**3. Children infected by HIV**

Many children infected at birth or though breast feeding do not survive beyond their second birthday. However increasing numbers of HIV positive children who do survive beyond infancy are now beginning to access anti-retroviral drugs.

#### **3.1 Physical well-being: Illness, diagnosis and treatment**

Giese (2002, p. 68) distinguishes between two groups of HIV positive children, namely rapid progressors, and slow progressors. Rapid progressors are "infants who become symptomatic and very sick within a few months of birth and usually die by the age of 2 years" while slow progressors "remain asymptomatic […] during the first two years" and "generally survive to older childhood" (Giese, 2002, p. 68). Many children live with HIV until they are in early puberty before opportunistic infections begin to emerge. In some cases they are diagnosed with TB or another disease long before their HIV status is diagnosed.

A number of studies have examined the biomedical effects of illness and the implications of their status for their health and quality of life (Brown et al., 2000; Rao et al., 2007). Clinical manifestations of the disease include chronic cough, fevers, nausea and diarrhoea as well as chronic dermatological conditions such as rashes, fungal infections and abscesses (O'Hare et al., 2005). Those on ART may suffer side effects such as rashes, itching all over, a burning sensation in the legs and nausea. If they lack good nutrition they may experience difficulty in swallowing the drugs, nausea and vomiting, sweating and general weakness. Numerous studies have examined factors influencing adherence to ART among children (Bikaako-Kajura et al., 2006; Davies et al., 2008; Polisset et al., 2009; van Griensven et al., 2008; Van Winghem et al., 2008; Vreeman et al., 2008); issues include disclosure, relationship with caregiver, the involvement of health workers and structural issues like poverty.

Studies report that few children are informed of their HIV status and when they are informed, the event is controlled by their caregivers or by health care professionals (Lesch et al., 2007; Vaz et al., 2008). The most frequently given reasons for non-disclosure by caregivers include the associated stigma and discrimination, fear that the child will be unable to keep the secret, parental guilt, and concerns for the child's emotional and mental health, (Brown, et al., 2000; Hejoaka, 2009; Lesch, et al., 2007; Siripong et al., 2007; Vaz, et al., 2008) while disclosure usually occurs because of the need for the child to understand and 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 the child's psychological adjustment (Brown, et al., 2000; Lwin & Melvin, 2001).

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 appropriate counselling and psychosocial support.

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

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

immigrant orphans, has also had widespread application in southern and eastern Africa

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 deep-

Many children infected at birth or though breast feeding do not survive beyond their second birthday. However increasing numbers of HIV positive children who do survive beyond

Giese (2002, p. 68) distinguishes between two groups of HIV positive children, namely rapid progressors, and slow progressors. Rapid progressors are "infants who become symptomatic and very sick within a few months of birth and usually die by the age of 2 years" while slow progressors "remain asymptomatic […] during the first two years" and "generally survive to older childhood" (Giese, 2002, p. 68). Many children live with HIV until they are in early puberty before opportunistic infections begin to emerge. In some cases they are diagnosed with TB or another disease long before their HIV status is

A number of studies have examined the biomedical effects of illness and the implications of their status for their health and quality of life (Brown et al., 2000; Rao et al., 2007). Clinical manifestations of the disease include chronic cough, fevers, nausea and diarrhoea as well as chronic dermatological conditions such as rashes, fungal infections and abscesses (O'Hare et al., 2005). Those on ART may suffer side effects such as rashes, itching all over, a burning sensation in the legs and nausea. If they lack good nutrition they may experience difficulty in swallowing the drugs, nausea and vomiting, sweating and general weakness. Numerous studies have examined factors influencing adherence to ART among children (Bikaako-Kajura et al., 2006; Davies et al., 2008; Polisset et al., 2009; van Griensven et al., 2008; Van Winghem et al., 2008; Vreeman et al., 2008); issues include disclosure, relationship with

Studies report that few children are informed of their HIV status and when they are informed, the event is controlled by their caregivers or by health care professionals (Lesch et al., 2007; Vaz et al., 2008). The most frequently given reasons for non-disclosure by caregivers include the associated stigma and discrimination, fear that the child will be unable to keep the secret, parental guilt, and concerns for the child's emotional and mental health, (Brown, et al., 2000; Hejoaka, 2009; Lesch, et al., 2007; Siripong et al., 2007; Vaz, et al., 2008) while disclosure usually occurs because of the need for the child to understand and

caregiver, the involvement of health workers and structural issues like poverty.

(Witter & Were, 2004).

seated cultural silence.

diagnosed.

**3. Children infected by HIV** 

infancy are now beginning to access anti-retroviral drugs.

**3.1 Physical well-being: Illness, diagnosis and treatment** 

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 respond positively (L. Richter, 2002).

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

Growing Up in the Era of AIDS:

*Studies, 1*(1), 56-70.

467-488. doi:10.1080/0022038042000313336

doi:10.1016/j.socscimed.2009.02.035

*Mental Health, 19*, 1-17.

Bergen: University of Bergen.

Town: HSRC press.

*48*, 755-763.

The Well-Being of Children Affected and Infected by HIV/AIDS in Sub-Saharan Africa 169

Bauman, L. J., Foster, G., Silver, E. J., Berman, R., Gamble, I., & Muchaneta, L. (2006).

