Fig. 16.1
Theoretical framework
3 Pregnancy and HIV/AIDS
Across cultures worldwide, pregnancy and motherhood are valued normal milestones of life and society expects every woman to successfully go through them (Echezona-Johnson 2009; Radcliffe 2009). Therefore, safe motherhood is of cross-cultural importance. In the developed world, people celebrate pregnancies as early as conception. However, in the developing world, because many cultures are unsure of the pregnancy outcomes and the associated high risks for the mother and baby, the norm is to celebrate pregnancy after a safe delivery. As a result, many pregnancies are not announced until it becomes obvious that the woman is undeniably pregnant or after delivery, lest the pregnancy becomes unsuccessful. Numerous biological factors affect pregnancy directly and these include anemia, undernutrition, infectious diseases such as tuberculosis, malaria, and HIV/AIDS, the majority of which are preventable.
In Africa, mothers have an honored social position (Mama 2002; Arnfred 2003). Women are valued for being able to get pregnant and deliver children to propagate the next generation but more importantly to produce heirs for the continuation of the linage of their spouses and for the women’s own security later in life (Beyeza-Kashesya et al. 2009, 2010). Theoretically, women want to attain the prestige associated with motherhood (Oyewumi 2003). In some cultures, especially the patriarchal societies, the women attain status and power in the home only when they have sons (Kandiyoti 1988). Similarly, in some cultures, a man’s virility is measured by his ability to have a child (Helman 1994) and infertile men are “nonexistent” (Hollos and Larsen 2008). The societal expectations for childbearing lead to high fertility rates in Africa (5–7 births/woman) (United Nations 2010) and make childlessness/infertility highly stigmatized (Hollos and Larsen 2008; see also Chap. 1 in this volume). Unfortunately, these childbearing expectations remain the same in HIV-infected women/couples. These socio-cultural expectations, together with the inherent desire of women to have children, have put women in a vulnerable position. Sometimes, WLHIV are not willing to use birth control methods lest they be named infertile (see case study 1). This social pressure contributes to nondisclosure of HIV serostatus and noncompliance to safe sex practises like condom use. Women may practise high-risk sexual behavior in the attempt to fulfill the socio-cultural expectations, have a sense of belonging, and avoid the stigma associated with childlessness (Nakayiwa et al. 2006; Hollos and Larsen 2008; Beyeza-Kashesya et al. 2009, 2011) consequently increasing the risk of maternal-to-child transmission of HIV (MTCT) and transmission to partners. Similarly, children that acquire HIV through MTCT are not exempt from these socio-cultural norms/expectations when they grow into adulthood.
Case Study 1
Mary Anne (not real name) is a 36-year-old lady who got married 5 years ago. She was diagnosed with HIV 3 years ago when she was nursing her husband in hospital. Mary Anne started HAART 2 years ago and so did her husband. She said: “I was advised not to have children since I have advanced HIV disease. However, my in-laws have advised my husband to marry another woman who can bear children. We have not disclosed to them our HIV status so they think I am infertile.” Mary Anne is here to ask her doctor if she and her husband have a chance to have a baby and dispel the in-laws’ misconception about her failure to have children.
Case study 1 presents a snap shot of the socio-cultural dilemmas facing HIV-infected couples. Whereas the couple above has overcome the battle of disclosure to each other, they are still faced with the challenge of disclosing to other family members. The husband is under pressure from his family to have concurrent sexual partners and bear children. This contributes to the high-risk heterosexual networks in Africa. Although advances in prevention of mother-to-child transmission of HIV (PMTCT) have given hope to HIV-infected couples to have uninfected children, there is still need to support couples and care providers to deal with the societal stigma associated with HIV infection and fertility.
