Browsing by Author "Mills, Elizabeth"
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- ItemOpen AccessBeyond the Disease of Discrimination: A Critical Analysis of HIV-Related Stigma in KTC, Cape Town(2004) Mills, ElizabethThe aim of this paper is to explore the nature and dynamics of HIV-related stigma in the KTC with a view to understand the impact of stigma on the lives of HIV+ people and their social environment. This paper draws on qualitative research methods, including focus groups, interviews and participant observation. Research was conducted in KTC, a shack settlement in Cape Town, with a group of home-based carers, and their HIV-positive clients, in 2003 and 2004.? The complex matrix of factors, like socio-economic and gender inequality, which perpetuate HIV-related stigma in the context of KTC, is explored through this paper.? This paper argues that social networks in KTC can play both a constructive and destructive role in facilitating care, and HIV-related stigma respectively. Finally, the research and findings of this paper point to the need to shift away from the notion that stigma is experienced by the individual to a more multifaceted understanding of the impact of HIV-related stigma on the HIV+ individual's social environment.
- ItemOpen AccessFraming rights and responsibilities: accounts of women with a history of AIDS activism(BioMed Central Ltd, 2011) MacGregor, Hayley; Mills, ElizabethBACKGROUND: In South Africa, policy with respect to HIV/AIDS has had a strong rights-based framing in line with international trends and in keeping with the constitutional overhaul in the post-Apartheid era. There have also been considerable advances since 1994 towards legal enshrinement of sexual and reproductive health rights and in the provision of related services. Since HIV in this setting has heavily affected women of reproductive age, there has been discussion about the particular needs of this subgroup, especially in the context of service integration. This paper is concerned with the way in which HIV positive women conceptualise these rights and whether they wish and are able to actualise them in their daily lives. METHODS: In 2003 a group of women involved with the Treatment Action Campaign and Medicines Sans Frontieres participated in an initiative to 'map' their bodies as affected by the virus. A book containing the maps and narratives was published and used as a political tool to pressure the government of the day to roll out antiretroviral therapy (ART) to the population. In 2008, the authors coordinated an initiative that involved conducting follow-up in-depth interviews in which five of these women reflected on those body maps and on how their lives had changed in the intervening five years since gaining the right to treatment through the public sector. RESULTS: Drawing upon this qualitative data and published sources, these new accounts are analysed in order to reflect the perspectives of these women living with chronic HIV with respect to their sexual relations and fertility desires. The paper reveals difficulties faced by these women in negotiating sexual relationships and disclosure of their HIV positive status. It focuses on how they perceive relative responsibilities in terms of taking preventative measures in sexual encounters. Women adopt tactics within a context characterised by various inequalities in order to 'make do', such as by remaining silent about their status. Concerns about childbearing can be addressed by information and support from a health care worker. CONCLUSIONS: Women's experience of HIV as a chronic illness and the need to adhere to ART, is linked to the way in which the language of responsibility can come to counter-balance a language of rights in treatment programmes.
- ItemOpen AccessFrom Rhetoric to Reality: An Empirical Appraisal of South Africa's 2007-2011 HIV/AIDS National Strategic Plan(2009) Mills, Elizabeth; Magazi, BusisiweThe unprecedented and collaborative development of the 2007 - 2011 HIV & AIDS and STI National Strategic Plan (NSP) reflects government and civil society's joint commitment to enhancing the lives of South Africans in the face of the country's HIV epidemic. This paper explores the practice of policy; areas of dissonance and convergence between health policy rhetoric and reality are analysed through the lens of a qualitative research study conducted in 2008 with 76 HIV-positive respondents in Khayelitsha, Cape Town. Through an analysis of health policy and corresponding research findings, this paper seeks to strengthen policy implementation and interventions for people affected by HIV in South Africa. The paper centres on the following three key priorities, as stipulated by the NSP: HIV prevention; treatment, care and support; human rights and access to justice. In line with the first priority, the research findings highlight the value of tailored prevention programs for sero-discordant couples to prevent horizontal transmission, and for HIV-positive couples to prevent HIV re-infection. The second priority, the provision of treatment, care and support, is negatively constrained by limited human and infrastructural capacity within the national health system. This finding points to the value of implementing task shifting in order to improve health care outcomes, particularly for rolling out antiretroviral programs in line with the NSP target to reach 80% of those in need of ARVs. The third priority underlines the importance of addressing HIV as a human rights issue; the findings indicate that the respondents continue to struggle with experiences of stigma within their community, but their experience of stigma within their families has significantly decreased. This paper proposes a set of recommendations based on the findings of this study in order to engage directly, and constructively, with the NSP's key policy priorities.
