Phase II: Fieldwork

Given that the overall research question of the thesis focuses on how research involving humans undertaken during armed conflicts ought to be ethically guided, qualitative research methods seemed to be most relevant to answer it. The purpose of the fieldwork phase of the project was to describe the research ethics practices during the study period and how they could have been affected and perhaps explained by the conflict setting in Darfur. This description was gained from those involved in these practices as researchers or as research participants within a qualitative case study.

Qualitative case study methodology provides tools for researchers to study complex phenomena within their contexts. When the approach is used sensitively, it is a valuable method for health science research to develop theory, evaluate programs, and develop interventions.

Therefore, a qualitative case study method was chosen, as it “facilitates exploration of a phenomenon within its context using a variety of data sources, which allows for multiple facets of the phenomenon to be revealed and understood” (Baxter and Jack, 2008, p. 544). In addition, this project fulfilled all the

criteria that Baxter and Jack suggest, following Yin (Yin, 2009), as relevant when using a qualitative case study design. These criteria include:

“(a) the focus of the study is to answer “how” and “why” questions; (b) you cannot manipulate the behaviour of those involved in the study; (c) you want to cover contextual conditions because you believe they are relevant to the phenomenon under study; or (d) the boundaries are not clear between the phenomenon and context” (Baxter and Jack, 2008).

These criteria apply to this project, as it aimed to understand the role that the conflict context played in the research practices, and the boundaries between the conflict context and the research practices were not clear.

Yin (2009) has suggested two models for qualitative case studies: single case and multiple cases. The single case study is appropriate where it represents a critical or extreme or unique case, while multiple-case designs allow cross-case analysis and comparisons between diverse settings (Yin, 2009).

Yin has also suggested that the use of multiple data sources is a good strategy because it enhances data credibility. The data sources included in this phase targeted participants who represented the three main categories involved in research in Darfur during the relevant study period (Figure 5-1). These categories include: 1) the researchers, who were either independent researchers, or affiliated with a governmental entity, or affiliated to a national or international NGO, 2) the researched Darfuri communities including IDP and host communities (refugees were excluded because the project targeted Darfuri population in Sudan only), and 3) Sudanese authorities responsible for the governance of research and

humanitarian work in Sudan. Their number and profile will be discussed in detail in (subsection 8-3).

5.2.1 Semi-structured interviews

Semi-structured interviews are typically organised around a set of predetermined open-ended questions, with other questions emerging from the dialogue between the interviewer and the interviewee to obtain richer descriptions of phenomena being studied. Other qualitative interviewing approaches include structured and unstructured interviews. These were excluded, as the structured interview aims at producing quantitative data, while the unstructured interview is

Who is involved in research in Darfur? Governance Bodies HAC FMOH NREC Researchers Independent Governmental NGOs Researched communities IDPs Host community Refugees

Figure ‎5-1 The main categories of stakeholders in the research activities in Darfur. HAC: Humanitarian Aid Commission; FMOH: Federal Ministry of Health; NREC: National Research Ethics Committee; NGOs: Non-governmental Organisations; IDPs: Internally Displaced Persons

more relevant to observational anthropological studies (DiCicco-Bloom et al., 2006).

Semi-structured individual face-to-face in-depth interviews were conducted with representatives of the INGOs, the Humanitarian Aid Commission (HAC), the department of research at the FMOH in Sudan, and the chairperson of the NREC. These individuals were selected for their roles in the preparation, coordination, or review of research or humanitarian activities within their respective institutions.

Given that there are more than 100 NGOs working in Darfur, I planned to select the INGOs that had undertaken the most research activities in Darfur during the study period as determined by the results of the systematic review described earlier. If an INGO refused to participate in the study, it was replaced with the INGO following it in terms of the extent of their research activity in Darfur, whilst maintaining the representativeness of the selected INGOs. For example, if the organisation that refused was a UN Specialised Agency, it was replaced by another UN Specialised Agency.

