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The HIV/AIDS Challenge in Africa - HEARD OSSREA Workshop
Judith King. HIVAN Media and Publications Consultant. October 2005.
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Following an Introduction to the workshop proceedings by Gavin George from UKZN?’s Health Economics and HIV/AIDS Research Division (HEARD), the welcome and opening addresses were delivered by Prof Alan Whiteside, Executive Director of HEARD, and Dr Alfred Nhema, Executive Secetrary of OSSREA, respectively.
Whiteside described HEARD?’s partnership with OSSREA as a mutually beneficial means of facilitating a broad sharing of research findings and experiences, and drawing emerging HIV/AIDS researchers into the field through their structured programmes, with co-authoring as a model for capacity-building. HEARD plans to host more workshops and seminars of this kind in order to foster debate, critique and deepening of knowledge around the pandemic, particularly in serving HEARD?’s philosophy of advancing advocacy and policy development. ?“Any applied research unit walks a tightrope between advocacy and academia.?” (Whiteside, 2004, HEARD Annual Report).
Nhema outlined OSSREA?’s profile as a regional initiative, launched 25 years ago, to secure funds for multi-disciplinary social science research, and to serve as a protective body working in Eastern and Southern Africa. Key features of their current work include the annual award of social science research grants, and a gender training programme for all communities and practitioners.
Session 1: Ethnographic Studies
The first presentation was delivered by Andy Dawes of the HSRC?’s Child, Youth and Family Development programme. This was a pilot study on methodology used to gauge The Impact of Primary Caregiver HIV Infection on Caregiving and Child Developmental Outcome in the Era of HAART. A multi-disciplinary team set out to reshape the tools for examining life in home settings that are characterised by HIV infection, multiple care-giving relationships and attachments, households embedded in neighbourhood, and the deep poverty bound up with HIV. The project?’s emphasis was on living within these settings and taking on, as shared responsibilities, any consequences of this experience ?– for example, the death of one of the participants, and the need to repatriate her son.
?“Social support is a critical factor and mediator in the health of the caregiver and in terms of child outcomes. The lived context of caregivers and children is highly complex, and we researchers came to appreciate the importance of the mother?’s (or caregiver?’s) psychological condition, as well as the dynamic situational and functional backdrop of each home setting,?” said Dawes.
The study involved interviews based on the Spielberger method (which involves prior testing of vernacular queries with qualified local advisors) and an observation process; the latter proved difficult to record visually because many of the home settings were too cramped to film. Overall, every attempt was made to gather a rich ethnographic description of the people and the diverse contexts of care; in turn, this yielded a layered, multi-purpose methodological tool.
The primary findings of the study were that:
- ?“Coping?” is multi-factorial, and fluctuates over time and settings;
- Disclosure of HIV status is very complex and, in order to minimise risk, evolves into both strategic disclosure and deliberate non-disclosure.
Dialogue on the presentation began with agreement that the ethics of research engagement need far more attention than is currently accorded them, particularly with regard to interactions characterised by the researcher?’s contact with the participants being fleeting and follow-up being non-existent or negligible. Dawes said that the team?’s approach involved giving due time and respect to the participants, finding the right location and space, reducing the impact of interviews when participants were feeling unwell or troubled, and at all times, observing their sensitivities in context. Discussion developed around the issue of inducement to participate: Dawes felt it important that a parting gift (of a food parcel, perhaps), given at least as a gesture of courtesy, should not be indicated before the project is initiated.
The issue of providing feedback to participants also came into focus: Dawes said this practice is vital, as is facilitation of service provision in communities. Time is needed to build these relationships and investing this time and concentration allows for authentic stories to be told. ?“Poverty deepens the gendering of the pandemic, creating the multiple roles that women are compelled to bear, even beyond care-giving,?” he noted.
HIVAN?’s Fiona Scorgie asked for best-practice guidance on providing feedback in highly stigmatised environments; Dawes said their team set up a community advisory board prior to commencing the research, showed its members the findings and requested them to decide on whether or not, and how, the contents should be imparted to the participants. Where severe depression had been observed, these people were referred to nurses and other medical practitioners. A delegate asked about strategic disclosure, and whether or not non-disclosure might result from the patient?’s own projection of how negative the response might be to knowledge of their status. HIV generates great fear in patients, which is sometimes quelled when there is positive support for their condition. Dawes noted that generally, however, the harsh reality of stigma confirmed the patients?’ worst fears of rejection.
Patti Henderson of HIVAN then presented on her paper entitled The Vertiginous Body and Social Metamorphosis in a Context of HIV/AIDS. Her work has been conducted at a rural research unit in Okhahlamba, a sub-district of uThukhela District in KwaZulu-Natal. Her perspective was that social anthropologists invest in the stories of people, while advocating for the disruption of complacent and inappropriate scientific notions through a focus on human beings as individuals in community. She described how, with her colleague Phumzile Ndlovu, working closely with a group of 73 volunteer home-based caregivers in the area had yielded invitations to the homes of HIV-positive patients and their affected families. For just over two years, they had recorded the extreme suffering of these people, observing also the toll on the caregivers who supported their patients and families through the last stages of life, through death and its aftermath.
Relating the physical degeneration of the AIDS-wracked human immune system to the social drivers and responses that exacerbate its decline, Henderson focuses on the implosion of the flesh and the terrible effects of HIV and AIDS on the person?’s body.
The full report can be accessed on the righthand side of this page. For more information on HEARD, please visit http://www.http://www.ukzn.ac.za/heard/
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