Background: Globally, the number of young people living with perinatally acquired HIV
continues to rise, mainly in Africa, including Malawi. Advances in antiretroviral therapy
mean that perinatally infected young people are increasingly surviving into adulthood.
However, to date, this group has received relatively less attention in the field of HIV
care. There is a need for the development of appropriate care and support services for
this group. Although there is a growing body of knowledge about medical, sexual and
reproductive health issues for this group, relatively less attention has been given to
understanding other aspects of Ç}µvP‰}o[•
life experiences. In 2010, HIV prevalence
among young people aged 15 - 19 years in Malawi was significantly higher among
females (4.2%) than males (1.3%). Additionally, young women affected by HIV may be
particularly vulnerable to sexual abuse and/or normative expectations such as
subordination in sexual relationships. There is a gap in our current understanding of the
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experiences and challenges as they grow up with HIV. In addition, it is unclear whether
HIV services meet the varying needs of the young women as they grow into adulthood.
Hence, this thesis focuses on young women rather than both genders.
Aim: To determine the meaning of the experience of growing up with perinatally
acquired HIV for young women aged 15-19 in Malawi, exploring the complexities of
their lives in order to understand their health outcomes within the wider socio-cultural
and structural context.
Objectives: were broadly formulated into two areas:
To explore the psychosocial, sexual and reproductive experiences of growing up with
perinatally acquired HIV for the young women
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To determine the structural factors, perceptions, values and aspirations
influencing young Á}uv[•Æ‰Œ]v•šZÇPŒ}Áµ‰]šZ,/sš}µošZ}X
ii
To explore the health, sex and relationship challenges for young women growing up
with perinatally acquired HIV and the impact of the current HIV related and sexual and
reproductive health (SRH) services.
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To identify the psychosocial and SRH challenges of the young women as they are
growing up to adulthood.
™
To identify the issues and challenges encountered by caregivers as they look
after young women growing up with HIV.
™
To identify the issues and challenges encountered by service providers as they
provide health care to the young women growing up with HIV.
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To assess the impact of the existing health services on the needs of the young
women as they grow up to adulthood.
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To identify the most important and realistic strategies in meeting the needs of
perinatally HIV infected young women as they grow up to adulthood in Malawi.
Methods: A qualitative •šµÇ•]PvÁ•}‰šÁZŒÇZZ•[}u‰Œ]•
young woman aged 15-19 years, a nominated primary caregiver and a service provider.
In-depth interviews were used to collect data. The interviews with the young women
were based on an innovative visual method, ZuÇ
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discussion on sensitive topics. The case study approach enabled more comprehensive
understanding }(Ç}µvPÁ}uv[•Æ‰Œ]v•XdZ•šµÇ]voµ
14 cases (i.e. a total
of 42 participants).
Findings: Young women endured multiple losses and HIV stigma that negatively
impacted upon their sense of self and belonging. Many lived with an enduring sense of
sadness that was rarely openly addressed. Emotional, material and social support were
essential in helping young women to build a sense of identity and to carve out a
•µ(µoo](UµšÁ}uv[••š}•µZŒ•}µÁŒZ]PZoÇÀŒ]oXŒP]ÀŒ•[
resources were often over-burdened and several lacked the capacity to provide young
women with an adequately •µ‰}Œš]ÀvÀ]Œ}vuvšXz}µvPÁ}uv[•šŒP]•š}•l
love, acceptance or material advancement often led them into complex situations
where they were taking sexual risks or had little control over their reproductive health.
The study found that both service providers and caregivers often turned a blind eye to
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sexual and reproductive health
iii
outcomes. Accessing SRH care was hindered by normative cultural practices that made
it hard for providers, caregivers or young women to talk about relationships, sexual
behaviour or contraception.
Conclusion: Addressing the complex and inter-linked needs of perinatally infected
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One way forward might
be to explore ways in which services could develop integrated models of care, offering a
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practical/material support, expanded contraceptive services and support for young
women who become pregnant or have children. Such service developments will require
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in
particular. Additional training may be required to help providers identify ways in which
they can engage better wišZ
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The burden of care
experienced by caregivers and the difficulties they faced in meeting the needs of their
young women also indicate that HIV services need to include ways }(
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Policy makers and non-governmental organisations need to aware of young
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get involved in empowering the young women with stable
income generating activities or sources of income such employment (not hand-outs).