Pranee Liamputtong (ed.)Women, Motherhood and Living with HIV/AIDS2013A Cross-Cultural Perspective10.1007/978-94-007-5887-2_2© Springer Science+Business Media Dordrecht 2013
2. Growing Confidence? Family Planning by HIV-Positive Mothers in a South African Urban Setting
(1)
Perinatal HIV Research Unit, University of the Witwatersrand, Chris Hani Baragwanath Hospital, 20 22nd Street, Menlo Park, Pretoria, 0081, South Africa
(2)
Anova Health Institute, Postnet Suite 242, X30500, Houghton, Johannesburg, 2041, South Africa
(3)
Paediatric Division, Perinatal HIV Research Unit, University of the Witwatersrand, Chris Hani Baragwanath Hospital, 114, Diepkloof Soweto, 1864, South Africa
Abstract
Prevention of unintended pregnancy amongst HIV-positive women is a critical intervention to reduce maternal mortality and prevent HIV infection of infants. In this qualitative study carried out in Soweto, South Africa, HIV-positive mothers of HIV-negative or HIV-positive infants were interviewed shortly after the birth of their babies in order to explore their perceptions, understandings and experiences on a range of issues. The interviews were subjected to thematic analysis to identify themes significant to the women themselves, as well as those relevant to healthcare provision. This report focuses on findings regarding fertility desires, intentions and practise. The findings are discussed in relation to other research findings. Some implications for healthcare provision are highlighted.
1 Introduction
In sub-Saharan Africa, more than half of the 22.5 million people living with HIV/AIDS (PLWHA) are women (UNAIDS 2010). HIV poses additional risks during pregnancy: a report on maternal mortality in South Africa for the period 2005–2007 identified HIV/AIDS as the largest cause of maternal mortality (NCCEMD 2008). Worldwide, in 2011 despite a drop of 24% since 2009, 330,000 children were newly infected with HIV, the majority through mother-to-child transmission (MTCT) (UNAIDS 2012). Although this was a significant decrease from previous years, much remains to be done to achieve the goal of virtual elimination of MTCT by 2015 (UNICEF/UNAIDS/WHO/UNPF 2010). Preventing unintended pregnancies amongst women living with HIV is a critical strategy both to reduce mortality related to pregnancy and to prevent mother-to-child transmission (PMTCT) (NDOH/SANAC 2010; WHO 2010).
However, despite wide support for family planning1 and for strengthening linkages between HIV/AIDS services and sexual and reproductive health (SRH) services2 (FHI 2010a, b), operationalization remains disappointing (Wilcher and Cates 2010). Moreover, there is little in the way of specific guidance on how to engage with PLWHA on family planning, increasing the likelihood that health workers’ own values and attitudes will affect how guidelines are implemented (London et al. 2008). South African guidelines (NDOH/SANAC 2010), for example, provide detailed protocols on counseling and testing, antiretroviral prophylaxis and promotion of safe feeding practises, but refer to family planning only under the general rubric of “counseling on safer sex, family planning and contraception”. Such a directive fails to address the complicated set of issues that counseling on family planning needs to deal with, including information on risks of pregnancy for HIV-positive women and transmission to infants, contraceptive options (including termination of pregnancy, where appropriate), attitudes and possible involvement of male partners or other family members, gender norms and, not least, rights to autonomous decision-making (Gruskin et al. 2007). With regard to the latter, it is important to distinguish between desires to have (or not have) children (fertility desires), intentions or decisions to pursue or to avoid pregnancy, and actual practise, expressed in pregnancy rates (Ndlovu 2009).
The focus of this chapter is to explore issues related to family planning for HIV-positive women. The chapter starts with a brief literature review, focusing primarily on studies in sub-Saharan Africa. We then report on a qualitative study carried out in Soweto, South Africa, focusing on findings relevant to the fertility desires and family planning intentions and practise of a group of HIV-positive mothers of young HIV-negative or HIV-positive babies. We conclude by discussing the findings and drawing out some implications for healthcare guidelines and practise.
