Framing rights and responsibilities: accounts of women with a history of AIDS activism

Abstract

BackgroundIn 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.MethodsIn 2003 a group of women involved with the Treatment Action Campaign and Medicines Sans Frontières 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.ResultsDrawing 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.ConclusionsWomen’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.

Body Mapping as a Youth Sexual Health Intervention and Data Collection Tool

“…One challenge with interventions involving youth can be eliciting deeper meaningful conversation about sexual health issues that participants may regard as potentially stigmatizing or uncomfortable to discuss ( Chenhall, Davison, Fitz, Pearse, & Senior, 2013 ). The arts-based method of body mapping is a promising modality for generating conversations with Northern youth about difficult subject matter as this approach has been successful for research involving adults living with HIV ( Brett-MacLean, 2009 ; Devine, 2008 ; MacGregor, 2009 ; MacGregor & Mills, 2011 ; Nostlinger, Loos, & Verhoest, 2015 ; Orchard, Smith, Michelow, Salters, & Hogg, 2014 ; Solomon, 2002 ; Vasquez, 2004 ), young motherhood ( Gubrium, Fiddian-Green, Jernigan, & Krause, 2016 ), diagnoses of subfertility ( Hughes & Mann de Silva, 2011 ), and to explore sexual health and sexual decision-making among young adults in Australia ( Chenhall et al, 2013 ; Senior, Helmer, Chenhall, & Burbank, 2014 ). Although studies provide insights on sexual health intervention research and the collection of rich research data from difficult-to-reach populations such as youth, the use and evaluation of body mapping as a sexual health intervention and data collection method has not yet been applied with youth in a remote northern Arctic setting.…”

Using narratives to impact health policy-making: a systematic review

“…Information collected from the hotline was used to create thousands of advocacy summaries consisting of brief narratives of 3 to 8 sentences, compiled by county and by month/year. Advocacy summaries were shared on a monthly basis with a state-wide interagency maternal and child health ‘Access Task Force’Policy adoption:Optional Coverage for Women and Infants programme was “ spared from proposed legislative budget cuts ”Lorenzo, 2008 [57]Qualitative research approach using participatory action research (PAR)Time frame not reportedPeople from impoverished communities struggled to gain daily access to economic and social resources because of long distances, inadequate public transport facilities as well as overall poor levels of serviceHealth topic: Disabled women mobilising for an accessible public transport systemTarget population: Government and disabled womenOrganiser: Disabled People South Africa’s Disabled Women’s Programme in the Western Cape, the South African Christian Leadership Assembly Health Project, and Department of Occupational Therapy at Cape TownCountry: South AfricaInterpretive Critical Theory ParadigmFormat: A series of narrative action reflection workshops as an innovative method that enables storytelling and action learning collectively rather than on a one-to-one basisCharacteristics of narratives: Not reportedStorytelling and action learning between workshops were captured through videotapes, audiotapes, scribing, field notes and photographs.Findings were disseminated through seminars, conferences, narrative action reflection workshop, documentations, and writing up researchAgenda-setting:“ Findings contributed to increased understanding and awareness of disability issues for individuals involved in policy development and implementation across the various sectors of government to improve service delivery mobilising for an accessible public transport system ”MacGregor and Mills, 2011 [52]Case studyIn 2003, as part of a campaign to secure treatment for HIV drugs for all, a group of women involved with the Treatment Action Campaign and Medicines Sans Frontières participated in an initiative to ‘map’ their bodies as affected by HIVHealth topic: Right to HIV treatmentTarget population: GovernmentOrganiser: Medicines Sans FrontièresCountry: South AfricaNot reportedFormat: Body mapping (an innovative narrative and art therapy) through which women tell how their lives have been transformed by antiretroviral treatmentCharacteristics of narratives: Not reportedA book, ‘Long Life: Positive HIV Stories’, containing the women’s body maps and narratives was published and used as a political tool to add the ‘voices’ of ordinary people to the campaign to lobby for treatment for allPolicy implementation:Roll out of universal access to antiretroviral treatment drug in the public sectorMacKenzie et al, 2008 [54]Case study using frame analysisIn 2007, Clare Oliver was dying from melanoma at the age of 26; in the last months of her life, she campaigned strongly against the use of tanning beds and called for a banHealth topic: Solarium tanningTarget population: Government, media and the general publicOrganiser: Clare OliverCountry: AustraliaNot reportedFormat: First person accounts, television and print media coverage of the campaignCharacteristics of narratives: Not reportedThe policy changes were thought to result from the combination of powerful person...…”

Human rights and the sexual and reproductive health of women living with HIV – a literature review

“…All three addressed disclosure of HIV status in one way or another. Taken together, several themes emerge: 1) there is a dearth of peer-reviewed literature on the promotion of sexual health for women living with HIV which includes attention to their rights, and what does exist is entirely within the context of disclosure; 2) research is needed as to how best to support women living with HIV in HIV disclosure not only in the immediate but throughout their sexual lives; and 3) discrimination by health providers based on HIV status for women who remain sexually active remains a persistent problem [ 5 – 7 ].…”