Needs of children affected by HIV and AIDS : Mangaung in the Free State

Curationis 30(3): x-y The terminal illness or death of a parent due to HIV and AIDS has a disastrous effect on the surviving children. The purpose of this study was to explore and describe the needs of HIV and AIDS orphans and pre-orphans. A qualitative method using indepth interviews with 10 children affected by their parent’s illness or death was carried out. Results indicate that there was a marked reduction in financial capital paving the way for basic physical needs such as food, clothing, fuel and shelter. Lack of school fees, uniforms and transport money together with biased teachers and rigid school policies were affecting school attendance and performance. On the psychosocial level needs expressed were for family and community support, friendship, acceptance by the group as well as love and belonging. It seems as if stigmatisation and resulting ostracism by important-others is a drawback at all levels of interaction for AIDS orphans and pre-orphans.


Introduction
It is an accepted fact that the Human Immune virus (HIV) and the cluster of diseases it causes, Acquired Immune D eficien cy S yndrom e (A ID S ) has devastated Sub-Saharan A frica.An estimated 80% o f the millions o f deaths have occurred in this region (Dorrington, B ourne, B radshaw ,.L aubscher and Timaeus, 2001:3).As shocking as these deaths may be, we have to consider the fact that the impact o f HIV and AIDS on the lives o f the children in this region of the world defeats description.
The disastrous effect o f AIDS manifests in the vast number o f children who watch as their parent(s) slowly become ill and ultim ately die.In South Africa it is estimated that by the year 2015 children orphaned by AIDS will comprise 9 to 12 % o f the total population o f South Africa (Smart, 2000).With the strategic use of an ti-re tro v ira l drugs by p regnant mothers, at least 70% o f children will be bom without the HI virus while there is a 100% chance that they will be orphaned (W hiteside, 2000).T herefore Sub-Saharan Africa will be raising an orphaned generation in societies already weakened by social and economic problems and underdevelopment.
The AIDS epidemic has the following consequences for the children: they may become orphaned or abandoned as a result o f AIDS; they may be members of an HIV infected family and at risk of becoming infected; or they may be living in an affected family but be members of a community which has suffered the socio economic devastations brought about by HIV and AIDS (Smart, 2000).
HIV and AIDS affects children long before their parents die.It is pertaining to such a situation that the term "pre orphan" is used to describe a child who has not yet lost a parent to HIV and AIDS, but nonetheless, who is caring for his/her terminally ill parent (World Bank and UNICEF, 2002:2,6).
The developing child has a diverse range o f needs on the physical, emotional and so cial level w hich are m ostly underpinned by financial need.The needs of AIDS orphans and pre-orphans are neglected at most levels as their parent/s become ill and die.
The physical and developmental needs of the growing child are many and varied.The mother normally functions as the primary care giver and takes care that the child is clothed, warm and safe; she provides nutrition and she oversees and teaches cleanliness and hygiene; she responds to physical ailments, ensures that the child is im m unised against communicable diseases such as measles, polio and tuberculoses.With little or no response to these needs children may suffer hunger, cold and general physical neglect.They may be predisposed to in fec tio u s d isease s and at risk o f contracting HIV and AIDS.
The psychological or emotional needs such as love and security, the need for praise and recognition and the need for new experiences and responsibility which are essential to the growing child w ill be unm et and m ay lead to psychological underdevelopment.The social needs of the child are closely linked to the em otional needs and are manifested in varying relationship needs such as the need for friendship and the need to belong to a group.The timely fulfilment of these needs is related to the development o f a healthy self esteem and an individual who grows up confidently with the psychosocial skills needed to function as a well adjusted adult.For the AIDS orphan and pre-orphan there m ay be m any shortcom ings in this process as so many o f their psychosocial needs are not met.