- ItemRestrictedFrom the physical self to the social body: expressions and effects of HIV-related stigma in South Africa(Wiley, 2006) Mills, ElizabethThis paper discusses some of the forms and consequences of HIV-related stigma in a community living in KTC, an informal settlement in South Africa, drawing on ethnographic research findings. The first section presents a dynamic form of stigma sign language that is used to label the HIVpositive 'other' in this community. The second section highlights some of the pernicious consequences of HIV-related stigma, including fear of disclosure and downward social mobility, and the way in which these prompt some HIV-positive people to avoid local clinics and treatment altogether, and drive others to mask or hide the fact that they are receiving medical treatment, such as antiretroviral drugs.
- ItemOpen AccessHIV illness meanings and collaborative healing strategies in South Africa(2006) Mills, ElizabethTraditional health care practices were formally recognised and advocated by the World Health Organisation (WHO) in 1978. The implications of the WHO’s directive have been diverse, and have shifted over the subsequent three decades of international health care. Similarly, the landscape of disease and illness, within and beyond South Africa, has been significantly influenced by the burgeoning international and regional HIV-epidemic. In South Africa the move to democracy was coupled with a decentralisation of the National Health System (NHS), increasing rates of HIV-infection, and a political desire to recast traditional healing as an African cultural practice deserving of state endorsement. This paper considers the multiple illness meanings and treatment strategies employed by HIV-positive people and traditional healers living in Cape Town, South Africa. In order to offer an understanding of treatment strategies that move between the biomedical and traditional healing, this paper draws on the distinction between the psychosocial aspects of illness and the biological disorder of disease. The first section of the paper presents a case study of an HIV-positive woman’s experiences of the illness and the disease of HIV, and explores her concomitant health care strategies based on her shifting conceptions and experiences of HIV. The subsequent section moves into a detailed analysis of interviews conducted with a sample of traditional healers. This section highlights the traditional healers’ overlapping and also divergent views on the causation and treatment of HIV and AIDS-related illnesses amongst their HIV-positive clientele. Finally, this paper places traditional healing practices and practitioners within the context of South Africa’s NHS in order to suggest some of the potential benefits and limitations around collaboration between biomedical and traditional health care paradigms.
- ItemRestrictedLove in the time of AIDS: the relational gender dynamics of prevention, testing and treatment(2009) Mills, Elizabeth; de Paoli, Manuela Marina; Grønningsæter, Arne BackerGender and sex lie at the heart of South Africa’s generalised and heterosexual epidemic. The stark feminisation of HIV in South Africa telescopes research, policy and interventions on to the socio-economic inequalities that make women particularly vulnerable to the impact of HIV and AIDS. There is a corresponding risk of reducing the complex and relational nature of gender down to a binary that positions women as victims and men as perpetrators. Accordingly, we seek to disrupt this dichotomy and point to the multiple ramifications of gender inequality for both men and women’s wellbeing in relation to HIV prevention, testing and treatment. The findings are drawn from a qualitative study conducted in Cape Town, South Africa, in 2007 and 2008. The researchers identified three main research groups and corresponding research methodologies to elicit particular information regarding the challenges faced by members of HIV/AIDS non-governmental organisations, medical doctors and people living with HIV. The research methods include: twenty-nine narrative interviews with HIV-positive men and women; three focus group discussions; and eight semi-structured interviews with medical doctors. The findings highlight the relational nature of gender, its intersection with a range of behavioural, social and physical drivers, and the various ways in which both men and women shape their own and each other’s health within the sexual relationship dyad. Constructions of tradition and masculinity that valorise unsafe sex emerged as a significant barrier to HIV prevention for both men and women, and deterred men from testing for HIV or accessing critical health care. Women accessed health care more readily than men, but they feared and experienced stigma from their sexual partners, which in turn undermined disclosure and safe sex, compromised antiretroviral adherence, and reinforced mixed infant feeding practices. This paper calls for a more nuanced understanding of gender dynamics that moves beyond the ‘victim/perpetrator’ dichotomy which lambasts men and pities women. Accordingly, it explores factors that may shift these dynamics and open up space for more constructive engagement that promotes both men and women’s health within the matrix of social, economic and emotional wellbeing.
