The contribution of a socio-cultural understanding of the HIV/AIDS epidemic to its management and treatment
Submitting Institution
University of HullUnit of Assessment
Social Work and Social PolicySummary Impact Type
SocietalResearch Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
The research into the main socio-cultural causes, consequences and
management of the HIV/AIDS epidemic in South Africa (undertaken by Dr Liz
Walker, in collaboration with colleagues in South Africa) has had
significant impact in South Africa on the development of the education and
training of health and social care professionals working in the context
of, and specializing in, HIV/AIDS. The programme of research has resulted
in the production of an educational and training resource that is used in
HEIs and other professional training settings. The educational resource is
unique as it foregrounds HIV/AIDS as the context within which all health
and social care practice is undertaken in Southern Africa.
Underpinning research
The AIDS epidemic in South Africa has been the fastest growing epidemic
in the world, with devastating personal, social and economic consequences.
Understanding the social and cultural factors which have fuelled the
epidemic has been paramount in changing behaviour and influencing policy
and practice in the field. The research outlined below has contributed
centrally to a social scientific understanding of HIV/AIDS in
resource-poor contexts.
This case study is built on a programme of research into the
socio-cultural aspects of HIV/AIDS. This research has identified the
dominance of HIV/AIDS in all health and social care practice in South
Africa and shaped an understanding of the social dimensions of the
epidemic which is critical to halting the spread of the epidemic and
influencing its management. The educational resource, now in its 3rd
edition (2010), was built on a body of scholarship which has three
strands:
- The first strand focused on the role of culture and cultural
practices in the treatment of HIV/AIDS. This was a
collaborative research project between the University of Hull (Walker)
and the University of the Witwatersrand, Johannesburg (Gilbert). The
contribution of the research expertise located at the University of Hull
was central to the successful completion of this project. The research
project was entitled, `The social and cultural complexity of adherence
to antiretroviral therapy (ART)'. The research was conducted with health
workers and people living with HIV/AIDS in a state health clinic in
Hillbrow, Johannesburg, during 2005/6. The administration and management
of ART, particularly during this initial period of state funded
provision in South Africa, was highly complex — public health services
were (in general) ill-equipped and under-resourced and the disease
highly stigmatised. This externally funded research project aimed to
better understand the social and cultural barriers to effective
treatment and change the ways in which ART was delivered in HIV/AIDS
clinics. The treatment of HIV/AIDS is thus also a cultural process,
particularly in the South African context. This research identified the
stigmatised nature of `specialised AIDS clinics'; the ways in which ART
`marked' and stigmatised patients; created unwanted and forced
`disclosure' to employers / family members etc. The research focused on
the need to incorporate these understandings into planning service
provision. This project resulted in two journal articles in leading
international public health / health journals and has been incorporated
into the educational and training resource.
- The second strand of research offered a gendered analysis
of the HIV/AIDS epidemic. The research study which demonstrates this was
a study entitled Masculinities, Risk and HIV/AIDS. It aimed to
examine the ways in which men (in particular) and unequal gender
relations more broadly are key drivers of the epidemic in South Africa
(5.4). This research demonstrates how dominant hegemonic masculinities
have led to men engaging in risky sexual practice (e.g. multiple sexual
partners, unsafe sex), placing them (and women) at high risk for HIV
infection. The field work for this study was conducted in Johannesburg,
South Africa during 2002/3. The data was analysed and written up at the
University of Hull, from 2004, drawing on the expertise at that
institution (Walker). This research resulted in the publication of an
edited collection, Men Behaving Differently. South African men since
1994 (2005) and a journal article in a leading international
journal in the field (Culture, Health and Sexuality). The edited
collection was the product of research collaboration between the
University of Hull (Walker) and the Wits Institute for Social and
Economic Research, University of the Witwatersrand, Johannesburg (Reid).
- The third strand addressed the historical and social causes
of HIV/AIDS in southern Africa and resulted in the publication of a
book, Waiting to Happen: HIV/AIDS in South Africa (2004). The
monograph was based on a wide range of research presented at an
international social science HIV/AIDS conference, held at the University
of the Witwatersrand, Johannesburg, in 2001. The book, commissioned by
the History Workshop, University of the Witwatersrand, sought to
popularise and make accessible, empirical, academic research. The
conference on which the text is based was the first of its kind in South
Africa and brought together academics, government ministers, HIV/AIDS
activists and NGOs. This book was an important corrective to the
predominant emphasis on bio-medical explanations of, and responses to,
HIV/AIDS and argued for the need for wide-spread availability of
Anti-Retroviral Therapy (ART) at a time when the government did not
recognise its importance in treating and preventing HIV/AIDS. This text
has strongly informed the third edition of the educational training
resource identified above. It was published in South Africa and the US.
References to the research
Liz Walker is the only researcher based at the University of Hull (from
2004). These publications are the result of collaborative research
projects (identified above).
Gilbert, L. and Walker, L. (2010) `My biggest fear was that people would
reject me once they knew my status...' — stigma as experienced by patients
in an HIV/AIDS clinic in Johannesburg, South Africa, Health and Social
Care in the Community, 18 (2) pp 139-146. (Impact factor 1.054,
ranked 9/32 in Health / Social Work related Journals).
Gilbert, L. and Walker, L. (2009) `They (ARVs) are my life, without them
I am nothing' — experiences of patients attending a HIV/AIDS clinic in
Johannesburg, South Africa. Health and Place, 15 (4), pp
1123-1129. (Impact factor 2.993, journal ranking 6/76 in public,
environmental and occupational health category).