As parents become ill or die children are left at a crossroad where their lives have the possibility o f following one o f the following courses.They can be taken in and cared for by the extended family such as aunts and uncles, they may be cared for by grandparents, or they may care for them selves w ith the eldest becoming head o f the household and caring for siblings.In all o f these scenarios the com m unity may offer assistance to whoever is caring for the children.In m ost cases fam ilies or communities who could have taken over their care and made a difference, turn away.The reasons being that as HIV and AIDS take its relentless toll, the situation o f orphanhood is fuelled by poverty, prejudice and ignorance.Accordingly the ability and/or desire o f the affected families and communities to support these children is vastly reduced or non existent.
The problem o f the AIDS orphan or pre orphan should be seen ag ain st the background o f stigmatisation o f people suffering from HIV and AIDS and the economic crises that many communities are experiencing.
The tra d itio n a l A frican m odel o f surrogate p aren tin g seem s to have becom e dysfunctional and rem ains questionable.The lack o f knowledge and u n d erstan d in g born out o f stigm a, discrimination and fear regarding the nature and transmission o f HIV and AIDS have denied many children the option o f surrogate parenting by the extended family.The families and communities that are expected to respond to the plight of the AIDS orphans and pre-orphans are also faced with the social and economic problems that prevent them from total commitment to the care o f any child affected by AIDS (Kerkhoven, 1998:4-5).Grandparents might sometimes take on the responsibility of the orphaned child, yet this situation offers its own dilemmas.Grandparents are usually very old and very poor and have to struggle to raise orphaned children on meagre government grants.According to Foster (1997) the average age o f grandparents recruited into childcare is 62 years.At this age and with their economic problems one could expect the children in their care to be disadvantaged at m any levels o f development.
According to UNAIDS, UNICEF and BLCA (1999; 1 -3) children often become heads o f households at primary school age.In such cases they take care o f siblings and sick or dying parents.Not only are these children deprived o f parental care and nurturing but they also have to play the role o f adults in taking care o f younger siblings.These children are not equipped to take care o f younger siblings and cannot meet their physical and psychosocial needs.Many older children leave school and jeopardise their own health and developmental needs in order to take on roles as parent, nurse and provider.
The AIDS orphan situation leave some children w ithout shelter as they are abandoned, sent from one relative to another because their extended family already have too many children to take care o f or because o f the stigmatisation o f AIDS orphans.These children are left living on the streets and deprived o f basic needs, dignity and their human rights.Street children are easily drawn into crime and the selling o f sexual favours because o f hunger or a need to belong.This will predispose them to HIV, other sexually tran sm itted diseases and unw anted pregnancies.
F am ilies freq u en tly ex p erien ce abandonment and social isolation once the diagnosis o f HIV and AIDS have been made and is known publicly.The fear, stigm atisation and ostracism o f people with HIV and AIDS is reflected on the ch ild ren w hen they too are discrim inated against or w hen they isolate themselves from their peers due to the shame they feel for a parent who suffers from the disease.Children are exposed to the HI virus in several ways.They may contract HIV and AIDS through vertical transmission, sexual exploitation and unsafe cultural practices as in the case o f scarification and circumcision.
There are various ways in which children are affected by HIV and AIDS.This limits th eir p o ssib ility o f a successful childhood, which in turn could affect their future as productive members o f the community.
The purpose o f the study was to explore and describe the needs o f children affected by HIV and AIDS.In so doing it was hoped to understand the children's needs from the totality of their life ways bearing in mind the dynamic interplay of these life w ays w ith th e ir social, economic, political, religious and cultural values within historical and meaningful life events.

