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by Matthew Hunt, Carrie Bernard and Kevin Bezanson
This research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme.
Photo by Gautham Krishnaraj in Kapiri Mposhi, Zambia
Gautham Krishnaraj is a 2017–2018 Aga Khan Foundation Canada International Youth Fellow, 2016–2017 RBC Students Leading Change Scholar, and recent MSc Global Health Graduate (McMaster University). He currently resides in Mombasa, Kenya where he is working with the Madrasa Early Childhood Program, an Aga Khan Development Network Initiative.
There’s something special about the “Z” countries. Often overlooked despite tremendous sights for tourists and rich potential for cultural exchange, they are unique places that not everyone sets out to see. Zambia was an unexpected destination (with a layover in Zimbabwe, but I’m not quite crossing that off my list) during my eight month journey as an Aga Khan Foundation Canada (AKFC) International Youth Fellow, working with the Madrasa Early Childhood Program – Kenya (MECP-K). I am here to provide documentation and reporting support while two MECP-K colleagues are conducting the final support visit in a Care for Childhood Development (CCD) consultancy project with the Luapula and Firelight Foundations. Our work centres around teaching new caregivers (with children 0-3 years old) the importance of play, touch, and stimulation in the critical early years of life. We do so through community based CCD Counsellors, who have been trained in CCD and have engaged their local communities over the past year.
Over the past two weeks, we have observed and mentored our CCD Counsellors interacting with caregivers in Lusaka, Kitwe & Kabwe, as well as more rural communities in Ndola, Rufansa, and Kapiri Mposhi. Covering three provinces and hundreds of kilometers, I can attest to the fact that Zambia is very much, as our local partners have noted, a country under construction. Crimson sunsets are dazzling through the copper dust of the daily grind. It is a beautiful place to have my first true “field experience” of conducting research, although it has not been without its challenges.
This is an internal ethical dilemma that long predates my arrival in the field. My aspirations are, primarily, humanitarian. I believe that humanitarian health care is the bleeding edge of the aid sector, engaging when local systems are completely overwhelmed by a disaster; man-made or natural. It feels somewhat easier to justify the thousands of dollars spent on humanitarians’ travel, insurance, prophylaxis, R&R, lodging etc., when you know that the local providers are acutely in need of immediate external support.While I recognize and grapple with the challenges of this short-term dialogue of urgency, I struggle far more with the challenges that arise in the context of International Development. Many large organizations, even those starting with the good intentions of building sustainable programs, inevitably fill roles that make it impossible to leave. But eventually they must. Vacuums follow. While I am certain that these questions have have been raised countless times prior, and will be raised countless times to come, it begs the question of a better alternative. I remember reading once that Aid is a sector we all wish didn’t exist, because it recognizes our collective failure to create an equitous global society. Can we do more than wish? How do we contribute without feeling/being complicit?
My role here of documenting feedback on the CCD program involves conducting video recorded interviews, and taking plenty of photos. I’ll discuss consent shortly, but every caregiver and counselor signed consent forms before I pulled out my camera. One challenge I did not expect was that during the vast majority of interviews, with the camera clearly visible and me indicating that I had started recording, many women start to breastfeed. I fully support and believe in the importance of de-stigmatizing and normalizing breastfeeding, as it is a most natural part of life. However, all but one of the participants were interviewed were young (16-21 year old) mothers, so using video footage that very clearly shows the whole breast introduces some problems. Am I complicit in the stigmatization of breastfeeding by not using that footage, especially as breastfeeding is a critically important aspect of care for Early Childhood Development? The legal age of consent here is 16, but what happens if the reporting video I will make is circulated elsewhere in the larger Aga Khan Development Network (AKDN)?
On Communicating Consent
Finally, and most critically, few of the rural caregivers had a strong grasp of English. Despite the consistent presence of a translator, and despite all of the CCD Counsellors speaking English fluently, one cannot help but wonder how much is lost in translation. This is particularly important when considering consent. Explaining the purpose and/or potential applications of research can be difficult even in a common language; add in translation and the situation is rife with chances of miscommunication. I have never felt entirely sure that the participant understood why three people had come all the way from Kenya “just to see how they play with their baby”. Indeed, the mere fact that we had come from afar may pressure the participant’s perceived ability to decline participation, further exacerbated by a potential sense of obligation based on existing relationships with the CCD Counsellors. It is hard enough to rapidly build rapport and comfort between researcher and participant in English, and immeasurably more so in a few scattered words of Bemba.
While it’s not possible to fully address ethical challenges A-Z, I did my best to keep my camera stowed until the forms were signed, to sit on the ground with the participants, and to capture them in their best light. Under the brilliant Zambian sun, the latter wasn’t hard at all.
The views expressed here are entirely those of the author, and do not represent the views or opinions of the Humanitarian Health Ethics Network, Aga Khan Development Network, Aga Khan Foundation Canada, Madrasa Early Childhood Program Kenya,
Article By Dr. Dónal O’Mathúna, PhD, Associate Professor in the School of Nursing & Human Sciences, Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA. He is the director of the Center for Disaster & Humanitarian Ethics (http://www.ge2p2.org/cdhe), and the Principal Investigator of the PREA research project investigating ethical issues encountered during humanitarian research (http://PREAportal.org).
