Focus group discussions

The aim of this data collection activity was to gain insight into the local community context in which HIV vaccine research is conducted. It accessed the views of community members who participate in the research and community engagement activities of Research Centre X. These focus group discussions documented community members’ descriptions of the

dialogue in their communities about HIV/AIDS and their own and other community

members’ views and opinions about the HIV vaccine research being conducted at Research Centre X and their role in it. The focus group discussion method, which uses group

interaction to explore people’s knowledge and experiences in relation to a set of socially relevant issues (Kitzinger, 1995; Marková, Linell, Grossen & Orvig, 2007) was well-suited to achieving the aim of understanding of the community context and atmosphere in which HVT participation takes place, participants’ perception of their role in the research, and the

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community engagement process. An additional benefit of the focus group discussion

approach for this research was the fact that focus group discussions create a setting in which participants who have a shared and common experience respond to and build on each other’s views, generating a range of opinions, ideas and experiences in the process (Litosseliti, 2003).The use of focus groups in my research afforded me the opportunity to identify shared and common knowledge (Kitzinger, 1995) with respect to HIV vaccine research, research participation and community engagement at Research Centre X. Through its interactive nature, participants shared their experiences: confirming, contesting and amplifying their perspectives and generating a rich narrative that represents multiple viewpoints (Litosseliti, 2003) on participation in HIV vaccine research and community engagement activities.

I conducted a series of four focus groups with community members who participate in the research and community engagement activities at Research Centre X. Twenty-four

community members participated in these focus groups. I was assisted in this process by a note-taker and an interpreter who acted as translator for participants who do not speak English or who preferred to communicate in Xhosa. Lindelwa, a Xhosa-speaking research assistant with extensive experience in collecting data in health-related projects in community settings, acted as the interpreter in my focus group discussions. In working with Lindelwa, I adopted the steps suggested for maximizing the effectiveness of working with an interpreter as outlined by Williamson et al. (2011). In the introductory phase of the focus group

discussion I partnered with Lindelwa in the facilitation of this phase of the process. I introduced the study and our team to the focus group participants, and Lindelwa facilitated the completion of the informed consent documentation, reading through the form and explaining key sections to the research participants. As suggested by Williamson et al. (2011), her inclusion in the facilitation served to build rapport and enhance participants’ comfort with her presence. Prior to the focus group discussions, I trained Lindelwa on the

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content to be covered in the focus group discussion and the process to be followed. After each focus group discussion, we debriefed, discussing our experiences of the focus group discussion process, clarifying our understandings of the process and content and our interpretations of our observations throughout the focus group discussion.

In planning for the focus group discussions, we aimed to recruit 8-12 participants to participate in each focus group. Due to various pragmatic obstacles such as transport, inability to reach participants via the telephone numbers that they provided, participants’ competing commitments on the day of the focus group discussions, on average between six and seven participants arrived to participate in the research. This number falls within the acceptable range of a typical size for focus group discussions (Litosseliti, 2003). I developed and used a focus group guide (Appendix 1) containing a few areas of discussion aimed at uncovering participants’ shared and common knowledge and perceptions with regard to HIV/AIDS, HIV vaccines and participation in HIV vaccine research. I followed the focus group guide, monitoring the discussion throughout the process, adding questions and probes, reflecting back content to participants and attempting to draw quieter participants into the discussion. A total of 24 community members who had participated in HIV vaccine research, education and awareness-raising activities at Research Centre X participated in the focus group discussions.

All focus groups were conducted in the boardroom of Research Centre X. We set up the focus group space in a circle format in the middle of the room to create a space that would facilitate conversation. Lindelwa and I sat in the circle and at opposite ends of it to facilitate communication between us, and between ourselves and the research participants. We placed two audio-recorders inside the circle to ensure that we produced a reliable record of the discussion. The note-taker sat on the outside of the circle, at a desk behind the group, where he could observe the interactions, document key points discussed and document patterns of

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interaction between participants. The notes taken by the note-taker and the debriefing process between Lindelwa and I, served to support the audio-recordings and the process of generating an authentic description of the focus group discussion process.