Method
Based on the purpose o f the study, a non-experimental research design o f a descriptive, exploratory and contextual nature in the qualitative paradigm was used to explore and describe the needs o f children affected by HIV and AIDS.The method o f in-depth unstructured interviews was used to gather data.
The study was descriptive because it sought to understand the actual state of the children affected by HIV and AIDS, as disclosed by th eir uninterrupted descriptions o f their real-life situations.The study was exploratory because of the little theoretical knowledge of orphanand pre-orphanhood consequential to HIV and AIDS which is a persistent phenom enon.
The study was also contextual in nature as the phenomenon o f "needs" of HIV and AIDS orphans and pre-orphans were studied directly from the children who experienced the needs intrinsically and within the context of their natural life settings.1.)

Population and sampling
The sampling method that was used was a non-probability convenience sampling method.The greatest advantage o f the convenience sampling method is the way it creates accessibility to respondents that may be recruited for a study.To select the children they had to fulfil certain inclusion criteria.The inclusion criteria for the study were as follows: • Children were between the age of 11 and 18 years.At this age their cognitive development allow them to be more aware of their needs, hence it was easy for them to verbalise their needs; as at this age their operational thinking allow them to hypothesise about possible outcomes o f problems and to evaluate these outcomes comparatively (Pawik & Rosenzweig, 2000).

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The children were able to speak Sesotho, IsiXhosa or Tswana, as these are the main languages o f Mangaung and the researcher is fluent in them.

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The children were all residents o f Mangaung, as the study concerned the children in Mangaung affected by HIV and AIDS.

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The children expressed their willingness to participate in the study.

