worked in various settings including a hospital-based HIV/AIDS support program, a large child welfare NGO whose mission included providing services to children infected and affected by HIV/AIDS, two church-based NGO's serving people with HN/AIDS in outlying rural areas, an in-patient palliative care program for AIDS patients, and a NGO that specialized in providing support groups and counseling for people affected by HIV/AIDS.
considerably slows the pace of the interview, but I felt that the positives outweighed the negatives. Overall, though, most participants recruited for this study did speak English, so I did not encounter this situation often (I used a translator for only three participants).
Semi-structured interviews were used to understand the breadth of participants' experiences. The advantage of the interview as a research tool is that it is possible for the researcher to listen to respondents and to investigate their thinking firsthand. I developed an interview outline based on an extensive review of the literature on AIDS- related bereavement, literature pertaining to the context of AIDS in South Africa, as well as on my own experiences and hunches. Using less structured forms of questioning enables researchers to obtain information that cannot be expected using a more structured format (McAuliffe & MacLachlan, 1992).
Key components in conducting successful in-depth interviews are to establish rapport with participants, create a non-judgmental atmosphere and convey interest in and respect for the experiences and knowledge of participants (Fontana & Frey, 1994). Each interview began with me thanking participants for volunteering for the study and I provided a brief statement about my experiences with AIDS-related bereavement both professionally and personally, having lost my father to AIDS. I reiterated the purpose of the study and expressed my desire to learn more about their experiences with AIDS and bereavement within the South African context. Participants appeared to respond well to this introduction and sensed my sincerity in wanting to understand their experiences. I believed that briefly sharing some of my personal experiences with AIDS-related loss was important, especially for those participants who might have been reluctant to share their experiences with someone who appeared to be different to themselves.
Next, I gathered basic demographic information about each participant, including gender, ethnicity, age, sexual orientation, occupational status, household composition, and religion. Information was obtained about the deceased person/s including name, gender, ethnicity, age at death, when he/she died, and relationship to the participant.
After this, participants were asked several guiding questions such as: "Please tell me, in our own words, your experience of losing (name of loved one/s) to AIDS" and "What stands out for you, good and bad, when you think back about your loss?" The objective
was to keep the interview as open-ended as possible, to enable participants to create their own story and to lead the interviewer to wherever their thoughts took them.
A non-directional approach, active listening techniques, and open-ended questions were employed that encouraged participants to tell their stories from their own frame of reference (Kvale, 1996). Throughout the interview, probing and clarification questions were asked to further explore their experiences (Guba & Lincoln, 1989). The grand tour questions led to a funneling or narrowing to more specific questions. I used things that a participant said to generate further questions in subsequent interviews - what Franklin (1997) refers to as "cross-connections" (p. 104). The collection and analysis of data proceeded at the same time, allowing me to change focus or pursue leads or gaps revealed by the ongoing analysis. The first few interviews were like pilot interviews that informed
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subsequent interviews. "" ' ,
..My experience as a researcher and clinician helped considerably in conducting the
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interviews. As an experienced researcher, my curiosity and questioning yielded rich information from participants. And my training as a grief counselor allowed me to be sensitive to the psychological processes of participants as they explored feelings which often were painful and upsetting. Oskowitz and Meulenberg-Buskens (1997) offered the following advice to researchers preparing to conduct a qualitative investigation of a sensitive issue:
For respondents to be heard, researchers have to be receptive to hearing what respondents have to say. To enable respondents to speak and their voices to be heard, it is our contention that researchers need to have empathy and compassion and should strive towards the establishment of a relationship of mutual trust with respondents. These qualities are not only humanitarian prerequisites, they are also crucial in the process of gaining valid data. For it is only in a relationship of mutual trust that respondents will risk voicing their feelings. (p. 87)
Each participant was interviewed for approximately one hour with a follow-up interview of the same duration a week or two later. I decided, due to the subject matter
and the potential emotional strain on participants (as well as me), to limit the duration of each interview to about one hour and to allow a "breathing space" between interviews. I maintained contact with participants between interviews to check on how they were doing and to remind them of the next meeting. I did this primarily through phone calls and if I could not reach them, I contacted a key person at the organization where they were interviewed to enquire about them. I believe that most participants sensed my concern for their well-being and all of them showed up for the follow-up interviews.
Content ofInterviews
Participants were encouraged to share their story of bereavement from AIDS. The following areas were addressed in my interviews that were guided by social ecological theory:
• Biographical data.
• Impact of AIDS and associated losses on the individual and family (microsystem).
• Relationship between the bereaved individual and hislher family with the community (mesosystem).
• The bereaved individual's experience and interaction with the health and social welfare system (exosystem).
• Perceptions about national policy, funding and government values regarding AIDS and those affected by AIDS, and cultural influences on AIDS-related bereavement (macrosystem).
• The effect of political, cultural and social changes as well as medical advances on the bereavement experience (chronosystem).
Pierret (2000) raised an interesting point for researchers studying participants affected by HIV/AIDS; that we need to bear in mind the different stances adopted by participants because it will determine what the participants say and the type of data collected. The interview is an opportunity for talking and each participant may understand this opportunity differently. As Pierret suggested, it may be an opportunity to tell a life story or for bearing witness, it may be a time for breaking the silence and sharing one's secret,
or it may be perceived as a time for seeking help or counseling. This point also applies to the key informants that I interviewed.
Interviews with Key Informants
In-depth focused interviews were also conducted with eight key informants. These interviews which were also tape-recorded were obviously of a different nature from those conducted with bereaved participants. They were of a less personal nature and focused more on informants' experiences and attitudes about caring for people affected by HIV/AIDS. They averaged an hour and a halflong and were conducted at the office of each key informant. In every instance, I found key informants to be enthusiastic about my research and they were very receptive to being interviewed about their experiences (personal and professional), opinions relating to AIDS-related bereavement, and how they were addressing this issue. Specific topics that were covered in the interview included:
• Some biographical data.
• Description ofthe organization (services offered, clientele, staffing).
• Experiences and thoughts about bereavement due to AIDS.
• Services that were being offered to help people cope with deaths due to AIDS.
• Needs, challenges, ideas and goals with respect to providing services to people infected/affected with HIV.
• Opinions about the government's handling of the AIDS crisis and functioning with limited resources.
• Attitudes about the roll out of ARV treatment.
• Burnout.