4 Adolescence and HIV/AIDS
Across the globe, there is a renewed emphasis on developing HIV prevention interventions that take into consideration the local realities among adolescents and young people (UNICEF 2009). Adolescent sexuality and teenage pregnancies are highly stigmatized in many cultures (Arnfred 2003; Nakayiwa et al. 2006; Bakeera-Kitaka et al. 2008) and this interferes with the young people’s rights and freedom to access support on safe sex practises and family planning services. In addition, there has been a gap in the availability of culturally appropriate interventions in the area of HIV prevention and sexual risk reduction in this target group (Bakeera-Kitaka et al. 2008). Furthermore, there is limited emphasis on education of the girl children in many African cultures. Many drop out of school and are exposed to early marriages and the related high-risk sexual behaviors. Similarly, sexual relations between young women and men who are 5 or more years older are the major factors in the spread of HIV to the younger generation in African countries (UNICEF 2009). Therefore, there is an urgent need to develop a culture of openness with adolescents about their sexuality and the challenges they may have in order to understand and address the greater HIV risks to girls such as multiple concurrent partnerships, intergenerational sex, transactional sex, and violence against women and girls. Both in and out of school adolescents should be empowered to make appropriate and safe sex decisions to avoid HIV infection. Sexually active young people need support in order to avoid multiple partnerships and in using condoms consistently. In addition, the young people who are not sexually active need support to delay sexual initiation.
On the other hand, adolescents living with HIV/AIDS face unique challenges of social discrimination. As highly active antiretroviral therapy (HAART) becomes increasingly available, young people living with HIV are growing into adulthood. However, many are orphans and have suffered recurrent illnesses and subsequently limited education. It is challenging to support them through adolescence and adulthood in the context of the prevalent stigma in schools, homes, and communities. There is a need to prepare society to receive them and be mindful of their unique needs. In an effort to support the transition from pediatric to adult HIV/AIDS clinics, the Infectious Diseases Institute (IDI) in Kampala, Uganda, has pioneered a transition clinic that caters for HIV-infected children at a time when they seem too old to attend the pediatric HIV clinics yet too young to be comfortable in the adult HIV clinic. The transition clinic is designed to meet the unique needs of adolescents living with HIV/AIDS (ALHIV), and peer counselors have been shown to influence the attitudes and practises of adolescents and encourage them to cope with the challenges of sexuality, dating, disclosure, lifelong HAART, and adherence to ongoing HIV/AIDS care among ALHIV (Bakeera-Kitaka et al. 2008). Similarly, there is a need to integrate family planning services into routine support for adolescents in order to prevent unwanted and unsafe pregnancies and the associated complications. Therefore, HIV prevention practises; should address the unique needs of WLHIV in the context of their socio-cultural expectations of motherhood and provide for safe options for women to have children with the reduced risk of MTCT. The entry point to this strategy is through scaling up HIV testing to all women in the reproductive age group (15–45 year) who constitute the majority of PLHIV in SSA (Were et al. 2006; UNAIDS 2009) that are potentially fueling the new HIV infections.
5 The HIV/AIDS Epidemic Among Women in Conflict-Affected Areas
Many countries in sub-Saharan Africa have been affected by war in the last three decades of the HIV epidemic, and the overlap of conflict and HIV gives the epidemic unique dynamics. Sexual violence and rape are believed to fuel the epidemic in countries affected by conflict. It is hypothesized that the high incidence of rape and forced displacement that accompany conflicts/wars increase the risk of HIV transmission within the affected population. The increasing incidence of rape in South Africa (Ostergard and Tubin 2008) is reported to be associated with increased HIV transmission, and the reverse is also true since the high prevalence of HIV infection is also reported to be in part responsible for the increasing incidence of rape. In particular, young people who suspect that they are HIV positive have developed an inclination to spread the disease (Ostergard and Tubin 2008). Therefore, HIV/AIDS care programs and health services in general should consider availing postexposure prophylaxis services for rape victims (Population Council 2011) in addition to increasing antirape campaigns in conflict-affected areas. Furthermore, HIV prevention strategies should be an essential component of the amnesty programs because refugees are likely to transmit or acquire HIV infection within the host communities as well as among themselves (Spiegel et al. 2007). On the other hand, conflicts and war are also responsible for an increased number of orphans who face various socio-cultural disadvantages including poverty, poor or no education, lack of love and social support, early marriages, and rape, all of which make them more vulnerable to HIV infection. Similarly, there is a scarcity of health-care services in many war-stricken areas thereby posing a challenge to the scale-up of HIV/AIDS care and treatment services. Therefore, the war-affected areas need specific HIV prevention interventions to address this unique situation that is prevalent in many parts of Africa. Innovative ways are critically needed to deliver essential health services including HIV care and treatment to this vulnerable population.