- ItemOpen AccessSlamming into the visceral pleasure of language : the value of disordered spaces and its impact on contemporary vocal landscpes(2005) Woodward, Sarah Jane; Mills, ElizabethThe premise of this research is that the creation of a disordered space will have a positive effect on the stimulation of a physical response to spoken language. In a disordered space, vocal delivery is foregrounded as physical activity and has a re-patterning effect on the vocal landscapes of young actors. A disordered space co-opts elements from the vocal art forms of the popular phenomenon of the Spoken Word Movement. Disordered spaces act as an intervention on the traditional notions of western theatre voice practice. Chapter 1: The term 'disordered spaces' is explored as an imaginative mental space, feeding off the energetic impulses created by anti-establishment notions of chaos and anarchy. The language based forms of the Spoken Word Movement invite new responses to stimuli that force a repatterning of vocal responses in the actor, with an emphasis on the visceral quality of speech. Chapter 2: I outline in further detail the specific vocal elements of the Spoken Word Movement that contribute to the creation of disordered spaces. The four main strands that influence this movement are Rap Music, Dub Poetry, Slam Poetry and Freestyle. Rhythmic qualities of dialect are examined as a means of re-patterning responses to text. There is an exploration of the paralinguistic elements of speech through the concept of beat-boxing. The status of the individual performer is reconsidered in terms of the ownership of material that occurs within the movement. Chapter 3: Vocal landscapes are analysed as a socio-linguistic reality that is affected by changes in dialect. The dialect of the Spoken Word Movement is classified as non-standard dialect, which is slang based. It is concluded that it is the flexibility of a young actor's vocal landscape that leads to the success of the co-option of vocal elements from the Spoken Word Movement. I propose ways of using this material as inspiration for an intervention on the traditional notions of western theatre voice.
- ItemOpen AccessSlamming into the visceral pleasure of language: the value of disordered spaces and its impact on contemporary vocal landscapes(2005) Woodward, Sarah Jane; Mills, ElizabethThe premise of this research is that the creation of a disordered space will have a positive effect on the stimulation of a physical response to spoken language. In a disordered space, vocal delivery is foregrounded as physical activity and has a re-patterning effect on the vocal landscapes of young actors. A disordered space co-opts elements from the vocal art forms of the popular phenomenon of the Spoken Word Movement. Disordered spaces act as an intervention on the traditional notions of western theatre voice practice. Chapter 1: The term 'disordered spaces' is explored as an imaginative mental space, feeding off the energetic impulses created by anti-establishment notions of chaos and anarchy. The language based forms of the Spoken Word Movement invite new responses to stimuli that force a repatterning of vocal responses in the actor, with an emphasis on the visceral quality of speech. Chapter 2: I outline in further detail the specific vocal elements of the Spoken Word Movement that contribute to the creation of disordered spaces. The four main strands that influence this movement are Rap Music, Dub Poetry, Slam Poetry and Freestyle. Rhythmic qualities of dialect are examined as a means of re-patterning responses to text. There is an exploration of the paralinguistic elements of speech through the concept of beat-boxing. The status of the individual performer is reconsidered in terms of the ownership of material that occurs within the movement. Chapter 3: Vocal landscapes are analysed as a socio-linguistic reality that is affected by changes in dialect. The dialect of the Spoken Word Movement is classified as non-standard dialect, which is slang based. It is concluded that it is the flexibility of a young actor's vocal landscape that leads to the success of the co-option of vocal elements from the Spoken Word Movement. I propose ways of using this material as inspiration for an intervention on the traditional notions of western theatre voice.