At the start of each focus group discussion I introduced the study and the focus group team to the research participants. I also explained my research, the purpose of the focus group discussions and their role in the research. Participants were given the opportunity to ask any questions or to request clarification of the information that I had shared with them at this point. Lindelwa assisted me in responding to questions and queries from participants, and once we had addressed all these questions we proceeded by handing out informed consent forms. Informed consent forms were available in both English (Appendix 2) and Xhosa (Appendix 3). Lindelwa explained the information in the informed consent forms to the participants in Xhosa, highlighting key issues in the forms and assisting them in completing them. After signing the forms, participants were asked to complete a form requesting biographical information, information about their involvement in the HIV vaccine research and educational activities being conducted at Research Centre X (see Appendix 4). The focus groups lasted between 60-90 minutes each.

Information about the community members who participated in the focus groups is outlined in the table below.

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Table 1: Descriptive information – Community members who participate in HIV vaccine research and community engagement activities at Research Centre X

Demographic variables Focus group n= 24 Age (years) 16 – 20 1 (4.17%) 21 – 25 8 (33.33%) 26 – 30 7 (29.16%) 31 – 35 6 (25.00%) 36 – 40 1 (4.17%) 41 – 45 0 46 – 50 0 51 – 55 1 (4.17%) 56 – 60 0 Sexa Female 14 (58.33%) Male 8 (33.33%) Level of Educationb None Grade 1-7 0 Grade 8-11 7 (29.17%) Matric 10 (41.67%) Tertiary 1 (4.17%) Honours 0 Masters 1 (4.17%) PhD 0 Employmentc Yes 3 (13.64%) No 19 (79.17%) Home languaged English 1 (4.17%) Sesotho 0 Xhosa 20 (83.33%)

Have you attended a vaccine information/ discussion group?

Yes 100%

No 0

a _{Missing data for two participants} b _{Missing data for five participants} c _{Missing data for two participants} d _{Missing data for three participants}

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The focus group with CAB members at Research Centre X followed the same procedure as outlined above. In addition to accessing CAB members’ views on research participation, the research and community engagement activities being conducted at Research Centre X, I also used this focus group to elicit CAB members’ experiences of their role as representatives of the community in the community engagement process. I facilitated this focus group without the assistance of an interpreter, as I was assured by Sizwe that all CAB members were able to converse and interact in English. I was assisted in the focus group discussion process by a note-taker. The interview guide for the CAB focus group is outlined in Appendix 5. The focus group with CAB members covered a number of areas that included their role and activities in the HIV vaccine research and community engagement process at Research Centre X and their experiences of their role as representatives of the community. After introducing my study and the purpose of the focus group discussion, I explained the informed consent form to CAB members and they completed these forms (see Appendix 6). They also completed the participant information form (see Appendix 4).

We recruited 12 participants for this focus group discussion. However, on the day of the focus group discussion, only eight CAB members arrived to participate in the process. The CAB members who participated in the focus group discussion represented various community organizations and constituents, including organizations that provide health-care and support services to people with TB and living with HIV/AIDS, support to children at risk, or that focus on community development through advocating for provision of services and access to resources for community members. All CAB members described themselves as advocates for social justice, citing histories of political activism in the fight against

Apartheid. A number of CAB members also identified themselves as members of the African National Congress (ANC). CAB members had joined the CAB at Research Centre X via two routes: they had been identified as community leaders by members of the Community

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Outreach Team and invited to join the CAB; they had been introduced to members of Community Outreach Team via a referral system through members of their own social networks. The focus group discussion with CAB members lasted approximately 90 minutes.

Information about the CAB members who participated in the focus group are outlined in the table below.

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Table 2: Descriptive information – Community members who serve on the CAB at Research Centre X

Demographic variables Focus group n= 8 Age (years) 31 – 35 1 (12.50%) 36 – 40 0 41 – 45 5 (62.50%) 46 – 50 0 51 – 55 2 (25.00%) 56 – 60 0 Sex Female 5 (62.50%) Male 3 (37.50%) Level of Education Grade 8-11 2 (25.00%) Matric 2 (25.00%) Tertiary 3 (37.50%) Honours 1 (12.50%) Masters 0 PhD 0 Home language English 1 (12.50%) Sesotho 1 (12.50%) Xhosa 5 (62.50%)

Have you attended a vaccine information/ discussion group?a

Yes 7 (87.50%)

No 0%

a _{Missing data for one participant}