six of the interview schedule sought to investigate the 
family background of caregivers 
The family background of caregivers who participated in this research was necessary 
because the researcher assumes that the plight of AIDS orphans could have an impact 
on the emotional, economical, and social and health impact of their caregivers. 
All	 caregiver participants responded to questions one to six (see Appendix 1) such as: 
•	 How many orphans are under their care? 
•	 How did they know about the orphans, and why did they take them into their 
care? 
•	 What is the relationship between them and the orphan/s? 
•	 For how long have they provided care giving? 
•	 What type of parenting are they giving to this/these orphan/s
 
(for example, adoption or foster)?
 
•	 Could they explain the type of family structure that exists in their
 
home (for example, single; traditional; child-headed or orphanage)?
 
It is also worth noting that these questions were not asked in any particular order, but 
were dictated by the responses received from the participants. The following responses 
were received and are presented verbatim: 
4.2.1.1	 Caregiver one's responses to questions one to six 
"We are a traditional type of a family, where me and my husband give care to two 
orphans, a brother and his younger sister. We have now legally adopted the two 
orphans after your (refers to, me, the researcher's) intervention". This caregiver was 
identified after the researcher was requested by one of the boy orp~lan's educator to 
investigate circumstances leading to his poor health and educational conditions. The 
researcher is a member of a School-Based Support Team, which is responsible for 
81 
giving support to learners affected and infected by HIV/AIDS and learners orphaned by 
HIV/AIDS. The school-based support team is also responsible for learner support and 
guidance, working with police, social workers, community health centres and district 
education departments to form an ecosystemic network with them for the psycho-social 
and physical development of these learners. In the process of helping the two orphans, 
which is part of her lived advocacy way of life as a social constructivist, the researcher 
organised appointments with social workers for the lady caregiver, so as to initiate the 
adoption process. Although the caregivers were now caring for the orphans, they did not 
have control over the foster care or child grants of these two orphans. The orphans' 
grandparents were responsible for the collection of the social grants from the 
Department of Social Development and Welfare. 
"I'm the aunt to the two orphans since their mother was my sister. However, these two 
orphans were initially living with their grandparents from my mother's side, after the 
death of their mother in 2003. Their father disappeared just before the death of their 
mother. I discovered during my visits to my parents that the two siblings were not 
receiving proper childhood care from their grandparents. However, it was only after I 
was requested by one of the educators of the boy orphans, to come and discuss his 
worrying conditions at school that I decided to take them under my care". 
4.2.1.2	 Caregiver two's responses to questions one to six 
"We are a normal two-parent family giving care to two orphans, who are a boy and a 
girl. The two orphans are my grandchildren from my two daughters. I have been taking 
care of these children since the death of both their mothers a year ago. Although one of 
the orphans' fathers is still alive and they are aware of his whereabouts, their mother's 
death wish was that her children should be under our (grand-parents') care and not their 
stepmother's. Their mother was worried that their father might get married to another 
woman after her death and the chances that his new wife would take good care of her 
children were slim". 
4.2.1.3	 Caregiver three's responses to questions one to six 
"I give care to two orphans who are a brother and sister. The two siblings are related to 
82 
my partner. We have been living together for few years but are not legally married. He 
is a brother to the two orphans. We have tried to adopt the orphans but our attempts 
were frustrated by the fact that we are not legally married. Although the social workers 
have advised us to just sign at the commissioner's place, I'm reluctant because I would 
not get the approval of my parents without the cultural obligations my future husband 
has to satisfy". 
I informed the caregiver that as far as I can remember, there is no law prohibiting the 
couple to legally adopting the orphans. However, I promised her that will do some 
research regarding adoption of orphans in South Africa, and advise her appropriately. 
"The two siblings do not share the same father. We were already living with the boy 
orphan while his mother and stepfather were still alive. Initially, this boy used to live 
with his grandfather, but then decided to live with us after some time. At that stage, his 
sister was living with her parents. However, when her mother's illness got worse, her 
father sent both of them to her (orphan) grandfather to take care of them, as his health 
was also not good. The orphans' parents died one after another. We only took care of 
the girl orphan after we were approached by one of her educators. The educator 
informed us that she was worried that the two siblings do not seem to be getting the 
same care. After we explained the situation of the two orphans to the educator, and that 
they were unable to take her into their care due to family politics, the educator pleaded 
with us to reconsider our decision". 
4.2.1.4	 Caregiver four's responses to questions one to six 
"I am a single parent giving care to four orphans and one vulnerable child. I'm legal 
foster parent. I was initially giving care to five orphans. However, one of the orphans 
ran away from my care. While this run-away was still away, she gave birth to a child, 
whom she gave up for adoption by me. The ages of orphans in my care range from 11 
months to sixteen (16) years. The 11 months old baby is actually the daughter of this 
orphan who ran away from my care". 
The caregiver explained during the interview that this run-away mother gave her child 
up for adoption since she did not want her child to be aware of the type of life she was 
83 
living. It was apparent from the discussions that the caregiver was aware that this run­
away orphan might be involved in prostitution, even though she did not say it. When 
asked whether she has informed the social workers about the life that this run-away 
orphan is leading, she said that it was difficult for social workers to trace her. 
"I have legally secured fostering of these orphans with the Social Development Services 
Department in Johannesburg. You see, I was initially liVing with my foster children in 
Soweto before relocating to Vanderbijlpark. My desire to adopt orphans is inherent in 
my family, and it's like a family legacy. My own parents had adopted children from 
various backgrounds. Both the orphans and myself do not know the other orphans' 
family backgrounds". 
4.2.1.5	 Caregiver five's responses to questions one to six 
"I am a single parent giving care to two twin brothers who are eight years old. I'm a 
sister to this other caregiver. I like my sister here, applied with the Johannesburg social 
services department for fostering orphans. The twin brothers were born to a woman 
who originated from one of the coloured township in the Cape. Their mother came to 
Johannesburg to work in one of the sex industries in Hillbrow. I adopted these orphans 
while their mother was still alive. However, their mother has since died from HIV/AIDS 
related illness". 
nlis caregiver is a sister to caregiver NK, and they were interviewed at the same time 
as. She is the one W~IO was requested to care for her sister's orphans when she was 
away to their mother's place. 
4.2.1.6	 Caregiver six's responses to questions one to six 
"We were a stable two-parent family giving care to our grandchildren. However, their 
grandfather has since passed away. I am giving care to three orphans, one of which is a 
twin. This twin is living with her other two sisters. Her twin brother lives with her aunt 
because of fierce fighting between them (twins). They were fighting everywhere that is 
at home, school and even when they were playing with the other children. Their mother 
died from HIV/AIDS related illness. The twins and their sisters have three different 
84 
fathers who are all not known to me. I'm living in this shack, which does not even have 
windows". 
I was quite perturbed by the conditions in which the family was living, and promised that 
I would try to see if I could pull some strings to help find them a better place such as an 
RDP house. Although I knew it could be very difficult to do that, but my belief was that 
with my influence as a researcher, I might be able to succeed. 
4.2.1.7 Caregiver seven's responses to questions one to six 
"We are a two-parent family giving care to two brothers. I'm the aunt to the two 
orphans, and have legally adopted them. We started giving care to these orphans when 
their mother was critically ill. Their father had also died. They were orphaned due to 
HIV/AIDS. We were forced to take care of these orphans because none of my other 
fourteen siblings would have anything to do with the two orphans". 
4.2.1.8 Caregiver eight's responses to questions one to six 
"I am taking care of six orphans, and I'm a single parent. I have legally adopted all the 
orphans. Some of these orphans were adopted from the social services departments 
through the help of social workers; while others were picked up from the neighbourhood 
after their parents had died from HIV/AIDS related illnesses. Their relatives rejected 
most of these orp~lans because their parents had die of HIV/AIDS. In fact, one of the 
orphans used to live with his grandfather. This orphan was related to me and I had once 
taken care of him even when his parents were still alive. Her parents asked me to take 
the child to the doctor when he was ill. However, h.is parents took him back when he 
was cured from his illness. After the death of his parents he was taken to live with his 
grandfather. However, I discovered during the funeral of the orphan's grandfather that 
he was not having any communication with his grandfather. He spent most of his entire 
life looking after his grandfather's cattle. When he came back home in the afternoon, he 
would eat and then go to his bedroom. This affected his speech". 
"Another of my orphans,who is a girl, was living with her grand-mother and her uncles. 
The child used to visit the caregiver during the day and she would force the child to go 
85 
back to her family at night. However, I noticed that the child would be reluctant to leave 
and cry hysterically". 
"One day I decided to visit the child's place to investigate why the child was not happy 
to go back to her place. After I had knocked at the door several times without any 
answer, I opened the door. I was shocked upon entering the house to find the child 
sleeping between her uncles. When I asked if there was any woman in the family, I was 
told that the child's grand-mother was a busy woman and does not spend most of her 
time at home. I then requested the uncles if I could take care of the child until her grand­
mother can make herself available for the child. Ultimately when the grand-mother 
arrived at home, the child's uncles informed me that one of the neighbours had taken 
her to my home. She then came to me to enquire about the child. I then informed her 
about the situation at her home, and even requested t~le grand-mother to allow me to 
care for the child. The grand-mother said she would be pleased, and in fact she would 
be relieved, as she is unable to take good care of the child. The grand-mother even 
went together with me to the social workers to arrange for formal adoption". 
4.2.1.9 Caregiver nine's responses to questions one to six 
"I'm single and giving care to my younger sister who is seventeen years old. We are 
orphans and my mother died from HIV/AIDS related illness in 2004. We have been 
living together since the death of my mother". 
"I have a boyfriend, however, he does not live with us. He comes to visit frequently and 
he is working. I am presently a first year student at Vaal University of Technology. I am 
doing a degree in analytical chemistry". 
4.2.1.10 Caregiver ten's responses to questions one to six 
"We a traditional two-parent type of a family. I'm looking after my brother's two children. 
Their parents died within three months of each other's death. Although my brother was 
very secretive about his personal life, the manner in which both him and his wife died, 
gives one the impression that their deaths must have been HIV/AIDS related. You see, 
it's our belief that it's our obligation to take care of my brother's children, as tradition 
86 
necessitates. However, the adoption has not yet been finalised as their mother had 
given her children to the care of her younger sister just before she died. This has 
created a bitter war between the two families. The older orphan is sixteen years old, 
while his sister is seven years old. The two orphans are currently staying with their 
uncle, from their mother's side because they are closer to their schools". 
It was apparent during the interview that the two families, which are from the orphans' 
mother and 1'ather sides, were fighting over the adoption of the orphans. The caregivers 
indicated that the other family's lawyer informed them that the orphans' mother has 
given them under the care of her younger sister. However, there was no testament 
indicating this. It was also clear that the orphans' parents were not having good 
relationship with each other before their deaths. 
I mentioned to the caregiver that usually the mother would always try to ensure that 
when she dies her children are given to the care of someone that she trusts. So, it was 
possible that she has given her children under the care of his sister because she was 
convinced that she is the best person to do that. However, I can also understand their 
reasons for wanting to care for the two orphans, as tradition dictates. I advised them to 
seek advices from the social workers, as they are the best professional people to 
address the problem. I informed them that they should also be prepared for any shock 
since social workers always resolve adoption problems for the benefit of the child only, 
not the feuding parties. 
4.2.1.11 Caregiver eleven's responses to questions one to six 
"I'm a single-parent family. I am 22 years old and I'm caring for my younger brother. I 
started caring for my younger brother after the death of our mother about 5 years ago. 
After the death of our mother, we were taken cared of by our grandmot~ler, who is now 
ninety-seven years old. Our father was not staying with us as he was working away 
from home. After the death of our mother, our father only sent us money. However, our 
father also died and I was forced to quit school since our grandparents could not afford 
to pay our school fees and support us with other things. I was then forced into marriage 
so as to support my brother and my grandparents. However, the marriage did not last 
long, as I suffered emotional, physical and sexual abuses from my husband. I am 
87 
currently working as a domestic worker, and only see my family once a month. My 
brother and my two children still live with my grandmother, whose health conditions are 
deteriorating at a very fast pace". 
4.2.2	 Questions seven to sixteen investigated the general emotional impact of 
caring for AIDS orphans on caregivers 
The caregiver participants responded to the following questions: 
•	 How is the relationship between them and the two AIDS orphans? 
•	 Do they have any other children except the two AIDS orphans? 
•	 How is the relationship between their children (if any) and the two AIDS orphans? 
•	 How is the relationship between their relatives and the two AI OS orphans? 
•	 Are any of the two AIDS orphans infected with HIV? 
•	 Are the two AIDS orphans aware of their HIV/AIOS status? 
•	 How does carrying for children orphaned due to HIV/AIOS affect their approach 
to life? 
•	 Do they personally give treatment to orphans infected by HIV? 
•	 Have they received any training or counselling regarding treatment of HIV 
infected persons? 
•	 Would they advise other people to be caregivers? 
The following is a verbatim account of the general emotional impact of caring for AIDS 
orphans on caregivers, as highlighted by the responses of the caregiver participants 
who formed the sample population of this study: 
4.2.2.1 Caregiver one's responses questions seven to sixteen 
"Every time I look at these two orphans, it reminds me of my late sister, who is the 
mother of these orphans. My relationship with both two orphans is very good, and 
besides, I consider them as my own children. We have three other children of our own, 
and they are currently having good relationship with the two orphans, and regard them 
as their own brother and sister. However, I am worried that the boy orphan's arrogant 
attitude may lead to my own children developing an intolerable attitude towards him". 
The caregiver has another sister who sometimes has to take care of the orphans when 
a need arises. 
88 
"I must emphasise that the two orphans' relationship with their other aunt is good as 
she a/so helps in giving care to the orphans. Although I have a good relationship with 
my sister, my relationship with my father, who is the two orphans' grandfather, is not 
that healthy. This has even led to my sister's relationship with our father being severed. 
The severity in the relat\onship is because of my parents' insistence that they should 
control the social grants that the orphans are receiving". As mentioned earlier, the 
grandparents controlled the social grants until it was transferred to the caregiver, after 
legally adopting the two orphans through this researcher's intervention. 
"The boy orphan is also HIV positive and is currently under medication. Although he 
was diagnosed with HIV, he is not aware of his status because I wanfto protect him. I 
only tell him that he is suffering from tuberculosis. Furthermore, even though I am 
married, I do not even inform my husband about the boy's health conditions". I first 
discovered that the boy orphans' health was very poor dlJring my interaction with the 
educator who brought the situation to my attention. However, the caregiver had another 
problem with the other orphan. Although this orphan had not been diagnosed as HIV 
positive or having AIDS, she had some other disabilities that the caregiver highlighted 
during the interview. "The boy's sister has speech problems, as well as passing urine 
uncontrollably. This problem started from her birth until she was given help, after your 
(researcher's) intervention. After having been given some medication, her speech 
started improving and she could go to the toilet on her own and pass urine, as the 
demand arose". It was very clear that due to the severity of the girl orp~lan's medical 
conditions, the situation needed some urgent advocacy from this researcher. This 
researcher immediately arranged for her to see a psychiatrist at Johan Heyns clinic in 
Vanderbijlpark, where she was diagnosed as having high depression as well as 
suffering from slow milestone. 
The boy orphan's behaviour was worrisome to the caregiver, and it was quite apparent 
that this was having an emotional effect on her. "When the boy orphan is given 
punishment for his misbehaviour, he would cry and call his mother's name. This creates 
an emotional conflict within me, as I am not sure if I am doing the right thing by giving 
this child some punishment. Sometimes, he would hide the money that I give to him, 
and then request money from his educators and fellow learners. This creates problems 
for me, as I would oftenoe called to the school to account for his bad behaviour. 
89 
Sometimes, I would even be accused of not giving necessary support to the child. 
However, although I feel that the arrogance of the boy orphan sometimes makes it 
difficult for me to emotionally cope, I want to maintain that I am quite happy to be caring 
for these two orphans. I would even encourage other people to give care to orphans". 
4.2.2.2 Caregiver two's responses questions seven to sixteen 
"My relationship with these two children is that of a normal type of a family where I still 
consider them as my grand-children, not because their mothers have died. My worry is 
that these children seem to be struggling with their academic and scholastic work. This 
is not giving me peace because I thought may be the problem was with me since I could 
not help and support them with their academic and scholastic work. When I went to their 
school to enquire about their academic and scholastic performances, I was assured that 
their poor academic and scholastic performance could be related to the trauma of their 
loss of their mother". 
The loss of the loved ones affects different people differently. Some are able to deal 
with their loss much faster, while others take some time to recover from their loss.. This 
researcher explained to the caregiver that the manner in which differerit people, and 
especially children, deal with their loss depends also on the relationship they had with 
the deceased. This researcher also explained that most of the times children are more 
attached to their mothers than their fathers, thus they suffer greatly when it is their 
mother they lose because of death. This researcher recommended that she should take 
them for counselling, and if possible she should also try to get some counselling too. I 
gave them the addresses of the social workers in their area, but also suggested that 
they should establish if the school has school based support team since this is the team 
at schools that is responsible for the psycho-social and physical problems that learners 
experience.. 
"Although both of the orphans have been diagnosed HIV negative, one of the orphans 
has a problem of being unable to control passing of her urine". 
This researcher explained to the caregiver that this type of behaviour is common, and 
can happen to anyone. This researcher emphasised that in some children it may be 
related to a medical condition, which mayor may not be inherited from parents. 
90 
However, in some other children it may be a psychological problem due to different 
causes. For example, it may be due to factors such as abuse, rape, or even a loss of a 
parent. This researcher suggested that they should go to the clinic where they could be 
appropriately advised as to what remedy can be given to the girl. 
"I have my own children. Although my children have always been having a good 
relationship with these orphans, there is now some kind of tension. I guess this may be 
created by the fact that we have to complement the orphans' child social grants from the 
Department of Social DE3velopment and Welfare with own income. This is creating 
animosity between my own children and the two orphans, because my· children 
complain that they no longer get the things they used to get before the two orp~lans 
were adopted". 
This researcher suggested to the caregiver that in such a situation she should try to 
involve her children whenever a decision that affects the two orphans and the whole 
family has to be taken. This will ensure that they become part of the solution rather than 
just accepting what they are told. It may even help improve the relationship between her 
children and the two orphans. The caregiver explained her reasons for the need to 
supplement the orphans' social grants from the Department of Social Development and 
Welfare with her own income. 
"One of the orphans has to travel long distances to school. Since t~le c~lild social grant 
is not always enough to meet all their needs, this orphan has to eat at home. Due to this 
long distance, his academic and scholastic performance has even deteriorated". 
This researcher reiterated her first advice that the caregiver should try to establish if 
there was any school based support team in the school. This researcher also offered to 
go with her (grand-mother) to the orphans' schools if she needed her help (also as part 
of this researcher's advocacy initiatives. It may be possible that such a team does not 
exist at a secondary school. However, it was this researcher's belief that a solution 
could be found at the school. 
91 
4.2.2.3 Careglver three's responses questions seven to sixteen 
"I do not have any sort of problems with my orphans. In fact my relationship with them 
is even better than their relationship with their brother who is my partner. I guess it is 
because I spend most of the time with them. We do have children of our own and their 
relationship with the orphans is good". 
I had an opportunity to talk to the boy orphan and from my assessment it was quite 
evident that the caregiver was honest about her relationship with the orphans. He spoke 
highly of his sister, that is, the caregiver. He mentioned that he always tries to help her 
with the cleaning of the house after school, as well as during weekends. From time to 
time, he would always say 'my sister', when referring to his caregiver. However, the 
caregiver was having concerns regarding their future studies. 
"One of my worries is that we are unable to adopt the orphans legally due to our marital
 