The interview questions (Appendices 1 and 2) were designed, following Patton, to be open-ended, neutral, sensitive, and clear to the interviewee (Patton, 1987). The plan was to conduct a sufficient number of semi-structured interviews to reach “theoretical saturation”. This is defined by Glaser and Strauss (1967) as the point at which “no additional data are being found whereby the (researcher) can develop properties of the category” and the “researcher becomes empirically confident that a category is saturated” (Glaser and Strauss, 1967, p. 65).

All the interviews took place in the interviewees’ offices in Khartoum and were recorded using a digital audio recorder. Data are stored according to the University of Birmingham Code of Research Practice for a period of 10 years following the completion of the project (University of Birmingham, 2016). I conducted, transcribed and translated all the interviews.

Written field notes were also taken. These notes were used as an aid to make the later transcription of the audio records more complete. I have integrated many of these notes within the transcripts shared with my supervisors to help them assess the precision of the transcripts.

5.2.2 Focus group discussions (FGDs)

Focus group discussions are a form of structured, attentively moderated group interview that capitalises on (usually spoken) communication between research participants to generate data, instead of the researcher asking each person to respond to a question in turn. This method reveals the participants’ conscious preferences, recalled experiences, and stated priorities (Kitzinger, 1995; Kuniavsky, 2003). Focus group discussions furthered the aim of this project by providing “an environment where people (ideally) feel comfortable revealing their thoughts and feelings and sharing their views of the issues and assumptions that lie at the core of an experience and to relate them to real-world situations” (Goodman, Kuniavsky and Moed, 2013). In relation to this project, these core experiences of the researchers and the individuals from the researched communities were integral to understanding the practice of research within the

context of conflict and highlighting their expectations of any future changes in this practice.

Focus group discussions were planned with two groups of participants. The first group included the NGO representatives who were responsible for the preparation and/or the undertaking of the research activities in Darfur, to explore their experiences with issues related to their research activities that they considered to have ethical implications. The second group included representatives of the Darfuri communities in which the research activities took place, who were mainly IDPs. “Community representativeness” refers only to demographic representativeness and not the representativeness of views, which could differ across Darfuri regions. The access I was granted was limited to certain areas in Khartoum, whose IDPs may not reflect the wider demographic variability in Darfur.

I initially aimed for one FGD for each of the two groups (the NGOs and the IDPs) in each of the three states of Darfur, for a total of six FGDs, with at least one of the researched-community FGDs devoted to women only. However, moving the study area from Darfur to Khartoum meant that all FGDs were held in Khartoum. The characteristics of the participants are reported in Section Five.

The FGDs were not designed to collect factual information about participants’ personal involvement in research, which could be significantly affected by recall bias (given the long period covered by the project). Rather, they were designed to encourage participants to share their perceptions about how research activities ought to be conducted, regardless of their previous participation in similar

research. Therefore, prior participation in research conducted in Darfur was not a prerequisite to participate in the IDPs’ FGDs.

Given the complexity of the setting in which the data were collected; an initial period of extensive preparation with the relevant stakeholders was needed. In addition, the help of two female research assistants (RAs) was needed for the facilitation of the women’s FGDs. The RAs were chosen based on having previous experience in conducting qualitative studies and having previously facilitated FGDs with women. Both RAs had experience of working on qualitative studies with the Darfuri population. The following section describes the facilitation of the FGDs.

5.2.3 Focus group discussions with internally displaced persons

The location of the FGDs with the IDPs had to be changed twice. Originally, the FGDs were planned to involve the Darfuri IDPs who had lived in a camp in Darfur, but the location was moved to the IDP camps in Khartoum. The revised plan was to conduct four FGDs in four main IDP camps in Khartoum, with at least one of these devoted to women only. This was further revised at the request of the NISS officers (see below), and I was only granted access to one specific geographical area in Khartoum.

The government of Sudan (GoS) does not officially acknowledge the presence of any IDP camps in Khartoum. Accordingly, the NGOs, whether national or international, were not active in these areas, despite the presence of IDPs. Therefore, the area that I was granted access to was not a camp in name or in structure. The people were living in brick houses that had been temporarily

abandoned by their owners, who were mostly living abroad. They were permitted to live in them temporarily until the owners returned, or until they could return to Darfur.