Bennell, P. (2005). The impact of the AIDS epidemic on the schooling of orphans and other

Bicego, G., Rutstein, S., & Johnson, K. (2003). Dimensions of the emerging orphan crisis in

Birdthistle, I., Floyd, S., Nyagadza, A., Mudziwapasi, N., Gregson, S., & Glynn, J. R. (2009).

Blystad, A., & Moland, K. M. (2009). Technologies of hope? Motherhood, HIV and infant

Brown, L. K., Lourie, K. J., & Pao, M. (2000). Children and Adolescents living with HIV and AIDS: a review. *Journal of Child Psychology and Psychiatry, 41*(1), 81-96. Campbell, C., Skovdal, M., Mupambireyi, Z., & Gregson, S. (2010). Exploring children's

Cluver, L., & Gardner, F. (2007a). The mental health of children orphaned by AIDS: a review

Cluver, L., & Gardner, F. (2007b). Risk and protective factors for psychological well-being of

Cluver, L., Gardner, F., & Operario, D. (2007). Psychological distress amongst AIDS-

Daniel, M. (2005). *Hidden Wounds: orphanhood, expediency and cultural silence in Botswana.*

Daniel, M. (2008). Humanitarian aid to vulnerable children in Makete and Iringa, Tanzania.

Daniel, M., Apila, H. M., Bjørgo, R., & Lie, G. T. (2007). Breaching cultural silence: enhancing resilience among Ugandan orphans. *African Journal of AIDS Research, 6*(2), 109-120. Daniel, M. L., & Thamuku, M. (2007). The Ark for Children: culturally appropriate

Deacon, H., & Stephney, I. (2007). *HIV/AIDS, stigma and children: A literature review*. Cape

Dlamini, P. S., Kohi, T. W., Uys, L. R., Phetlhu, R. D., Chirwa, M. L., Naidoo, J. R., et al.

stigma in five African countries. *Public Health Nursing, 24*(5), 389-399. Duffy, L. (2005). Suffering, shame and silence: the stigma of HIV/AIDS. *Journal of the* 

caregivers' perspectives. *AIDS Care, 19*(3), 318-325.

Retrieved from http://hdl.handle.net/1956/3294

*Marginalisation and empowerment*. Oslo: Unipub AS.

*Association of Nurses in AIDS Care, 16*(1), 13-20.

sub-Saharan Africa. *Social Science & Medicine, 56*(6), 1235-1247.

feeding in eastern Africa. *Anthropology & Medicine, 16*(2), 105-118.

Children caring for their ill parents with HIV/AIDS. *Vulnerable Children and Youth* 

directly affected children in Sub-Saharan Africa. *Journal of development studies, 41*(3),

Is education the link between orphanhood and HIV/HSV-2 risk among female adolescents in urban Zimbabwe? *Social Science & Medicine, 68*(10), 1810-1818.

stigmatisation of AIDS-affected children in Zimbabwe through drawings and stories. *Social Science & Medicine, 71*(5), 975-985. doi:10.1016/j.socscimed.2010.05.028

of international and Southern African research. *Journal of Child and Adolescent* 

children orphaned by AIDS in Cape Town: a qualitative study of children and

orphaned children in urban South Africa. *Journal of Child Psychology and Psychiatry,* 

(PhD, School of Development Studies, University of East Anglia), Norwich.

psychosocial support for children without parents in Botswana. In E. A. Lothe, M. L. Daniel, M. B. Snipstad & N. Sveaass (Eds.), *Strength in Broken Places:* 

(2007). Verbal and physical abuse and neglect as manifestations of HIV/AIDS

many others who have not necessarily had severe or direct experience of being stigmatised. This fear of stigma then leads to HIV- affected people adopting coping strategies of secrecy and silence (Ruora, et al., 2009). Shame, another direct cause for secrecy (Duffy, 2005), has its roots in the culture of blame - blame for breaching morality - which is frequently attributed to women (LeClerc-Madlala, 2001). LeClerc-Madlala (2001: 45) contends that this process of blaming women "both reflects and contributes to women's already marginalised and subordinate status in society". The underlying causes of shame are power relations, culture and morality. Cultural norms may be at the root of blame-related stigma and shame when HIV/AIDS is associated with immoral and avoidable behaviour (LeClerc-Madlala, 2001; Ruora, et al., 2009). Social constraints lead to isolation and the secrecy adopted for fear of stigma hinders care (Hejoaka, 2009).

Silence deprives HIV positive children of potential help as they cannot ask neighbours for support without disclosing the reason why. Smith et al. (2008, p. 1268), whose study concerns adults rather than children, note the strong relationship between social support and public openness about HIV status: "people cannot actually receive social support until disclosure occurs. On the other hand, individuals must perceive social support will exist before they make the decision to disclose." Smith et al. (2008) link the fear of stigma-related rejection to limited social networks and low self-esteem; and several studies note that keeping a secret increases stress and anxiety (Duffy, 2005; Smith, et al., 2008). Menon et al (2007: 349) conclude that "interventions to promote disclosure could facilitate access to emotional and peer support". Shame is frequently associated with blame which implies a moral judgement situating the underlying cause within society's culture and morality. Blystad & Moland (2009) show that feelings of guilt and shame lead to isolation, marginalisation, uncertainty and adversity for mothers of HIV positive children, limiting the social support they so desperately need. In order to support and include mothers of HIV positive children it is these underlying causes that should be tackled. Secrecy and silence are the products of shame and the fear of stigma. Both secrecy and silence worsen the experiences of HIV positive children and add to their adversities. Providing ART to HIV positive children is a start and should be seen as part of a much larger process.