status".
 
I reassured the caregiver that this would be thoroughly investigated and a solution will
 
be found regarding the legal adoption of the orphans.
 
"We are concerned that we may not be able to save enough money to support the 
future educational needs of these orphans". 
I informed the caregiver that their situation is not necessarily different from that of other 
learners, regarding post-matriculation studies. There are lot of learners whose parents 
are working, but are still unable to send them to institutions of higher learning. However, 
there is financial help that these institutions are giving to financially disadvantaged 
students. I even mentioned that some other institutions are having Foundation Year 
Programmes, which caters for learners whose academic records were not allowing 
them to go straight into the main academic programmes. These Foundation Year 
Academic Programmes are also used by learners who passed their matriculation well, 
but were unable to register for their desired academic programmes due to financial 
limitations. I assured her that we should keep in touch so that when the time comes 
when any of her children or orphans has to go to university, she would be appropriately 
advised. 
92 
"I'm also concerned that since I myself am in my twenties, I'm unable to deal with 
teenagers, as one of the orphans is a teenager. However, I must give credit to the 
educators of one of my orphans because they give me moral support. They even give 
me some coaching regarding ways in which I should relate with teenagers". 
I encouraged her to meet with other women in her neighbourhood, where they can 
psychologically, socially and morally support each other. 
4.2.2.4 Caregiver four's responses questions seven to sixteen 
"You know, these orphans always make me aware that I am not their biological mother. 
I also observed that these orphans don't have love for one another and seem to have 
internal anger and are never satisfied. They give one another such a bad treatment and 
never want to talk about their parents. In fact four of the orphans were not 
communicating with the others except themselves. The older ones demand expensive 
clothes, which cannot be maintained by their social grants. My sixteen-year-old girl 
orphan is currently attending a school for the delinquent. She was influencing the others 
to disrespect me, and she is full of jealousy. For example, she has influenced one of the 
boys to sleep out. The fact that I have to endure seeing one of the orphans rotting in a 
mental institution gives me sleepless nights". 
I assured the caregiver that caring for orphans has never been easy. Their behaviour 
seems to be common throughout the world. However, with proper psycho-social 
counselling, they might be able to be helped, and I further suggested that she should 
consult social workers for help. 
"Before the sixteen-year-old girl orphan was sent to the school for the delinquent, she 
spent most of the nights out. This girl has once been raped while out at night and does 
not seem to care. She continued sleeping out, and she even boasts that sometimes she 
sleeps with four different boys. Now that she is at this school, I'm even worried that she 
might run away from this school. One day this girl even fabricated a story that I had 
beaten up one of my orphans, when I was actually not at home on the day of the 
alleged incident. The children were left under the care of my sister. The girl together 
with one of the educators at a pre-school where this child they allege I had beaten 
93 
attends. On my return from my mother's place, I found that the child had been taken 
away. When I went to the police to open a case, I was locked-up by one of the 
policemen handling the case of child abuse. After having been given a bail, I found that 
all the orphans had been taken away to Johannesburg. The children were only returned 
to me after I had reported the case to the local social workers that were not even aware 
of the current situation". 
"I'm not aware if any of my orphans is HIV positive or has AIDS. Records from the 
Social Development Services Department do not indicate the HIV/AIDS status of the 
orphans" 
My advice to the caregiver was that she should seek advice from the social workers of 
whether it is legal to have all the orphans tested for HIV/AIDS. My recommendation was 
purely based on the assumption that should any of those orphans be HIV positive, at 
least she or he would get immediate psychological and social counselling and medical 
attention. 
4.2.2.5	 Caregiver five's responses questions seven to sixteen 
"One of the twins, who is normally referred to as 'small boy' was diagnosed HIV 
positive. Small boy, like any other HIV infected patient, has to eat fresh foods. Although 
'small boy' is recovering well, he still has to attend treatment at Chris Hani hospital. He 
is not aware of his HIV/AIDS status and keeps asking why he keeps falling sick while 
his brother's health seems to be good. This ;s creating a problem for me because I do 
not know how to break the news to him. He is also hyperactive and thus has to be given 
proper treatment". 
"Big boy, his twin brother, is developing a worrying behaviour. He has become so 
troublesome at school that I am summoned to the school frequently because of this 
behaviour. One day I was requested to come to the school because he had missed 
classes. He was found at a taxi rank several streets from the school. He had to pass 
two busy roads to get to that taxi rank. Not a single day passes without the twin brothers 
loosing or misplacing their school uniforms. I have to spend money frequently, to buy 
twins new uniform and I can no longer take the pain of having to spend money 
94 
unnecessarily. Big boy is also beginning to steal money from other children. Sometimes 
when I send him to the shops, he takes his time. They like very expensive clothes. 
Although these two boys are giving me hard times, I am still adamant that I will continue 
giving care to orphans, even in future because it is something that I like doing". 
"I also have my own two children. My own children have a wonderful relationship with 
these twins". 
4.2.2.6 Caregiver six's responses questions seven to sixteen 
"Our emotional stress relates to the issue of the children's birth certificates. This creates 
'. . 
another problem because the children could not receive child social grants or foster 
social grants. Home Affairs referred us to social workers to help us solve this problem. 
After several endeavours, one of the orphans was given her birth certificate. However, 
her twin brother is still without a birth certificate. We have given up on getting a birth 
certificate for the other twin. It becomes a problem when they get ill because the social 
grant is not sufficient to buy them proper medication". 
4.2.2.7 Caregiver seven's responses questions seven to sixteen 
"We experience several problems caused by our orphans. One of the orphans had to 
leave our place and went to live with my elder sister. He was throwing stones at me and 
after consulting social workers; it was recommended that he should be placed with 
another caregiver. At some stage, it was alleged that this boy was living with another 
man's wife. He also demanded money from his social grant to buy some movies. When 
I approached my sister concerning this boy's behaviour, she refutes my claims. She 
asserted that she had never received any complaints about this boy, and this created 
tension among family members. My elder sister also refuted claims that he is smoking 
and drinking alcohol. However, even neighbours had confirmed that he is in fact 
smoking and drinking alcohol". 
My advice to the caregiver was that she should work together with her sister for the 
benefit of the orphan. I emphasised to her that if they cannot win him over, they might 
95 
lose him forever. In many instances these kinds of children escape the family safety net 
and end up in the streets. 
"I am even suffering abuse from my family members, and they are accusing me of 
building my house with the orphans' social grants. Although I have fourteen siblings, 
most of them refuse to accept the two orphans. This tension has led me refusing to sign 
for this boy's social grant as long as he is still living with my sister. I don't want to sign 
because I do not have control over the money. I would rather prefer that my sister rather 
sign for the social grant". 
4.2.2.8 Caregiver eight's responses questions seven to sixteen 
"Insufficient social grants are one of the things causing problems for me. I am worried 
that if one of the orphans should die, I will have difficulties burying the child. My other 
main concern was that once a child has finished matriculation, it might be difficult to 
send that orphan to the university to pursue further his/her academic studies". 
I assured the caregiver that most universities have student financial aids. These are 
given to deserving students, especially those from disadvantaged backgrounds. 
However, once a student completes his or her studies the money must be paid back. 
The reason for this is because other students with financial constraints have to benefit 
from the same financial aid. 
"Most of my orphans want expensive clothes because they claim that they receive 
social grants. I must admit that the problems that the orphans face also affect me. One 
of the orphans was becoming naughty. He steals from other children and when he is 
asked why he had done so he just keeps quiet. I normally allow my orphans to express 
their feelings. I am happy that I am looking after these orphans and they had brought 
happiness in my life since I have separated from my husband. My wish is to see them 
succeeding in life so that they can also make positive contributions towards their 
communities. I have children of my own, and there doesn't seem to be any relational 
problems between my children and the orphans". 
96 
"I would wish that we (caregivers) could be provided with training so as to handle 
pressures of care giving. I was having a problem of having to talk to one of her orphans 
about his behaviour. This boy was far ahead of his age since he new things that even 
his age group were not aware of. Before he was taken care of, he used to mix with the 
wrong people because he was a street child. Another problem I am facing is that of an 
orphan who want to know about his biological parents. I am unable to tell him about his 
real mother because J do not know where the mother is. Another of my orphans was 
adopted while I was still married to my husband. This orphan is creating problems for 
me since the child does not understand why we are no longer living together. The child 
tries everything to bring us together. He even asks my ex-husband to attend to his 
school problems or events. If the school requires a guardian, he would tell my ex­
husband to go and attend to the matter. 
4.2.2.9 Caregiver nine's responses questions seven to sixteen 
"Our emotional problems emanate from lack of prior planning by the orphans' parents, 
because their parents did not leave any legal "will" (testament), which clearly stipulates 
how the adoption should be conducted and who should take care of the children. 
However, we still maintain that traditionally, the closest relatives of the children's father 
should be caregivers. This is to ensure that the orphans are taught their father's 
customs and traditions, which are very important for their upbringing. We were shocked 
to discover after the burial of the orphans' mother that their mother had given them to 
the care of her younger sister without the approval of their father. Our concerns relate to 
the person whom their mother has chosen to take care of them. She lives far away from 
their actual home, and what makes matters worse is that she has adopted a different 
culture. T~le children will have to change their customs and adapt to this foreign culture. 
You know, with us Africans, anything can go wrong with the children's lives. Once they 
start becoming sick, it might be related to our ancestors not being happy and thus 
punishing the poor orphans. In this instance, the people who would be blamed for these 
sicknesses would be us. We may even be punished ourselves, for allowing these 
children to be given to this foreign culture. The trouble is that, when these children start 
having problems, and their money is gone, they would come to us". 
97 
"All what this other family is interested in is the financial gains they will have out of the 
orphans' situation. We are perturbed by the fact that the orphans' parents' belongings, 
for example, cars, furniture and the house will soon be auctioned without our concern. 
Their clothes and some furniture have already been shared among their mother's 
siblings. We are really worried that this will create a situation whereby these orphans 
will not have a home and may even not have enough money to further their education". 
I suggested to the caregivers that they should approach a lawyer immediately to stop all 
the auctioning of the orphans' heritage. They should even see a social worker as soon 
as possible because they too, have powers to stop that, as they have access to the 
magistrate courts. The caregivers indicated that in fact, the almost auctioning of the 
house was cancelled by the social workers by demanding the keys to the house. 
"Our relationship with the orphans is fine, as far as we know. We also have our own 
children, which are two older boys. The relationship between these orphans and our 
own children is normal and cordial. However, we are worried that the existing squabbles 
between their mother's relatives and us could severe this healthy relationship. We are 
not even sure as to how far their mother's influence on them is, since there seemed to 
have been some bad blood between their parents. The father was working away from 
their family and they used to spend most of their time with their mother. Their mother 
was accusing their father of cheating on her, and their father was also accusing their 
mother of cheating. This has even led their father to suspect that he did not father their 
son. Their mother did not allow them to have frequent visits to their father's uncles and 
their aunt, but had frequent visits to their mother's relatives. This might have somehow 
impacted on the relationship between the orphans and their children. However, we still 
maintain that the orphans are relating very well with their father's relatives, and seem to 
enjoy their company". 
I indicated to the caregivers that it was important that the orphans were relating well 
with both families. Thus, they (caregivers) should ensure that what ever happens after 
the conclusion of the adoption process, the orphans have access to both families. Their 
relationship with their father's relatives is as equally important as their relationship with 
their mother's relatives. 
98 
"Although the orphans' state of ~Iealth seem to be excellent, we do not know whether 
they are infected by HIV or have Aids. We are not aware if t~le orphans have been 
tested for HIV/Aids. You know, for us it is just not the question of caring for HIV/Aids 
orphans. However, it is our obligation to care for our brother's children because this is 
necessitated by our customs and beliefs. We believe that if we do not do this, trouble 
will befall us, and even the orphans will experience problems in their lives for not 
following their father's customs". 
4.2.2.10 Caregiver ten's responses questions seven to sixteen 
"Generally, I do not seem to have any major problems. My problem seems to be with 
my sister's attitude. She is stubborn and does not take advices. She appears to be 
having anger and she is very moody. She is taking her frustrations out on other people. 
For example, she is not relating well with my boyfriend who is giving us financial 
support. Although my sister is repeating grade 11, her performance does not seem to 
be improving. My sister was one of the top learners before the death of my mother. 
However, her performance dropped drastically since her death. I get tremendous 
support from my relatives". 
My advice to the caregiver was to have patience with her sister. She might not be as 
strong as she (caregiver) is. I pointed out to her that the loss of the loved one might 
have different impact to different people affected by the same loss. I recommended that 
they should both see a professional counsellor, even if it may not necessarily be a 
social worker or psychologist. I gave her a list of organisations that deal with issues 
relating to counselling and support. I even suggested that they could even consult with 
their Pastor at the church, or someone she or her sister ~Ias trust on. 
"I suppose I'm HIV negqtive, althougl"l I haven't tested. I take precautions when having 
sex with my boyfriend. I really don't know my sister's HIV/AIDS status because I feel 
that it's a personal thing". 
Although I did not want to probe the caregiver further about what she meant by 
precautions, I nevertheless encouraged her to take the HIV/AIDS test. I advised her to 
befriend her sister, so as to win her confidence to a point where they could confidently 
discuss issues of life, including sex. I pointed to her that, although most people believe 
99 
that it is safe to use condoms, this method of protection is not full proof. We still need to 
take frequent HIV/AIDS testing. 
4.2.2.11	 Caregiver eleven's responses questions seven to sixteen 
"My relationship with my brother is quite good. The fact that we were left to fend for 
ourselves has strengthened our friendship. We realise that since our grandmother might 
also die because of her age and ill health, w would have no other close relatives to care 
for us. We have been deserted by those we considered blood relatives since the death 
of our mother. The fact that I have sacrificed my happiness and career to go and find a 
job at a very early age has made my brother to appreciate my efforts. This has even 
created a very strong bond between the two of us". 
"As mentioned earlier, I also have two children of my own, and the relationship between 
my children and my brother is excellent. My brother has since taken the responsibility of 
looking after my children since I do not live with them. My brother has become their role 
model, and this makes me confident that they will become better citizens as long as 
they are closer to their uncle. Since our relatives abandoned us, there isn't much of a 
relationship between those relatives and us. However, this doesn't mean that there is 
any hatred between my relatives and us since we never communicated that much. Both 
my brother and I have excellent health conditions and are free from HIV/Aids. Because 
of our sufferings, I would encourage other people to be caregivers. However, I'm 
worried that with the scourge of HIV/Aids, HIV/Aids will affect most families and the 
situation is very scary". 
4.2.3 Questions seventeen to nineteen investigated the health impact of caring 
for AIDS orphans on caregivers 
These questions were based on the researcher's assumption that caring for HIV 
infected or affected orphans could endanger the lives of those carrying for them, if 
appropriate precautions are not taken. However, if caregivers are themselves sick, they 
may endanger the lives of those they are taking care for. The caregiver participants 
responded to questions such as: 
• Could they give an account of their own health status? 
100 
• How often do they attend treatment for their illness? 
• Did this illness start before or after caring for these two orphans? 
The following responses are accounts of the caregiver's health conditions: 
4.2.3.1 Caregiver one's responses to questions seventeen to nineteen 
"l do not suffer from any serious illnesses that may be detrimental to the lives of those 
I'm caring for. However, just like any normal person, I do have some health problems 
that come and go". 
4.2.3.2	 Caregiver two's responses to questions seventeen to nineteen 
"l have high blood, but it has been troubling me for some time even before , started 
caring for these orphans. However, having this extra burden of caring for two orphans 
