Balancing Between Normality and Social Death: Black, Rural, South African Women Coping With HIV/AIDS

Dageid, Wenche; Duckert, Fanny

doi:10.1177/1049732307312070

Cited by 40 publications

(47 citation statements)

References 38 publications

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“…As is true for studies in industrialised settings, existing studies from low-and middle-income countries predominately focus on the experience of HIV-related stigma, with less attention to people's resistance strategies (Dageid & Duckert, 2008;Makoae, Greeff, Phetlhu, et al, 2008;Poindexter, 2005;Rohleder & Gibson, 2006;Soskolne, 2003). In sub-Saharan Africa, studies of HIV-related stigma are predominately among populations where ARV treatment is not easily or freely available (Campbell, Foulis, Maimane & Sibiya, 2005;Kahn, 2004;Lindsey, Hirschfeld & Tlou, 2003;Olenja, 1999;Pool, Nyanzi & Whitworth, 2001;Rohleder & Gibson, 2006).…”

Section: Introductionmentioning

confidence: 99%

Stigma, identity and resistance among people living with HIV in South Africa

Goudge

Ngoma

Manderson

et al. 2009

SAHARA-J: Journal of Social Aspects of HIV/AIDS

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AIDS-related stigma can cause delays in testing, poor treatment adherence, and greater numbers of new infections. Existing studies from low-and middle-income countries focus on the negative experiences of stigma, and few document resistance strategies. In this article we document the diverse journeys of people living with HIV in South Africa, through ill health, testing, disclosure, and treatment, and their responses to stigma. The research questions of focus are: Why are some able to resist stigma despite poverty and gendered oppression, whereas others are not? Why are some people able to reach closure, adapting to diagnosis, prognosis and finding a social context within which they resist stigma and can live with their illness? The illness narratives reported here show that the ability to resist stigma derives from a new role or identity with social value or meaning. Generation of a new role requires resources that are limited due to poverty, and exacerbated by unstable family relations. People who are socially marginalised have fewer opportunities to demonstrate their social value, face the greatest risk of transmission, re-infection and failure to adhere to medication, and require particular support from the health sector or community groups. Keywords: stigma, resistance, identity, HIV/AIDS, South Africa.Jane Goudge, PhD, is a Senior Research Officer at the Centre for Health Policy, School of Public Health at the University of the Witwatersrand, Johannesburg. She joined the Centre in 1998 and since then has conducted research on a range of health policy and system issues including access to health care and why people drop out of treatment, the affordability of care, social protection, and health care financing.

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Section: Introductionmentioning

confidence: 99%

Stigma, identity and resistance among people living with HIV in South Africa

Goudge

Ngoma

Manderson

et al. 2009

SAHARA-J: Journal of Social Aspects of HIV/AIDS

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“…This is not to say that communal balancing was idyllic, because communities could oppress as well as facilitate their members' balance or balancing. South African women with HIV, for example, were only able to focus on achieving balance for themselves if they had fulfilled their culturally constructed duties to men (Dageid & Duckert, 2008).The internalist balancer. In contrast, some people viewed and enacted balance or balancing primarily on their own, as part of a personal life project (Figure 1, part D).…”