6 Orphans and Motherhood in Africa
Besides the wars, HIV/AIDS has exponentially increased the number of orphans and vulnerable children in SSA which is the home for 77% (11.6 M) of the 15 million children under 18 years that have been orphaned by AIDS worldwide. Even with the scale-up of HIV treatment, it is estimated that by 2015–2020, the number of orphaned children will still be overwhelmingly high (Foster and Williamson 2000; UNAIDS 2009). In Africa, the roles of motherhood are not limited to biological mothers since members of the extended family such as grandmothers, cousins, and aunties traditionally take on the roles of mothering parentless children thus offering an “extended family safety net”(Foster and Williamson 2000; UNAIDS 2009). However, with the upsurge of orphans due to the HIV/AIDS epidemic, the extended families are overstretched and under stress to handle the large number of orphans. Hence, some children slip through the safety net and are exposed to vulnerable situations that expose them to HIV infection such as child-headed households, child labor, prostitution, rape, violence, and poverty. However, there are also reports of child abuse by the very relatives who act as guardians of these children. Therefore, global and national responses to the HIV/AIDS epidemic need to support and preserve the “extended family safety net” that is more culturally acceptable in communities that maintain the tradition of child fostering. In urbanized communities where the “extended family safety net” is weakened, there is a need to develop other alternatives for orphans such as institutions, children’s villages, and adoption placements. However, institutional responses are often unsustainable and may be viewed as inappropriate by community members who recognize their potential to undermine existing coping mechanisms (Drew et al. 1998; Foster and Williamson 2000). Therefore, HIV/AIDS prevention and care interventions for orphans and vulnerable children (OVC) should be tailored to the existing norms and practises and designed to strengthen family and community capacities to care for OVC.
7 Scaling Up of HIV Testing for Mothers and Linkage to Comprehensive HIV/AIDS Care
The entry point to HIV care and treatment for mothers is universal knowledge of HIV serostatus (Musoke 2004; Nassali et al. 2009; UNAIDS 2009). HIV testing, counseling, and prevention services in antenatal settings offer an excellent opportunity not only to prevent newborns from becoming infected but also to protect and enhance the health of HIV-infected women while enhancing the prevention of infection among those found to be HIV negative (Nguyen et al. 2008; Nassali et al. 2009). Recent evidence suggests that inadequate testing rates impede national AIDS responses and contribute to delayed entry HIV/AIDS care programs as well as inadvertent HIV transmission (UNAIDS 2009). By 2008, up to 60% of HIV-infected pregnant mothers were unaware of their HIV serostatus (UNAIDS 2009) and therefore missed opportunities to access HIV treatment and PMTCT interventions. The documented factors that hinder mother’s access to HIV testing include lack of money to transport them to the testing centers, failure to leave their homes because they are taking care of children while the men are at work, and fear of the stigma associated with HIV infection and motherhood in addition to the fear of having to disclose their results to spouses (Nguyen et al. 2008; Visser et al. 2008; Nassali et al. 2009), all compounded by the failure of health system to offer routine HIV tests. Many of these reasons stem from the socio-cultural norms and beliefs pertaining to the position of the woman in society. For example, women in Africa stay at home and look up to the men as the sole breadwinners and decision makers including taking decisions for mothers to seek health care. In addition, African women are not empowered enough to make choices on safe sexual practices like condom use (Visser et al. 2008; Lifshay et al. 2009) mainly for fear of violence, abandonment, and loss of security since most women own no property.
