**1. Introduction**

158 Social and Psychological Aspects of HIV/AIDS and Their Ramifications

U.S. Bureau of Census (2000). State and County Quick Facts. 05.20.10, Available from

U.S. Department of Health and Human Services (2008). Closing The Health Gap. 07.22.10,

UNAIDS (1999). Resolution to create and support the partnership. International Partnership

UNAIDS (2008). Report on the global AIDS epidemic, 2008, 03.15.11, Available from

Vanable, A., Carey, P., Blair, C., & Littlewood, A. (2006). Impact of HIV-related stigma on

Weller, C. (1993). A meta-analysis of condom effectiveness in reducing sexually transmitted

Whetten, K., Leserman, J., Lowe, K., Stangl, D., Thielman, N., Swartz, M., Hanisch, L., & Van

WHO (2005). Effectiveness of drug dependence treatment in preventing HIV among

WHO/UNAIDS (2004). Coalition ARVS4IDU (2004, 15th July), Availability of ARV for

Wyatt, E., Myers, F., Williams, K., Kitchen, R., Loeb, T., Carmona, J., Wyatt, E., Chin, D.,

color? Implications for prevention and policy. *Am J Public Health*;92:660–5. Zablotska, B., Gray, H., Serwadda, D., Nalugoda, F., Kigozi, G., Sewankambo, N., Lutalo, T.,

acquisition: A longitudinal study in Rakai Uganda, *AIDS*, 20, 1191–1196.

Available from http://www.healthgap.omhrc.gov/hiv\_aids.htm

http://quickfacts.census.gov/qfd/states/37000.html

*Secretariat.* Annapolis, MD, January, 1999.

women. *AIDS and Behavior*; 10 (5):473-82.

injecting drug users. 02.11.11, Available from http://www.who.int/hiv/pub/idu/idupub/en/

HIV. *Soc. Sci. Med*. 36, pp. 1635–1644.

114:573-80.

dsepidemic/

2005.

meeting), Bangkok.

with human immunodeficiency virus infection. *American Journal of Medicine*

against HIV/AIDS in Africa. *Meeting of the UNAIDS Cosponsoring Agencies and* 

http://www.unaids.org/en/dataanalysis/epidemiology/2008reportontheglobalai

health behaviors and psychological adjustment among HIV-positive men and

Scoyoc, L. (2006). Prevalence of childhood sexual abuse and physical trauma in a southern HIV positive sample from the Deep South. *Am J Public Health*; 96:970 –3. Whetten, K., Reif, S. Napravnik, S., Swartz, N., Thielman, J. Eron, K., Lowe, & Toto, T.

(2005). Substance Abuse and Symptoms of Mental Illness Among HIVpositive Persons in the Southeast, *Southern Medical Journal*, Volume 98, Number 1, January

Injecting Drug Users: Key Facts—2004, XV International AIDS Conference (Satellite

Presley, N. (2002). Does a history of trauma contribute to HIV risk for women of

Wabwire- Mangen, F., & Wawer, M. (2006). Alcohol use before sex and HIV

Children may be affected by HIV/AIDS in numerous ways. When parents fall ill from HIVrelated infections, household income falls or is diverted to medical expenses, food insecurity increases and children may have to drop out of school to take on care responsibilities. When parents die, children are orphaned and, besides coping with grief at the loss of their mother or father, they face new care arrangements which may involve separation from siblings and migration to a new location. Most of the children who are orphaned and made vulnerable by HIV/AIDS live in sub-Saharan Africa. UNAIDS (2010, p. 180) estimates that 67.6 percent of people living with HIV globally are found in sub-Saharan Africa, but nearly 90 percent of all children orphaned by AIDS - 12.1 million children - live in sub-Saharan Africa (UNAIDS, 2010, p. 186).

Children may be infected with HIV through mother to child transmission (MTCT) during pregnancy, at birth or through breast milk. Such paediatric AIDS is increasingly being discovered and treated through programmes to prevent MTCT (PMTCT). Adolescents may be living with HIV: they may have been infected by MTCT and survived through childhood or they may have been infected through sexual intercourse, sadly often through being raped. UNICEF et al. (2010, p. 15) call this a "hidden epidemic" because many adolescents living with HIV do not know they are infected, they have never been tested and do not access treatment. UNICEF et al. (2010, p. 41) estimate that in 2009 92 percent of children (under the age of 15) who were living with HIV were in sub-Saharan Africa (nearly 2 million children) and 70 percent of these were found in East and southern Africa. In sub-Saharan Africa in 2009 only 26 percent of children deemed to require antiretroviral treatment (ART) were estimated to receive it (UNICEF, et al., 2010, p. 41).

Sub-Saharan Africa clearly bears a disproportionate burden when it comes to the effects of HIV/AIDS, particularly on children. This chapter gives an overview of the impact of HIV/AIDS on the well-being of affected and infected children, and reviews the responses at community, national and international levels.

