Title:The first-mile: Community experience of outbreak control during an Ebola outbreak in Luwero District, Uganda

Transcription

1 Author's response to reviews Title:The first-mile: Community experience of outbreak control during an Ebola outbreak in Luwero District, Uganda Authors: Daniel H de Vries (d.h.devries@uva.nl) Jude T Rwemisisi (jtibemanya@yahoo.com) Laban K Musinguzi (rebman2k@yahoo.com) Turinawe E Benoni (tbenoni@gmail.com) Denis Muhangi (dmuhangi@chuss.mak.ac.ug) David Kaawa-Mafigiri (mafigiridk@yahoo.com) Robert C Pool (r.c.pool@uva.nl) Version:4Date:12 November 2015 Author's response to reviews: see over

2 Reviewer's report Title:The first-mile: Community experience of outbreak control during an Ebola outbreak in Luwero District, Uganda Version:3 Date:21 September 2015 Reviewer:Daniel Bausch Reviewer's report: MAJOR COMPULSORY AND MINOR ESSENTIAL REVISIONS GENERAL COMMENTS While better community relations are imperative, there also needs to be a degree of objectivity in the process, and I feel that the paper sometimes presents a bias against healthcare workers and other authorities conducting the more traditional outbreak control activities. For example, the authors imply that the sentiment expressed by the healthcare worker in lines that they effectively controlled the outbreak and that the aim is to change behaviour (line 255) is inappropriate or just plain wrong. It is close to impossible for us to know how correct or incorrect the healthcare worker statement is, but it is a fact that outbreak was indeed kept small, so the sentiment can t necessarily be considered wrong. And it s hard to argue that, to some degree, the goal of the outbreak response is indeed to change behaviour. I think that everyone would agree that we need to engage with the community better, but the comments by the community members interviewed by the authors are often subjectively assumed to be right and those by the healthcare workers as wrong. We reread the paper with an eye towards this bias. In the example given by the reviewer, it seems that the reviewer may have read a negative perception in it. The intention of this part is to suggest that the core of behavioral change was the fight against misconceptions, not behavioral change perse. We agree with the reviewer that behavioral change is important. Our point is that this needs to be done in consultation with the community, through a process in which ownership of behavioral change is taken. Otherwise it has a high likelihood of fueling community-based resistance. We addressed this issue by several revisions. For example, we took out line 371 remark health workers also ignored the request. While this is what we heard from community members, we did not verify this with the health workers directly involved, so this remark fuels fire to the perceived bias on our behalf, which we like to avoid. We also reformulated text so that it is clear these are communal perception, not an author bias, e.g. the text on p11 (line 431) the perceived in She argued that this perceived lack of expressed care and information from health workers escalated the idea that it was amayembe. Another aspect that requires some discussion in the manuscript is that not all misunderstandings of ineffective response can be chalked up to cultural insensitivities. The authors cite various examples where the advice or actions taken by healthcare workers or government authorities would indeed be considered by most experts as objectively wrong at worst or disorganized at best. Examples include that Ebola causes every pore to bleed and that an Ebola patient would die in 24 hours (lines ), the policeman reading names and threatening people promoting that the source of the problem was amayembe (line 368), conflict over who was in charge (line 434), the health workers allegedly

3 asking patients families for money to transport samples (line 443), the IFRC volunteers lacking sufficient material support (line 448), the recommendation to stop frying food for sale to the public (line 453), providing half a bottle of disinfectant for an entire school (line 500), bribery and theft on the part of health workers and authorities (lines ), recommending that apparently asymptomatic contacts be isolated (lines ), and many others. How much of the failings of the response efforts, if it indeed failed, were due to a lack of cultural understanding or was it perhaps just that things would have worked better if the responders were simply better informed, trained, and prepared? Of course there is room for improvement on both fronts, but the article does not give due consideration to the latter. We understand this sentiment, and include a note on this in the discussion section. Particularly lack of funding may impede proper training. We do however also see a relationship between being informed, trained and prepared and cultural understanding; these are not mutually exclusive issues in our view. Lastly, one of the challenges to anthropology in outbreak settings is to provide as concrete and actionable steps as possible to enable control of the outbreak. While no one questions the need to respect and listen to the community as a necessary ally (line 479), there is also the realistic desire and need to stop transmission. It s a gray area, of course, one that sometimes again seems over-simplified by the authors, with an anti-healthcare worker/authority bias. For example, in lines it s pretty clear that the authors think that the authorities took the wrong approach. But what were the choices? Should we accept that a community indeed concludes that Ebola is due to witchcraft or spiritual attacks and thus does not embrace some of the prevention measures that those who believe that the outbreak is due to Ebola virus would advocate? There is cultural sensitivity and relativism, but I think that most of us, at least involved in Ebola response, and I assume the authors as well, think there is also scientific truth. If you believe that Ebola is indeed caused by a virus, you cannot, even in the name of listening to the community, simply be open to accepting other interpretations that may NOT lead to control. The reviewer points at lines as example of why we as authors may have been biased. This line however is a citation from a villagers account. We tried to provide their perspective. While the sentence may appear as if we have a bias against biomedicine, this however is not the case. We have throughout the revision tried to reduce apparent bias. Further, the reviewer rightly points out the gray area that exists between openness to alternatives and the need for control. We argue that openness to other interpretations are of merit because they address the first mile of outbreak control. The case study points at ways in which collaboration can be established, and a body of literature that has tried to investigate how this can be done respectfully. The difficult question is how we can avoid shutting out community needs in the context of rigid control measures. For this, we argue that what we need first is openness to listen in order to find ways to include, as opposed to exclude, the community. We already took this issue up in the discussion, and part of it is related to the work of the Hewlitt s, but have reworked this section to include more clearly the problem brought forward by the reviewer.

