5 Points to Consider When Starting a Project
How can the physical and mental health of migrants be supported? This is the focus of a new international project, Doctors within Borders, which aims to explore grassroots advocacy and healthcare interventions addressing the needs of asylum seekers and refugees. Funded by the Wellcome Trust, the project brings together researchers, practitioners and civil society collaborators.
As a member of the Doctors within Borders network, I wonder: What do ethical research practices with displaced people entail? This question was the focus of Beyond ‘Do No Harm’, a workshop held at the University of Edinburgh (Oct 2019). The workshop was premised on the idea that the ethical mantra ‘do no harm’ is insufficient when working with displaced people. To this end, the workshop was a forum to share queries, concerns and practices about what beyond ‘do no harm’ might entail.
Here I highlight five takeaways that may be of use to the Doctors within Borders network and others working with vulnerable populations.
Note: The workshop was run under the Chatham House Rule and this blog post follows in that spirit.
1. Get things off to the right start
First, ask hard questions of yourself. One challenging question posed was: Who am I to undertake this research? Put more gently, am I the right person to do this research? Do I have the appropriate lived experience, skills and commitment? If no, how can I create space for others to undertake this research? If yes, how can I support research co-design and knowledge co-production?
Another challenging question: Who benefits from this research? For an academic, this might entail publishing articles and advancing your career. If an extractive approach to research is used, the lives of participants might remain the same with no material improvement. If a collaborative research approach is taken, there may be opportunities for exchange and empowerment, such as through ongoing relationships. Informally, beyond the research project, offers of assistance, like providing groceries, translating documents and introducing community contacts, are ways that researchers can assist vulnerable participants. This requires setting clear boundaries, such as clarifying that the researcher is unable, for example, to provide any information on the status of asylum applications.
2. Work together
Project partners, including organizations that work with displaced people, need to be included in the project from the start. Involvement in co-design at early stages will allow for more valuable knowledge co-production at later stages. To be inclusive and equitable, this approach requires reflecting on bigger picture questions, such as: How are post-colonial, race and gender dynamics expressed in the research environment? How do such dynamics impact the knowledge produced? Is English privileged as the default language? If so, how can other languages be incorporated in data collection and dissemination?
All research team members need to understand expectations regarding ethics, from initial consent through to data management. The larger the project team, the greater the project complexity and the more effort required to ensure that all members are on the same ethical page. This begs questions such as: How can diverse experiences and cultures within a project be recognized, rather than homogenized? How do concepts, like ethics and giving consent, translate across language and culture?
3. Tell stories
The Mental Health Foundation of Scotland works with asylum seekers and refugees. Using an ‘experts with experience’ model, they train volunteers with lived experience as migrants to facilitate conversations about health and well-being amongst their peers. Mohamed Omar, Policy and Development Officer for the Refugee Programme told the workshop about initiatives that aim to create connection and reduce social isolation, such as a gardening project that links refugees and non-refugees. Another project, Stories from Syria, lets participants select and tell a story from their many harrowing life experiences. This project gives participants time and space to reflect on what they want to share and how they want to frame it.
The ability to describe the experiences of others and to help others tell their stories is one of the strengths of social scientists. As is drawing attention to voices that are absent and excluded. When working with people who are displaced, this might require extra care and attention. From a practical standpoint, this includes paying participants for childcare and transport costs, as well as their time. From the perspective of craft, this involves tailoring an interview to particular settings. Social anthropologist and workshop presenter, Dr. Lotte Buch Segal works with people who have experienced torture. She emphasizes that vulnerability is situational and to never assume you know what might cause a participant distress. It could range from memories of living in a war zone to subtle family dynamics taking place in the home at the time the researcher is visiting. In some cases a formal active interview can resemble an interrogation setting. Activities like walking or doing dishes together can create a more casual and less intimidating exchange.
4. Ethical after care
Ethical after care refers to both working with participants and to the project as a whole. Dr. Buch Segal emphasized that ethics is a process. To this end, an interview with a vulnerable person should not be a one-off encounter. Rather, it is important to check-in with the research participant following an interview as it gives the researcher an opportunity to gauge the well being of the participant. Did the interview cause distress? If so, how can the participant be supported? Further, the research participant may have more insights to offer after reflecting on the initial conversation.
Eventually, the research project itself will come to a formal end. However, the project will have an afterlife. This might take the form of a project website that includes photos, stories and quotes. The lifespan of such a tool is often indefinite. Participants need to approve how they are represented and have the option to change their minds down the road.
5. Up with forums, down with forms
The workshop concluded with a discussion of university ethics review processes. In contrast to an ‘ethics first’ approach to research design and practice, the actual experience of applying for ethics approval is isolating and can feel like a box-ticking, hoop-jumping afterthought. Deputy Director of Research Ethics and Research Integrity in the School for Social and Political Science at the University of Edinburgh, Dr. Niamh Moore, asked research participants how the ethical review process (currently under review), can support a more relational, ongoing and caring approach to working with vulnerable populations? One response was to emphasize community and conversation at the departmental level. A regular ethical forum or check-in could provide an informal space for researchers – at any career stage and at any project stage – to trouble shoot emerging issues and benefit from a support group. Such first-hand experience of a supportive environment could translate to work with asylum seekers and refugees.
Resources
Beyond ‘Do No Harm’: Questioning Ethics in Research with Displaced People in the Global North and South. Project Report. Forthcoming.
If you are interested in joining the Ethics First email list, bringing together academics, students and civil society actors in Scotland to develop a community of ethical practice, contact
- Dr. Ann-Christin Wagner (awagner3@exseed.ed.ac.uk)
- Dr. Emma Hill, GLIMER (e.hill@ed.ac.uk)
Workshop Funders
Dr. Stephanie Sodero is a Banting Postdoctoral Research Fellow at the University of Edinburgh in Medical Anthropology and member of the Doctors within Borders Network
This blog was originally posted by Stephanie Sodero here.