without adequate financial backing might not help my health condition". 
4.2.3.3 Careglver three's responses to questions seventeen to nineteen 
"l am healthy, except when I'm suffering from flue or having a headache, which are 
illnesses that most people are experiencing". 
4.2.3.4	 Caregiver four's responses to questions seventeen to nineteen 
"Apart from the emotional stress these orphans cause me, I am healthy", 
4.2.3.5 Caregiver five's responses to questions seventeen to nineteen 
"l do not have any serious health problems. I do get sick occasionally, but I guess it's 
normal". 
4.2.3.6 Caregiver six's responses questions seventeen to nineteen 
"I suppose the illnesses I may be suffering from may be related to my age. I do get 
medication for my illness". 
101 
4.2.3.7 Caregiver seven's responses to questions seventeen to nineteen 
"I do not have any serious health problems other than the stress my family is causing 
me", 
4.2.3.8 Caregiver eight's responses to questions seventeen to nineteen 
"My health is well at the moment". 
4.2.3.9 Caregiver nine's responses to questions seventeen to nineteen 
"I don't have any problems with my health". 
4.2.3.10 Caregiver ten's responses questions seventeen to nineteen 
"I and my wife don't have any problems with our health", 
4.2.3.11 Caregiver eleven's responses questions seventeen to nineteen 
"lVIy health is fine", 
Follow-up questions were not necessary in the case of caregivers three· to eleven 
because they indicated that their health conditions were normal. 
4.2.4	 Questions twenty to twenty-seven investigated ways in which caregivers 
are experience financial problems because of their caring for AIDS orphans 
The following questions were used to investigate ways in which caregivers experience 
financial problems because of their caring for AIDS orphans 
•	 How many people are working in the family? 
•	 Does the family have any other source of income for caring for AIDS 
orphans? 
•	 Does the family receive any social grant from the Department of Social 
Development and Welfare? 
•	 What are the basic needs of the orphans? 
102 
•	 Is the social grant from the Department of Social Development and 
Welfare sufficient for all the two AI DS orphans' needs? 
•	 What else does the family use the social grant from the Department of 
Social Development and Welfare for? 
•	 Are the two orphans aware of the social grant they receive from the 
Department of Social Development and Welfare on their behalf? 
•	 If orphans are aware of the social grant from the Department of Social 
Development and Welfare, are they not demanding to have full control of 
the usage of this grant? 
Since unstructured interviews were conducted for this study, as said above, the 
questions were not asked in any particular order, but were dictated by the responses of 
the caregiver. The following are the responses of the lady caregiver: 
4.2.4.1 Caregiver one's responses to questions twenty to twenty seven 
"Although both orphans are receiving social grants, in the form of child social grants, 
initially through their grandparents and later by me, this grant was stopped because of 
family fighting. I then approached my father to inquire about the stoppage of the grant. 
However, my father suggested that his sister might have stopped it, as she also wanted 
to be given a share from that grant. During the stoppage of these grants, these orphans 
were financially supported by 'tjhelete ya letheka' I receive for my own three children. 
However, these child grants were restored after your (researcher's) intervention. It was 
very difficult to cope because the child grant and 'ljhelete ya letheka' were the only two 
sources of income for the family since both my husband and I were unemployed". 
'Tjl1elete ya letheka', as is commonly referred to in our township language, is the child 
grant given to single-parent family or unemployed people. These child grants for the two 
orphans were finally restored through this researcher's intervention, by approaching the 
social workers for assistance. 
"My husband is suffering from tuberculosis. I used to 'work as a car guard in town; 
however, I had to sacrifice this income because of the extra care that the two orphans 
needed. Although I was happy to have the child grants for both orphans restored, this 
created another problem. On the day of collecting the grant, the boy orphan does not 
103 
want to attend school. Instead he demands that he accompanies me, so as to buy him 
whatever he wants. He has become so arrogant and only thinks about himself. This 
creates tension between us, besides, this grant is not even enough to maintain the 
bUdget for his expensive food, which has to be fresh all the time". The caregiver was 
asked if she ever shares her frustrations with anybody, since she mentioned earlier that 
she never informs her husband about any problems relating to the orphans' health or 
behaviour problems. "I find comfort from the assistance of my sister, who also looks 
after the orphans when we are in financial distress. The child grant for the orphans is 
used mainly for the orphans' food. A bulk is consumed in their food since because of the 
boy orphan's HIV/Aids status he has to eat fresh food and ~Ie also has to eat frequently. 
The social. grants are not even enough to buy them food and some medication, 
whenever is necessary. I have to supplement these with the 'tjhelete ya letheka' 
receive for my own children". 
4.2.4.2	 Caregiver two's responses to questions twenty to twenty seven 
"I am receiving an old-age social grant, which I'm using to support my children and 
even the two orphans. However, I am also receiving the child social grant for the two 
orphans. I had initially applied for foster social grants, but was told that this type of 
social grant no longer existed. I persisted applying for foster social grants without any 
success because my requests were repetitively turned down. These social grants are 
not enough to even help the other orphan with his transport fees to school, as it was 
further away from home. The grant was mainly used for food and clothes. I even use my 
own money to pay for their karate lessons as she encouraged them to play sport. I'm 
worried that this has resulted in anger within my own children, as they are no longer 
getting things that they used to get". 
This researcher assured the caregiver that she would do her own investigation 
regarding the foster social grant applications. After this researcher had approached the 
social workers in another region, she was informed that it was not true that foster social 
grants do no longer exist. The advice that this researcher was given was to find 
explanation from the Department of Social Development and Welfare. This researcher 
is still pursuing this matter as of the time of completing this manuscript. 
104 
"Both orphans are aware of the child social grants I receive on their behalf. However, I 
never experienced any problems from them, regarding the usage of their social grants. I 
guess it might be because they are aware that I'm supplementing these social grants 
with my own money". 
4.2.4.3 Caregiver three's responses to questions twenty to twenty seven 
"My partner does not have a stable job, but do some temporary or contract jobs. His 
jobs are not paying that well. However, the money that he brings home does help us to 
give the two orphans and our own child a great deal of support. We do survive on that 
small income even though it sometime becomes difficult to cope. Although I'm currently 
unemployed, I am receiving some training on catering". 
"The two orphans receive child grants, but those grants are given to my partner' 
stepfather on their behalf. My partner's stepfather does not always give the money to us 
as caregivers. These child grants are not even sufficient to meet the orphans' needs. 
We use the grants mainly for food, clothes and other necessities. We don't want to 
apply for foster grants so as to avoid family squabbles. The two orphans do not mind as 
to how I use their grants, in the event that we do receive them from their grandfather". 
I made the caregiver aware that it was illegal for the orphans' grandfather to withhold 
their social grant. In fact, I suggested that they approach social workers to arrange for 
those grants to be given to them as they are taking care of the orphans. I also explained 
that if the situation continues, where the grandfather does not forward the money to 
their rightful owners, and should this be reported to the social workers, the grant would 
be stopped. 
4.2.4.4	 Caregiver four's responses to questions twenty to twenty seven 
"I get foster social grants for my orphans. However, the money is not enough to meet 
all their needs. The older orphan demands expensive clothes, which cannot be 
accommodated by the foster grant. I even had to take this older orphan to the social 
workers, so that they can explain to her (orphan) how the money should be used. The 
orphan wanted to use her foster grant for things like expensive cell phones and other 
105 
unnecessary items. I do not have any other means of income apart from the foster 
grants I receives. I really appreciated the financial support I get from my relatives". 
'The way I understand the job I'm doing is that caring is like a fulltime job, which must 
be properly remunerated. Foster grants or child grants are mainly for the purposes of 
giving support to the affected children. However, the people giving care to these 
orphans must be paid to care for those orphans. There is another problem that I will be 
facing in future, regarding the youngest orphan. This orphan is due to attend pre-school 
where she will be paying monthly school fees, which are sometime exorbitant". 
"Two of the younger orphans are still wearing napkins and live on powder milk, which 
are very expensive. Because I cannot afford to buy all my children clothes at once, I 
usually buy for one or two children and put those clothes safe until I am able to buy for 
all of them". 
4.2.4.5 Caregiver five's responses to questions twenty to twenty seven 
"I receive monthly foster grants for the twins. I do not have any other means of income. 
The grant is mainly consumed by freshly prepared food for one of the twins who is HIV 
positive. I have to source other funds from anything I can do or sell to supplement the 
foster grant. My own son is also supporting me financially as he is employed. He also 
sells clothes during his spare time to supplement his salary. The total transport fees for 
the twins are amounting to R500 per month. We also spent money on transport to 
Johannesburg for medical treatment. This is the psychological therapy and medication 
for the HIV positive twin. This twin is hyperactive and he has to attend treatment at 
Chris Hani/Baragwanath hospital". 
"I often have to bUy school uniform because they frequently lose their uniforms. The 
twins are also very selective on the choice of clothes I have to buy. They like classy 
clothes, which are more expensive. But I blame my son for this because since he is also 
selling clothes, he buys the twins these expensive clothes when he has some extra 
cash". 
106 
"I could not have afforded the costs for the medical treatment the HIV twin receives from 
the hospital. I am, however, delighted that the doctors who were responsible for the . 
treatment, sourced funding from donations they organised for the child. I allowed them 
to put the photograph of the HIV positive twin in newspapers and TV to source funds 
from the public. However, I am not happy that I was not informed how much donations 
the doctors were able to collect. It is my belief that the twin's poor health (HIV positive) 
necessitates increase in the foster grant. I am also not entirely happy that they 
(caregivers) are not being compensated for caring for orphans. I propose that the 
government should give us bonuses at the end of the year". 
I asked the caregiver whether the twin's desire for expensive clothes was not because 
they were aware that she was getting foster grants for them. 
"These twins are spoiled, and besides, we have such a wonderful relationship. There is 
nothing indicating that they might be behaving this way because of their knowledge of 
the foster grants". 
4.2.4.6	 Caregiver six's responses to questions twenty to twenty seven 
"I get an old-age grant. I also receive a child grant for one of the twins, but do not get 
anything for her two sisters. The problem is that the two sisters are not having birth 
certificates, which led me to not being able to apply for their identity documents. Both 
myoId-age grant and the twin's child grant are not sufficient to support the family. The 
twin's sisters are at a Secondary School, which is not quite close to their home. This 
necessitates them to take lunch packs to school. However, it is not always possible to 
do this, as I do not have any ot~ler means of income. I cannot even bUy them the proper 
school uniform like other learners. When they get ill, I am unable to get them proper 
medication or send them to the doctor". 
I have made it my first priority to try to investigate the problem and have promised the 
caregiver that I will try to get in touch with some people I know from Home Affairs. 
These people have solved some of the problems I had in the past, and am quite sure 
that they would be able to help with this particular problem. 
107 
4.2.4.7 Caregiver seven's responses to questions twenty to twenty seven 
"We receive a child grant for the orphan. I also work as a domestic worker. My 
husband is a contract worker, and the job is not secured. Both my child and the orphan 
are choosy and like expensive food, which I cannot afford to buy. Before the orphan's 
brother was moved to my sister, he used to demand his grant so as to go to the movies. 
But I emphasised that the grant I receive on his behalf is used for food and clothes for 
him. However, I maintain that the grant is not enough for all the orphan's needs". 
4.2.4.8 Caregiver eight's responses to questions twenty to twenty seven 
"I receive foster grants for all my orphans, that is, six orphans. Although I am 
unemployed, I have my own child who is employed and thus assists me financially. 
However, foster grants are not sufficient since two of my orphans are HIV positive. I 
have to allocate some portion of the grant for their medical expenses. In fact, one of the 
two HIV positive orphans is a baby who has to wear napkins and drinks powdered milk. 
The foster grant I receive for this baby is not sufficient for all these. I cannot afford the 
expensive medication and food I have to provide to these particular orphans. However, I 
am relieved that the other HIV positive orphan still has a good relationship with my ex­
husband. When the orphan needed some financial assistant, the child would approach 
my ex-husband for help. This is because, as mentioned earlier, the orphan was adopted 
while the two were still married and the orphan was still a baby. Thus the child still 
regards my ex-husband as a father. The older orphans demand very expensive clothes, 
which cannot be supported by the foster grants". 
"I'm worried that it may not be possible to give good care to the orphans who will be 18 
years old since the grant will be automatically stopped. This may ultimately stop the 
orphans from pursuing their studies at tertiary institutions. I wish that the foster grants 
may be increased so as to keep with the financial demands related to care giving". 
4.2.4.9 Caregiver nine's responses to questions twenty to twenty seven 
"As I mentioned earlier, I'm a full-time student. I do not have any other source of 
income. I receive a foster grant for my sister. However, I'm worried that since my sister 
is seventeen years old, this grant will be stopped once she turns eighteen years. 
108 
However, at least according to my understanding, my sister will continue receiving the 
grant as long as she is still a learner. This foster grant is not sufficient for our needs, but 
I am delighted in the support I receive from my boyfriend. My boyfriend buys me food 
and clothes. I also get a student loan to pay for my tertiary studies, but I can feel the 
financial burden. I must say that managing my sister's grant is very difficult as I have to 
convince her that the way I'm spending the grant is the only best way, just to ensure 
that we survive". 
4.2.4.10 Caregiver ten's responses questions twenty to twenty seven 
"Our family is financially viable. You see, even if wife is not working, I can take good 
care of my family because I'm the manager in the company I work for. Besides, since 
the orphans' parents were both employed, I do not foresee anyway the orphans would 
have financial problems. The orphans' mother was an educator, while their father was 
an employee of one of the mining companies. In fact, their father held a senior position 
in the mine. I can assure you that if the orphans' estate could be handled properly, 
these orphans will never have any financial difficulties in their future. Right now, we 
have not even started with the process of trying to gain legal custody of the orphans. 
We are currentlystlfi battling to protect the orphans' estate since it has become evident 
that the person whom the orphans' mother has requested to care for her children is only 
interested in her personal gains out of this situation. Our intention is to use our own 
finances to cater for the orphans' immediate needs, while keeping the orphans' money 
intact within the estate. We prefer that the orphans rather use the money for their future 
tertiary studies. We would also like to see these orphans starting their adulthood without 
incurring any financial debts". 
My immediate reaction when the caregivers were saying that they would rather use their 
own money to support the orphans, was the tension this might create between the 
caregivers' own children and the orphans. I highlighted this fear to the caregivers. 
However, they assured me that they would treat the situation with utmost care because 
they value their children's welfare too. 
109 
4.2.4.11 Caregiver eleven's responses to questions twenty to twenty seven 
"I work as a domestic worker and I do not receive any child or foster grant. However, 
since my brother lives with my grandmother, she also uses her old-age grant to support 
my brother and my own two children. I send them money periodically, as I cannot afford 
to visits them. The money would be used-up by the high transport costs. Most of the 
money I send home is used for my brother's educational needs. Some portion of the 
money is used for food and clothes, while the rest is used for their daily necessities 
such as medication when they are sick, transport and other bills. I'm also getting some 
financial support from my current boyfriend. However, I really do not want to develop a 
habit of requesting financial assistance from my boyfriend. You see I do not want to end 
up becoming a slave to my boyfriend or feeling obliged to return favours to him. 
Fortunately my brother understands our financial predicament, and thus does not have 
any unnecessary financial demands". 
Although initially I could not understand why the caregiver was not receiving a child or 
foster grant, it became clear as the interview progressed that she was coming from a 
neighbouring country. This automatically disqualified her from applying for a foster grant 
since she was not even a refugee. 
4.2.5	 Questions twenty-eight to thirty-six investigated the impact of AIDS 
orphans caring on the social life of careglvers 
The following questions investigated the social impact of AIDS orphans caring on the 
social life of caregivers: 
•	 Are any of their AIDS orphans attending school? 
•	 Do their AIDS orphans get any support from the schools where they 
attend? 
•	 How is the relationship between them and their neighbours? 
•	 Does this relationship affect the orphans in their care? 
•	 Do orphans under their care have friends in the community? 
•	 Are the orphans in their care having a good relationship with 
the other community members? 
•	 Is the community aware of the HIV/AIDS status of orphans in 
no
 