The Post-Research Ethics Analysis (PREA) project is a funded research project with two main aims. One is to learn lessons about actual research ethics issues and innovations from health research conducted in humanitarian crises. The second is to develop a tool to facilitate and promote ethical reflection among various stakeholders in such research projects.
The project was the brain-child of Dr. Chesmal Siriwardhana, arising from his experiences in the field and his desire to ensure that research participants were respected in research. Over a number of years while at Anglia Ruskin University, and then as Associate Professor in the Department of Population Health at the London School of Hygiene & Tropical Medicine, Chesmal developed and refined the research proposal. The PREA project was successfully funded in 2016 for two years through the R2HC/ELRHA programme. Tragically, Chesmal died in 2017 in a road traffic accident just as the project was getting started. The new Principal Investigator is Dr. Dónal O’Mathúna, Associate Professor in the School of Nursing & Human Sciences at Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA.
The PREA project arose in recognition of the growth in humanitarian health research which is crucial to provide evidence to guide decision-makers in humanitarian contexts. Health research in such contexts, including during disaster relief, often involves traumatized, vulnerable populations and faces numerous ethical challenges. The PREA project was developed in response to anecdotal discussions and team members’ personal experiences that research in humanitarian crises faces difficulties with the current research ethics governance model. Attention has focused on issues of ethical approval procedures and informed consent, but anecdotal evidence suggests that other ethical challenges predominate. The PREA team is concerned that procedures focused mostly on ethics approval prior to research starting may unintentionally overlook the actual ethical challenges experienced during and after the implementation of research projects. As a result, we believe that research is needed into the actual experiences of researchers (and other stakeholders and participants) involved with humanitarian research. A manuscript arguing this case and providing justifications has been submitted for publication by members of the PREA team and will be linked here when available. In addition, tools that help facilitate ethical reflection and decision-making throughout the research process would be helpful, especially in projects involving vulnerable participants.
The PREA project will gather evidence on the actual experiences of research ethics issues by researchers, ethics committees and other stakeholders when conducting health research in humanitarian and disaster settings. This will be done by carrying out qualitative interviews in a number of humanitarian settings in countries in Asia and Africa. Local researchers will be trained to carry out the interviews and thus help facilitate the development of local research infrastructure. Currently, research ethics approval and other permissions are being obtained for the various sites. By interviewing those involved in the conduct and review of humanitarian research, insight will be gained into the actual ethical issues encountered during the research process. We are also very interested in learning about innovative ways that researchers have responded to ethical challenges so that we can learn from other teams and share best practice.
The interviews from the different sites will be analyzed qualitatively and themes identified that will be used in developing a tool to help future researchers reflect on the ethical issues in their research projects. An early version of this tool will be piloted in each of the sites where interviews will be conducted as part of a research ethics training programme to be delivered in each country. This will give local researchers an opportunity to comment on the qualitative analysis and the developing PREA tool. In this way, the PREA project aims to contribute to the promotion of ethical values and practices in the conduct of humanitarian health research. In keeping with Chesmal’s vision and passion, we hope this will help promote humanitarian health research of the highest ethical standard, and help ensure future participants and their communities are respected throughout their involvement in research.
Details about the PREA team and partner research organizations are available on our project website at http://www.preaportal.org. This portal will eventually allow researchers to post examples of ethical challenges they have faced, and ways they have developed to address them in a humanitarian context. To get in contact with us, you can email email@example.com, or follow us on Twitter @Ethics_Analysis or Facebook https://www.facebook.com/EthicsAnalysis/.
From September 17-19, Kevin Bezanson represented the Humanitarian Health Ethics research group at the 5th International Public Health and Palliative Care Conference held in Ottawa, ON.
Here is the PDF version of the poster entitled –
Health professionals’ lived experiences of palliative care provision in humanitarian crisis: Moral experiences confronting the suffering of patients who are dying or likely to die in settings of war, disaster, or epidemic.
The poster is based on ongoing research for a R2HC funded project entitled:
Refugees and many migrants suffer from limits on their abilities to move around the world, even in pressing or urgent circumstances. They are often forced to leave their homes for reasons beyond their control, including war and civil unrest, political and religious persecution, economics, or famine and other natural or man-made disasters. Once displaced, whether internally or externally, they face pressing needs for food, water, shelter, and health care. Local governments, international agencies and non-governmental organizations often struggle with providing for their needs, particularly in resource-poor regions of the world. Recent socio-political changes in the United States, Western Europe and elsewhere have placed additional restrictions on the rights of migrants and refugees.
In solidarity with these refugees and migrants, we are hosting a no-travel virtual conference to explore the ethical, legal, philosophical, and social issues associated with refugee and migrant health in a world of economic, geopolitical, and psychological borders.
Location: Online (no travel)
For registration and other information: http://www.resistingborders.com