Sub-Saharan Africa experiences high rates of HIV infections among women and children. The infections among children younger than 15 are reported to take place primarily through mother to child transmission (MTCT) that occur during pregnancy (5-10%), birth (10-20%), and through breast feeding (5-20%).⁽²⁾ In recent years, prevention of mother to child transmission of HIV (PMTCT) programmes were established to reduce the occurrence of MTCT during pregnancy, labour and delivery, and breastfeeding phases. PMTCT guidelines introduced a number of innovative practices of infant care to reduce infections, such as exclusive feeding and heat treating of breast milk.⁽³⁾ PMTCT programmes also aimed to enhance ART access for pregnant women and address high mortality among women and children.

However, non-adherence and dysfunctional health systems⁽⁴⁾ demonstrates PMTCT to be ineffective in reducing infant HIV infections. Furthermore, HIV stigma forms a backdrop of most societies in sub-Saharan Africa⁽⁵⁾ and poses a threat for patients to access HIV health care services.⁽⁶⁾ Stigma undermines efforts aimed at managing and preventing HIV. The following paper provides a discussion of the challenges faced by HIV positive mothers in adhering to PMTCT programmes within stigmatising communities. In addition, the challenges experienced from within the health care facilities and associated with cultural practices in infant care are investigated.

Health care system as an agent of HIV stigma against HIV positive mothers

Despite the presence of interventions aimed at mitigating stigma, there is evidence of stigmatising behaviours against people living with HIV & AIDS, and people related or associated with those living with HIV.⁽⁷⁾ Interestingly, most experiences of HIV stigma take place within health care facilities.⁽⁸⁾ For instance, health workers may stigmatise patients, but at the same time health care workers may also experience stigma by virtue of the fact that they work with HIV & AIDS patients. This can have adverse consequences for HIV & AIDS programs, as patients and health workers would not want to be associated with HIV & AIDS health care service due to the fear of stigma. A study conducted by Sprague, Chersich, and Black⁽⁹⁾ found that often women feared to be tested positive due to fear of being stigmatised. In addition, due to fear of being stigmatised, some women accessing health care services denied a positive test result and some denied being tested for HIV.⁽¹⁰⁾ The study also found that some mothers would not bring the baby back to the clinic for HIV tests or for laboratory results for the HIV status of the baby. These cases resulted in some mothers not being able to access or adhere to PMTCT, resulting in missed opportunities to save babies from HIV infections. Sprague et al. further found that stigma, along with other dysfunctional aspects evident in within health care systems, posed as challenges against mothers adhering to PMTCT.⁽¹¹⁾

Due to the impact that HIV & AIDS has had on sub-Saharan Africa, health care systems are faced with a lot of structural challenges in responding to prevention, care and treatment of the pandemic. Health care systems experience the reality of overcrowding, staff shortages and having limited infrastructure. A combination of these factors, within the context of high HIV stigma, undermines the effectiveness of efforts to address HIV. These conditions prove to be inconvenient and discomforting for patients, as they may experience their rights to privacy and confidentiality being undermined.⁽¹²⁾ The lack of privacy and confidentiality that may be encountered by patients could lead to personal information being divulged without the permission of the patient.

Efforts have been made to improve accessibility of HIV services, which include exclusive departments, cues or buildings that provide specialised care and treatment for people living with HIV, such as the Wellness Clinics and special cues for ART’s and PMTCT.⁽¹³⁾ In some settings, these efforts involve having colour coded files to identify patients or babies of patients infected with HIV. These initiatives may have improved the HIV patients’ access to services but has tended to involuntarily disclose their status to others. Patients may feel uncomfortable accessing these facilities due to fear that other community members may identify and ostracise them or their families. These settings pose a threat to women to access and adhere to PMTCT due to fear of stigma.

Cultural infant care practices as potential threats to PMTCT adherence

The effectiveness of PMTCT requires close adherence of the mother (or guardian) to strategies outlined for infant care practices. These include heat treating of breast milk, exclusive breast milk feeding and bottle feeding. These innovative practices are peculiar within most African contexts, and are not seen as acceptable, especially if the mother is perceived to be healthy. A study conducted in Zimbabwe revealed that there are stigmatising beliefs held against non-breast feeding mothers.⁽¹⁴⁾ The study was conducted among mothers, grandmothers, midwives, and husbands with the aim to understand acceptability of heat treatment of human breast milk. The findings of the study revealed that mothers who did not breast feed were often accused of infidelity and witchcraft. Participants in the study also had the common idea of becoming contaminated by touching human milk. The study illustrates the impact of social and cultural stigma that might have adverse effects in terms of mothers’ adherence to PMTCT.