their care? 
• What kind of support do caregivers get from their community? 
• Are they aware of any support groups in their community? 
The following responses were obtained regarding the social impact of caring for AIDS 
orphans. 
4.2.5.1 Caregiver one's responses to questions twenty eight to thirty six 
"\ do not know how to express my feelings for what the educators of one of my orphans 
did for him (orphan). For the fact that I was requested to come to the school to discuss 
the problems experienced by one of my orphans, even before I became the caregiver, 
makes me believe that the orphan is attending the right school. My orphan's educators 
requested me to take him into my care. In fact, some of his educators even assisted me 
with his school uniform and other clothes. Other educators are giving my boy orphan 
vegetables and fruits to take home. I was informed that one of his educators also 
informed the principal about the HIV/AIDS status of my orphan. However, the principal 
did not seem to care. The concerned educator then requested the people responsible 
for the school feeding scheme to include my boy orphan in the list of children qualifying 
to receive food from the feeding scheme. The school is even collecting old and unused 
clothes for vulnerable children and orphans, and my orphan a/so benefited from that 
scheme". After further investigation, it was discovered that the clothes were actually 
collected from other educators, as well as from the surrounding community, where the 
school is situated. 
"I must confess that the community where I live does not know of my boy orphan's 
HIV/AIDS status, and even his friends are not aware that he is HIV positive. I have kept 
it secrete to even the orphans himself. I told him that he was suffering from tuberculosis. 
I do not have any problems with my neighbours, but I just don't want them to know 
about my boy orphan's HIV/AIDS status for his own sake because it is di1ficult to tell him 
what causes his illness". /t was clear that the reasons for the caregiver not wanting to 
inform the community about the HIV/AIDS status of her boy orphan, was not because of 
the prejudices she thought the family might suffer from the community. 
III 
"Although my HIV positive orphan was supposed to fetch powdered milk from the 
community clinic, he does not always do this. He was also invited to collect food parcels 
from one of the community centres. For example, he was expected to get breakfast in 
the morning on his way to school. After school, he was supposed to collect lunch on his 
way home. However, this boy did not always collect these food parcels. I could fetch the 
milk and the food parcels for the boy, but this is not allowed". I (researcher) then 
advised the caregiver to accompany the orphan to the clinic and community centre to 
ensure that the orphan does get his provisions. It was possible that the clinic and 
community centres thought that when the caregivers collect these provisions, they might 
not reach the people they are meant for. 
As mentioned during the interview with caregiver one, it was found necessary for me to 
intervene as part of advocacy in some instances. However, since I did not want to be 
seen as interfering in family affairs, I felt that it might be necessary to interview the 
grandparents in order to hear their side of the story. Some serious allegations were 
levelled against them, which were also confirmed by one of the boy orphan's educators. 
The educator was also interviewed so as to make the orphans' cases stronger, for 
speedy resolution. 
4.2.5.2	 Caregiver two's responses to questions twenty eight to thirty six 
"As I mentioned earlier, both two orphans are attending school. In fact, I noticed that 
the orphans were struggling wit~1 their studies. I then went to the schools to enquire 
about their academic and scholastic performance as I was becoming worried that they 
may be mixing with the wrong people. However, I was assured that they seemed to be 
good children. The educators cited the family situation as a possible reason for the 
orphans' academic and scholastic poor performance. They argued that the orphans 
might be aware of the family's poor financial status". 
"The absence of feeding schemes at secondary schools might also contribute to the 
poor performance of one of these orphans. I suspect that the long distance that he has 
to travel to have lunch at home might actually contribute to the academic and scholastic 
poor performance". 
112 
"Initially the community was not supportive, especially when the two orphans' mothers 
died. Most people suspected that the causes of their deaths might have been HIV/Aids 
related. However, I am happy that the community is now very supportive. I suspect that 
the sudden change of attitude from the community suggests that it is a sign that 
HIV/Aids is now becoming acceptable, probably because it's spreading and more 
people are educated about it. I also believe that the governmental and non­
governmental HIV/Aids awareness campaigns may also contribute to the acceptance of 
HIV/Aids". 
This researcher suggested to the caregiver that the change of attitude among the 
community members could also be due to influences and more education on this 
pandemic at schools. Most schools are expected to touch on health issues including 
HIV and AI DS, as well as the constitutional rights of even those infected or affected by 
HIV and AIDS. This researcher also pointed out to her that children have as much 
influence on parents', community's and educators' lives as we have on their lives. For 
example, during parents', community's and educators' interactions with them, there are 
lessons that parents, community and educators receive from them, especially since they 
are expected to help them with their homework. 
"I'm not aware of any community support groups in my area. I am even thinking of 
starting a support group in this area, and wish to take care of other orphans if the 
government could assist me financially. I used to receive grocery from t~le social 
workers, but it was stopped without any reason given". 
This advised the caregiver to approach the social workers in order to find reasons for 
the stoppage of the grocery. Furthermore, my suggestion was that she should go to the 
Department of Social Development and Welfare to find out if there are no other forms of 
assistance that could be given to her. 
4.2.5.3 Caregiver three's responses to questions twenty eight to thirty six 
"Both of these orphans are attending school. In fact, I receive valuable support from the 
orphans' educators. They are advising me about how to deal with teenage children 
because I'm in my twenties and lacked skills of handling teenagers". 
113 
"I also get support from the community. However, I find it funny that the only bad 
influence that the orphans were getting was from a relative. The orphans are given food 
parcels from the community centre. Apart from the food parcels, the centre is also 
providing sporting activities to keep orphans busy. This also helps orphans take their 
minds off their problems. They are also receiving training in different subjects ranging 
from different school subjects to social issues affecting their lives". 
"I have never heard of a situation where my orphans have been discriminated against 
by anyone from the community. They have friends in the community, and you can ask 
them if they ever suffered any prejudices from neighbours or their friends". 
The orphans spoke well of their neighbours and their friends. However, I must indicate 
that the boy orphan dominated the discussion with the orphans. The girl orphan seemed 
to be shy, even though I suspect that she might have been respectful of her brother 
since she was younger than him. 
"Both orphans are healthy and have never been diagnosed HIV positive. I guess this 
may be one of the contributing factor in the healthy relationship we have with the 
neighbours". 
4.2.5.4	 Caregiver four's responses to questions twenty eight to thirty six 
"There is lack of support groups within our community. There was only one event 
organised by a non-governmental organisation. However, the event was limited to a 
maximum of two children. This implies that those caregivers who are caring for more 
than two orphans, like me, are unable to enjoy full benefits. This meant that we have to 
sacrifice some orphans. There many support structures in Johannesburg than there are 
in Vanderbijlpark. This lack of support structures might even be contributing to the lack 
of discipline displayed by most of the orphans". 
"Most of my orphans seem to be doing well at school, except the one who was 
transferred to a special school, that is, the school for the delinquent". 
114 
"My relationship with my neighbours is not good. I suspect that my neighbours might be 
having a bad influence on my orphans. For example, when I rebuke the orphans when 
they are misbehaving, they tell me that I'm not their biological mother. I maintain that 
this could only have come from the influence of my neighbours. In fact, on one occasion 
I was accused of beating one of the children. This occurred when I was not even at 
home and the children were under the care of my sister, who is also a caregiver. One of 
the educators had even arranged with the Johannesburg social services to take this 
child in my absence. Upon my return, I went to the school to enquire about the child's 
disappearance and was told that the child had complained of the beatings from me. I 
was shocked to find the child at the school. I then went to report the matter at the local 
police station, but was shocked when one of the police officer said to the other one who 
was taking her statement that I was the suspect. I was immediately taken to a police 
cells. When I enquired why I was being held, I was informed that one of my orphans had 
given a statement to the effect that I have physically abused the other orphan". 
"During my imprisonment, all the children were taken away from me. What was even 
painful was that the police were making up all this with the educator at the creche where 
my orphan was attending. The local social workers were not even aware of the problem. 
My sister informed the local social workers, and upon their intervention, I was released 
from the police cell. The social workers informed me that they have being receiving calls 
from my neighbours that I was abusing my orphans". 
4.2.5.5	 Caregiver five's responses to questions twenty eight to thirty six 
"It's my suspicion that the neighbours might be having a bad influence on my orphans. 
One of the twins once said that I was not her real mother, when I tried to punish him for 
misbehaving". 
"I'm getting lot of support from the orphans' school. I even reported the other twin's bad 
behaviour, as well as his brother's HIV status to the school principal. In fact, the school 
principal is very supportive and considerate of the HIV positive orphan. This orphan 
could see the principal anytime he feels like. However, the behaviour of the other twin 
is not very good. I would be called to the school whenever he has misbehaved, but the 
educators understood her predicament. I would also be called to the school to collect 
115 
the lost uniform. The school has also organised a psychologist for to help my disruptive 
orphan. The psychologist offers these sessions at school, to help me reduce the 
transportation costs". 
"I doubt if my neighbours are aware of the HIVIAIDS status of the other twin. I don't 
normally talk with them because of their attitude". 
I advised the caregiver to find a way of trying to make peace with her neighbours, and if 
possible I could assist. She could even talk to the social workers and ask them to act as 
a buffer between her and neighbours. I emphasised that it was important to endeavour 
to change other people's attitudes about certain prejudices for the sake of our children. 
4.2.5.6	 Caregiver six's responses to questions twenty eight to thirty six 
"I am not experiencing any problems with my neighbours. The orphans are also 
receiving support from their schools. However, I'm despondent about the treatment I'm 
receiving from the social services department regarding my endeavours to get three of 
the orphans' birth certificates. Home Affairs was referring me to the social workers, but 
when I approached the social workers, I would be sent back to Home Affairs. I have 
even given up on trying to get these birth certificates". 
"None of the orphans is HIV positive or has AIDS". 
4.2.5.7	 Caregiver seven's responses to questions twenty eight to thirty six 
"I must acknowledge that I am receiving tremendous help from the social workers. For 
example, they advised me to ask one of my family members to take care of one of the 
problematic orphan. I also reported the bad behaviour of the other orphan to social 
workers, and they were supportive. I never received any Complaints from the school 
where the orphans attended. According to my understanding, the orphans seem to be 
doing well at school. My relationship with my neighbours was never affected by the 
caring of these orphans. My neighbours even reported the bad behaviour of the orphans 
to me". 
116 
4.2.5.8	 Caregiver eight's responses to questions twenty eight to thirty six 
"I have problems with my neighbours who seem to be influencing my orphans, and this 
is evident from their bad behaviour. For example, the neighbours are asking the 
orphans if I am receiving foster grants for them. These neighbours would even send 
my orphans anywhere without my consent. When I approached them to discuss this 
issue, the neighbours would tell me that those orphans are not my children. This 
suggests that they would do as they wish with those orphans. I allow my orphans to 
express their feelings, and was open about discussing their grants with them. I believe 
that because of bad influence from neighbours, the orphans are demanding expensive 
clothes because they know that they receive grants. I want to acknowledge that I am 
receiving great support from the social workers. However, I am adamant that caregivers 
are not receiving proper training regarding care giving. I propose that they should be 
given workshops on how to give the best care for their orphans". 
4.2.5.9	 Caregiver nine's responses to questions twenty eight to thirty six 
"I and my sister do not have any sort of problems with other community members. 
However, whenever I experience problems with my sister I usually consult relatives for 
counsel. I have never voluntarily consulted social workers regarding my problems. But 
we only meet social workers when we are invited for some events". 
I encouraged the caregiver to find any support group in her neighbourhood. It was 
critical that she meets with other people who might be experiencing the same problems 
as the ones she experiences. I emphasised the importance of such support structures 
because they empower caregivers with some survival as well as life skills to handle 
problems of care giving. 
4.2.5.10	 Caregiver ten's responses to questions twenty eight to thirty six 
"We do not experience any problems with our neighbours. In fact, we relate very well. 
Besides, family support structures are very strong, and thus the orphans find comfort 
within the family. We are getting support from the social workers to gain full adoption of 
the orphans. Even the attempt by the orphans' uncles and aunts from their mother's 
side to auction the house was quashed by the social worker. Although community 
117 
support groups are important, we are well connected and have access to counselling 
services within our legal services organisation. Services such as legal advises and 
trauma services are offered. These orphans are active members of their community. For 
example, the boy orphan is currently a member of a local football club. The club was 
very sympathetic towards his loss, and had ensured that he gets whatever help he 
could. I really doubt that these orphans are experiencing any discrimination from 
neighbours, as they were aware about the causes of the deaths of their parents". 
4.2.5.11 Caregiver eleven's responses to questions twenty eight to thirty six 
"I have never had any contact with the social services because I do not know how to go 
about doing that, and besides, what makes it difficult is that I'm not even a citizen in this 
country. We don't receive social grants in my country. I welcome the positive feedback 
I'm getting from my brother's school. Although the community my family lives in is poor 
and thus cannot assist them· financially, I cherish the moral support they give to my 
family. I am thankful that our neighbours have never discriminated against my family. 
You know, my boyfriend has proposed marriage but because I have the responsibility of 
caring for my brother, who is still at secondary school, I could not accept the proposal. 
Although my boyfriend is also from another country, he has acquired South African 
citizenship. Due to my grandmother's poor health conditions, I might have to take full 
responsibility of my brother. Although I h.ave discussed my predicament with my 
boyfriend, who seems to be sympathetic and accommodative, I am still reluctant to 
place my brother's responsibility onmy boyfriend's shoulders". 
I suggested that the caregiver should discuss her brother's situation with her boyfriend 
and see how he would react. As I write, the caregiver has informed me that her 
boyfriend has stopped asking her about getting married. They are however, still seeing 
each other. She acknowledged that she was getting frustrated now that her boyfriend is 
not talking about marriage. She is not even sure whether or not her boyfriend is 
committed to their relationship. I advised her to be patient since that kind of a decision is 
quite difficult and important to make in a short space of time. 
118 
4.3 RESPONSES OF GRANDPARENTS (N=2) OF CAREGIVER ONE'S ORPHANS 
As mentioned earlier, this interview was necessitated by my involvement in trying to 
help restore the grant for the orphans. The caregiver alleged that her parents could 
have stopped collecting it since it is their responsibility to do that. However, her parents 
told her that it might ~lave been his sister since she wanted to be given some money 
from these social grants. The following questions (see Appendix Schedule 2) were 
asked in order to investigate some of the allegations, as well as to ascertain some of the 
information given by the caregiver, which were relating to the welfare of the boy orphan: 
•	 Can you give me some background relating to the orphan's 
parents? 
•	 What was the cause of their mother's death? 
•	 Did she attend any support group meetings before she died? 
•	 Are any of your grandchildren having health problems? 
•	 Do you know what could be causing these illnesses? 
•	 Is the orphan aware of the cause of his illness? 
•	 Is he getting any treatment for his illness? 
•	 How is your relationship with the orphans? 
•	 How is your relationship with your neighbours? 
•	 How is your relationship with your children? 
•	 Do you get any support from the commurlity? 
•	 How is your grandson performing at school? 
•	 Is there any support he gets at school? 
The questions were also not asked in any specific order, but were dictated by the 
responses given by the participant. The following responses were obtained from 
grandparents: 
"My daughter, that is the two orphans' mother, left with her husband for Polokwane and 
when she came back after some time she was ill. However, she did not say how long 
she has been ill. The two orphans' mother was fully aware of her illness before she 
died. Her younger sister usually accompanied her to the clinic for treatment. I was also 
called at the clinic to be informed about her illness. Moreover, I would see her meeting 
119 
with other patients having the same illness, whenever she attends treatment. My 
daughter was attending support groups at the clinic before she died". There were no 
support groups in the community. The two orphans' grandparents refused to state the 
exact type of illness her daughter was suffering from. However, it was evident from her 
responses that she new what caused the death of her daughter. It is usually obvious 
that people attending support groups are associated with HIV and AIDS. 
"The boy orphan is suffering from tuberculosis, which I think he received from his grand­
father. You see, his grandfather is also suffering from tuberculosis and I think he might 
have infected him. His grandfather is not keen to tell the boy about the real nature of his 
(orphan) illness. He also has mouth and nose ulcers. He was never ill when he was still 
small. However, he started getting ill when he was in Grade two. He is getting 
medication for his tuberculosis and he eats properly, although at his own time. The child 
must be given nutritious food and although he eats, he sometime brings his lunch pack 
after school". The grandparents seemed to be very touched when they were talking 
about their grandson's health problems. 
"I'm affected by his illness and wish that it could just disappear. I'm despondent 
because the boy gets everything he needs, but keeps getting sick. His sister is suffering 
from language or speech problems. I even suspect that she might be disabled, and I 
wish she could get some medical help. IVly relationship with my grandchildren is good. 
The boy is good and seems to be doing well at school. Although his sister is also good, 
she does not talk a lot. I long to see my granddaughter. My daughter promised to bring 
her when she comes to see us, but I was disappointed when she did not bring her 
during school holidays when she came to see us". 
"My grandson is getting tremendous support from his school and he is so eager to go to 
school. He gets both material as well as moral support. For example, he receives food 
parcels and his educator informed me that I should also inform other educators when he 
has to attend his treatment. Tile school is aware of my grandson's illness because I 
used to fetch him from school when he was attending his treatment". 
"Our neighbours are not aware about the nature of my grand-son's illness. However, 
120 
his friends know that he is suffering from tuberculosis and do not seem to be bothered. I 
know that my grand-son is also receiving food parcels from the community centre". 
"My relationship with my daughters is good. When I have time I sometimes visit my 
daughter to help her with washing because she cannot cope raising those children 
alone". "Yes, we don't have any relationship problems". 
4.4 RESPONSES	 OBTAINED FROM EDUCATORS OF CAREGIVER ONE'S 
ORPHAN 
The following questions (see Appendix Schedule 3) were posed to the educators of 
caregiver one's boy orphan in order to ascertain some of the information given by the 
caregiver herself, which was relating to the welfare of the boy orphan at school: 
•	 How did she come to know the orphan? 
•	 Did you notice anything wrong with the boy orphan? 
•	 What action did you take to help the boy orphan? 
•	 Was there any learner support sourced from other educators? 
•	 Are other learners aware of the HIV/AIDS status of the boy orphan? 
•	 Is the orphan aware of his HIV/AIDS status? 
•	 How is the orphan's academic performance in class compared to the 
performance of other learners? 
Like the other questions above, they were also not asked in any specific order, but 
depended on the responses given by the participant. The following responses were 
obtained from the educator: 
"I knew this orphan when he was brought to the school by his aunt, after schools were 
re-opened. He was transferring from another school. His size was not compatible with 
his age and I asked his aunt if there was anything wrong with the boy. His aunt 
explained that the boy is HIV positive, and his mother had died of HIV/AIDS related 
disease. 
121 
"Furthermore, he does not get a social grant. I then decided to take the boy orphan to 
my class, as well as making arrangements with his aunt to take him to the community 
centre where he could receive food parcels." "These food parcels were supposed to be 
collected in the morning before the child comes to school, as well as in the afternoon 
when he goes home. r also requested you (referring to this researcher), as one of the 
members of the school based support team at the school, to make arrangements with 
the social workers, in order to restore the child grant for the orphan." 
"It was easier for the orphan's educator to arrange all this since he was one of the 
school based support team members." 'This researcher, being the other member of this 
team, as well as using the opportunity as a researcher with community and social 
justice advocacy orientation, was able to make sure that the restoration of the social 
grant by the Department of Social Development and Welfare was urgently attended to." 
"Every case within the school has to be given to the school based support team for 
consideration and resolution." 
"One of the educators also talked to the people responsible for the school feeding 
scheme to include this orphan in the list of those who receive food. I bought him shoes 
and my wife bought him a school bag." 
"The school based support team also collected unused school uniform from some 
Grade one learners to give to this orphan since his size was similar to that of a Grade 
one learner. The school based support team requested help from some of the 
educators." "This help was in the form of unused clothes that could fit this orphan, and 
the support was excellent." 
"It was the responsibility of the school based support team to monitor the condition and 
progress of any child who has been identified as a vulnerable." 
"Although the child social grant was re-instated, I became worried about the orphan 
because he was no longer performing well in class even though he was the best 
performer in Grade five. I was also worried that his health seemed to be getting worse, 
and my suspicion was that he might not be attending his treatment at the clinic. I even 
122 
had doubts whether his aunt was fit to care for him or may be she needed some
 
