Appendix: Interlocutors and Research Methods

Summary

As described in the Introduction, my two research assistants in Okhahlamba were Phumzile Ndlovu and Zanele Mchunu. Within the NGO where they worked, Phumzile was responsible for co-ordinating the work of volunteer home-based carers in Okhahlamba, who had trained in palliative care in 1999, and who were responsible for caring for the ill in their neighbourhoods. Zanele undertook intervention work with ‘vulnerable children and youth’, to use the terminology of the NGO and global development sectors. She had ongoing contact with children and young people who had lost one or both parents through death.

Describing the scope of their activities in more detail, once a month, Phumzile convened a large meeting of all the home-based carers within the region in the NGO offices in Bergville, in which she encouraged them in their work. On occasion, speakers were asked to address the meeting, including personnel from the Department of Social Welfare, Treatment Action Campaign (TAC) members from Pietermaritzburg, and more frequently, a doctor from the local hospital with whom carers had formed an ongoing and open relationship. Phumzile also attended support-group meetings for home-based carers in four areas of Okhahlamba, where volunteers could speak of their problems in relation to specific patients and their families, and of their own emotional turmoil in the face of the suffering they witnessed. She recorded the minutes of intermittent inter-sectoral meetings of interested parties across local communities and racial divides, where their contribution to confronting the AIDS epidemic was discussed. Groupings involved included: church groups, the police, personnel from the provincial education department, a few doctors from the local Emmaus Hospital, charitable bodies, the personnel of a small local orphanage in which only two children lived for most of the research period, other NGOs, myself and interested individuals. Phumzile attended an AIDS task group meeting set up at Emmaus Hospital, to which I was also invited. I attended many of the above meetings, recording them and writing notes concerning my observations of them.

Phumzile introduced me to the home-based carers at one of their general meetings, during the first month of my living in Okhahlamba. The group was made up of 77 members, although on average, only 43 regularly attended general meetings. Only two of the carers were men.