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confidence: 99%

Balance, Balancing, and Health

2011

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In this article we explore the concept of balance in the context of health. We became interested in balance during a grounded theory study of lay conceptualizations of cancer risk, in which participants were concerned with having a good life, which relied heavily on balancing processes. This led us to the qualitative literature about balance in the context of health, which was large and in need of synthesis. We identified 170 relevant studies and used Thomas and Harden's technique of "thematic synthesis" to identify key balance-related themes and to develop these into more abstract analytic categories. We found that balance and balancing were salient to people in three health-related contexts: health maintenance, disease or disability management and lay or professional caregiving. In each of these contexts, balance or imbalance could be a state or a process. In addition, those using the word had either an internally-or externally focused orientation to the world around them. Clinicians and public health practitioners might benefit from using these insights in their research and communication.Keywords communication, medical; concept analysis; health and well-being; health promotion; qualitative analysis Qualitative research sheds light on the ways in which people understand and experience health, disease and health care. Qualitative researchers elicit rich accounts of people's beliefs about specific diseases and experiences of particular illnesses and also empirically examine more abstract concepts such as risk (e.g., Hay, Shuk, Cruz, & Ostroff, 2005), health (e.g., Smith-DiJulio, Windsor, & Anderson, 2010), disability (e.g., Lutz & Bowers, 2005), community (e.g., Wong, 2 Sands, & Solomon, 2010), and quality of life (e.g., Hendry & McVittie, 2004). Such concepts are central to communication and have a powerful capacity to organize thought and shape behavior but their meanings cannot be assumed. This makes the systematic and comparative study of concepts is necessary (Quinton, 1988). Qualitative research also allows us to explore lay knowledge and its meanings. As Popay and Williams have argued in relation to public health:If research in the field of public health is to develop more robust and holistic explanations for patterns of health and illness in contemporary society, then it must utilize and build on lay knowledge-the meanings health, illness, disability and risk have for people (Popay & Williams, 1996, p. 760).In this research we explored the meanings of one abstract concept with particular salience in health: balance. We became interested in this concept while conducting a grounded theory study into lay people's conceptualizations of cancer risk. The central question in the study was: how do lay people understand the risk of getting cancer? We found that people thought of cancer risk only when cancer was personally salient. Their focus was not on disease but rather on having a good life, and this relied on balancing processes.In retrospect, this is unsurprising, given that balance is a concept th...

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“…These studies describe a cultural context where families play a central role in the experiences of PLWHA, gender inequality characterizes the experience of female PLWHA, societies place high value on childbearing and parenting, PLWHA encounter extreme levels of stigma and discrimination, and faith and spirituality are considered important resources for coping with HIV/AIDS (e.g., Dageid and Duckert, 2008;Greeff et al, 2008;Iwelunmor et al, 2010;McArthur et al, 2013;Mupenda et al, 2014). For example, Saleem et al (2016) interviewed 10 female and 11 male PLWHA in Tanzania to study their post-diagnosis childbearing experiences.…”

Section: The Cultural Contexts Of Plwhamentioning

confidence: 99%

An Institutional Field of People Living with HIV/AIDS Organizations in Tanzania: Agency, Culture, Dialogue, and Structure

Olufowote

2017

Front. Commun.

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Communication research on public health organizations and people living with HIV/ AIDS (PLWHA) have paid insufficient attention to PLWHA organizations. These organizations, constituted and operated by PLWHA, advocate on behalf of PLWHA with more powerful institutions in society and serve as sources of empowerment and support. I drew on the culture-centered approach to health communication and institutional perspectives on health organizations to explore PLWHA organizations in Tanzania, namely, their cultural and structural contexts, agency, and dialogue. Tanzania has 1.5 million PLWHA and a 5.3% adult prevalence rate that ranks it as 12th highest in the world. Through interviews with leaders of 10 PLWHA organizations, I found a cultural context of HIV stigma and discrimination, a structural context consisting of corruption and bureaucratic politics in governing bodies as well as lack of access to resources, agency to impact PLWHA and members of society in a variety of ways, and processes of dialogue within advocacy networks of PLWHA organizations and in network collaborations with the government. I conclude with implications for improving the organizations' interactions with their structural context and for developing the contribution from the culture-centered approach to health communication on structures as health organizations and systems.Keywords: culture-centered approach, hiV/aiDs, institutional perspectives on health organizations, people living with hiV/aiDs organizations, sub-saharan africa People living with HIV/AIDS (PLWHA) organizations are understudied in communication research. PLWHA organizations are non-profit organizations (NPOs) constituted and operated primarily by volunteers who are PLWHA. These organizations emerge out of dissatisfaction with responses to the HIV/AIDS epidemic by more powerful societal actors (e.g., government); they pursue the interests of PLWHA by advocating on behalf of PLWHA in their communities and societies (Maguire et al., 2001). It is important to focus on PLWHA organizations because PLWHA in the Global South face continuing problems such as stigma and discrimination (Okoror et al., 2014). Moreover, these organizations have implications for the empowerment, support, and wellbeing of PLWHA.Although one body of communication research on health organizations has recognized a variety of public health organizations (e.g

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Balancing Between Normality and Social Death: Black, Rural, South African Women Coping With HIV/AIDS

Cited by 40 publications

References 38 publications

Stigma, identity and resistance among people living with HIV in South Africa

Stigma, identity and resistance among people living with HIV in South Africa

Balance, Balancing, and Health

An Institutional Field of People Living with HIV/AIDS Organizations in Tanzania: Agency, Culture, Dialogue, and Structure

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