Reid, G. and Walker, L. (eds) (2005) Men Behaving Differently. South
African Men since 1994. Cape Town: Double Storey/ Juta.
Gilbert, L., Selikow, T. and Walker, L. (2010, 3rd edn) Society,
Health and Disease in a time of HIV/AIDS. Johannesburg: Pan
Macmillan.
Walker, L., Reid, G. & Cornell, M. (2004) Waiting to Happen.
HIV/AIDS in South Africa. Colorado: Lynne Rienner Publishers /Cape
Town: Double Storey Books/Juta.
Details of the impact
The central impact which draws together all three research strands (2.1,
2.2, 2.3) is the education and training resource `Society, Health and
Disease in a time of HIV/AIDS' (2010, 3rd edn). This
resource has been widely used by health and social care professionals
across South Africa since the first edition was published in 1996 (5.5;
5.6). The third edition (2010) involved substantial reworking, the
addition of much new material and a change in title to reflect a more
central emphasis on HIV/AIDS. Pan Macmillan records indicate that from
2002, 6594 copies have been purchased across southern Africa, 3608 have
been sold since 2008 (5.3). The resource has a distinctive format,
designed for training in both urban and rural settings in South Africa. It
is interactive, it includes original research based material (written by
the authors), key readings (including published research by the authors)
and educational tasks (drafted by the authors) designed to help the
student / practitioner work through the material and ideas presented
(5.5). This training resource enables students and health care workers to
understand the social and cultural basis of HIV/AIDS — transmission,
treatment and management — thus influencing their practice with HIV
positive service users in particular (5.6).
The resource has been prescribed in nine (of seventeen traditional and
comprehensive) HEIs throughout South Africa since the publication of the
first edition. These include: The University of South Africa, University
of Kwa-Zulu Natal, Pietermaritzburg, University of Cape Town, University
of the Western Cape, University of the Witwatersrand, University of
Namibia, Baragwanath Nursing College, Democratic Nursing Organisation of
South Africa. The main beneficiaries of this resource are health and
social care professionals and people living with HIV/AIDS who receive a
more culturally and social informed service (5.4). The success of the
first and second editions led Pan Macmillan to support the production of
the third edition.
The three research strands identified in section 2 (all of which
influenced the production of the educational resource) led to other
publications, thus having wider impacts on policy formulation and public
debates on HIV/AIDS. This was particularly important in the context of
initial government refusal to provide ART to people living with HIV/AIDS
(see above references to the research). In the foreword to the book Waiting
to Happen: HIV/AIDS in South Africa, Mr Justice Edwin Cameron stated
`The book draws on an impressive and authoritative range of papers that
address the social, cultural and historical roots of the epidemic in a
region heavily burdened by AIDS. It is therefore published at an acute
time' (pg 7) (5.1). During the period in which the research was carried
out and published, government policy in South Africa changed to adopt a
centrally funded roll-out of ART, significantly changing the trajectory of
the epidemic. This research was part of a body of social science research
which contributed to this policy change. All of the projects have received
external funding and have involved international collaboration.
Waiting to happen: HIV/AIDS in South Africa was also published in
a separate version in the United States. In 2004, 1500 copies of this US
edition were printed — only 63 now remain in stock (5.2). This text was
recommended reading on a course at Yale University, Aids in Africa,
between 2006/ 09.
The body of scholarship which has as its primary focus the socio-cultural
context of HIV/AIDS has been published in different formats. The research
has been published in leading international journals of medicine and
public health thus informing academic and scholars working in the area.
However, in the context of HIV/AIDS in resource poor countries it is
incumbent on scholars to produce and reproduce strong research material in
a way which will serve to combat the epidemic and improve the quality of
life and services for those people living with HIV/AIDS. The training
resource and the strands of research identified above have succeeded in
doing this (5.4).
Other researchers contributed to this research. `The social and cultural
complexity of adherence to ART', was conducted jointly with Professor Leah
Gilbert (University of the Witwatersrand, Johannesburg). It was funded by
the National Research Foundation, South Africa (R192 000, 00). `Waiting to
Happen: HIV/AIDS in South Africa' was written jointly with Graeme Reid now
Human Rights Watch (NY), Morna Cornell, University of Cape Town.
Masculinities, Risk and HIV/AIDS, was funded by the National Research
Foundation, South Africa (R34000.00)
Sources to corroborate the impact
- Foreword `Waiting to happen' by Edwin Cameron, Constitutional Court
Judge and the first senior South African official to disclose his HIV
positive status.
- Email correspondence Lynne Rienner Publishers, Boulder, Colorado. The
sample list of bookstores which ordered this title include: Syracuse
Bookstore, Syracuse NY, Yale Barnes & Noble, Folletts Bookstore — NC
Central, Durham NC, Luther College Bookstore, Iowa, Univ of Oklahoma
Bookstore, Ratecliffe Textbooks in Oklahoma, Baker & Taylor,
Amazon.com.
- Email correspondence business analyst, Pan Macmillan.
- Testimonial Chief Operating Officer, Anova Health Institute (HIV/AIDS
NGO/Professional body)
- Testimonial PhD candidate / lecturer, Department of Sociology,
University of Witwatersrand, Johannesburg
- Testimonial Emeritus Professor, Department of Sociology, University of
Witwatersrand, Johannesburg