What’s ethical about that?

This is the final blog in a series of four in which I document my research in Dhaka and the Sirajganj district of Bangladesh. You can read the other posts here. My work was facilitated by Lepra, but all views expressed are my own.

Outside Lepra Office, Sirajganj. Image Credit: A. Bow-Bertrand

Outside Lepra Office, Sirajganj. Image Credit: A. Bow-Bertrand

One of the prerequisites of any primary data collection research project is ethical clearance. In the case of work beyond the bounds of the UK, this means both in-country and university specific proposals and checks. It’s a painful, but necessary process, and as the wise-guys on my University College London (UCL) ethics committee crack, the process isn’t over once you’ve received the letter saying ‘go for it’ (it kind of is, but obviously you can’t suddenly morph into an amoral researcher à la Victor Frankenstein, but UCL don’t really do jokes, so I’ll just leave that there).

Flippancy aside, there have been many points during my time in Bangladesh where I have actually been more than usually aware of self-doubt, which is better figured as ‘researcher reflexivity’ for the purposes of a Masters dissertation report. Questions such as ‘what should I do here?’, to ‘how do I eat with my hand without making everyone watching me feel physically sick?’ or ‘what’s right?’ cropped up on more occasions than I might have anticipated, some of which will resonate with others who have carried out fieldwork in non-native countries, and possibly in languages in which they are not conversant.

View of Lepra Office, Sirajganj. Image Credit: A.Bow-Bertrand

View of Lepra Office, Sirajganj. Image Credit: A.Bow-Bertrand

Both non-fluency and non-nativity were true of my status researching in Bangladesh. Certainly, the investigative scope and my suitability were deemed appropriate by the ethics round table, but the everyday reality raised ethical, or rather moral (the two not necessarily being interchangeable, the latter representing a personally bound set of values rather than perhaps an institutional status quo) considerations. I am fully aware that my work here would have been near impossible without the facilitation of Lepra who supported me from sourcing ‘in-field’ accommodation (incidentally a lovely top floor room in their offices), liaising with their remote clinic staff during the recruitment process and acquiring a Bengali-English translator.

In many ways, their support mitigated many logistical and personnel related ethical dilemmas that may otherwise have arisen, including sustainability of interaction and management of medical and psychological circumstances established or exposed through the course of my in-depth interviews and focus group discussions. Indeed, as the staff here remark, the majority of the participants involved in my research had at one stage been treated or had their conditions managed by the Lepra team or associated government staff. Lepra is an entirely non-profit organisation, reflected in their two-pronged methodology in Bangladesh: early detection of leprosy cases alongside health education and the provision of free disability or reaction management and multi-drug-resistant therapy (MDT) for all identified persons with leprosy.

DFID group; participatory observation. Image Credit: A.Bow-Bertrand

DFID group; participatory observation. Image Credit: A.Bow-Bertrand

This free at the point of care delivery is a divergence from the charges imposed on participants for other diseases with many of their medical histories clouded by financial crisis through travelling, without relief or clarity, between local health service doctors unaware that the person before them was presenting with leprosy. For those who found themselves too financially crippled to pursue treatment or, indeed, prior to their awareness or referral to Lepra, there are common narratives of self-medication in the form of daubing non-itchy anaesthetic patches (a telltale early sign of leprosy) with ghee, and of doubled visits to the mosque to pray for deliverance. For the majority, Lepra’s infiltration into their lives represented a proven treatment, the hope of a restoration of their former life, and a manageable programme that was not financially restrictive.

One side-effect of this is that many such participants feel indebted to Lepra on personal levels of trust and gratitude. It was little surprise that all participants invited to my research programme agreed on first invitation – and willingly so. This was the first ethical minefield to navigate – managing participant expectations, and iterating their option to either decline participation at invitation or at any moment during data collection without any prejudicial treatment towards them from Lepra, and vice versa should they decide to take part. This aside, the lesser acknowledged and perhaps unexpected ‘what should I do?’ rhetoric was associated with information provision.

Image Credit: A.Bow-Bertrand

Image Credit: A.Bow-Bertrand

I am all too aware of the pitfalls of the so called white-saviour complex, something that my own privilege denies full dissociation from. However, a lesser extent of the saviour debate manifested in education or what such a narrative would most likely term ‘enlightenment’. While any patient diagnosed with leprosy by the Lepra central hub and clinic stations who is then marked for MDT treatment must compulsorily receive health information relating to the causes of leprosy, its infectivity and complication management such as washing techniques to limit the potential development and recurrence of ulcers, there is evidence that there are failures in comprehension and dissemination. A blanket question asked to all interviewees was ‘what do you think is the cause of leprosy?’ Largely, the literate participants identified germs or bacterium as causative agents.

But at least half of all participants expressed uncertainty, or a host of other perceived factors deriving from places as diverse as religious scripture, cinema, folklore and personal imagination. Amongst the most deviant answers were ‘hot summer air’, ‘sin’, ‘a cut on my finger’. One of the gold standards of research, particularly qualitative which more typically garners – moreover, encourages – personal narratives, is lack of expressed surprise or judgement. I have a dead-pan poker face on tap when required (cultivated from a childhood with a twin who tells even worse jokes than I do), but such responses did not inspire judgement so much as a dilemma – to educate or not? My personal first point of inquiry if I were to suffer from any condition – including, ironically, mental health – would be to try to identify the cause or trigger. How else does one begin to contemplate seeking an appropriate course of treatment or getting one’s head around the nature of our own health without this knowledge?

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Children of the focus group discussion participants arrive to wave us off. Image Credit: A. Bow-Bertrand

Of course, I wanted to pause the interview and throw ‘germs’ into the equation, for it has been proven that health condition knowledge not only empowers persons with leprosy to manage and even mitigate prejudiced comments based on such unfounded misinformation, but also feeds into an effective preventative strategy. However, how does someone – me – who is neither a clinician nor a person with leprosy inform said participant of the actual cause without somehow sounding condescending or irreversibly traversing the boundaries between researcher and medical care professional? In actuality, it is very difficult. The first time the situation arose I questioned why I didn’t pause then and there, but something instinctively told me that a passing correction was neither context nor time appropriate.

For many participants, including those who have no idea what has caused their leprosy, this is not due to ignorance, but rather a process of consideration that has not provided any understandings, or an inductive method that has established their own system of meaning, even one that is incorrect according to the biomedical model. On the second instance, I was prepped at the end of the interview with a bog-standard Lepra information leaflet, which I was able to talk the participant through with the support of clinic staff. In many instances the participants were willing to reassess their disease understandings, but for most part the fundamental truths remain the same, and all that really matter – that following the provided course of MDT and self-care programme they can restore their health to at least a functional level while personal treatment adherence limits the chances of both relapse and disability progression.

This research has highlighted that there is a lot to learn – on both sides of the table, or on the same side if you’re a fan of bench seats, which I absolutely am.

Leaning, Jamuna River. Image Credit: A.Bow-Bertrand

Leaning, Jamuna River. Image Credit: A.Bow-Bertrand

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