training. During my encounter with his aunt, I have a feeling that she may be having too
 
much faith in the African herbs", As mentioned earlier, it has turned out during my
 
interview with the aunt that the orphan was not collecting the food parcels from the
 
community centre. His aunt. informed me that she was not allowed to collect food
 
parcels for the orphan. However, as mentioned during the interview with his aunt,
 
advised the caregiver to go with the orphan when he collected these food parcels.
 
"As this orphan's educators, we ensure that none of the other learners know about the
 
HIV/AIDS status of the orphan, just to avoid discrimination against him from other
 
learners. Thus, we do not know of any discrimination he might be suffering from other
 
learners."
 
"We also do not tell the orphan about his HIV/AIDS status. However, we suspect that he
 
may be aware about his status because one day when he was bleeding, he would not
 
let his school mates to touch his blood". "
 
"At this stage it may be difficult to know exactly whether the orphan may be aware of his
 
HIV/AIDS status since he has been informed that he is suffering from tuberculoses."
 
"It could be that he knows that no one should· touch his blood from the teachings he
 
received from school, as most learners are taught that because of different diseases.
 
care must be taken in helping other people."
 
4.5 RESPONSES	 RECEIVED FROM MEMBERS OF A NON-GOVERNMENTAL 
ORGANIZATION WORKING WITH HIV/AIDS INFECTED AND AFFECTED 
PERSONS 
Most of the caregivers complained about the Jack of community support structures. 
However, .where there were such structures, the caregivers complained about the 
inadequacy of support given by those structures. Therefore, this necessitated a need to 
identify one such structure and investigate the activities of the support structure. 
Members of one particular support group were asked the following questions (see 
Appendix Schedule 4), not in any particular format: 
•	 What is the name of your organisation? 
123 
•	 When and how did it start? 
•	 What are the core functions of the organisation, and how is the 
organisation structured? 
•	 Is there any training you receive? 
•	 What support do you give to the community? 
•	 Can you highlight any special cases where you have assisted 
orphans or caregivers? 
•	 What are your challenges? 
•	 How can schools help to address some of these challenges? 
The following responses from different members of the community organisation were 
obtained: 
''The name of our organisation is 'Dirang Ka Kagiso Community Organisation'. Women 
from different church denominations initiated this organisation. It was launched as an 
interdenominational organisation in November 2001. Initially, the organisation provided 
home-based care for the sick. We approached the Department of Health for assistance. 
However, the application was not successful even after they had requested us to 
provide them with our constitution and business plan. We then approached the Social 
Services Development Department, which was keen to help us. In 2004, the Social 
Services Development Department funded our project to the tune of R54, 000 for 
equipment. We were also given R200 stipend per person working in the project. 
However, they suggested that in order for us to continue getting funded, we also 
needed to focus on social issues, especially those affecting orphans". 
"We then decided to incorporate the social management department in addition to the 
health management department, which we already had. The health management 
department deals with the following issues: 
•	 HIV and AIDS 
•	 Nursing 
•	 Social auxiliary 
124 
The social management department focuses on the following issues: 
•	 Counselling 
•	 Training of orphans and caregivers 
•	 Identification of orphans, vulnerable children and caregivers 
•	 Home visits 
•	 Investigation of child abuse 
•	 Application for birth certificates, identity documents, and child or foster 
grants." 
"Some of our.members have or are receiving various training related to their field work. 
For example, those who are involved in health management receive training on HIV and 
AIDS, Nursing and social auxiliary. Those who are involved in social management 
receive training in basic counselling, welcoming of clients and home-based care. We 
are also receiving training on how caregivers are supposed to use the grant." 
"Regarding the health management, our trained staff ensures that sick clients are 
properly taken care of in terms of receiving medication for their illnesses. Our task is 
also to make sure that the sick are living in hygienic environment. For example, we 
sometime have to bath the sick and provide them with clean clothes." 
"Our social management department looks at issues such as identification of orphans, 
child-headed families and caregivers. We are working closely with social workers 
because when we have identified an orphan, and have identified a possible caregiver 
for this orphan, social workers have to complete the process of legal adoption. That is, 
social workers are involved in the assessment of caregivers. Sometimes we even help 
caregivers to obtain birth certificates for those orphans without them. This is done so as 
to hasten the process of applying for child or foster grants. While caregivers are waiting 
for foster grants, as it can be a lengthy process, we help them get child grants. The 
process of applying for foster grants is prolonged by the fact that there have to be some 
investigations regarding the suitability of the caregiver. After the grant has been 
approved, we make follow-ups to check and ensure that the money is used properly." 
125 
"Child-headed families are assisted in retaining their homes after the death of their 
parents. Most of these children are removed from their homes by relatives who then 
take houses and make them theirs." 
"We also investigate child abuses whether from the caregiver or community and report 
such cases to the police and social workers. This is where schools come in, since most 
of the educators could easily identify these abuses because they spend more time with 
learners. Our job is also to assist schools with counselling of these abused children 
since some schools are not properly trained to offer such services. We have been 
trained on how to approach the abusers, and this is crucial since if the approach is 
flawed, it-could further endanger the life of the abused." 
"Some of the activities we provide for orphans are social activities such as traditional 
music, poetry, dancing and drawing. We also meet them individually, to discuss their 
problems, as well as assisting them with their studies. We try to intervene where there is 
a problem between the caregiver and the orphan. Some of the genuine problems 
experienced by orphans include the caregiver not using the grant for the intended 
purpose, and food parcels given to orphans by community centres not benefiting the 
orphans." 
"Although we do have programmes for caregivers, but they are not yet implemented. 
These programmes include briefing, team-building and personal development. 
Programmes such as these would also help caregivers be able to deal with issues such 
as stigmatisation, which is still a major problem in most communities.. We have also 
realised that the community is not trained to identify caregivers." 
"One of the benefits we provide for our clients is the funeral assistance. As most of our 
clients come from very poor communities, we normally approach the area councillor to 
assist us in convincing the local municipality to allocate freely, a place where to bUry the 
dead. We also talk to one of the funeral parlours to offer free of cheap funeral services. 
We then contribute R1000, 00 for the whole funeral service. However, we do not expect 
families to cook any food for people coming to the funeral." 
"Our biggest challenges are the following: 
126 
•	 education Department' unwillingness to cooperate with us - Some people 
within the Department of Education feel that we are interfering with the 
curriculum; 
•	 educators are also alleging that we are interfering with the upbringing of 
children. For example, we had a client in one school and when we approach 
the school for help we would be referred to one educator who was not familiar 
with our organisation. This educator was being difficult to our member, and 
this resulted in the problem taking too long to be resolved; 
•	 office space and children centre - We currently operating from someone's 
house. This makes it difficult since we do not even have a phone, which 
makes it difficult to address problems effectively and efficiently. Children do 
not have adequate space to engage in different activities. It becomes even 
difficult to discuss with orphans about their problems since we need private 
consulting rooms; 
•	 funding - Due to insufficient funding, we always run out of funds, thus unable 
to continue with our programmes. We do not have transport to service our 
clients. When it is dry season, we cannot even have salaries for our workers. 
However, the Social Services Development still expects us to submit full 
reports. The department has advised us to look for sponsors, but it has been 
very difficult to get one; 
•	 maintenance of satellite branches - We have satellite branches mostly in 
rural areas, which are quite a far distance from the main centre. Due to lack of 
transport and adequate funds, we are unable to reach our clients in those 
areas .. For example, on one occasion we discovered that one of our clients in 
one of the rural areas had been dead for three months without being buried.. 
The community in that area did not have a church, school or any means of 
transport. The community members used a dam or river for bathing, washing 
clothes, as well as drinking from the same dam or river. It was difficult to bury 
this client as no adult in that community was prepared to get involved. All the 
preparations were done with the help of the child who was related to the 
deceased. What made thing worse, was that the deceased did not have even 
a single document that could identify her; 
127 
•	 Identification of suitable caregivers - These problems emanate from family 
.squabbles. Family members would figl"lt to care for orphans because of child 
or foster grants; 
•	 Resolution of abuse cases - Most people are relLlctant to report child abuses 
such as improper uses of grants or even physical or psychological abuses. 
When such abuses have been reported to social workers or police, it takes 
too long to address the problems. Social workers and police complain of 
being understaffed; and 
•	 Provision of birth certificates and ID - We still come across some 
administrative bottleneck when applying for birth certificates for orphans." 
"We would very much appreciate if schools could involve us in some of their activities. 
For example, schools could invite us to their School Governing Board (SGB) parent 
meetings. Perhaps we could be allocated some time just to inform the community about 
our work." 
"I would like to explain one case where one of the orphan was identified by one of our 
members. One of our members saw a boy passing her house, and she instantly 
became attracted to this boy. She asked the boy why he was walking on the streets 
without shoes when it was very hot. The boy said he just enjoyed walking even though 
he has shoe at home. The member bought this boy some bread to eat, but he decided 
to take it home to eat with his sister and cousins. Another day, the same member saw 
this boy walking with his aunt. She asked the aunt if they could discuss the boy's 
situation. His aunt told our member that the boy was HIV positive, and his mother had 
died of HIV/AIDS related disease. After the member had explained the coy' situation, 
we decided to put him on our programme, where he received food parcel while still 
waiting for the approval of the child grant. However, once he started receiving the grant, 
we stopped the food parcels. We also advised the aunt to apply for the disability grant 
for the boy." 
I gave details of the District Manager for one of the local Education Departments, so as 
to seek help whenever they experience problems with any of the district officials. I also 
advised them to request the School-Based Support Team of any school where they 
have clients to assist them. 
CHAPTER FIVE
 