#### **2. Children affected by HIV/AIDS**

Various terms have been used to describe children who have been affected by HIV/AIDS. Early studies on the social impact of HIV/AIDS used the concept of 'AIDS orphan' defined

Growing Up in the Era of AIDS:

to meet the needs (van Blerk & Ansell, 2007, p. 870).

negotiating assistance from NGOs or government agencies.

The Well-Being of Children Affected and Infected by HIV/AIDS in Sub-Saharan Africa 161

responsibility the children were more likely to have to migrate (and get used to living in a new place with new neighbours and friends) and they were more likely to suffer physical and psychosocial abuse (M. Daniel, 2005). Van Blerk & Ansell (2007) analyse the experiences of children moving to new homes in terms of the intergenerational contract. Parents invest in their children's education in the expectation that their children will care for them when they are no longer able to work. When HIV/AIDS removes the productive adults from the contract, other productive adults from the extended family have to step in and take on the responsibilities; the contract breaks down completely where the extended family is unable

Orphaned children, in some cases, have no adult who is able to care for them or the adult caregiver is not able to provide adequate care and they live without an adult. Child-headed households (CHHs) may be defined as households headed by a person who is under 18 years of age (Hosegood et al., 2007, p. 331) and Luzze & Ssedyabule (2004) add that it should be recognised by the community as an independent household. Whether or not the AIDS epidemic is contributing to the phenomenon is contested in the literature with some contending that there is an increase in CHHs as a result of parental death and parallel impact on extended family (Evans, 2010; Kipp, Satzinger, Alibhai, & Rubaale, 2010; Luzze, 2002; Luzze & Ssedyabule, 2004) while other authors assert that there is no evidence of an increase in the incidence of CHHs (Hosegood, 2008; Hosegood, et al., 2007; Meintjes, Hall, Marera, & Boulle, 2010; Monasch & Boerma, 2004). Hosegood et al. (2008) point out that it is quantitative studies based on demographic surveys and census material that show low and unchanging incidence while qualitative studies focussed on CHHs find plenty of evidence of their existence. Luzze & Ssedyabule (2004) in a qualitative study of 969 CHHs in one district in Uganda, found that orphans living in CHHs are poorer than other orphans, have lower school attendance and poorer access to social services. Orphans who care for their siblings are no longer classed as children when they turn 18, even though no other circumstances have changed. Evans (2010) notes that rigorous application of age definitions does little to support young caregivers in need; she uses the more inclusive term "siblingheaded households" and describes how they often play down their 'adult' roles when

Institutional care is another alternative for orphans when the extended family is unable to meet their needs after the death of their parents. International organisations like UNICEF and UNAIDS, and western researchers view institutional care and orphanages as a last resort and the worst possible alternative. Sherr et al. (2008), for example, state that institutionalised children have poor outcomes and van Blerk &Ansell (2007) mention the inability of orphanages to meet the children's emotional (and sometimes physical) needs. Tolfree (2003) contends that the cost per child of providing institutional care is much greater than community care. In the "Framework for the protection, care and support of OVC living in a world with HIV and AIDS" which was the outcome of the first Global Partners' Forum convened by UNICEF in 2003, five key strategies are outlined (UNICEF, et al., 2004, p. 5). These strategies focus entirely on the family and community, institutions are not even mentioned. More recently the Joint Learning Initiative on Children and HIV/AIDS (JLICA) which concluded its work in 2009, based its learning groups largely on the "Framework" strategies (JLICA, 2011). Publications reflect the lack of interest in institutions, for example, when considering "evidence for changes in children's living and care arrangements" institutions are not even mentioned (Hosegood, 2008, p. 40). However, another JLICA report by Wakhweya et al. (2008, p. 19) describes the difficulty in finding literature on 'family

as a child below the age of 18 who has lost one or both parents to HIV/AIDS. In 2004, UNICEF et al. (2004, pp. 3-4) commented on the fact that there are many ways in which HIV/AIDS can make children vulnerable, for example, children whose parents were ill, but had not yet died, were already vulnerable; hence the term 'orphans and vulnerable children' (OVC) was preferred (Sherr et al., 2008; UNICEF, et al., 2004). However, AIDS is not the only cause of orphaning so the concept of OVC included children orphaned by other causes. Labelling as orphans children who have lost one parent and continue to live with the surviving parent equates their vulnerability with that of double orphans whose lived experience may be very different. Meintjies & Giese (2006) are highly critical of the focus, particularly by international agencies such as UNICEF, on the term 'orphan' when it is used without clear specification of age and the details of which parent(s) died. The term 'children affected by HIV/AIDS' includes children orphaned by AIDS, children who are vulnerable because their parents are ill with HIV/AIDS-related infections or who experience HIVrelated poverty, food insecurity or psychosocial challenges. It excludes children orphaned by causes other than HIV/AIDS.