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The children were either paternal or maternal orphans or both due to HIV and AIDS or; • Either one or both parents were ill due to HIV and AIDS.

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The caregivers of these children gave consent for the children to participate in the study.
• Children 18 years o f age gave consent themselves as they were heads o f households.
The participants were found through the home-based care workers from Naledi Hospice who introduced the researcher to the families that were affected by HIV and AIDS and the children that met the inclusion criteria w ere recruited to participate in the study.Home-based care workers had been either looking after the ill parent (pre-orphan) or had looked after the deceased parent (orphan).The homebased care workers explained the research p u rpose and pro ced u res to the caregivers o f the family in order that the caregiver may give informed consent for the children's participation in the study.
In qualitative research the determinant of sample size is the saturation of data.This occurs when there is emergence of rep eatin g them es or w hen no new information is being discovered from the interviews.In this study saturation was reached after 10 participants had been interviewed.

Research technique
In

Pilot study
A pilot study was undertaken to test the level o f understanding o f the interview question.Two children were used who were not later included in the major study.
One was a pre-orphan and one was an orphan.It was discovered that they could not relate to the meaning o f the word "need" when asked about their needs but that they could respond when asked about their problem s.It was decided that "problems" would be the operative word when interviewing the children.

The process of data collection
Before commencing the study, written consent was obtained from the formal gatek eep ers.
T his included the caregivers/parents of the participants.
In terv iew in g in volves a good relationship between the interviewer and the p artic ip a n ts and th ere fo re the process by which the interviewer gains access to the participants and makes contact with them is crucial.The homebased care workers from Naledi Hospice introduced the researcher to the orphans and the families of the pre-orphans that met the sampling criteria.These home based care w orkers had a good relationship with the participants and the families of the participants.By accessing the participants via the home based care worker the researcher firstly built a relationship with the caregivers and later with the participants.
On the first visit the researcher, wearing a professional uniform was introduced to the caregivers or parents as a nurse researcher who was interested in the needs of children whose parents are ill or deceased.The concept of HIV and AIDS was only mentioned to those caregivers and participants who knew the status of the parents, or to the parents who had had th eir statu s d isclo sed .
The researcher showed genuine concern for, and interest in the family as a whole.These social skills were used to build rapport w ith the caregivers.A fter establishing trust with the caregivers an appointment was made to meet with the participant.This would be the second visit to the family.
On the second v isit the researcher met the participants individually and the purpose of the study as well as the ethical issues was explained to them.After the participant agreed to participate an appointment was m ade with each one for the interview .The p articip an t's choice o f location, date and time was accommodated.A third visit was m ade to co n firm the appointment for the interview and to have an opportunity to build a good rapport with the participants before the interview to o k p lace.
E ight o f the interview s w ere done at the participants' homes and two were done at the local clin ics on request o f the participants.The interviews were done in quiet and relaxed settings which were free from daily disruptions.An effort was made to keep each participant in the natural environment that was contextual to his/ her experience.Before the research question was asked the interview er helped the p artic ip a n t to relax by engaging in ice breaking conversation con cern in g to p ics such as sports, homework and school.
For the pre-orphans the central question was: • Will you please tell me more about all the problems that you are encountering since the illness of your mother/father For the orphans the question was: • Will you please tell me more about all the problems that you encountered since the death of your mother/father The participants were given sufficient time to think about and describe their needs freely and extensively in their own words.The narrative presented an account o f th e ir p ersp ectiv e on experiences and the essence o f meaning that they were giving to that part o f their reality (Cormack, 2000;Kvale, 1996;Maxwell, 1996).
The interviewer used well established com m unication skills o f listening, handling o f silence, reflection and probing to facilitate responses o f the participants.All interviews were audio taped with permission of the participants using an unobtrusive tape-recorder so as not to intimidate the participants too much.

Field notes
Besides the interviews the researcher made use o f field notes to collect data as a validation of information given by the participants.The researcher kept a written account of all the things heard, seen, experienced and thought in the course of collecting and reflecting on the data.This was for the purpose o f rem em bering, retrieving and for the analysis of data.
It is o f relev an ce to note th at the researcher felt very strained during the study because o f the em otional and physical neediness o f the respondents.
In some cases she had to take food packages since the respondents could not function on an empty stomach.In addition she took care of an ill parent and helped with homework.The emotional bonding aided interviews but made it difficult to leave the settings.