2 Literature Review
Demographic, cultural, psychosocial and socio-economic factors all play a role in the desire and final decision to have children (Nóbrega et al. 2007; Nattabi et al. 2009). Some of the significant interlinked factors impacting on the childbearing decision-making process for PLWHA – both as motivators to fall pregnant and as pressures not to fall pregnant – are age and gender, already having children, family and partner attitudes towards childbearing, health concerns, understanding of and access to PMTCT and highly active antiretroviral therapy (HAART), duration of HAART, disclosure (or not) of HIV status, stigma-related concerns and health worker attitudes and practises.
2.1 HIV Status and Fertility Desires
Studies in sub-Saharan Africa have shown that being HIV-positive does not eliminate women’s desire to have children (Gray et al. 1998; Boerma and Urassa 2000; Hunter et al. 2003). However, fertility desires are generally relatively low and considerably lower than in the case of HIV-negative women (Rutenberg and Baek 2005; Nakayiwa et al. 2006; Elul et al. 2009). Importantly, studies undertaken after the introduction of broader access to HAART have shown that desire for children may increase amongst women who have access to HAART (Maier et al. 2009; Ndlovu 2009), who express optimism about HAART (Kaida et al. 2009), who have improved health due to HAART (Panozzo et al. 2003) and with longer duration of HAART (Smith and Mbakwem 2007). Whether increase in desire leads to increases in pregnancy rates is not clear.
2.2 Age and Existing Children
A number of studies (Nakayiwa et al. 2006; Myer et al. 2007; Nóbrega et al. 2007; Cooper et al. 2009; Peltzer et al. 2009; Kakaire et al. 2010) have found a significant correlation between fertility desires and age, with younger women more likely to want children than older women. Possibly linked to this association, some studies suggest that already having (surviving) children may decrease the likelihood of strong fertility desires amongst PLWHA (Nakayiwa et al. 2006; Myer et al. 2007; Nóbrega et al. 2007). However, in contrast, Peltzer et al. (2009) found no association between the number of prior children and fertility desire in HIV-positive women.
2.3 Social Roles
Realizing parenthood is part of a broader set of social relations and pressures that impact on PLWHA’s desires and intentions to bear children. The possibility of discussion or negotiation between partners (or indeed, others) on these matters is largely dependent on deep-seated “cultural scripts” that dictate the respective roles of women and men in sexual behavior and in decisions on limiting fertility (UNICEF/UNAIDS/WHO/UNPF 2010).
The desire for children amongst PLWHA – especially women – often reflects a central belief that to fulfil their role in society, women must have children (Nakayiwa et al. 2006; Cooper et al. 2007; Myer et al. 2007; Long 2009). Childbearing serves as a significant marker of various aspects of womanhood, providing proof of a relationship with a man and raising women’s status in the family; however, because of the high value placed on children and a tendency to blame women for infertility, in many African societies, childlessness and infertility are highly stigmatizing and can result in negative social repercussions such as loss of social status, blame and rejection for women (Long 2009; Ujiji et al. 2010; see also Chaps. 1, 5 and 6 in this volume).
For both men and women, the desire for children is linked to the idea of lineage and posterity (Beyeza-Kashesya et al. 2009). For men, fertility is also considered proof of virility – central to South African male social identity (Cooper et al. 2007). Some studies (Nakayiwa et al. 2006; Myer et al. 2007; Cooper et al. 2009) have found that HIV-positive men were more likely than HIV-positive women to want additional children, implying the possibility of pressure on female partners, even when contrary to the latter’s wishes. Very high rates of sexual violence in South Africa, within and outside intimate relationships and legitimated by patriarchal attitudes (Gender Links/MRC 2010), may also contribute to unintended pregnancies.
There is some evidence of challenges to these entrenched attitudes, at least in the case of PLWHA. Most HIV-positive women participants in a study in Zimbabwe (Feldman and Maposhere 2003) thought that HIV-positive women should not have children, a belief they assumed was shared by relatives and community members. These findings require replication but may in any case reflect an aspect of HIV stigma rather than a more general change in underlying attitudes.