#### **2.1 Caregiving situation**

Many children whose parents are HIV positive experience the prolonged illness and eventual death of their parents from AIDS-related infections. Children often take on significant care responsibilities such as preparing food, cleaning, other household chores as well as providing physical and moral support for the ill parent (Bauman et al., 2006). Skovdal and colleagues (2009, 2010) have studied the impact on children's well-being when they care for sick parents and caregivers. Prolonged illness leads to a reduction in household income and food production, depletion of savings due to expenditure on health services (van Blerk & Ansell, 2007) and children are frequently obliged to try and earn some cash and produce food in addition to taking care of their sick parents (Skovdal, 2010; Skovdal & Ogutu, 2009; Skovdal et al., 2009) . When children affected by HIV/AIDS take on productive and reproductive tasks, this often involves dropping out of school. The roll-out of antiretroviral treatment (ART) in the past decade has significantly reduced death from AIDS (Mwagomba et al., 2010; Reniers et al., 2009), but as there is not yet full coverage for all those who need ART, some children continue to experience parental illness and death.

In many parts of Africa it is customary for children to stay for some time with adults other than their biological parents (usually members of the extended family), for example a child from a rural area might live with a relative in an urban area to access a level of schooling unavailable in the rural area. Such 'voluntary' fostering was seen as mutually beneficial: the child would get an education and the foster caregiver would receive agricultural products from the rural area and help with household chores (Madhavan, 2004). AIDS has introduced 'crisis' fostering where adult relatives feel obliged to take on children whose parents have died; such fostering lacks the element of reciprocity and is instead "a normative social obligation" (Goody, 1982, cited in Madhavan, 2004, p. 1444). While many children receive good care from their new caregivers, others may experience varying degrees of injustice and abuse. Several studies document how orphaned children may have to do a disproportionate amount of household chores, and may receive less food and clothing than the children of their new caregiver (M. Daniel, 2005; Madhavan, 2004; van Blerk & Ansell, 2007).

The nature of the kin relationship often affects the experience of the child. A study in Botswana found that when the new caregiver was the maternal grandmother, there was greater stability for the children who had lost parents, while when an aunt or uncle took

as a child below the age of 18 who has lost one or both parents to HIV/AIDS. In 2004, UNICEF et al. (2004, pp. 3-4) commented on the fact that there are many ways in which HIV/AIDS can make children vulnerable, for example, children whose parents were ill, but had not yet died, were already vulnerable; hence the term 'orphans and vulnerable children' (OVC) was preferred (Sherr et al., 2008; UNICEF, et al., 2004). However, AIDS is not the only cause of orphaning so the concept of OVC included children orphaned by other causes. Labelling as orphans children who have lost one parent and continue to live with the surviving parent equates their vulnerability with that of double orphans whose lived experience may be very different. Meintjies & Giese (2006) are highly critical of the focus, particularly by international agencies such as UNICEF, on the term 'orphan' when it is used without clear specification of age and the details of which parent(s) died. The term 'children affected by HIV/AIDS' includes children orphaned by AIDS, children who are vulnerable because their parents are ill with HIV/AIDS-related infections or who experience HIVrelated poverty, food insecurity or psychosocial challenges. It excludes children orphaned

Many children whose parents are HIV positive experience the prolonged illness and eventual death of their parents from AIDS-related infections. Children often take on significant care responsibilities such as preparing food, cleaning, other household chores as well as providing physical and moral support for the ill parent (Bauman et al., 2006). Skovdal and colleagues (2009, 2010) have studied the impact on children's well-being when they care for sick parents and caregivers. Prolonged illness leads to a reduction in household income and food production, depletion of savings due to expenditure on health services (van Blerk & Ansell, 2007) and children are frequently obliged to try and earn some cash and produce food in addition to taking care of their sick parents (Skovdal, 2010; Skovdal & Ogutu, 2009; Skovdal et al., 2009) . When children affected by HIV/AIDS take on productive and reproductive tasks, this often involves dropping out of school. The roll-out of antiretroviral treatment (ART) in the past decade has significantly reduced death from AIDS (Mwagomba et al., 2010; Reniers et al., 2009), but as there is not yet full coverage for all those

who need ART, some children continue to experience parental illness and death.

their new caregiver (M. Daniel, 2005; Madhavan, 2004; van Blerk & Ansell, 2007).

