**2.4 Responses to OVC**

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

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

Only a very few programmes of psychosocial support exist which help children cope with

Another factor that reinforces cultural silence and blocks the processing of grief is AIDS-

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

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

(M. Daniel, 2005).

**2.3.2 Stigma** 

grief and these will be discussed in section 2.4 below.

related stigma (van der Heijden & Swartz, 2010).

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

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 anarchism".

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

Growing Up in the Era of AIDS:

appropriate counselling and psychosocial support.

**3.2 Psychosocial well-being: Secrecy and stigma** 

respond positively (L. Richter, 2002).

The Well-Being of Children Affected and Infected by HIV/AIDS in Sub-Saharan Africa 167

adhere to their treatment (Brown, et al., 2000; Lesch et al., 2007; Vaz et al., 2008). Disclosure in a way that is appropriate to the child's cognitive development has been found to improve

Access to ART most frequently occurs through NGOs or FBOs rather than through government provided services. In such organisations the children are more likely to receive

The psychosocial experiences of children affected by AIDS have been explored in several studies (Cluver & Gardner, 2007b; Fjermestad et al., 2008; Foster, 2002; Skovdal, 2009), but little research has been done on the psychosocial aspects of the lives of children infected by HIV/AIDS. Many HIV positive children will experience the sickness and, in some cases, the death of their mother and/or their father. Multiple losses may affect the child psychologically, particularly if there is no one to support them in their bereavement (Rao, et al., 2007) or to answer their questions. Secrecy and cultural silence may stimulate feelings of shame and guilt in a child (Brown, et al., 2000; M. Daniel, 2005; Wood, Chase, & Aggleton, 2006). Brown et al. (2000) contend that children more readily adjust to living with HIV when the parent's or caregiver's response is optimistic and this enables them to overcome disease and disability factors. If the mother (or caregiver) is coping well, the child is more likely to

Children living with HIV often have physical symptoms of disease. Even when they start on ART they may have rashes or other visible signs particularly when the dosage is wrong or needs adjusting. This makes it easy for the child to be stigmatised and discriminated against. In addition, the centres where they receive treatment are often associated with HIV/AIDS and a child seen coming and going from such a centre may also be stigmatised. The caregivers of children living with HIV almost always impose secrecy on the child about his/her status. Mothers who are living with HIV feel enormous shame and want their child to keep the secret. This may be extremely difficult when medications have to be taken regularly twice a day and when there are physical symptoms. Children usually comply. Secrecy involves concealment, either by hiding something from the view or attention of others or by keeping silent about it. In the case of HIV, that which is concealed includes status, ongoing treatment, receipt of medical and material aid and visits to the treatment centre (Hardon et al., 2007). Where children's HIV status is involved, mothers may keep the status secret from the child or co-opt the child into keeping their status secret. Hejoaka (2009, p. 870), in her study on care and secrecy, explores the way in which mothers manage the "tensions between disclosure and concealment" of the HIV status of their children. Mothers have strategies to limit access to their homes but concealment is much harder outside the domestic space, especially when regular hospital visits are required. Mothers hesitated to disclose to their children for fear they would not be able to keep the secret, but where children *were* told, they followed their mother's lead in concealment (Hejaoka, 2009). The issue of secrecy is more about *naming* than about *knowing*: even when children have not been told, they know something is wrong (Nagler et al., 1995) . Once children have the name, they do not necessarily use it, most children will keep the secret as their caregivers

and society have taught them (Daniel et al., 2007; Nagler et al., 1995).

What compels to secrecy those who are infected, is the attitudes, beliefs and actions of others in society (Hardon, et al., 2007). Direct stigmatisation and discrimination against some HIV positive people, for example through labelling or exclusion, raises the *fear of stigma* among

the child's psychological adjustment (Brown, et al., 2000; Lwin & Melvin, 2001).

immigrant orphans, has also had widespread application in southern and eastern Africa (Witter & Were, 2004).

While some governments provide relief assistance, such as the orphan grant in South Africa and the food basket for registered orphans in Botswana (Kallmann, 2003), it would seem that the Botswana government is the first government to become involved in scaled-up provision of *psychosocial* support to orphans. Since 2006, the Botswana government has been replicating (through 10 of the 16 Regional Councils) a retreat-based programme called "Ark for Children" developed in 2001 by a small local NGO, People and Nature Trust. The approach is culturally appropriate; it revives some customary practices such as age-set group formation as used to be practiced during initiation (M. L. Daniel & Thamuku, 2007). The emphasis in therapy is largely on group work which is effective in a collectivist society, while the use of individual therapy is limited though it effectively helps to breach deepseated cultural silence.