FINDINGS FROM THE EMPIRICAL RESEARCH
 
5.1 INTRODUCTION 
The following sections will briefly state findings from literature, and these would be 
compared to findings from this study. The findings extracted from literature are 
explained below. 
5.1.1 Findings from literature 
The first problem experienced by caregivers of orphans is lack of knowledge regarding 
the formal adoption of these orphans (see Gerntholtz & Richter, on page 17 of chapter 
2). Different categories of people eligible to adopt children are explained by Cape 
Gateway operating in the Western Cape Province. 
The second problem for those who have knowledge regarding adoption face a lengthy 
process administered by an increasingly overstretched system (see Gemtholtz & 
Richter, on page 17 of chapter 2). 
The third problem identified was bad behaviour by orphans (see second set of bullets 
on page 33 of chapter 2). 
Fourthly, caregivers develop stress, which in many instances lead to their physical and 
mental health, personal relationships and standards· of care suffering (see fourth bullet 
of first paragraph on page 34 of chapter 2 and links and Masson,· first paragraph on 
page 45 of chapter 2). 
Poverty was the fifth problem identified in the literature review (see UNFP, 2007 on 
page 34 of chapter 2). 
The sixth problem experienced by the caregivers was "role strain" and "identity" (see 
second paragraph on page 47 of chapter 2). For example, many grandmothers had 
129 
problems whether they should see themselves as mothers (as they are normally
 
referred to by grand children) or grandmothers.
 
Interpersonal and family conflicts were identified as the seventh problem experienced
 
by caregivers (see bullet 1 on page 49 of chapter 2).
 
Isolation and fear for the future was the eighth prolem facing the caregivers (see bullet 2
 
on page 49 of chapter 2).
 
Excessive workload of having to care for children was the nineth problem (see bullet 3
 
on page 49 of chapter 2).
 
Stigma and discrimination relating to HIV/AIDS was the tenth problem experienced by
 
caregivers (see bullet 4 on page 49 of chapter 2).
 