The nature of the kin relationship often affects the experience of the child. A study in Botswana found that when the new caregiver was the maternal grandmother, there was greater stability for the children who had lost parents, while when an aunt or uncle took

In many parts of Africa it is customary for children to stay for some time with adults other than their biological parents (usually members of the extended family), for example a child from a rural area might live with a relative in an urban area to access a level of schooling unavailable in the rural area. Such 'voluntary' fostering was seen as mutually beneficial: the child would get an education and the foster caregiver would receive agricultural products from the rural area and help with household chores (Madhavan, 2004). AIDS has introduced 'crisis' fostering where adult relatives feel obliged to take on children whose parents have died; such fostering lacks the element of reciprocity and is instead "a normative social obligation" (Goody, 1982, cited in Madhavan, 2004, p. 1444). While many children receive good care from their new caregivers, others may experience varying degrees of injustice and abuse. Several studies document how orphaned children may have to do a disproportionate amount of household chores, and may receive less food and clothing than the children of

by causes other than HIV/AIDS.

**2.1 Caregiving situation** 

responsibility the children were more likely to have to migrate (and get used to living in a new place with new neighbours and friends) and they were more likely to suffer physical and psychosocial abuse (M. Daniel, 2005). Van Blerk & Ansell (2007) analyse the experiences of children moving to new homes in terms of the intergenerational contract. Parents invest in their children's education in the expectation that their children will care for them when they are no longer able to work. When HIV/AIDS removes the productive adults from the contract, other productive adults from the extended family have to step in and take on the responsibilities; the contract breaks down completely where the extended family is unable to meet the needs (van Blerk & Ansell, 2007, p. 870).

Orphaned children, in some cases, have no adult who is able to care for them or the adult caregiver is not able to provide adequate care and they live without an adult. Child-headed households (CHHs) may be defined as households headed by a person who is under 18 years of age (Hosegood et al., 2007, p. 331) and Luzze & Ssedyabule (2004) add that it should be recognised by the community as an independent household. Whether or not the AIDS epidemic is contributing to the phenomenon is contested in the literature with some contending that there is an increase in CHHs as a result of parental death and parallel impact on extended family (Evans, 2010; Kipp, Satzinger, Alibhai, & Rubaale, 2010; Luzze, 2002; Luzze & Ssedyabule, 2004) while other authors assert that there is no evidence of an increase in the incidence of CHHs (Hosegood, 2008; Hosegood, et al., 2007; Meintjes, Hall, Marera, & Boulle, 2010; Monasch & Boerma, 2004). Hosegood et al. (2008) point out that it is quantitative studies based on demographic surveys and census material that show low and unchanging incidence while qualitative studies focussed on CHHs find plenty of evidence of their existence. Luzze & Ssedyabule (2004) in a qualitative study of 969 CHHs in one district in Uganda, found that orphans living in CHHs are poorer than other orphans, have lower school attendance and poorer access to social services. Orphans who care for their siblings are no longer classed as children when they turn 18, even though no other circumstances have changed. Evans (2010) notes that rigorous application of age definitions does little to support young caregivers in need; she uses the more inclusive term "siblingheaded households" and describes how they often play down their 'adult' roles when negotiating assistance from NGOs or government agencies.

Institutional care is another alternative for orphans when the extended family is unable to meet their needs after the death of their parents. International organisations like UNICEF and UNAIDS, and western researchers view institutional care and orphanages as a last resort and the worst possible alternative. Sherr et al. (2008), for example, state that institutionalised children have poor outcomes and van Blerk &Ansell (2007) mention the inability of orphanages to meet the children's emotional (and sometimes physical) needs. Tolfree (2003) contends that the cost per child of providing institutional care is much greater than community care. In the "Framework for the protection, care and support of OVC living in a world with HIV and AIDS" which was the outcome of the first Global Partners' Forum convened by UNICEF in 2003, five key strategies are outlined (UNICEF, et al., 2004, p. 5). These strategies focus entirely on the family and community, institutions are not even mentioned. More recently the Joint Learning Initiative on Children and HIV/AIDS (JLICA) which concluded its work in 2009, based its learning groups largely on the "Framework" strategies (JLICA, 2011). Publications reflect the lack of interest in institutions, for example, when considering "evidence for changes in children's living and care arrangements" institutions are not even mentioned (Hosegood, 2008, p. 40). However, another JLICA report by Wakhweya et al. (2008, p. 19) describes the difficulty in finding literature on 'family

Growing Up in the Era of AIDS:

**2.2.2 Social protection** 

**2.3 Psychosocial well-being** 

Harms et al., 2009).

being given free access to health services (IATT, 2008).

implemented pilot projects targeting the poorest (IATT, 2008).

