Research ethics, disability and COVID-19 in Africa

This blog interviews Dr. Befikadu Esayas, an Inclusive Ecosystems Researcher and former chair of Includovate’s ethical review board. This interview is for a blog series that reflects upon the impacts of the COVID-19 in Africa on research work at Includovate.

How will research change post-COVID-19?

Research will change because of the COVID-19 pandemic and social distancing measures. Conventionally our research has been carried out through physical field observations, interviews, household surveys and face-to-face modes of data collection. Because of the current social distancing requirements, there is a need to change how we design and carry out research. We are moving into e-data collection, e-conferencing and telephone interviews. While these all come with different risks, the positive side of remote research is that it has a less negative impact on the environment due to less fuel consumption, less paper, less emissions and fewer transport accidents. In Ethiopia, where I live, we have a load of road fatalities so anything that brings this down is positive.

Some of the risks associated with remote data collection includes the loss of intercultural exchanges in the field. Field work necessitates the need to know the culture and experiences of a particular community and society in order to operate sensitively. A lot of Includovate’s research occurs with the poor and marginalized where the fastest way to build rapport is face to face. Conducting research via the telephone requires a whole new way of building rapport.

Key informant interviews are usually an hour long, but people do not want to sit on the phone for an hour. As a result, we have to ask less questions and do more probing, so the interview is more like a conversation than an interview. This requires superior research skills and we have to more closely supervise and train our enumerators (data collectors) so that they can collect robust data through this medium.

What are some of the COVID-19 related ethical issues that Includovate’s Institutional Ethical Review Board (IRB) has to consider?

Includovate has its own independent research ethics board. When I was the IRB chairperson, we ensured that every proposed research assignment underwent ethical clearance – whether it was carried out in Ethiopia or elsewhere. Ethical clearance requires reading the documents submitted by the applicants, discussing the proposed approach and any potential ethical considerations with the other IRB members and responding with comments in a timely manner. Our IRB is made up of external consultants and internal Includovate staff members and includes people with a range of different cultural backgrounds based around the globe. Consequently, virtual IRB meetings are common, but it has been harder to get people together online during COVID-19. We have parents who are homeschooling their children at the moment and they struggle to find the time to participate as a volunteer.

COVID-19 is forcing us to innovate and think differently about research. We have an ethical duty to carry out research even during global pandemics, but we have to keep our researchers and our respondents safe. For example, our researchers should check in with participants on the day of the interview (if face-to-face) to ask a series of screening questions related to COVID-19 symptoms and exposures. We also have to arrange the interview space to provide at least 2 meters distance between each participant (if more than one) and not engage in any hand shaking or other actions that include touch or close physical proximity. Bringing disinfectant to wipe down surfaces or any materials (such as pens) that are shared between people and providing sanitizers (or other wash facilities) to enable both facilitator(s) and participants to clean hands before and after the discussion are now essential. In some of our research settings, access to running water may be limited, so we have to bring extra sanitiser and take extra precaution. We also have to give consideration to issues such as leaving any completed paper forms (such as informed consent statements) in a sealed envelope for no less than 48 hours each time they are transferred from one person to the next to ensure that they are not a point of transmission. In this regard, COVID-19 has made research more serious, costly and complicated.

Some of the other ethical issues concern safeguarding and confidentiality. When carrying out interviews remotely – it is hard to know who else is in the room at the time of the interview. Confidentiality cannot be guaranteed if you cannot control the interview space. The safeguarding concerns are particularly acute when it comes to research on children. The imbalance of power in any adult/child interaction is difficult to overcome, along with appropriate communication styles. As UNICEF note: special attention should be paid to each child’s right to privacy and confidentiality … and to be protected from potential harm and retribution – this is harder to do remotely.

What are you working on at the moment?

I am the team leader for a feasibility study that is being conducted in Niger, Burkina Faso and Ethiopia. We are assessing the feasibility of a proposed inclusive education project by understanding the existing opportunities and challenges vis-à-vis inclusive, equitable, and quality education programs in each country. This requires mapping the landscape and interviewing potential partners and stakeholders for the client. I coordinate all the project activities from the inception report down to data collection, data analysis, report writing and finally validating the findings.

How has COVID-19 affected the Africa Action Feasibility Study?

COVID-19 has impacted all the activities Includovate carries out. Firstly, data collection, planned for early April 2020, was delayed as field visits to the three countries was not possible due to COVID-19. Respondents have been harder to reach via the phone and email, than if we could visit them in person. We have had to negotiate a revised timetable that is workable with both research participants and the client.

How have you adapted the Africa action feasibility study methodology since COVID-19?

The global pandemic is having social, economic, political and cultural impacts across the world. Developing countries such as Ethiopia, Niger and Burkina Faso are particularly vulnerable because the social economy and other infrastructure are limited and fragile to shocks. This adds another dimension of difficulty to our research and we are forced to look for alternative ways of doing things. With regards to the Africa action feasibility study, we have switched our data collection to online surveys, including with people from disability organizations and sometimes our national/in-country researchers have had to follow up the online survey links with phone calls to help respondents complete the information online. Online stakeholder mapping has been challenging. Using phone calls instead of face-to-face interviews has created a headache in constant rescheduling. It is somehow easier to cancel a phone interview, than one that is face-to-face. We are also planning to undertake an online validation workshop among the implementing partners and project staff in three different countries using Zoom. This is a new approach for us, and we will be learning as we go.

Any final words?

We are living in hard times, but we have to keep going. Through the chaos and disaster will come new ideas. We believe strongly in the mission of Includovate. We will find a way to keep researching the under served and find new ways to connect and empower excluded and marginalised communities.

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