5.1.2 Findings from this study 
This study was aimed at investigating problems experienced by caregivers of learners 
orphaned due to HIV/AIDS. On analysis of the findings, it has become apparent that 
there were general or common problems experienced by almost all the caregivers 
interviewed. However, in some instances, the study uncovered some problems that 
were specific to some caregivers. Problems identified in this study are discussed below. 
5.1.2.1 Problem 1: Poverty 
It is apparent from this study that most of the families interviewed could be defined as 
extended family systems. Only two cases were identified as foster care families, 
without any relations to the orphans. These caregivers can be classified as informal 
caregivers who are categorised as grandparents, aunts, uncles, siblings or even 
sympathetic members of the community (see Gerntholtz & Richter, paragraph two on 
page 17 of chapter 2). As in the literature review, poverty was identified as one of the 
problems facing caregivers in this study. Most of the caregivers were unemployed· 
single-parent families, whose only source of income was the children grants received on 
behalf of their own children and their orphans. Another source of income was the foster 
grant received by the caregiver. 
The findings in this study, suggest that although families are entitled to foster care and 
adoption grants, women entitled to state maintenance grants and AIDS patients entitled 
130 
to support as disabled people, not all who are eligible under these provisions are aware 
that they qualify for state support. Those who are aware are sometime limited by other 
requirements from collecting these grants, as in the case where the caregiver was 
unable to receive the foster grants due to orphans not having birth certificates. 
The other problem, especially among the black South Africans, is that mostly women 
provide caring for persons with HIV/AIDS-related illnesses and orphans. As this study 
has shown, most of these women consider this type of caring as an obligation since 
most of these orphans are relatives. Therefore, they consider this as an unpaid work 
necessitated by a need to care for the loved ones. However, with the number of 
orphans expected to increase annually, this may increase the current level of 
exploitation by requiring more unpaid work. This may even contribute to existing gender 
inequality and exaggerates already high opportunistic costs for women. Furthermore, it 
may aggravate gender biases, with the possibility of contributing towards ongoing 
spread of HIV infection. This may result in caregivers' existing burdens limiting their 
ability to provide sufficient care for their orphans. 
As this study has shown, the care giving families are distributed between female­
headed households and the tradinional two-parent families, where more people are 
depended on fewer or no income earner. This lack of income is likely to put more 
pressure on AIDS orphans to contribute financially to the household (see Avert, 2007:2, 
chapter 2). In some cases this might even push them to the streets to work, beg or seek 
food, thus escaping the extended family safety net. Most caregivers received some form 
of grants. However, it is very clear that these grants are not adequate to alleviate 
poverty (see Table 2.4 on page 52 of chapter 2). 
In this study, it has been made clear that long-term poverty has affected some 
.households. For example, one child-headed caregiver noted that she was withdrawn 
from school because she could not afford school fees. She ended up getting involved in 
an abusive marriage for survival sake. It is well documented that female-headed 
households are among the poorest, and have little opportunity to escape from poverty. 
131 
5.1.2.2 Problem 2: Stress and depression 
One or a combination of different kinds of behavioural problems displayed by orphans, 
which most caregivers complained about, included sadness; crying; withdrawal; 
aggression and attention seeking. Some of these behavioural problems displayed by 
orphans were the source of stress and depression in caregivers. 
Most caregivers interviewed in this study fall under the traditional family safety net, 
where a large proportion of them are either aunts, uncles, grand-mothers or even 
sympathetic members of the community, who give fostering care to these orphans. In 
two cases, the orphans themselves were giving care to their siblings. Most of these 
caregivers complained about lack of proper training to deal with caring for such highly 
traumatised children. According to the transactional coping process as outlined by 
Figure 2.2 on page 41 of chapter 2, the environment makes constant demands on 
individual. This individual experiences these demands as stress (anxiety or tension) and 
has to decide how to manage the stress. The outcome of decision-making is either a 
coping response or reappraisal. For example, a child's withdrawal; aggression or 
attention seeking may become less stressing or depressing to his or her caregiver when 
the caregiver acquires knowledge that empower them understand the chronic stressors 
in the lives of traumatised children. 
It has become apparent in this study that certain coping responses (orphan) have 
. influenced the child's environment (caregiver). This in tum presented new demands on 
the individual or alleviated the stress. The following example based on one of the 
experiences by one caregiver interviewed, illustrates the reciprocity in the transactional 
coping process. An orphaned girl might have decided to cope with trauma by having 
sexual relationship with multiple partners, or be aggressive to other children. However, 
this choice increases her susceptibility to infection, yet provides her with money and 
recognition. Her stigmatised or depressed caregiver, avoiding discrimination or social 
rejection by the community, decided to send her to a school for the delinquent. If she 
becomes pregnant, or infected, or both, or her aggression leading to an offence, she 
may be expelled from school. This may in turn add her personal trauma to the distress 
already experienced by the caregiver. 
132 
5.1.2.3 Problem 3: Family fights 
Another problem evident in this study was that of family squabbles relating to the care of 
orphans. The one problem that was uncovered was that of families fighting for the 
control of the child grant. The other problem was that of two families fighting for the 
adoption of the orphans based on family tradition and societal culture. In this instance 
the family home of the orphans was nearly auctioned and some assts distributed among 
relatives. These types of problems were also highlighted during the interview with one 
of the community support organisations. They cited these as some of the reasons that 
cause problems during the process of appointment of a suitable caregiver. Most of the 
caregivers interviewed were coming from disadvantaged and impoverished areas. Care 
giving for most of these people offers a possible means of income, as most are 
unemployed. 
5.1.2.4 Problem 4: Adoption 
The question of adoption is still not clearly understood by many South Africans, as 
reflected in this study. In one instance, the caregivers were denied an opportunity of 
legally adopting the orphans simply because the couple were not legally married. 
According to this definition, it therefore suggests that one of the caregivers who were 
denied the opportunity of legally adopting their orphans, simply because they were not 
legally married are in fact, entitled to adopt them. These caregivers can be classified as 
"partners in a life-partnership". 
5.1.2.5 Problem 5: Bad influence of orphans by neighbours 
Some caregivers reported bad influence of neighbour on their orphans. For example, 
one caregiver's neighbours concocted lies about the caregiver. These neighbours 
influenced one of her orphans to lie to the police that she has physical abused one of 
her orphans. This led to the caregiver being imprisoned for something that she had not 
done. This clearly shows how members of the community may exploit vulnerable 
children. Children orphaned by HIV/AIDS are often stigmatised by society. This feeling 
of shame, fear and rejection often leads to exploitation of orphans by the society, wrlere 
orphans, due to wanting to be accepted by members of the society, would do anything 
demanded of them. Orphan and their caregivers are often not aware of their rights and 
133 
the laws intended to protect them from discrimination. However, even if they are aware 
they fail to demand better treatment from community. 
If the care giving families are suffering from stress or depression, these orphans may 
escape the family safety net. They may end-up into the streets, thus becoming street 
kids, or being exploited as child labourers. Caregivers in trying to avoid having their 
orphans being badly influenced by the neighbours may ban their orphans from having 
any interaction with those they consider bad elements. However, according to social 
constructivism theory, language is developed through interaction of children with their 
parents or caregivers, siblings and the society at large, thus depriving children an 
opportunity to interact this way may lead to deprivation from learning and development 
(see Laurillard, paragraph 2 on page 33, chapter 2). 
Laurillard maintains that children may be deprived an opportunity to interact with 
different sectors of the community through natural as well as deliberate action by the 
society. Deliberate actions or man made causes in this instance, could be abuse by the 
caregiver by refusing her orphans to interact with other children or neighbours. In 
Vygotsky's theory, the development of language and articulation of ideas was central to 
learning and development (see paragraph 2 on page 33, chapter 2). According to social 
constructivism, the learner being a member of a particular culture inherits historical 
developments and symbol systems, such as language; logic; and mathematical 
systems, and these are learned throughout the learner's life. It also stresses the 
importance of the nature of the leamer's social interaction with knowledgeable members 
of the society, without which it is impossible to acquire social meaning of important 
symbol systems and learn how to utilise them (see, paragraph 2 on page 33, chapter 2). 
5.1.2.6 Problem 6: Education 
It is evident in this study that orphan children are being kept in school. In fact, 
caregivers are going to great lengths to keep their children in schools, and schools are 
being flexible in understanding the circumstances facing caregivers and their orphans. 
However, this study has also shown that children orphaned by HIV/AIDS may miss out 
on school enrolment, or have their studies interrupted, or even perform poorly in school 
as a result of their stressful situation. An example is a child-headed family caregiver 
whose schooling was interrupted after the death of her parents. Another example is that 
of an orphan who missed classes when his caregiver was collecting the foster grant, so 
134 
as to ensure that the caregiver buys him whatever he wanted. However, there were also 
aspects such as school fees, school uniform, transport and food, which presented major 
barriers because many caregivers could not afford these costs. 
Schools are critical vehicles to help reduce the spread of HIV/AIDS (see paragraph 2 of 
chapter 1, page 3). 
Ecological systems theory looks at the child's development within the context of the 
system of relationships that form his or her environment (see paragraph 2 of chapter 1, 
page 3). 
5.1.2.7 Problem 7: Lack of training 
This study has highlighted some deficiencies relating to the training of caregivers, in 
order to prepare them for the caring of orphans. Normal parenting is regarded as one of 
the most difficult jobs facing parents, especially women. Caring for orphans, especially 
those who have been orphaned due to HIV/AIDS, makes it even more difficult since 
most of them are traumatised by their losses. In fact, the importance of equipping 
caregivers with training was highlighted in the findings from one study, which suggested 
that caregivers should be able to access counselling and training on caring for children, 
children's rights and preparing a memory book (Exchange, 2004). The study purports 
that families and communities are the first line of response to the impact of HIV/AIDS on 
very young children. However, often communities in developing countries are seen as 
strong enough to endure any obstacle. But in broad-scale situations of poverty, coping 
mechanisms are strained to breaking point and traditional safety nets unravelling. 
This inadequate training given to caregivers was also highlighted during interview with 
one of the community support organisations. It was indicated that although such 
programmes eXisted, the implementation of ttle programmes was their biggest problem. 
According to (Paquette and Ryan, 2001), communities must provide parents with 
access to people with similar concerns that can function as resources and emotional 
support. In fact, community support is a cornerstone of a "Family-Centred Approach" 
theory, whose key components are the following (Connard & Novick, 2001): 
135 
•	 Creating partnerships an helping relationships: families are supported and 
child development is enhanced through helping and partnership relationships; 
•	 Building the community environment: families gain information, resources and 