The Well-Being of Children Affected and Infected by HIV/AIDS in Sub-Saharan Africa 163

HIV/AIDS has had a direct impact on child mortality rates with a rise in infant and under five deaths across sub-Saharan Africa (Miller, 2007) The health of children affected by HIV/AIDS may be impacted in a number of ways. Children living with an ill parent will be more exposed to TB and other opportunistic infections associated with AIDS, orphaned children are more likely to suffer malnutrition and stunting and to have poorer access to health services (Giese, 2002; Miller, 2007). While Miller et al. (2007, p. 2482) found that "orphan status is a critical predictor of poor health", Kidman et al. (2010) - who examine the impact of AIDS in the family and community on child health in Malawi - found that for a range of physical health indicators orphaned children were no worse off than non-orphaned children but children living with ill parents were significantly more likely to suffer serious morbidity. In contrast, in a study in Zimbabwe, Watts et al. (2007) found that OVC were much more likely to suffer malnutrition and ill health than non-orphans and the difference could not be explained by differences in poverty. In the last five years or so, as a result of the introduction of NPAs (see section 2.2.2 below) the most vulnerable children are increasingly

Social protection is "an agenda primarily for reducing vulnerability and risk of low-income households with regard to basic consumption and services" (Sabates Wheeler et al. 2009, p. 109) through 'safety nets' such as food grants or income transfers. In 2001, a year after the UN Millennium Declaration, 50 countries signed the UN General Assembly Special Session (UNGASS) *Declaration of Commitment on HIV/AIDS* agreeing to establish plans for OVC. In 2004, as mentioned above, UNICEF and the Global Partners' Forum established the "Framework for the protection, care and support of OVC living in a world with HIV and AIDS". The five key strategies outlined in the "Framework" form the foundation of the response to children affected by HIV/AIDS which underlie the National Plans of Action (NPAs) (Engle, 2008; Foster, 2008). On the initiative of USAID, UNICEF and UNAIDS, 17 high prevalence countries participated in Rapid Assessment Analysis and Action Planning (RAAAP) followed by NPAs to address the needs of children for basic services. While the exercise raised awareness of children's needs, it has been criticised as a donor-driven, 'emergency' exercise that has not necessarily been integrated into national planning (Engle, 2008). Some of the middle income countries in Southern Africa have social protection systems in place. South Africa for example, has cash transfers for families who care for orphans (IATT, 2008) as well as cash pensions for the elderly who are frequently caregivers to orphans. The Botswana Government provides monthly "food basket" to all registered orphans which often provides food for the whole household where the orphan is staying (M. Daniel, 2005). However, many sub-Saharan African countries are too poor to provide transfers in cash or kind, but since the establishment of NPAs some countries have

Children whose parents are very ill and children without parents do not suffer only physically, for example, from lack of basic needs, but they also experience grief at the loss of their parents, and may also have to face stigma and discrimination because of their parents HIV status. Recently the literature has started to explore the psychological impact on HIV/AIDS affected children (see for example Cluver et al., 2007; Cluver & Garner, 2007;

centred' care and they consider this might attributed to 'family' being a Western concept while the extended family or community is more the more usual focus in Africa. Whetten et al. (2009), in a study comparing institutional and community care of orphans and abandoned children in five countries (Ethiopia, Kenya, Tanzania, India & Cambodia) found that children in institutions were no worse off than those in the community in terms of health, emotional and cognitive functioning. They also found that "Many institutions grew out of the community to meet the need of caring for the new wave of orphans and are part of the community in a way that institutions in other regions […] are not" (Whetten, et al., 2009, p. 9). In very poor communities extended family caregivers may not be able to provide adequate material care and orphans may be better off in institutions (Whetten, et al., 2009). A study in Botswana of a more traditional residential institution found that the children had access to increased resources such as "food security, decent shelter and uninterrupted education" although they felt disconnected to siblings, family and community (Morantz & Heymann, 2010, p. 14). Given the size and growth of the orphan challenge and the indications that the extended family is under stress, institutions should at least be considered; however residential care in Africa is an under-researched area.

#### **2.2 Material well-being**

Sickness reduces income earning capacity and ability to produce food leading to a fall in income and an increase in food insecurity. Once parents die, orphans are more likely than non-orphans to lack basic material needs, especially food security. This results in OVC being more likely to be malnourished than non-orphans (Watts et al., 2007).

Households caring for orphans have to spread resources between more people and may therefore experience lower levels of nutrition and health care and a lack of basic needs. A study in Botswana found that even where adults in the household were working, impoverishment increased when orphans were included in a household (Miller et al. 2006) and caregivers had to take unpaid leave from work to care for sick orphans (Heymann et al. 2007).