5.2.4 Obtaining security clearance to access IDP areas

Unlike in Darfur, where many organisations work regularly in the IDP camps and have been granted access to almost all of them, obtaining access to the Darfuri population in Khartoum was more complicated.

I had already secured ethical approval from the NREC in the preparatory visit to Khartoum prior to applying to the University’s ethics committee. However, when I informed the NREC of the University’s request to move the study site from Darfur to Khartoum, they asked that I apply for another ethical approval from the Khartoum State Ethics Committee (KSEC). The KSEC exempted me from a resubmission, stating that I did not need to repeat the same process that had already been completed by the national committee. Similarly, the initial approval of the federal HAC, which I had secured earlier, was revoked. I was then referred to the Khartoum State HAC (KSHAC), because the work had moved from Darfur to Khartoum. The KSHAC approved the technical aspects of the project. The project also needed approval from the NISS, which asked for some requirements to obtain security clearance. These requirements included my CV and the topic guides.18 After submitting the required documents, they asked me to come to the

18 _{The responsible NISS officer did not accept the topic guide for the FGD, stating that "there is no}

such thing as focus groups; we need questionnaire with clear choices". In response I sent the facilitator's guide that had some prompts and ‘choices’ to be used in the FGD, if needed.

NISS headquarters, for what was an hour-long interrogation-like meeting (Appendix 9)by the security officer responsible for foreign organisations.

5.2.5 Focus group discussions with NGO representatives

Originally, one FGD was planned to include six to eight NGO staff involved in the organisation and implementation of research activities involving the Darfuri population. The targeted NGO staff would be informed about this project by the head office of the NGO in Khartoum, which would also send them a copy of the information sheets, informed consent forms, and invitation letters. Those who agreed to participate in the FGD would have been asked to contact me directly via email.

This plan was adapted to accommodate an unexpected reluctance and refusal on the part of NGOs who had initially agreed to be interviewed in the preparatory visit and then changed their position in the data collection phase. I had to rely more on the FGDs to compensate for the smaller number of interviews. In Chapter Eight, I describe the profile of those who participated.

In contrast to the response to the invitation to be interviewed, the invitation to participate in FGDs was well received. A total of 34 NGO staff agreed to take part. I divided them into three FGDs, each consisting of 10-12 participants. I facilitated one group, while the two female RAs facilitated the other two. Participants were informed about the nature of this study and the FGD through the information sheet. They had an opportunity to ask questions. The FGD facilitators emphasised that the participants had to keep whatever information was shared in the FGD strictly confidential.

5.2.6 How do the empirical findings inform the philosophical analysis

To answer this question, I believe two points need to be clarified and briefly outlined. First, it must be justified why an empirical bioethics approach is needed to answer this project’s research questions. Second, it must be explained how the empirical findings will inform the normative philosophical analysis.

As mentioned earlier, this project combines the collection and analysis of empirical data with philosophical normative analysis. This combination is the main component of empirical bioethics (Dunn et al., 2012), which seeks, as Ives (2008) suggests, to develop “ways of contextualising philosophical moral theorising, and locating it within a discourse that draws on empirical data (generally qualitative) and moral theory” (Ives, 2008, p. 1).

The use of empirical bioethics fulfils the two main requirements for empirical bioethics suggested by Dunn et al. (2012), namely justification and practicality (Dunn et al., 2012). Justification will be provided by discussing the philosophical arguments, whereas the empirical findings are used as evidence to argue for (or against) the practicality of the philosophical justifications. The overall vision is to provide a contextual integration for the normative arguments, without which it will not be possible to “ascertain whether interventions predicated on a particular argument [...] bring about the changes to practice that cohere with the account of the good in the requisite claim” (Dunn et al., 2012, p. 468).