Data presentation and literature control
The sample o f the study comprised 10 children from Mangaung who were either orphans or pre-orphans and were or had been part of the Naledi Hospice Home Based care System.The following table gives a description and an analysis of the composition o f the group.Engelbrecht and Steyn (2002:11-12) who indicated that because of reduced income and unemployment in these households, borrowing followed by no inheritance of any lump-sum payment from insurance policies or savings further drives the family from poverty to destitution: Apart from medical expenses the income of fam ilies are reduced due to funeral expenses when a parent dies (Smart, 2000:22;Wekesa, 1999: 12-14;Foster, 1997:4-5).
We had no money to bury her, as there was no money for the coffin.Then I had to borrow money just to get a coffin, but luckily from whom I lend money later said I must not repay back his money." The The findings in this study are supported by other studies indicating that HIV and AIDS have a disproportionate impact on poor communities.As the illness is likely to be prolonged, the families are likely to be destitute by the time parent/s die.In most cases children are left without any inheritance and they may be forced to leave school because their fam ilies cannot afford school fees or uniforms (Wild, 2001:8-9).

Psychosocial needs
HIV and AIDS is associated with complex p sy ch o so cial problem s such as stigm atisation, rejection, fear o f the unknown, social isolation as well as impaired quality of life and the absence o f the motivation to make necessary lifestyle changes.These problems are not only felt by the suffering parent but by their children as well: just as the rights o f the children are inextricably linked to their parents, so are their sufferings and happiness linked to those o f the parents (John & Ndebbio, 2002:59).
AIDS orphans and pre-orphans have a need for relationship with relatives.Wild (2001:11) identified that children have a common reaction to the death of a parent and this re actio n ranges from hopelessness, loneliness, confusion, anxiety and fear o f being alone.The respondents in this study confirm ed W ild's findings and looked for their extended family's support.
In African culture the family is not a limited nuclear unit but extends to various other family members according to the needs arising among family members.
The extended family is one of the valued structures within the African family system (Munodawafa, 2002:7-8).If there is illness or death in the nuclear family the whole family is affected.In this study however the expectations of the children from the extended family were not met.All the participants felt that they were deserted by their families especially in the time o f crises.Some participants re p o rted that they m ade som e advancement to these kin groups but were rejected: "My aunts have changed.The time my father was alive, they used to be happy when we visited, because he used to help them a lot.But nowadays, they insult me, i f I come to their house.And I have stopped visiting them." Sliep, Poggenpoel and Gneimer (2001:63) support these findings and are o f the opinion th at even though relativ es form erly formed a valuable support systems in times of difficulty, the HIV and AIDS pandemic has changed this system.Ayieko (1998:15-17) found that there was a lack o f support with regard to relatives visiting the children affected by HIV and AIDS.In John and Ndebbio's study (2002: 61) it was asserted that once the diagnosis o f HIV and AIDS became known the social support of family was likely to be reduced.In this study the participants reported some degree of alienation which was similar in the current study.
T he p a rtic ip a n t's in tera ctio n w ith m em bers o f their com m unities was negative as well.When one is a member o f a community one aught to develop a sense o f belonging through interaction with other people.The community should satisfy the person's psychological need for social intercourse and friendship.The respondents in this study whose parents were known to be deceased or dying due to AIDS were ostracised by neighbours and re la tiv e s.C h ild ren in the neighbourhood were not allowed to play with any AIDS orphans and pre-orphans.The findings in this study support R aufu's (2002:9) findings that when parents are known to be dying o f HIV and AIDS, the affected children become o strac ise d by the n eig h b o u rs and relatives and at the same time children of the neighbourhood are not allowed to play with them.According to Raufu (2002:9) the reason for ostracism is based on the myth that AIDS will pass on to their children.
They say I too, have that disease she is suffering from.Sometimes even other children avoid me.If I start playing with them, they would walk away saying that I might infect them with my mother's disease." With this point o f view the potential caregivers in the community disappear and traditional ways o f coping diminish.Zerwekh (2000: 47-60) states that the em barrassm ent and hum iliation that parents with HIV and AIDS feel might be projected onto their children who then isolate themselves from the com m unity: "Ifeel bad and my mother also feels bad about her face, especially when people have started to dislike her and say that she has got AIDS " "Thepeople around here talk about my father.And I become hurt when they say he was suffering from such a disease." The findings in this study correlate with Ayieko's (1998: 17) conclusion, that in this era of the HIV and AIDS pandemic, children are no longer the collective responsibility o f communities, a legacy that has been historically associated with child rearing in Africa.According to H arber (1 9 9 9 :8 ) m o d ern izatio n , urbanization and poverty are factors re sp o n sib le for the w eak en in g o f traditional support system of African life.Based on the observations made by the re searc h er d uring the v isits to the communities where the respondents in the study reside, the factors as identified by Harber prevailed.
The study indicated that the relationship with teachers was compromised due to a lack o f u n derstanding from school teachers as well as rigid school policies.Children were suspended from school due to incomplete school uniforms and unpaid school fees.In some cases respondents had to walk long distances to school only to find to their amazement and disappointment for their effort they would find the school gate locked for latecomers.