#### **2.2.1 Access to essential services**

Some studies have reported the unequivocal impact of orphanhood on education. Children whose parents were ill were more likely to experience increased absenteeism as they were needed at home for care duties, household chores and food production; as poverty increased, school fees could no longer be afforded and children were forced to drop out; the psychosocial impact of parental illness and death also had an impact on school performance often leading to failure, repetition and drop out (Badcock-Walters, 2002; Bicego et al. 2003; Mishra et al., 2007) . Other studies, however, have had ambivalent results; for example, Bennell (2005) found that there were minimal differences between enrolment rates of orphans and non-orphans, and that there was no correlation between differences in enrolment rates and HIV prevalence. This may be attributed to the introduction of free universal primary education as a result of the Millennium Goals campaign and also targeted aid to orphan households (Bennell, 2005, pp. 480-481). Birdthistle et al. (2009) found little difference between orphans and non-orphans in reasons for drop-out – financial reasons were the main cause for all, irrespective of status – but double orphans were found to have significantly greater absenteeism and lower attainment than non-orphans. However, they found that orphans face a disproportionate risk of acquiring sexual infections like HIV and herpes (Birdthistle, et al., 2009).

HIV/AIDS has had a direct impact on child mortality rates with a rise in infant and under five deaths across sub-Saharan Africa (Miller, 2007) The health of children affected by HIV/AIDS may be impacted in a number of ways. Children living with an ill parent will be more exposed to TB and other opportunistic infections associated with AIDS, orphaned children are more likely to suffer malnutrition and stunting and to have poorer access to health services (Giese, 2002; Miller, 2007). While Miller et al. (2007, p. 2482) found that "orphan status is a critical predictor of poor health", Kidman et al. (2010) - who examine the impact of AIDS in the family and community on child health in Malawi - found that for a range of physical health indicators orphaned children were no worse off than non-orphaned children but children living with ill parents were significantly more likely to suffer serious morbidity. In contrast, in a study in Zimbabwe, Watts et al. (2007) found that OVC were much more likely to suffer malnutrition and ill health than non-orphans and the difference could not be explained by differences in poverty. In the last five years or so, as a result of the introduction of NPAs (see section 2.2.2 below) the most vulnerable children are increasingly being given free access to health services (IATT, 2008).

#### **2.2.2 Social protection**

162 Social and Psychological Aspects of HIV/AIDS and Their Ramifications

centred' care and they consider this might attributed to 'family' being a Western concept while the extended family or community is more the more usual focus in Africa. Whetten et al. (2009), in a study comparing institutional and community care of orphans and abandoned children in five countries (Ethiopia, Kenya, Tanzania, India & Cambodia) found that children in institutions were no worse off than those in the community in terms of health, emotional and cognitive functioning. They also found that "Many institutions grew out of the community to meet the need of caring for the new wave of orphans and are part of the community in a way that institutions in other regions […] are not" (Whetten, et al., 2009, p. 9). In very poor communities extended family caregivers may not be able to provide adequate material care and orphans may be better off in institutions (Whetten, et al., 2009). A study in Botswana of a more traditional residential institution found that the children had access to increased resources such as "food security, decent shelter and uninterrupted education" although they felt disconnected to siblings, family and community (Morantz & Heymann, 2010, p. 14). Given the size and growth of the orphan challenge and the indications that the extended family is under stress, institutions should at least be

Sickness reduces income earning capacity and ability to produce food leading to a fall in income and an increase in food insecurity. Once parents die, orphans are more likely than non-orphans to lack basic material needs, especially food security. This results in OVC being

Households caring for orphans have to spread resources between more people and may therefore experience lower levels of nutrition and health care and a lack of basic needs. A study in Botswana found that even where adults in the household were working, impoverishment increased when orphans were included in a household (Miller et al. 2006) and caregivers had to take unpaid leave from work to care for sick orphans (Heymann et al.

Some studies have reported the unequivocal impact of orphanhood on education. Children whose parents were ill were more likely to experience increased absenteeism as they were needed at home for care duties, household chores and food production; as poverty increased, school fees could no longer be afforded and children were forced to drop out; the psychosocial impact of parental illness and death also had an impact on school performance often leading to failure, repetition and drop out (Badcock-Walters, 2002; Bicego et al. 2003; Mishra et al., 2007) . Other studies, however, have had ambivalent results; for example, Bennell (2005) found that there were minimal differences between enrolment rates of orphans and non-orphans, and that there was no correlation between differences in enrolment rates and HIV prevalence. This may be attributed to the introduction of free universal primary education as a result of the Millennium Goals campaign and also targeted aid to orphan households (Bennell, 2005, pp. 480-481). Birdthistle et al. (2009) found little difference between orphans and non-orphans in reasons for drop-out – financial reasons were the main cause for all, irrespective of status – but double orphans were found to have significantly greater absenteeism and lower attainment than non-orphans. However, they found that orphans face a disproportionate risk of acquiring sexual infections like HIV and

considered; however residential care in Africa is an under-researched area.

more likely to be malnourished than non-orphans (Watts et al., 2007).

**2.2 Material well-being** 

**2.2.1 Access to essential services** 

herpes (Birdthistle, et al., 2009).

2007).