8 HIV Sero-Discordance
A unique evolution of the mature HIV epidemic in SSA is that the majority of the HIV infections are attributable to heterosexual transmission and discordance of HIV serostatus. This is emerging as a major risk factor for new infections particularly among marriage relationships (Dunkle et al. 2008), more so because the majority of the discordant couples are not aware of their HIV discordant status. In a community-based study that provided home-based HIV testing in rural Uganda, 43% of the spouses of patients on HAART were HIV negative (Were et al. 2006). Unfortunately, the confluence of high rates of discordance within marriage, low ability of women to make choices of safe sex practises, and the low rates of condom use contribute to the increasing new HIV infections within the marriage setting (Dunkle et al. 2008). Data shows that women in discordant relationships have often had unprotected sex for the sake of having children (Nakayiwa et al. 2006; Beyeza-Kashesya et al. 2009, 2011). Furthermore, women face more discrimination if they are the positive partner because society seems to condone or justify high-risk sexual behaviors among men. Moreover, the gender of the HIV-positive partner influences childbearing differently. Couples where the woman is the positive partner were more than two times more likely to want to have more children than couples where the man is the positive partner (Beyeza-Kashesya et al. 2010).
Case Study 2
Jane (not real name) is a 30-year-old woman who was diagnosed with HIV infection 2 years ago. She is afraid of telling her husband because she imagines he will kick her out of the house. For the same reason, she has not enrolled into any HIV/AIDS care programs since she tested HIV positive. As a result, she usually accepts to have unprotected sex. Moreover, she is unaware of her husband’s HIV serostatus. She is pregnant and she is at Makerere College of Health Sciences to know whether her child is at risk of HIV infection.
Case study 2 is an example of a typical woman living with HIV/AIDS (WLHIV) that walks into the adult infectious diseases clinic at Makerere College of Health Sciences that offers free HIV/AIDS care to over 20,000 PLHIV in Uganda. Amidst the long patient queues at many HIV clinics in Africa, the care providers have to attend to several of these situations. The concept of HIV sero-discordance is both scientifically and socially complex for both the health worker and the patients. It is even more complicated in the polygamous African society. We recommend evidence-based interventions that target heterosexual couples in order to promote counseling and testing for couples and create a culture that encourages disclosure of HIV serostatus to sexual partners. There is a need for HIV care providers to further study the determinants of HIV sero-discordance and consider innovative interventions, for example, preexposure prophylaxis, that can be tailored to the prevalent socio-cultural norms and practises in Africa.
9 Disclosure of HIV Status and Its Consequences
The social stigma associated with being HIV disease hinders PLHIV from disclosing their HIV serostatus to spouses and other family members. Many WLHIV do not disclose their serostatus to their partners, family members, and friends, thereby creating potential barriers to prevention of sexual transmission of HIV to partners and MTCT (Visser et al. 2008). A study in South Africa reported that 78% of recently diagnosed patients with HIV infection did not disclose their serostatus to their partners and 46% did not know their partner’s serostatus (Olley et al. 2004). In a hospital-based HIV clinic in South Africa, nondisclosure to partners was up to 21% and disclosure was not associated with availability of HAART (Skogmar et al. 2006). Disclosure of positive test results is still challenging for mothers who usually receive HIV testing during pregnancy (Visser et al. 2008; Nassali et al. 2009; see also Chaps. 3, 4, 15, and 17 in this volume). Many mothers in developing countries do not disclose because of the fear of blame, accusation of infidelity, fear of abandonment by partners, rejection, stigmatization, emotional and physical abuse, and most of all loss of economic support from the partner (Karamagi et al. 2006; Visser et al. 2008). Unfortunately, lack of disclosure creates barriers to preventing sexual transmission to partners and limits access to prevention of maternal-to-child transmission (PMTCT) programs as well as subsequent linkage to comprehensive HIV/AIDS care including HAART for the mother and baby (Nguyen et al. 2008; Visser et al. 2008; Nassali et al. 2009). However, prevention of HIV infection to the unborn baby is a strong motivator for mothers to take up HIV testing and PMTCT services during pregnancy (Varga et al. 2006; Nassali et al. 2009). Unfortunately, only one-third of the mothers are estimated to return for follow-up HIV/AIDS care post delivery (Nassali et al. 2009). This means, therefore, that most mothers miss the current PMTCT strategies where mothers are supposed to receive prolonged HAART (up to 6 months post delivery) to reduce HIV transmission to the baby through breastfeeding (Visser et al. 2008; WHO 2009) as well as specific treatment for the mothers.
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