support through their connections to the community environment; 
•	 Linking families and community support: participation, two-way 
communication, and advocacy strengthen both the community support 
network and family functioning. 
5.1.2.8 Problem 8: Lack of social support services 
Some of the frustrations highlighted by caregivers were regarding the delays in issuing 
of birth certificates by the Home Affairs department. Caregivers complained of being 
sent from one department to another. For example, when orphans do not have proper 
documents for caregivers to apply for birth certificates, they would be referred to the 
social workers. However, social workers in turn would complain about their workloads 
and understaffing. This has even led to one of the caregivers abandoning any hopes of 
obtaining birth certificates for two of her orphans. 
5.1.2.9 Problem 9: Lack of community support structures 
Lack of community support structures surfaced from most of the interviews conducted in 
this study. Caregivers complained either of the absence of these structures from their 
communities, or their poor service. However, an interview conducted with one of the 
community support organisations highlighted some of the deficiencies experienced by 
such organisations. Problems experienced by the organisation included lack or 
insufficient funding, transportation costs, uncooperative government departments and 
some schools. Shortages of funds were their major problem since it contributed to 
failure of implementing certain community programmes. 
It was evident in this study that this community organisation's programmes were mainly 
stifled by lack of funding. It is also possible that the organisation might not have been 
aware of other sources of funding at their disposal. It was also clear from the findings 
that most caregivers considered nongovernmental organisations as the only structures 
that could offer support. Other community structures such as small community 
136 
groupings of caregivers meeting to discuss and empower other members. Caregivers 
could also form faith-based organisations in their respective churches. 
5.1.2.10 Lack of prior planning by orphans' parents 
The Minister of Social Development, in the same conference on orphans and other 
children made vulnerable by HIV and AIDS, urged delegates to discuss one of the most 
critical but difficult issues, which was succession planning (SARPN, 2007). The Minister 
indicated that experience has deemed it necessary that in mitigating the impact of the 
epidemic on children, people need to proactively look at the issue of succession 
planning~ He argued that families needed to confront this issue, and be assisted with the 
drawing up of wills and other important documentations and planning. The Minister 
asserts that such action will provide them with opportunity of choosing who will take 
care of their children, and what will happen to family assets such as the family home. 
Failure of parents in drawing up a will has led to fierce fighting between the paternal and 
maternal relatives of one of the orphans whose caregiver was interviewed in this study. 
The fighting was over the legal adoption of the orphans. 
In fact, Levine reports that when a parent dies of AIDS in USA, surviving children face 
an uncertain future about their custody arrangements and financial benefits (Levine, 
1995 cited in Ntozi, 1997). This kind of situation is also common in sub-Saharan Africa 
including South Africa. However, in most African countries paternal grandparents 
usually decide who should take care of the orphan. In a survey conducted in some 
regions in Uganda, households were probed on the person who made the decision on 
who is to care for the orphans. The study showed that the clan members (29.8%) 
followed closely by the parents (26.8%) and the orphans themselves (25.4%) made 
decisions (Ntonzi, 1997:29). The study showed that grandparents also made 14.8% of 
the decision-making. 
Although this study was not meant to determine who was responsible for making the 
decision on who is to care for the orphan, it is probable that the grandparents made 
most of the decisions, except in the cases where foster parents were determined by 
social workers. Most of the orphans were under the care of either their grandparents, or 
their aunts or uncles, who might have been requested by the grandparents to care for 
the orphans. In one case, members of the community influenced the decision on who 
137 
was to care for the orphan. For example, some educators of one of the orphans 
requested the orphan's aunt to give care to the orphan. This child was initially cared for 
by his grandparents. 
5.2 RECOMMENDATIONS AND MOTIVATIONS 
This section presents recommendations based on both the findings from literature 
review and empirical research proceedings. The motivations for these 
recommendations are also provided. 
5.2.1	 Adequate training for caregivers and monitoring of grants for orphans 
5.2.1.1 Motivation 
Most caregivers are tempted to use grants for reasons other than for the intended 
purposes. This resulted in orphans not getting proper medication, food and transport to 
school. 
5.2.2	 Intervention from researchers in convincing the government for a need to 
continue issuing grants even after eighteen years of age 
5.2.2.1 Motivation 
This research has shown that caregivers, especially child-headed families struggle to 
maintain life when these grants are stopped when children reach eighteen years of age, 
and are still attending school or university. 
5.2.3	 Special grants or loans for university studies 
5.2.3.1 Motivation 
The normal grants given to caregivers for orphans are not adequate to make savings for 
their education. 
5.2.4	 Extra government incentives for caregivers 
138 
5.2.4.1 Motivation 
As long as HIV/AIDS exists, there would always be a need for caregivers. These 
caregivers also use their private income to supplement the grants given for orphans. 
5.2.5	 Empowerment of Social Welfare Department 
5.2.5.1 Motivation 
Care giving is stressful and thus caregivers require constant support. Orphans are 
generally causing problems for caregivers, due to their unacceptable behaviour, which 
might be caused by the community or even relatives. 
5.2.6	 Training and empowerment of School-Based Support Teams (SBST) in 
schools 
5.2.6.1 Motivation 
Most caregivers look up to schools for support whenever they encounter problems with 
the orphans. Educators are the first to discover when learners are experiencing 
problems, even problems emanating from home or community. Schools are also in a 
good position to even identify orphans. 
5.2.7	 Capacitate and empower non-governmental organisations (NGOs) 
5.2.7.1 Motivation 
Proper training should be given to these NGOs since they playa vital role in supporting 
both caregivers and orphans. They should be financially viable so as to execute some 
of the projects intended for orphans. 
5.2.8	 Synergy between schools, NGOs, social workers, nurses and police 
5.2.8.1 Motivation 
All these structures are centred on the child thus require strong collaboration among 
them. 
139 
5.3 LIMITATIONS OF THE STUDY 
Limitations of the current study should be noted. This study cannot show with absolute 
certainty whether the problems identified are related to orphanhood in general, rather 
than orphanhood by HIV/AIDS. It may be necessary in future to have a comparison 
group of caregivers of orphans due to reasons other than HIV/AIDS. However, Cluver 
and Gardner (2006:8) argue that this could be methodologically challenging in the 
urban South Africa, since the cause of death is frequently hard to ascertain and many 
reported non-AIDS death are due to AIDS. 
Other limitations included reliance on one population race. The study cannot ascertain 
whether these findings can be applicable to caregivers from other race groups such as 
white or coloured races. South Africa is a multicultural society with different norms and 
values. Thus, the way we react to certain stimuli might be influenced to a large extent by 
our customs and values. 
Further limitations included reliance on one specific type of caregiving. The study did 
not explore other type such as orphanages, but concentrated on what is regarded as 
the traditional safety net. 
5.4 CONCLUSIONS 
This study investigated through literature review as well as empirical research, problems 
experienced by caregivers of orphans due to HIV/AIDS. There were similar problems 
revealed in this study to those identified in the literature. For example, both literature 
and this study revealed poverty, stress and interpersonal and family conflicts as major 
problems experienced by caregivers. Grandparents and other family members who 
were caregivers in this stUdy did not see "role strain" and "identity" as major stumbling 
blocks. Stigma and isolation were also some of the problems not directly experienced 
by most caregivers. However, it was evident that some of these caregivers who did not 
experience stigmatisation and isolation was due to their less involvement with 
community members. 
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153 
APPENDIX SCHEDULE 1 
INTERVIEW QUESTIONS FOR CAREGIVERS 
1.	 How many orphans are under your care? 
2.	 How did you know about the orphans, and why did you take them into your care? 
3.	 What is the relationship between you and the orphan/s? 
4.	 How long have you provided caregiving? 
5.	 What type of parenting are you giving to this/these orphan/s (e.g. adoption or foster)? 
6.	 Can you explain the type of family structure that exists in your home (e.g. single; 
traditional; child~headed or orphanage)? 
7.	 How is the relationship between you and these orphans? 
8.	 Do you have any other children except these orphans? 
9.	 How is the relationship between these children and the orphan/s? 
10.	 How is the relationship between your relatives and these orphans? 
11. Are any of these orphans infected by HIV/AIDS? 
12. Are they aware of their HIV/AIDS status? 
13. Would you advise other people to be caregivers? 
14. Can you give account of your own health status? 
15. How often do you attend treatment for your illness? 
16.	 Did this illness start before or after caring for your orphans? 
17. How does carrying for children orphaned due to HIV/AIDS affect your approach to life? 
18.	 Do you personally give treatment to orphans infected by HIV/AIDS? 
19. Have you received any training or counselling regarding treatment of HIV/AIDS 
infected patients? 
20. How many people are working in the family? 
21.	 Is there any other source of income for the family? 
22.	 Do you receive any social grant? 
23. What are the basic needs of the orphans? 
24.	 Is the grant sufficient for all these needs? 
25. What else do you use the social grant for? 
26. Are the orphans aware of the social grant you receive on their behalf? 
27. If orphans are aware of the social grant, are they not demanding to have full control 
of the usage of this grant? 
154 
28. How is the relationship between you and your neighbours? 
29. Does this relationship affect the orphans in your care? 
30.	 Do orphans under your care have friends in the community? 
31.	 Are the orphans in your care having a good relationship with the other community 
members? 
32.	 Is the community aware of the HIV/AIDS status of orphans in your care? 
33.	 What kind of support do you get from your community? 
34.	 Are you aware of any support groups in your community? 
35.	 Are any of your orphans attending school? 
36.	 Do you get any support from the schools where they attend? 
155 
APPENDIX SCHEDULE 2
 
INTERVIEW QUESTIONS FOR OTHER FAMII_Y MEMBERS (GRANDPARENTS) 
37. Can you give me some background relating to the orphan's parents? 
38. What was the cause of their mother's death? 
39. Did she attend any support group meetings before she died? 
40. Are any of your grandchildren having health problems? 
41. Do you know what could be causing these illnesses? 
42. Is the orphan aware of the cause of his illness? 
43. Is he getting any treatment for his illness? 
44. How is your relationship with the orphans? 
45. How is your relationship with your neighbours? 
46. How is your relationship with your children? 
47. Do you get any support from the community? 
48. How is your. grandson performing at school? 
49. Is there any support he gets at school? 
156 
APPENDIX SCHEDULE 3 
INTERVIEW QUESTIONS FOR EDUCATORS 
50.	 How did she come to know the orphan? 
51.	 Did you notice anything wrong with the boy orphan? 
52.	 What action did you take to help the boy orphan? 
53.	 Was there any learner support sourced from other educators? 
54.	 Are other learners aware of the HIV/AIDS status of the boy orphan? 
55.	 Is the orphan aware of his HIV/AIDS status? 
56.	 How is the orphan's academic performance in class compared to the performance 
of other learners? 
157 
APPENDIX SCHEDULE 4
 
INTERVIEW QUESTIONS FOR NON-GOVERNMENTAL ORGANISATIONS (NGOs) 
57.	 What is the name of your organisation? 
58.	 When and how did it start? 
59.	 What are the core functions of the organisation, and how is the organisation 
structured? 
60.	 Is there any training you receive? 
61.	 What support do you give to the community? 
62. Can	 you highlight any special cases where you have assisted orphans or 
caregivers? 
63. What are your challenges? 
64.	 How can schools help to address some of these challenges? 
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