"I don't have money fo r transport to school and i f I happen to arrive late, I will have to come back, because the school gates will be closed. " "In most cases la m being sent back from school, because I d o n ' t have school shoes"
Literature is not specific about teacher's lack o f understanding or rigid school policies but according to a report in the Sunday Times by Cullinan (2001;15) there are few teachers w ho do not send children back for unpaid school fees or incomplete uniforms.
However, these school policies do not conform to the South African School Act, N o .84o f 1996 (S outh A frican Government, 1996).According to this act no pupil can be denied attendance o f a public school.In spite o f this act the phenomenon o f suspending pupils from school w as d escrib ed by m any respondents in this study.Lack o f understanding and rigid school policies w ere prevalent in the five different schools th at w ere attended by the participants o f this study.Some o f the participant's claims accord with the comments made by World Bank and UNICEF (2002) about HIV and AIDS and the school attendance of affected children: "When there is illness or death in the household, the financial resources tend to be used to care for the sick or for funerals, thus reducing sources allocated for children's schooling.The outcome is eith er a delay in en ro lm en t or no enrolment at all.Attendance at school also declines, especially as the children have to work and care for sick parents.P erform ance suffers as a resu lt o f absenteeism and a lack o f parental care and support" (pp 24,25).
The need to belong and be loved was expressed by all the respondents.Eight o f the respondents indicated that they could not be with friends as they would love to be.According to the study done by Richter (2001:33) children affected or o rphan ed by HIV and A ID S find themselves separated from their friends due to increased workload, exhaustion, social isolation related to insecurity and stigmatisation, as it is often assumed that they too are infected with the disease.
"Sometimes other children avoid me.I f I start playing with them, they would walk away, saying that I will infect them with my mother s disease." The experience o f not being loved by a friend and not being affiliated to the group runs close to the feeling of being let down by the community.The psychosocial mechanisms that cause the community, friends or family to ignore or ostracize the orphan or pre-orphan are the same.
Literature is not quite specific about the need for love and belonging in children affected by HIV and AIDS.However it is normal for people to create conjunctive emotions o f love; wanting to be with other people.T herefore, effective satisfaction o f psychological needs, belonging, enjoyment and freedom, result in a sense o f control or becoming a fully functioning person (Corsini & Wedding, 1995:63,294).Commenting on this, Rotenberg and Hymel (1999:155-156) said that the inability to satisfy the need to belong, whether because o f personal or situational constraints is likely to result in personal difficulties such as negative conclusions about the self, others or both and this was the case in the study as some respondents said: " Every time there is a theft committed around our vicinity, I am always a suspect." "Some o f my schoolmates know that my mother is sick, and they say my mother is ill and not working.I fe e l bad when they talk about their parents.'' This statement is also indicative o f the lack o f self-worth in children affected by HIVandAIDS. Allport (1961) in Meyer, M oore and Viljoen (1997:420-421) indicates that the opinion o f others and one's own direct experience o f oneself forms the basis o f self-esteem.AIDS orphans and pre-orphans have a whole range o f problems and obstacles that contribute to bad self-esteem.They experience the negative feelings that the community, peers, teachers and family have towards them.They do not possess adequate clothing or attire that make them feel part o f the group and satisfy their need to belong: "I always envy my friends, because they have beautiful clothes and they look down at me and some o f them even say I cannot wear nicely like them.I always tell my grandmother that I too would like to look like a decent person." Pawlik and Rozenzweig (2000:269) stated that adolescents have a conception of what they would like to be -that is the ideal self-and that unfavourable selfevaluation m ay be associated with depression and other negative outcomes.
The need for counselling pertaining to the provision of factual knowledge as well as emotional support was identified.The findings revealed that respondents need counselling as they exhibited signs o f not being able to cope with the illness and death o f th eir p arent.G uilt, resen tm en t, ex h au stio n as w ell as disappointment were signs exhibited by the respondents.The responses o f the children indicated that they needed information about HIV and AIDS that they were not coping with the many burdens placed on their shoulders nor with the constant worrying about the ill parent and in cases o f deceased parents the ch ild re n had in co m p lete grieving processes and were grieving in isolation.
Lyons (1998:4) described how the fear of discrimination, rejection or abandonment by other families or community members had lead to some families keeping the knowledge of their HIV and AIDS a secret from the children.Participants in the study reflected on thejr negative feelings related to their suspicion regarding the parent's diagnosis, people's gossip as well as the actual physical state of their parents: "I d o n ' t like when people talk about my father and that disease they were talking about.It is not possible that my father had it " "My mother is not an ugly person, but since she became ill, she has changed.I fe e l bad and she also feels bad about it.Especially when people started to dislike her saying she has got AIDS.Most people here are saying she has got AIDS and this makes me feel bad.Sometimes I am very scared o f meeting people.I am scared, because when I am with other children, p e o p le fr o m our neighbourhood might say my mother has got AIDS, but I know my mother does not have that thing." The phenomenon o f keeping secrets from the children is also clarifies by Wild (2001:10) who says that HIV and AIDS is viewed by many people as punishment for an "immoral lifestyle" and is always view ed w ith an irra tio n a l fear o f contamination.That is why children may be lied to or not told, ultimately causing them to be unable to understand and accept their parent's' illness and death.As indicated by Smart (2000:13), Wekesa (2000:13) and Lyons (1998:4-5) adequate information will thus enable the children to m ake inform ed decisions about a c tiv ities th at w ould increase susceptibility to infection and prevent the vicious cycle o f HIV and AIDS.One respondent illu strated the need for information where fear of being infected was demonstrated: "I am scared that I might be infected too.... E specially, because she is coughing a lot and i f I think I am always close by or sitting next to her, and I might be infected.Whenever I pass by, people talk they say that my mother has such and sick illness.But even me too, I don't know i f H IV can infect one ju st like that; staying in the sam e house with my mother." The findings of this study as identified by UNAIDS (1999: 5) also indicated that children are burdened because they find themselves thrust in the role of mother, father or both -doing household chores, looking after siblings and caring for the ill or dying parent, experiencing stress that would exhaust even an adult.Added to this they live with the constant worry about the life o f their parent: '7 don't concentrate well in class.I am always thinking o f problems at home, as to how my mother is: Whether she is alive or not, i f I am going to fin d her admitted to hospital.I have a lot o f things going in my mind.Besides this I always have to be in hurry, fo r when I get home from school, I have to clean the house, cook, do my homework and go to the choir practices at church.Everything in the house has to be done by me." The findings o f this study confirmed that the illness and ultimate death o f a parent is a crises for any child and as Wild (2001:8) suggests this crisis is more complicated for an AIDS orphan as there is a set o f material and psychological stressors which often accompany the parent's illness and death, hence the griev in g p rocess becom es such a problem.Orphaned by AIDS the children are likely to grieve in isolation with damaging effects.Clark (1984:633-634) reported that grieving in isolation is ch a rac te rised by feelings o f guilt, d e te rio ra tio n o f health as w ell as psychosomatic conditions.The respondents indicated that they were not coping with the death of parents no matter how long the parent had been dead.
"I really miss her... even now when people talk about her: I miss her, even though she was doing nothing fo r us.I saw her when she died... I.. .1. ..I

