A thesis submitted to the School of Public Health, Faculty of Health Sciences,
University of Witwatersrand in fulfilment of the requirements for the
degree
of
Doctor of Philosophy
Johannesburg, South Africa
2017. / Introduction: As Prevention of Mother-to-Child Transmission and HIV treatment
programmes have scaled-up, more women are being kept alive and fewer children are
infected with HIV. One of the challenges that HIV-infected women face is how to disclose
their own HIV status to their children. The disclosure literature suggests that the main reason
for women’s HIV-disclosure is to obtain social support, including financial, practical and
emotional assistance, to help women to manage their HIV infection. HIV-related stigma, lack
of knowledge of how to disclose, uncertainty about a child’s reaction to disclosure, and a
perception that a child lacks the developmental capacity to handle HIV-disclosure are factors
that affect disclosure decisions. HIV-disclosure is considered a critical element in
strengthening the capacity of families in the continuum of HIV care.
In 2011, the World Health Organization published guidelines for parental HIV-disclosure to
children. These guidelines recommended full disclosure to primary school-aged children
(from 6 years up to 12 years) and partial disclosure to younger children. Globally, but
particularly in sub-Saharan Africa, HIV-disclosure interventions are lacking. The Amagugu
maternal HIV-disclosure intervention was developed, piloted and evaluated between 2010
and 2012 to assist mothers to disclose their HIV status to their HIV-uninfected children. The
intervention enrolled 281 mothers and their primary school-aged HIV-uninfected children,
and aimed to increase maternal capacity to disclose their HIV status. This was implemented
through six lay counsellor- led, home-based, sessions, including a health intervention at a
primary health care clinic. The Amagugu intervention was acceptable and feasible in a high
HIV prevalence, resource-poor, rural setting, and increased maternal HIV-disclosure to
primary school-aged HIV-uninfected children.
Methods: This PhD study was nested within the Amagugu study and was conducted at the
Africa Centre for Population Health, now the Africa Health Research Institute (AHRI), in the
Hlabisa sub-district of Umkhanyakude, northern KwaZulu-Natal, South Africa. The aim of
this PhD was to explore, in more depth, the experiences of women enrolled in the Amagugu
intervention, including their experiences of the health intervention.
Both quantitative and qualitative methods were used. The sample for the PhD study
comprised three groups: 1) all mothers from the Amagugu study (N=281); 2) a sub-sample of
mothers from the Amagugu study (N=20) and 3) health care staff employed in the clinics
where the Amagugu study took place (N=87). The quantitative data used in the PhD study
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were collected at different time points from the 281 women, using questionnaires specifically
designed for the Amagugu study, including baseline and post-disclosure questionnaires. Data
on the clinic experiences were collected from the 281 mothers using semi-structured
questionnaires administered after the health intervention. Semi-structured questionnaires,
specifically designed for this PhD study, were administered to the clinic staff during the
health intervention. Qualitative data were collected using semi-structured questionnaires with
the clinic staff (N=87), nine focus groups with clinic staff after the health intervention, and
in-depth and semi-structured interviews with the sub-sample of women (N=20) who were
enrolled after the Amagugu intervention had been completed.
The University of KwaZulu-Natal Biomedical Research Ethics Committee (BREC Ref: BF
144/010) and the University of Witwatersrand Human Research Ethics Committee (Ref:
R14/49) granted ethical approval for the PhD study.
Results: The results reported in this PhD are drawn from four papers written during the
course of this PhD, (three published papers and one paper accepted for publication). The
results have been integrated from the data collected from the women and health care staff that
were used for the PhD, and a literature review that resulted in a publication.
The three main themes that emerged from the PhD are:
1. HIV-related stigma and HIV-disclosure: The literature review revealed that fear of
HIV-related stigma was the most common reason for non-HIV-disclosure of HIV to
both adults and children. In the sub-sample of 20 women, only two women had not
disclosed to other adults due to fear of HIV-related stigma prior to the intervention.
Those who had disclosed to only some, but not all other adults in their close social
networks, reported HIV-related stigma at household (6/18), community (2/18) and
clinic levels (1/18). Although HIV-related stigma was reported, there was also a
normalisation of HIV and antiretroviral therapy (ART) in some communities due to
the high social exposure to HIV in the study area. Qualitative data from the focus
groups with clinic staff, and interviews with the sub-sample of 20 women, recognised
that children’s exposure to HIV education has played a role in the normalisation of
HIV.
2. HIV-disclosure and family strengthening: The majority of women in the sub-sample
had disclosed their HIV status to other adults including their partners, friends and
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other relatives, prior to the Amagugu intervention. Most women reported living
positively with HIV and receiving necessary support from those to whom they had
disclosed. Of those women who had disclosed to partners, about half had disclosed to
their partners first before disclosing to any other adults. Their partners had mixed
reactions to disclosure but were overall supportive. Whilst women’s original fear of
disclosing their HIV status to their children had been that they would be stigmatised
by their children, on the contrary, most children were supportive. The majority of
women in the sub-sample expressed that they would advise other women in similar
circumstances to disclose their HIV status to their children for social support, because
disclosure increased family cohesion and improved antiretroviral therapy adherence.
The health staff echoed the same sentiments regarding social support and family
cohesion in the focus groups.
3. HIV-disclosure and access and adherence to HIV treatment: The interviews with the
sub-sample of 20 women, and the semi-structured questionnaires and focus groups
with 87 clinic staff, all revealed that participants agreed that whilst maternal HIVdisclosure
was challenging, it was necessary for women to obtain social support from
their children. Health care staff also agreed that maternal HIV-disclosure to their
children was instrumental in supporting HIV-infected women to access and adhere to
their HIV treatment. The clinic staff recognised the role they could play in health
promotion and increasing opportunities for children to participate in activities at
health facilities, but acknowledged that they needed support to address logistical
constraints that hinder child-friendliness in health facilities, including heavy
workloads, poor clinic infrastructure and staff shortages. The health intervention
provided clinic staff with child-friendliness training and materials that were found to
be acceptable and feasible, and yielded encouraging results.
Discussion: This study contributes to the literature about the experiences of African, HIVinfected,
rural women with HIV-uninfected children living in an ART-era. In particular the
experiences of women who have participated in a maternal HIV disclosure intervention in
Africa have not been explored previously. The findings of this work indicate that a decade
after being diagnosed with HIV, women in this resource-poor setting are generally living
positively with HIV. However, HIV-disclosure to other adults does not necessarily translate
xviii
to disclosure to children, and parents require specific interventions to assist them with this,
and to understand the development and level of understanding of their children.
Conclusion: Despite concerns raised by women prior to the intervention, including fear of
HIV-related stigma and a perception that children lacked the developmental capacity to grasp
knowledge about maternal HIV status, the women in this study reported no regrets in
disclosing their status to children. They also reported receiving support from their children,
which in turn, assisted them with adherence to their own HIV treatment. Future studies could
test the same Amagugu intervention materials in a group of HIV-infected women with
uninfected children not previously involved in research to explore whether similar results are
found. / MT2017
| Identifer | oai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:wits/oai:wiredspace.wits.ac.za:10539/23161 |
| Date | January 2017 |
| Creators | Mkwanazi, Ntombizodumo Brilliant |
| Source Sets | South African National ETD Portal |
| Language | English |
| Detected Language | English |
| Type | Thesis |
| Format | Online resource (1 volume. (various pagings)), application/pdf |
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