Perceptions of participants and community members about research on gender-based violence

Thesis (Ph.D.)--University of the Witwatersrand, Faculty of Health Sciences, 2013TITLE: Perceptions of participants and community members about research on gender-based violence The goal of this thesis was to explore ethical issues in conducting gender-based violence (GBV) research with human participants in South Africa. We study this question from the perspectives of both the researchers and the research participants. This thesis has two specific aims. First, to critically review the applicability and usefulness of the WHO 2001 guidelines in regulating community based research from the perspective of the researchers who do GBV work globally. Second, to explore peoples’ motivations for research participation, their perceptions of risks and benefits in participating in studies, the perceived psychological impact of answering sensitive questions, and adverse experiences of research participation. Three studies were conducted to meet the study aims, and were carried out using the combination of qualitative and quantitative methods and techniques. In the first study, 12 in-depth Interviews were conducted with GBV researchers from various countries and a desk review was also conducted. Study two had two components. First, 26 in-depth interviews (adult 19 women and 07 men) were conducted, and data were also collected using participant observation over a period spanning three months. Additionally, a real life incident was analysed as a case study of ethical dilemmas faced by researchers when unsolicitated incriminating disclosures by participants occur during the course of data collection. Thereafter, 22 in-depth interviews were conducted with men and women (over 18) who had recently participated in a survey on gender-based violence. In study 3, data were collected from 1085 women and 985 men (between ages 15-26) using a structured questionnaire. The results revealed no empirical evidence from published literature and from the accounts provided by researchers to support the view that GBV research is exceptionally risky when ethical guidelines are adhered to or that is has greater risks than other community based studies. From the perspective of the research participants, findings show that breach of confidentiality was viewed as a major concern in participating in studies. This was reported by both men and women, with, gender-differences. Women were more likely to fear violent reaction from their male partners for participating in the studies without man’s approval, and some women were threatened by their partners, but this was not GBV specific. No man reported this fear or any adverse reaction by intimate partners or others. Men rather feared other negative ramifications like being shamed, stigmatized, humiliated, and embarrassed in the community if breach of confidentiality could occur. Findings of this thesis reveal a complexity of people’s reasons for participating in community based studies. Participants reported multiple and various, sometimes conflicting, reasons for participating in the studies. Most were motivated by self-interest to enroll while others reported reasons that were viewed as altruistic. For example, the chance to be tested for HIV, financial incentive for research participation (R20), hope for immediate financial assistance with municipal debts, assistance with their ill-health and intervention in abusive relationships, were some of the reasons given. Also, the desire to help advance knowledge, to contribute to society, to provide information that would help others suffering from same illness or disease, or those in abusive relationships like them were also given as reasons by participants and in most cases, same individual participants gave reasons that overlapped or oscillated between altruistic and self-interest motives. Emotional distress as a result of being asked questions about interpersonal violence histories and other traumatic experiences is viewed as major risk in GBV studies, and data from interviews with researchers in this thesis confirm this. Data from interviews with participants revealed that being asked in research interviews about such histories made the participants to feel sad and some reported that reflecting on these experiences was painful. Yet, none described the impact as harmful, rather most stated that such emotions occurred for a very limited time and that they did not need professional support to deal with the emotions. Many, including those who had emotional reaction to some research questions or had regretted participating in the research, also viewed the experience of participating in research as beneficial. The findings in this thesis have implications for ethical and safety guidelines on GBV research and on future community based sensitive research in South Africa. Findings presented here provide support to the WHO 2001 guidelines that studies that are community based and researching sensitive issues with women, including partner violence, should keep secret the violence focus and other sensitive questions at community level, and such focus be divulged only to participating women. This thesis has shown that this recommendation may provide protection to a particularly vulnerable subgroup of women i.e. those in abusive or potentially abusive relationships from potential physical harm