Social protection is "an agenda primarily for reducing vulnerability and risk of low-income households with regard to basic consumption and services" (Sabates Wheeler et al. 2009, p. 109) through 'safety nets' such as food grants or income transfers. In 2001, a year after the UN Millennium Declaration, 50 countries signed the UN General Assembly Special Session (UNGASS) *Declaration of Commitment on HIV/AIDS* agreeing to establish plans for OVC. In 2004, as mentioned above, UNICEF and the Global Partners' Forum established the "Framework for the protection, care and support of OVC living in a world with HIV and AIDS". The five key strategies outlined in the "Framework" form the foundation of the response to children affected by HIV/AIDS which underlie the National Plans of Action (NPAs) (Engle, 2008; Foster, 2008). On the initiative of USAID, UNICEF and UNAIDS, 17 high prevalence countries participated in Rapid Assessment Analysis and Action Planning (RAAAP) followed by NPAs to address the needs of children for basic services. While the exercise raised awareness of children's needs, it has been criticised as a donor-driven, 'emergency' exercise that has not necessarily been integrated into national planning (Engle, 2008). Some of the middle income countries in Southern Africa have social protection systems in place. South Africa for example, has cash transfers for families who care for orphans (IATT, 2008) as well as cash pensions for the elderly who are frequently caregivers to orphans. The Botswana Government provides monthly "food basket" to all registered orphans which often provides food for the whole household where the orphan is staying (M. Daniel, 2005). However, many sub-Saharan African countries are too poor to provide transfers in cash or kind, but since the establishment of NPAs some countries have implemented pilot projects targeting the poorest (IATT, 2008).

#### **2.3 Psychosocial well-being**

Children whose parents are very ill and children without parents do not suffer only physically, for example, from lack of basic needs, but they also experience grief at the loss of their parents, and may also have to face stigma and discrimination because of their parents HIV status. Recently the literature has started to explore the psychological impact on HIV/AIDS affected children (see for example Cluver et al., 2007; Cluver & Garner, 2007; Harms et al., 2009).

Growing Up in the Era of AIDS:

denying access to services (Dlamini et al., 2007).

stigmatising them through name-calling.

responses to AIDS-affected children (Foster, 2008).

**2.4 Responses to OVC** 

anarchism".

The Well-Being of Children Affected and Infected by HIV/AIDS in Sub-Saharan Africa 165

disease (Ogden & Nyblade, 2005). Stigma and discrimination may manifest as verbal and physical abuse, neglect and isolation, for example, name-calling, separating utensils and

HIV/AIDS affected children experience stigma and discrimination related to HIV/AIDSrelated illness and death of their parents. Stigma may exacerbate the effects of bereavement and hinder psychosocial adjustment (Deacon & Stephney, 2007; Makame & Grantham-Mcgregor, 2002). Within households, orphan children may be treated differently to the biological children of the caregiver, made to do more household chores, given less food, and punished more harshly (M. Daniel, 2005; Deacon & Stephney, 2007). They may be denied access to school if they lack full uniform and may experience stigmatising and discriminatory behaviour from other pupils and even from teachers (M. Daniel, 2005; Deacon & Stephney, 2007). Deacon & Stephney (2007, p. 34) also report that stigma affects children's access to health care, for example "health care workers refusing care, or providing inferior care, to children who were HIV positive". In a study on the stigmatisation of AIDSaffected children by other children, Campbell et al. (2010, p. 981) found that "children were often afraid to play with AIDS affected children […] bullied and ostracised" them as well as

Local communities have responded to the needs of orphans in a range of ways – they may produce food for orphans or provide day care for infants so that older siblings can continue in school (M. Daniel, 2008). Responses are small-scale and disjointed, they often find it difficult to get funding beyond voluntary labour and have little influence on national-level

National governments have established National AIDS co-ordinating bodies under the 'Three Ones' agreement (one action framework, one AIDS co-ordinating body, and one country-level monitoring and evaluation system) (Foster, 2008, p. 23). Often programmes and policies to address children are only a small part of these larger programmes. Frequently the response is nominal and inadequate and it is left up to civil society to run programmes and the international institutions such as UNICEF to monitor and co-ordinate. However, civil society is often more aligned with external donors (such as the Global Fund and PEPFAR) than national structures, and international responses are often not in line with national strategies (Foster, 2008, pp. 24-25). Foster (2008, p. 23) terms this "alignment

Wallis & Dukay (2009, p. 171) have described the evolution in the response to massorphaning as a move from emergency relief aid towards structural integration. Most externally funded programmes targeting orphans tend to provide material aid in the form of uniforms, school fees and food; but very few programmes offer grief counselling or psychosocial support. Material relief aid frequently comes with unintended side-effects like the undermining of social cohesion in the recipient communities, corruption and the exclusion of the most vulnerable (M. Daniel, 2008). Psychosocial support tends to be smallscale and NGO-based, but some regional scale programmes do exist. For example, an organisation called the Regional Psychosocial Support Initiative (REPSSI) is favoured by UNICEF and donors like the Swedish International Development Agency (SIDA). It works with local partners and has emerged as a leading provider of psychosocial services in 13 countries in southern and eastern Africa (Matikanya, James, & Maksud, 2006, p. 7). The "Memory Book" programme, originally developed in the UK to give psychosocial help to