Need for control
The need for control is an important aspect o f personality in which people hold the firm belief that they possess the p o ten tial to execute the kin d s o f behaviours that a given task demands.This "can do" cognition mirrors a sense o f control over one's environment.The control needs o f AIDS orphans and pre orphans were expressed as the need for independence and family unity.The respondent's need for independence was mainly expressed as a desire to earn money for themselves and their families.
The respondents tried to preserve family unity by guarding the secret o f their circumstances and trying to adapt to these circumstances as best they could: "Sometimes we would wait fo r people coming from town with a lot o f grocery.We would ask them i f we can help them carry the luggage from the bus stop to their homes and they would give us R10.  and Clements (2003:30-38) that as a way o f coping and adaptation during the process of grief, the surviving children/ adolescents place a significant value on the maintenance o f the family unit.

Discussion of findings
The findings o f this study confirm that the children affected by HIV and AIDS either as orphans or as pre-orphans are extremely vulnerable facing many and diverse problems that may have a lasting affect on their lives.This finding was in accordance with the statements made by The Joint United Nations Programme on HIV/AIDS, the United Nations Children's Fund, and the National Black Leadership on AIDS (1999:1-3).With the illness and d eath o f p aren ts the resp o n d en ts indicated that economic needs were the most prevalent, and these formed the backdrop for most physical needs.These needs were not isolated as Wild (2001: 13) also confirms; the economic and physical problems were being further co m p licated by the p sy ch o so cial problems.With these needs remaining unsatisfied, children are likely to be deprived o f opportunities to grow and develop successfully at the physical, emotional, social and intellectual level (Lyons, 1998:2).Wekesa (2000: 13) confirmed that AIDS drives households into poverty as a decline in household income occur when parents stop earning their income, health care expenses increase and funeral costs deplete all current and future reserves.Booysen et al. (2002:13) indicated that it has become a common strategy to use savings or borrow money for coping with illness thus driving the household deeper into poverty and leaving household funds totally depleted when parents die.
It is well known that the department of Social Welfare gives grants to people with terminal illness as well as to orphans, in clu d in g A ID S orphans (P olicy Guidelines for Youth and Health, 2001:21 -22).H ow ever as the resp o n d en ts reported, these grants are always spent on the parent's medical expenses and nothing is left for family needs.With regard to the o rp h a n 's grants, few children reported knowledge o f said grants and as for how the grants were spent, only the care givers could tell, while the needs o f the orphans were unsatisfied.Some orphans reported that they could not access these grants as they did not have a birth certificate.The reason for this was that parents had not always registered the birth of the children because they had lived in rural areas at the time.On the death of the parents no one was left to start the registration process.
Another factor precipitating poverty that was discovered during this study was that o f single-parenthood where the mother was the sole breadwinner and head o f the family.As the m other becomes ill and dies the responsibility moves to either grand-parents or children themselves with physical circumstances exacerbated.
Most o f the participants in the study indicated an absence o f the expected p h y sical and social support from extended families which has traditionally been part of the African culture.This was an expressed need and critical concern o f the affected AIDS orphans and pre-orphans.The reasons for this absence o f extended family structure are re p o rted ly to be found in the stigmatisation and ostracism of AIDS sufferers and their families, prevailing w estern isatio n and thereby loss o f traditional African culture and increase o f poor socio-economic conditions in urban areas (UNAIDS, 1999:5).
Adding to the problem was the fact that parents who were terminally ill did not seem to plan ahead for the care and guardianship o f their children.The parents o f participants in this study were well aware of the prognosis o f their illness and their reluctance to plan ahead may be attributed to the concern o f imposing 90 Curationis September 2007 a burden on potential guardians as well as reluctance to face their death (Wilfert, A ronson, Beck, Fleischm an, Kline, Mofenson et al., 1999:509-510).Gilbom, et al. (2001;13-15) indicated that parents o ften had the intention to m ake arran g em en ts for th eir c h ild re n 's guardianship but could not do it due to fear o f making known their HIV status.Furthermore the findings revealed that parents did not want to discuss (in the case o f orphans) or did not want to discuss (in the case o f pre-orphans) their illness with the children.Probably this was done to protect the children from the fear o f potential loss as well as from the stigma surrounding their illness.It is also probable that parents were embarrassed and unable to admit to the children how they had contracted AIDS.
An important finding of this study was that the children affected by HIV and AIDS have multiple problems related to their schooling.Physical problems such as lack of money for school fees, clothes, school requirements, and transport and school outings cause high absence from school.Emotional problems such as stigmatisation and ostracism by friends, family and the community, the stress of being alone and unloved, and of heading a household, taking care of siblings takes its toll in the inability to perform in school.School systems and teachers were often unsympathetic to the plight o f the children and persisted in applying rigid adherence to school regulations thereby suspending children for not having school uniforms or non-payment o f school fees.It was reported during the interview s that children rely on education for a better future but that their problem s were exacerbated by rigid school policies regarding school fees and uniforms.
The study revealed that the social isolation of children affected by HIV and AIDS is high.Children are rejected by friends, fam ily and the com m unity because of parents suffering from HIV and AIDS or having died from it.Social iso la tio n and re je ctio n is a m ain contributing factor to this scenario.Other factors that play a role are the lack of time these children have for socialisation since they have added h o usehold responsibilities as well as the fact that they may be isolating themselves from others because o f the shame and fear they feel for their parents' illness.The inability to cope with the illness and death of the parents revealed the need of the children for counselling.The fact that the mention o f the deceased parent's name triggered painful emotions was an indication that the grieving process had not been completed.Especially since the children admitted loneliness.These findings may be explained by the African belief system that it is inappropriate to mention or speak about the deceased.These findings reflected the findings of Van Epps, Opie and Goodwin (1997:30-31) in which youngsters were severely reprimanded for asking questions about the deceased.These findings are also confirmed by the researcher's knowledge o f the cultural orientation regarding death, grief and mourning within the African belief system.
The study indicated that the respondents showed a need for information on HIV and AIDS since they could not believe that their parents had died of this disease.Their denial was attributed to the fact that th eir p aren t did not confirm th eir suspicion as brought about by the gossip and the actual appearance of the parent.The issue of parents failing to tell their children about their HIV status was explored by Niebuhr, Hughes and Pollard (1994: 421 -425).Their findings revealed that this was related to the parents' fear of discrimination against the children and embarrassment of admitting to the children that their own behaviour had led to the HIV infection.Abrams (2 0 00:15-16) and H odgkinson and Stewart (1998:140-141) admit that the giving o f honest information, is vitally im p o rtan t and sets the agenda for recovery.
The fin din g s o f this study further indicated that the respondents expressed their willingness to be an independent fam ily unit, not to be separated but stru g g le together.
T his was in accordance with the findings of Vigil and Clements (2003:34)