2.4 Stigma and Disclosure
Many HIV-positive women are at pains not to disclose their status to others, including their male partners, for fear of rejection, abandonment or violence (Greeff 2013; see also Chap. 15 in this volume). On the other hand, lack of disclosure potentially exposes them to pressure from their families and from their male partners regarding their fertility. To choose not to have (further) children on the grounds of their HIV status thus exposes HIV-positive women to a double stigma: that of not having children and (potentially) that associated with being known to be HIV-positive. Even when wanting to fall pregnant, they are caught in a dilemma that discussing their fertility intentions and HIV status with their partners could expose them to rejection (Ujiji et al. 2010). On the other hand, nondisclosure increases the risk of pregnancy even when this is not desired.
2.5 Knowledge
A critical factor affecting the childbearing desires and intentions of PLWHA is the extent of their knowledge about transmission, the effectiveness of PMTCT measures and effects of pregnancy on their own health. Laher et al. (2009) have argued that much of the decision-making process around pregnancy intentions is based on exaggerated fears about the likelihood of MTCT and negative consequences of pregnancy on their own health and life expectancy (e.g. risk of re-infection with a different HIV strain during attempts to conceive, a decrease in CD4 count in pregnancy, illness during pregnancy and loss of blood at delivery). A number of studies (Feldman and Maposhere 2003; Rutenberg and Baek 2005; Cooper et al. 2007; Kanniappan et al. 2008) have confirmed that such fears are common. Thus, it is not surprising that knowledge of PMTCT strategies (Peltzer et al. 2009) and optimism about HAART (Kaida et al. 2009) have been found to increase the fertility desires of HIV-positive women.
2.6 Health Workers and Healthcare Practise
The focus of HIV prevention campaigns on avoiding unprotected sex and using condoms can imply that PLWHA should not have (further) children. Many HIV-positive women have internalized this message and find it reinforced by health workers, whose attitudes and beliefs – often judgmental and moralistic – can powerfully influence decision-making with regard to fertility (Tavrow 2010). Negative attitudes towards termination as an option to deal with unintended pregnancy remain common amongst health workers (Harries et al. 2009).
Health workers may act as gatekeepers of knowledge, sometimes providing incorrect or outdated information (Tavrow 2010) or information filtered through their own attitudes towards sexual activity or pregnancy in PLWHA (Harries et al. 2007). Rather than providing a balanced appraisal of risks and preventive measures, the negative aspects of pregnancy tend to be stressed (Oladapo et al. 2005; Laher et al. 2009). Even when not overtly prescriptive, counseling tends to emphasise biomedical consideration (Harries et al. 2007) rather than the myriad other factors influencing fertility desires and intentions – let alone practise, which is often strongly influenced by male partners.
In routine clinical care, counseling around issues of fertility and contraception generally takes place around the time of the birth of a child and/or HAART initiation (Myer et al. 2007; Nduna and Farlane 2009). Yet, since fertility desires may change over time (and specifically over time on HAART), a more responsive form of engagement is necessary in long-term care, adapting counseling and contraceptive advice to the changing needs of clients (Myer et al. 2007; Laher et al. 2009).
What we have discussed above sketches only some of the competing influences on the fertility desires, intentions and practises of HIV-positive women, together creating a nexus of personal, social, economic and cultural factors that constrain their ability to make decisions on their own terms and to follow through with decisions once made.
3 The Study
This chapter draws on findings from a qualitative study that explored the understandings, attitudes and concerns of HIV-positive women in the context of learning their baby’s HIV status in the first few weeks of life. Certain findings have been reported in two earlier papers (Lazarus et al. 2009, 2010). Here, we provide a more in-depth account of reported fertility desires, intentions and practises of mothers of HIV-negative or HIV-positive babies and attempt to situate what they had to say in the context of social norms and pressures influencing them.
3.1 Study Context3
Fieldwork took place at an HIV research and treatment site in Soweto, a township of Johannesburg. At the time of this study, the site provided polymerase chain reaction (PCR) testing for HIV for 60% of HIV-exposed babies in Soweto and follow-up healthcare for the majority of those testing HIV-positive. Fieldwork was carried out over a 10-week period in November 2006–January 2007.