Mothers feel the need to protect their children against HIV infections but often their choices are questioned by others. It is very important for a mother to make informed choices when it comes to feeding options that would be best for her and her baby. However, due to HIV stigma and lack of information, these choices are often influenced by fear and guilt.⁽¹⁵⁾ This often leads to limited access and non-adherence to PMTCT. For instance, often mothers question the safety of their breast milk when they are HIV positive.⁽¹⁶⁾ Findings from a study by Koricho, Moland and Blysta⁽¹⁷⁾ revealed that HIV positive mothers perceived their breast milk to be poisonous and believed that it would contaminate their babies.

As discussed above, mothers frequently choose not to disclose their HIV status due to fear of stigma. HIV stigma poses a threat to withdrawal of social support from families and friends for an HIV positive mother and her baby. These mothers are often not supported by families and the community due to their “peculiar” practices they implement in caring for their babies. Decreased social support may result in loss of economic support, emotional support and moral support from potential and existing sources due to stigma.

Concluding remarks

The effectiveness of HIV prevention and treatment programs in sub-Saharan Africa, do not rely only on access, adherence and a functional health care system. Rather, the interplay of these factors and the context in which they exist proves to have an iterative effect on these programs. It is therefore important to keep this in mind when implementing such programmes as these may challenge their effectiveness in HIV prevention and treatment, as is the case with the PMTCT programmes. Health education should not only be emphasised around HIV & AIDS issues but should be treated as a norm, so as not to ostracise patients living with HIV. This would help to de-stigmatise behaviours related to HIV care and prevention. Furthermore, there is also a strong need for measures to protect and promote clients’ right to privacy and confidentiality, and to help mitigate HIV stigma. There is also a need to invest in feasible administrative systems and infrastructure that promote patients rights to confidentiality and privacy. A focus on all of these aspects would improve policies within health care facilities and ultimately help reduce the number of children infected with HIV, by improving access and adherence to PMTCT and ART.

NOTES:

(1) Contact Tshadinyana Phetoe through Consultancy Africa Intelligence's HIV & AIDS Unit ( hiv.aids@consultanyafrica.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it ).
(2) United Nations Children’s Fund (UNICEF), 2007. Guidance on global scale-up of the prevention of mother to child: towards universal access for women, infant and young children and eliminating HIV and AIDS among children. Geneva: WHO, http://www.unicef.org.
(3) National Department of Health, 2010. Guidelines for engagement of HIV in children. Pretoria: National Department of Health South Africa, http://www.doh.gov.za.
(4) Sprague, C., Chersich, M.F. & Black, V., 2011. Health system weaknesses constrain access to PMTCT and maternal HIV services in South Africa: a qualitative enquiry. AIDS Research and Therapy, 8(10), pp.10-18.
(5) Holzemer, W.L. et al., 2007. A conceptual model of HIV/AIDS stigma from five African countries. Journal of Advanced Nursing, 58(6), pp.541-551.
(6) Kalichman, S.C. & Simbayi, L., 2003. HIV testing attitudes, AIDS stigma and voluntary HIV counseling and testing in a black township in Cape Town, South Africa. Sexually Transmitted Infections, 79(6), pp.442-447.
(7) Siyam’kela, 2003. HIV/AIDS stigma resource pack. The POLICY Project. Pretoria: The Center for the Study of AIDS.
(8) Holzemer, W.L. et al., 2007. A conceptual model of HIV/AIDS stigma from five African countries. Journal of Advanced Nursing, 58(6), pp.541-551.
(9) Sprague, C., Chersich, M.F. & Black, V. 2011. Health system weaknesses constrain access to PMTCT and maternal HIV services in South Africa: a qualitative enquiry. AIDS Research and Therapy, 8(10), pp.10-18.
(10) Ibid.
(11) Sprague, C., Chersich, M.F. & Black, V., 2011. Health system weaknesses constrain access to PMTCT and maternal HIV services in South Africa: a qualitative enquiry. AIDS Research and Therapy, 8(10), pp.10-18
(12) Thorsen, V.C., Sunby, J. & Martinson, F., 2008. Potential initiators of HIV- related stigmatization: ethical and programmatic challenges for PMTCT programs. Developing World Bioethics, 8(1), pp.43-50.
(13) Ibid.
(14) Israel-Ballard, K.A. et al., 2006. Acceptability of heat treating breast milk to prevent mother-to-child transmission of human immunodeficiency virus in Zimbabwe: a qualitative study. Journal of Human Lactation, 22(48), pp.48-60.
(15) Koricho, A.T., Moland, K.M. & Blysta, A., 2010. Poisonous milk and sinful mothers: the changing meaning of breastfeeding in the wake of epidemics in Addis Ababa. International Breastfeeding Journal, 5(12), pp.12-19.
(16) Ibid.
(17) Ibid.

Written by Tshadinyana Phetoe ⁽¹⁾