#### **2.3.1 Cultural silence and children's grief**

Cultural silence refers to the cultural taboos against speaking to children about death or about sex (Daniel, 2005; Mdleleni-Bookholane et al., 2004). HIV/AIDS, which in SSA is overwhelmingly spread through heterosexual transmission and which has had a huge impact on mortality rates, has inevitably put a spotlight on these sensitive issues. Many children in southern African countries have been prevented from attending the funerals of their parents, even if they wish to participate. There is a cultural understanding that death is too difficult and traumatic for children to cope with (Mdleleni-Bookholane, et al., 2004; Ndudani, 1998; Rantao, 2002). At an explicit level, culture is frequently used as an explanation for silence: "In our culture we do not talk to children about death, they are too young to understand" (Daniel, 2005, p. 28). Frequently children are not given an explanation about death and if they ask questions about their parents' death they sometimes do not receive answers or the reply does not help them understand the permanence of death, for example they might be told, "She has gone on a journey". Sometimes they are told they will understand when they are older (Daniel, 2005). In East Africa there is also cultural silence, but a different reason is given for not explaining death to children: it is believed that children do not understand and will not be affected by bereavement. Sengendo & Nambi (1997), in a study from Uganda, describe a cultural belief that children do not have emotional problems, while Snipstad et al. (2005, p. 191) in a study from Tanzania, report that adults believe children "have not got the brain yet" to comprehend death. Such beliefs limit children's opportunity to talk about their bereavement and deal with their grief.

Such cultural practices seek to protect children from the "pollution" of death (A. Richter & Müller, 2005, p. 1006) but they may also effectively marginalise "them from the process of grieving" (van der Heijden & Swartz, 2010, p. 45). Van der Heijden & Swartz (2010) stress that it is adults who impose this silence on children, adults reinforce cultural practices that compel children to silence concerning their grief. Cultural silence results in psychosocial problems for bereaved children. Children do understand that something is wrong and they worry about all sorts issues related to HIV/AIDS; such anxieties may hinder adaptive behaviour and the ability to solve problems (Snipstad, et al., 2005). Children also describe ruminating, "thinking too much", about a parent's death and how this can have a negative impact on their ability to concentrate in school with consequences for their attainment level (M. Daniel, 2005).

Only a very few programmes of psychosocial support exist which help children cope with grief and these will be discussed in section 2.4 below.

Another factor that reinforces cultural silence and blocks the processing of grief is AIDSrelated stigma (van der Heijden & Swartz, 2010).

#### **2.3.2 Stigma**

Goffman (1963, p. 3) defines stigma as "an attribute that is deeply discrediting" and he continues "but it should be seen that the language of relationships, not attributes, is really needed." Frequently only the first part of this definition is quoted and Parker & Aggleton (2003, p. 14) note that this results in "highly individualised analyses" that focus on difference and negative attributes rather than exploring how stigma "devalues relationships". Stigma reinforces existing relations of power and control and perpetuates inequities (Parker & Aggleton, 2003). HIV/AIDS-related stigma is often linked to "immoral" (as judged by the dominant group) behaviour (sex and drug-use) and frequently leads to discrimination (Nyblade et al., 2003). Stigma can also be a reaction to fear of an incurable disease (Ogden & Nyblade, 2005). Stigma and discrimination may manifest as verbal and physical abuse, neglect and isolation, for example, name-calling, separating utensils and denying access to services (Dlamini et al., 2007).

HIV/AIDS affected children experience stigma and discrimination related to HIV/AIDSrelated illness and death of their parents. Stigma may exacerbate the effects of bereavement and hinder psychosocial adjustment (Deacon & Stephney, 2007; Makame & Grantham-Mcgregor, 2002). Within households, orphan children may be treated differently to the biological children of the caregiver, made to do more household chores, given less food, and punished more harshly (M. Daniel, 2005; Deacon & Stephney, 2007). They may be denied access to school if they lack full uniform and may experience stigmatising and discriminatory behaviour from other pupils and even from teachers (M. Daniel, 2005; Deacon & Stephney, 2007). Deacon & Stephney (2007, p. 34) also report that stigma affects children's access to health care, for example "health care workers refusing care, or providing inferior care, to children who were HIV positive". In a study on the stigmatisation of AIDSaffected children by other children, Campbell et al. (2010, p. 981) found that "children were often afraid to play with AIDS affected children […] bullied and ostracised" them as well as stigmatising them through name-calling.