Soweto, a township with a population of around two million, is located about 15 km from the Johannesburg city centre. Unemployment rates were (and remain) high. Most residents use the public health system (Gray et al. 2006). There is widespread awareness of HIV and AIDS. Nevertheless, seroprevalence rates in pregnant women are high (just under 30%) (NDOH 2010). However, uptake of HIV testing and the PMTCT regimen by pregnant women during antenatal care is high, as is subsequent testing of their babies for HIV on a PCR test at 4–6 weeks. Perinatal transmission rates on the single-dose nevirapine (NVP) regimen at the time of this study were around 8.4% (Struthers et al. 2006).4 Babies who test HIV-positive are eligible for enrolment in HAART programmes at government health services or donor-funded partner sites (Mphatswe et al. 2007; Violari et al. 2007).
3.2 Methods
Recruitment of Study Participants
A sample of convenience of HIV-positive mothers was recruited when they brought their babies for PCR testing. Mothers of HIV-negative babies were interviewed5 on average 2 weeks after receiving the PCR test results; mothers of HIV-positive babies were interviewed about 5 weeks after receiving their baby’s results, hence when their babies were on average somewhat older than the HIV-positive babies (see below). The difference reflects primarily an ethical decision to defer interviews of mothers of HIV-positive babies in order to minimise possible stress on receiving the result. In addition, some mothers (more often of HIV-positive babies) were interviewed later due to scheduling of clinic visits or to the baby having been ill and/or needing hospitalization.
Data Collection and Analysis
A trained fieldworker conducted qualitative, in-depth interviews with participants in their preferred language, using an interview guide comprising open-ended questions on a range of issues (see Box 1).
A second fieldworker translated and transcribed the recordings into English. The transcriptions were then reviewed for accuracy by the fieldworker responsible for the interviews. Both fieldworkers assisted in clarifying uncertainties or ambiguities in meaning encountered during data analysis.
Thematic analysis was used to identify themes that appeared significant to participants, as well as those of interest from a healthcare perspective (Ritchie and Spencer 1994). Generally, there was no attempt to quantify the occurrence of themes. Rather, following a qualitative paradigm, the intention was to highlight not only themes that seemed characteristic across participants (indicated by shorthand references such as “most” or “often”) but also less common themes, which may reflect ideas that are less often expressed, but are nevertheless potentially significant in a healthcare context.
Because of significant commonality across participants in the findings reported here, themes are not differentiated by status of the baby, except where there appear to be clear differences. Selected quotations have been used to illustrate the themes described in the report.
Box 1 Questions from Interview Guide
Was this baby planned? How did you feel when you found out you were pregnant?
After getting the PCR result, what are your thoughts about the possibility of falling pregnant again?
As far as you know, what are the risks for you of having a HIV-positive child if you were to fall pregnant again?
Are you using any method of family planning at present? If yes, what and why? What do you plan to do about family planning in future?
What are/would be the difficulties for you in sticking to the method you prefer? (Do other people cause difficulties?) What would make it easier for you to stick to the method?
Participant Profile
Two groups of women – 20 mothers of HIV-negative babies and 18 mothers of HIV-positive babies – participated in the study. Mothers of HIV-negative and HIV-positive babies were similar in age (average 29 and 27 years, respectively), education (all with at least some high school education), employment status (the majority unemployed) and household composition (living with an average of 3.5 other people, generally not including a male partner). These profiles are fairly typical of young women living in Soweto (Gray et al. 2006).
For both groups, the median number of children was two. For two mothers of HIV-negative babies and six mothers of HIV-positive babies, this was their first baby. Interview data suggested that most (but not all) mothers in both groups had no other HIV-infected children.
A minority of the women were on HAART – five mothers of HIV-negative babies and just one mother of an HIV-positive baby – and most described their health as good, apart from minor complaints. All except three women had taken PMTCT prophylaxis, as had their babies.
Median age of the babies at the time of the interview was 5.7 weeks (range = 4.9–13.7 weeks) for HIV-negative and 10.6 weeks (6.7–16.0 weeks) for HIV-positive babies. Just more than two-thirds of the HIV-positive babies were on HAART. A third of HIV-positive babies had been ill or hospitalised at least once, while this applied to only two (10%) of the HIV-negative babies.
Most women (18 mothers of HIV-negative babies and 17 mothers of HIV-positive babies) had disclosed their HIV status to at least one other person, generally a female member of her extended family. Slightly more than half of the women had disclosed their status to a male partner; those who had not done so were generally no longer involved with the partner.
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