Conclusion
The purpose of the study was to identify the needs of children affected by HIV and AIDS.The findings of the study confirm that the terminal illness and ultimate death of a parent because of HIV and AIDS placed surviving children in an extrem ely vulnerable position, with a myriad of problems.With the breadwinner ill or deceased, children found themselves facing problems in all aspects o f their lives.The needs expressed during the ten interviews encompassed needs at the physical level such as food and shelter, needs at the economic level and needs at the psychosocial level such as the need for loving and caring relationships, self esteem and information and counselling.The need for control as embedded in the need for independence and family unity was articulated as well.Based on the results it can be concluded that the purpose of the study has been achieved.
It is recommended that the services that render help to HIV and AIDS orphans and pre-orphans become aware o f their needs and provide support with the children as active participants in the system.
Many communities affected by HIV and AIDS are already disadvantaged and as the income o f the HIV parent is reduced due to loss o f earnings, because o f repeated sick leave and high medical costs the children are plunged into even d eeper econom ic c risis and high insecurity levels.

F
or the p u rp o se o f this study the population consisted o f children affected by HIV and AIDS.The sample in this study co n sisted o f 10 c h ild re n in Mangaung whose parent/s was/were ill or had died due to HIV and AIDS and had been or were currently under the Home Based Care Program of the Naledi Hospice.The children were o f different age, sex and cultural background.(See Table 00." "There are times when I think o f leaving school and search fo r work.I wish I could do something fo r my sisters." "We do not want people around to know that we are struggling... my m other w o u ld n 't like to see us begging fo r fo o d ... " These findings correlate with w hat Rotheram-Borus, Stein and Lin (2001:763) describe as coping skills intervention among children affected by HIV and AIDS whereby children adjust to the impact of their parent's illness and death by assuming adult-like roles.B esides show ing independence the respondents in the study seemed to have the need to build a family unit."la m worried as to how my brother and sisters are feeling and what is going on in their minds and how our upbringing is going to be like." " We want to grow up together.The three o f us together... " This was similar to what was said by Vigil

TABLE 3 .1: Demographic information of the sample (N=10)
Financial capital is money which is used as a medium of exchange to buy things.Physical capital relates to the acquisition o f knowledge such as in education or the owning of a pen or computer.Children who are affected by HIV and AIDS have a need for both o f these commodities.
eat, and I always go back to school." It is obvious that the lack o f nutrition in flu en ces re s p o n d e n ts' school performance since healthy nutrition is essential for energy, concentration, memory function and cognition.As could be expected the respondents reported Clothes do not only fulfil the need for comfort, warmth and protection but fulfil the psycho-social need for conformity to the group, recognition by others and building o f the self-esteem as well."At least I must have a pair o f certain clothes, so that I too can fe e l I am part o f and be recognized among my friends." "This house is not safe, because now and then people ju st break in and steal.Most people around here are not happy that children like us can have this kind o f furniture that my mother has leftfor us." anything, not even study fo r test or do my homework.We have to save the paraffin to warm w ater fo r bathing before going to school.'' Economic needs Economic needs include both financial capital as w ell as physical capital.