- ItemOpen Access'Swimming in confusion': a qualitative appraisal of factors affecting uptake and adherence to HAART through South Africa's Public Health System.(2008) Mills, ElizabethIn 2007, less than one-third of all HIV-positive South Africans in need of lifeextending highly-active antiretroviral treatment (HAART) are accessing it through the public health system. This ‘treatment gap’ poses a significant challenge to health practitioners and researchers given the complex factors that influence the provision (supply) and uptake (demand) of this public health intervention. This qualitative study, conducted in 2006, set out to explore some of the demand-side factors affecting uptake and adherence to HAART among a cohort of HIV-positive people living in the Western Cape. Two significant and interrelated findings emerged from the research: one, political equivocation influenced the use of lay and untested HIV remedies among the cohort, with lay remedies represented as ‘benign’ compared to the ‘risks’ of using biomedicine like HAART; second, psycho-social and physical factors, like hope, stigma and fear or experience of HAART’s side-effects, affected the respondents’ health seeking behaviour. This preliminary qualitative study suggests that political equivocation and national activism compound, and also obscure, nuanced personal responses to managing illness and securing health. In order for the hard-won HAART roll-out to succeed in reaching 80% of all those in need by 2011, as per the 2007 – 2011 HIV/AIDS and STI National Strategic Plan, researchers and practitioners need to consider and address both supply and demand-side factors inhibiting access and adherence to HAART in South Africa.
- ItemOpen AccessTies that Bind: HIV-Disclosure as Consequence and Catalyst of Stigma and Support in Households(2009) Mills, Elizabeth; Maughan-Brown, BrendanDisclosure positions the HIV-positive individual at the juncture of stigma and support. This paper explores some of the factors that prompt HIV-positive individuals to disclose to members of their household through a close appraisal of disclosure as a consequence and catalyst of stigma and support for people living with HIV. The paper draws on both quantitative and qualitative research conducted between 2004 and 2008 in Cape Town, South Africa. The quantitative data come from two longitudinal surveys conducted in Khayelitsha, a township on the eastern periphery of Cape Town: a panel study conducted with a cohort of HIV-positive people on antiretroviral treatment and a second panel conducted with a control group comprising a matched sample of residents. The qualitative research includes participant observation and in-depth narrative interviews with thirty key informants and health care providers. The findings centre on two key aspects of disclosure within households: the process of disclosure, and the dynamics? of disclosure, stigma and support. The quantitative findings indicate high levels of disclosure within households; we propose that this is a consequence of high levels of support and low levels of perceived stigma within families, notwithstanding higher levels of perceived stigma in the general population. The qualitative findings problematise some of the quantitative findings and indicate that disclosure was not only met with positive and supportive responses from household members, but that it has also catalysed stigmatising responses, particularly from parents within the household. These initial responses, however, shifted over time as individuals became more aware of the prevalence of HIV, and started to dissociate the virus from conceptions of promiscuity and death. The respondents in the qualitative study indicated a concern that disclosure would threaten supportive relationships among co-residential kin; in order to garner support and mitigate against stigma within their household, the respondents in? the qualitative study first 'tested out' responses by disclosing to extended family on the periphery of their close social networks. This points to the nature of disclosure as an incremental process, rather than a once-off event. This paper argues that relationships within households are dynamic and change over time, and therefore that the catalysts of disclosure also take new form within relationships in households, and in the broader community.