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Background: HIV remains responsible for an estimated 40% of mortality in South African pregnant women and their children. To address these avoidable deaths, eligibility criteria for antiretroviral therapy (ART) in pregnant women were revised in 2010 to enhance ART coverage. With greater availability of HIV services in public health settings and increasing government attention to poor maternal-child health outcomes, this study used the patient’s journey through the continuum of maternal and child care as a framework to track and document women’s experiences of accessing ART and prevention of mother-to-child HIV transmission (PMTCT) programmes in the Eastern Cape (three peri-urban facilities) and Gauteng provinces (one academic hospital).Results: In-depth interviews identified considerable weaknesses within operational HIV service delivery. These manifested as missed opportunities for HIV testing in antenatal care due to shortages of test kits; insufficient staff assigned to HIV services; late payment of lay counsellors, with consequent absenteeism; and delayed transcription of CD4 cell count results into patient files (required for ART initiation). By contrast, individual factors undermining access encompassed psychosocial concerns, such as fear of a positive test result or a partner’s reaction; and stigma. Data and information systems for monitoring in the three peri-urban facilities were markedly inadequate.Conclusions: A single system- or individual-level delay reduced the likelihood of women accessing ART or PMTCT interventions. These delays, when concurrent, often signalled wholesale denial of prevention and treatment. There is great scope for health systems’ reforms to address constraints and weaknesses within PMTCT and ART services in South Africa. Recommendations from this study include: ensuring autonomy over resources at lower levels; linking performance management to facility-wide human resources interventions; developing accountability systems; improving HIV services in labour wards; ensuring quality HIV and infant feeding counselling; and improved monitoring for performance management using robust systems for data collection and utilisation. © 2011 Sprague et al; licensee BioMed Central Ltd.
The choice of study sites was purposive, aiming to compare different settings, including peri-urban, resource-limited areas of the Eastern Cape Province and an urban setting in Gauteng Province. Though the provinces have a similar HIV prevalence (30% among pregnant women), they have marked differences. In 2008, 70% of the 6.4 million residents of the Eastern Cape were classified as poor, 30% as unemployed and 94% received care in the public health system [14]. Gauteng’s population is larger (an estimated 10.5 million), with better socio-economic indicators: fewer are classified as poor (42%), unemployed (23%), or reliant on public health services (78%) [15]. The study took place between March 2008 and February 2009. Four public sector facilities were studied, namely: an academic hospital in Johannesburg, Gauteng; and in the Eastern Cape, an academic hospital, a regional hospital and a primary health care clinic. The Eastern Cape facilities only began implementing ART for pregnant women midway through the study, as recommended in 2008 national guidelines; whereas the Johannesburg facility had already done so in early 2008 [16]. Ethics approval was granted by both provincial departments of health, by the Human Research Medical Ethics Committee of the University of the Witwatersrand (protocol number M080119) and Walter Sisulu University, Eastern Cape (protocol number 00032-07). All interviewees gave informed consent. Where individuals gave consent for recording, interviews were audio taped. About 40 respondents, across respondent categories, declined to be taped, likely due to concerns about confidentiality of their views, with health personnel perhaps fearing how the taped information might be used and possible punitive action in their workplace. To allow for triangulation, in-depth interviews were undertaken with patients (83 HIV-positive women); caregivers (32 female caregivers of HIV-positive children); and key informants (38), including HIV and public health specialists, academics, nurses, doctors and HIV lay counsellors. Patients’ files (n = 83) were reviewed, allowing for an independent assessment of health provider action and HIV services delivered during antenatal care, childbirth and postpartum. Where available, socio-demographic data (e.g., income, access to electricity, piped water and flush toilet) and HIV management (ART regimen, counselling notes and PCR testing of infants) information were extracted. All interviews were done by the principal investigator with translators present during interviews – which if in isiXhosa or isiZulu – were translated immediately into English to allow for probing. Interview transcripts and patient data were reviewed by the investigators and, using grounded theory, key themes and core categories were documented as they emerged, aiming to reach data saturation [17]. The rationale for selecting qualitative methods is that previous research in South Africa has predominately focused on quantitative measures of PMTCT ‘coverage’. This has included examining barriers to rolling out a minimum package of services for pregnant women. Several authors have documented PMTCT performance against numerical targets, mainly within the ‘PMTCT cascade’, and broadly assessed programme effectiveness [18,19]. While undoubtedly important, existing research has neglected the often fraught interface between patients and the health system – particularly women’s experience of health services and her consequent health-related behaviour (e.g., returning for repeat ANC visits or dropping out of the public health system). Such behaviour is undeniably rooted within larger contexts of socio-cultural norms (e.g., around breast feeding and HIV stigma) as well as the harsh economic realities facing women with HIV. This nexus between individuals and systems fundamentally impacts on the degree to which a pregnant woman is able to benefit from prevention and treatment interventions. Against that background, qualitative methods were employed to understand women’s experiences of HIV services, and of delays or impediments to these services.
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