Note
Chapter 4 Methodology
11.2 Non-maleficence
The principle of non-maleficence requires that the researcher ensures that no harm comes to the participants through their engagement in the research process. In this study, this principle was potentially compromised in two ways. Firstly the research topic was sensitive because it involved a discussion of sex and sexuality, and also of HIV and AIDS. In many contexts open discussions of sex and sexuality are taboo (Lee, 1993). In addition to this, HIV and AIDS is a highly stigmatised illness (Strode & Barrett-Grant, 2001). Secondly, the research involved the participation of minors (children under the age of 18 years old).
Lee (1993, p. 16) argues that many pressing social problems, such as HIV and AIDS “defy solution in the absence of increasing knowledge, but require for their understanding entry into private… worlds”, for example, the private realms of sex and sexuality. Such studies could be defined as sensitive research because they “raise questions about the kinds of research
regarded as permissible in society (and) the extent to which research may encroach upon people’s lives” (Lee, 1993, p. 1). Sensitive research is research in which “there are potential consequences or implications, either directly for the participants in the research or for the class of individuals represented in the research” (Sieber & Stanley, 1988, p. 49, cited in Lee, 1993, p. 3). Lee (1993) further defines research as threatening when it is intrusive (it deals with areas which are private), and when it means that the information revealed might be stigmatising or discriminating in some way. However, instead of not studying these difficult topics, Lee (1993, p. 16) argues that “the threats which research poses to research
participants…needs to be minimized, managed or mitigated”. In this study this was done through: the use of particular data collection techniques; re-visiting the notion of informed consent at the start of the focus groups and interviews; linking the study to previous and future interventions; and addressing the particular risks of conducting research with children.
11.2.1 Data collection techniques to manage sensitive discussions
The data collection techniques used in this study provided appropriate fora for the discussion of HIV and AIDS, and sex and sexuality, in different ways. Focus group discussions are sometimes used to discuss sensitive topics (Morgan, 1997) and they are useful because the discussion remains at a general level, rather than focussing on the individual research participants. In the focus group process, the discussion focussed on “What do people in the Amathole Basin do?”. Individual interviews, on the other hand, provide a more private context in which to express opinions and reflect on personal experiences. Lee (1993) argues that privacy, confidentiality and a non-condemnatory attitude in an interview which involves disclosure are important, because they provide a framework of trust. In this study, the
interviews were conducted in a private room in the participant’s house. In the beginning of the interview, and throughout the interview process, the participants were reminded that what was said in interview would remain confidential, and if the participant did not want to answer a question, this was respected.
11.2.2 Re-visiting informed consent
The process of informed consent was revisited at the start of the focus groups and interviews.
Participants were reminded of the aims of the research and what would be discussed in the interview. They were also informed that they could withdraw from the study should they so wish. They were also informed of all of the procedures which would be used to maintain confidentiality and to protect their identity. Participants were again asked whether they wanted to participate in the study. All of the participants agreed to participate in the research process.
11.2.3 Embedding the research in broader processes
Importantly, this study was framed by my prior research involvement in the area, and also by the work in 1999-2000 by Kelly (2000; Kelly & Parker, 2000). As explained in section 8 above, on completion of the initial sentinel site survey, community members asked me to report the findings to them. In a feedback meeting to members of the community they expressed concern about the finding (high levels of early debut sex; high levels of sexual activity amongst youth, and lack of adequate precautions against HIV infection) and a desire
to understand why these dynamics existed. In introducing this study, the link was made to the previous study, and thus some of the participants saw their involvement as a follow up to the Kelly (2000; Kelly & Parker, 2000) study. Participant 3m 51 said:
… I know that now you are researching about these things there is something that you want to contribute in terms of helping the people or the community around here so that you could just gather information and understand what is there and understand the situation14. The research process also lead to a research intervention in the area. In 2001, Save the
Children contracted a team of people to engage in a social mobilisation in the area, Kevin Kelly being one of them. This process researched the community members ‘responses’ to HIV and AIDS and initiated various interventions on a community level to address awareness of, and discrimination related to HIV and AIDS. I was involved in this social mobilisation.
My research study was thus not a once-off and ad hoc engagement with the community, but related to other processes which were more long-term and had interventionist aims.
11.2.4 Research with child participants
In some ways, involving children in a research process is an acknowledgement of the value of their perspective, and also their right to express themselves about issues which matter in society. Smith and Taylor (2003, p.1, cited in Maguire, 2005) argue that "young children value being informed and having the opportunity to express their views". In their study children demonstrated competence and resilience in talking about the sensitive issue of parental separation. However, research with child participants raises particular ethical issues (Maguire, 2005). One of the dominant issues is the decision-making capacity of child participants in research (Maguire, 2005). In most societies, children do not have the legal status to assent to research, and are assumed not to have the maturity to assent to participant in an informed way. Through assessing whether the research will be of harm to the child participant, an adult is assumed to be able to provide, or withhold, proxy consent. However, Maguire’s (2005) research illustrates that whether or not adults assent to children’s
14 The extracts are prefaced with a number, an indication of gender (‘f’ for female participant, ‘m’ for male participant), and then the participant’s age (if known), or their age category, e.g. 3f 49 is a female participant, 49 years of age. Participants who were over the age of 55 but whose exact age was unknown, were referenced 55+.
Extracts from focus groups are indicated by the use of FG, the focus group number, and the age group of the participants (e.g. FG3 10-15 young boys). If a longer excerpt from the interview or focus group is used, ‘I’
indicates the interviewer, and participants are indicated by ‘P’ (or F/T for the female participant and M/T for the male participant in a couple interview speaking through a translator). Pauses in the extracts are indicated by ‘…’.
If lines in a transcript have been left out, they are indicated in the same way. Explanatory notes are indicated with square brackets: [ ]. In the interests of readability, some of the transcription details in these extracts have