In practical terms, any planning for more comprehensive ethical guidance requires an understanding of the current practices as seen by those who practice

them. The empirical data help to “uncover the normative assumptions and values that lie behind practice and belief” (Ives, 2008) to inform the ethical reasoning. Policies developed without adequate consideration of the views of those affected by them and apart from the contextual realities within which they apply are less likely to be followed.

The use of an empirical bioethics project provides more components to be considered when approaching the normative research questions of this project, which include the established theories that have informed (and sometimes formed) mainstream ethical guidance in healthcare and research, along with a reflective interpretation of the communities within which these theories should apply.

Additionally, using an empirical project helps in achieving the four main goals suggested by Musschenga (2005) to introduce empirical research into practical ethics (Musschenga et al., 2005, p. 469):

1. Description and analysis of the actual conduct of a group with respect to a morally relevant issue;

The systematic review provides a description of the current practice of ethical review and obtaining consent for studies conducted in Darfur. Later, the qualitative study provides further analysis of the findings of the systematic review.

2. Identification of moral issues that escaped the attention of ethicists, but are relevant in a specific context;

Though the moral issues raised in this project are not new, nor have they

gaining a better understanding of the participants’ moral experiences. Audi (1998) suggests that moral experiences “might be a ladder to understanding moral

principles, but not their epistemic or ontic foundation” (Audi, 1998, p. 364).

Moreover, the empirical findings are essential for developing an empirically

informed argument. In this thesis, the empirical findings are qualitatively analyzed and categorized into themes that form the basis of the discussion, which may either support or counter the philosophical arguments upon which the conclusions of this project are based.

3. Description and analysis of the cultural and institutional aspects of a context or practice – procedures, processes, nature of the relations between

subjects, their beliefs, attitudes, and so on – relevant for evaluating the practicality of ethical guidelines and principles;

The empirical project provides an in-depth description of the organizational and societal structures that could explain the participants’ moral positions. Most of the discussion is based on the empirical findings, which would have been inaccessible without an empirical project.

4. Description and analysis of the actual moral opinions and reasoning patterns of those involved in a practice.

The empirical project aims to explore areas that would have been overlooked by a purely theoretical/philosophical study. It particularly aims to study how the

community dynamics, along with the socio-political context, could affect the moral views of the participants (governance bodies, the NGOs, and the IDPs).

Based on my knowledge of empirical bioethics, I use an empirical bioethics approach in which the findings from both the systemic review and the fieldwork are integrated to provide a robust discussion of how the studies conducted in Darfur were and ought to be ethically guided. This integrated discussion is based on the discussion of the participants’ views on how to define “research”, the appropriateness of the mainstream international ethical guidelines to research conducted in Darfur, and finally the participants’ views of how research ought to be ethically guided.

The use of the empirical findings to inform the philosophical analysis is guided by the methodological framework presented by Frith (2012), which consists of four elements: (Frith, 2012, pp. 201–204)

1- Setting out the circumstances;

The empirical findings, along with the relevant literature, are used to map the conceptual boundaries of this project, where the project’s participants specify which humanitarian activities ought to be ethically guided and what characteristics such an ethical oversight should contain. This use of empirical findings will help in providing “a full description of a problem, area, dilemma, and the circumstances in which it is located”, like “examining the social context of bioethical issues or problems”.

2- Specifying theories and principles;

Every set of research ethics guidelines provides ethical principles that ought to be followed for research to be deemed ethical. However, these ethical principles

are usually mentioned in a general abstract form. The empirical findings are specifically used to reflect the participants’ understandings and interpretations of these principles. Moreover, the empirical project is designed in such a way that participants are able to provide their own set of principles. This exploration is essential to ensure the translation of the ethical principles into workable, practical, and feasible rules, as many authors have concluded (van Delden and van Thiel, 1998; Musschenga, 1999; Ives et al., 2008; Kon, 2009).

3- Using ethical theory as a tool of analysis; theory building;

Frith suggests that “theory can be used to approach the data and it can also arise from the data itself [...] theory interprets data and data interprets theory – and the two processes can occur in the same study” (Frith, 2012, p. 203). In this view,