4 SPECIFIC COMMENTS 1. The manuscript is quite long and sometimes rambling, with significant repetition. There are also frequent minor grammatical errors and some awkward phrasing that often obscure meaning. Thus, some revision and copy editing is needed to improve readability and comprehension. the manuscript was copyedited. 2. Many readers, including me, may be unfamiliar with snowball sampling. Thus, a brief description and reference should be added. this was added. 3. Lines and 672: What is meant by at the higher level and at the top? Top of what? Top has been deleted and higher level clarified. 4. Lines 86-88: The meaning of the sentence is unclear and is not facilitated by the over-use of acronyms. In this latter regard, the authors introduce quite a few acronyms (e.g. CHMS, DHIS2, IEC and others) that are then not used more than once or twice. This just adds confusion. Recommend eliminating acronyms that are not frequently used in the manuscript. Deleted and clarified. 5. Lines : No reason to include results summary here. Save data for the Results section and interpretation for the Discussion. Deleted. 6. It is up to the editors, but it is unusual in most journals to cite page numbers of references in the body of the manuscript (example, line 136). Editors can decide. It is common within anthropological literature. 7. Page 4: While the recap of Hewlett s work is interesting, this section is overly long and provides perhaps more detail than needed for this paper. We have shortened this section. 8. The figure adds little to the paper. Recommend deleting.--> deleted. 9. Lines : It is not clear who is meant by first attendant and second attendant. Clarified. 10. Lines : The sentence beginning It was mentioned is unclear. added words for clarity. 11. Throughout the manuscript: the term for the spirits is variably written as mayembe and amayembe. Please correct or clarify. We clarified this within our team and concluded that Amayembe is used in a sentence, while Mayembe is the noun ( spirits ). We have rectified this in the text by using Amayembe throughout the document, which is the best in sentence construction ( the spirits ).12. Lines : It is not clear how/why the policeman thought that sending for the traditional healers would result in revenge killings. If the community did not believe this was due to a virus, how would they see the traditional healer as culpable, and thus meriting revenge? This has been clarified. The revenge killings result from the traditional healer s assessment of the culprits, or those responsible. It is not the healer itself who would be killed (that would not be a very sustainable business model).

5 13. Lines and : Control of Ebola virus transmission requires a swift response for many reasons, and countering other interpretations of events before they take root, as mentioned here, is perhaps another one. The week s delay is unfortunate but perhaps represents the realistic challenge of getting samples, confirming lab results, and assembling and coordinating the response team and necessary logistics. Sending someone early to communicate the community, even before the formal response and all information is available, seems like it might be prudent, but would it just exacerbate the distrust of authorities? And even if they could respond earlier, how likely would it be that this would change these very long-held and ingrained beliefs regarding amayembe? This issue is portrayed in a fairly simple manner, but is actually quite complex. This reasoning of complexity is exactly why behavioral and sociocultural experts such as anthropologists or social workers trained in community relationships have an important role to play in outbreak response. 14. Lines : It s not clear who made this list and what the criteria were. Also not clear that there was a scientific reason to draw blood or test the person mentioned here. So, while communication could have perhaps been better, it s not necessarily the case that not testing this person was a wrong decision. We have included the points that we do not know who made the list and why tests were done, it does seem that not paying attention to the communal yardstick for Ebola illustrates a lack of sensitivity and understanding of the value of local knowledge. If only for building community trust, this person should have been tested. 15. Lines 488 and 526: Most readers will be unfamiliar with Ugandan currency. Recommend converting to or adding the amount in U.S. dollars. Done. 16. Lines : How do the authors explain the seeming contradiction of a population that simultaneously reportedly soundly rejects the idea of Ebola being the cause of the problem but then suffers extreme stigma as a result of Ebola? First of all, the population did not soundly reject Ebola as the cause of the problem, as there were discussion and also divisions within this community. Second, we do not see the contradiction in this statement as the stigmatization has no direct relationship to the scientific cause, but instead to the observable Ebola symptoms. Third, if the reviewer refers to the sitgmatisation of the community as backwards, not to the virility of the outbreak, then this is a long-standing cultural issue related to modernization which this article tries to point out as a counterproductive attitude. Level of interest:an article whose findings are important to those with closely related research interests Quality of written English:Needs some language corrections before being published Statistical review:no, the manuscript does not need to be seen by a statistician. Declaration of competing interests: I declare that I have no competing interests. Reviewer's report Title:The first-mile: Community experience of outbreak control during an Ebola

6 outbreak in Luwero District, Uganda Version:3Date:26 September 2015 Reviewer:Anne W. Rimoin Reviewer's report: Overall Assessment:1. Is the question posed by the authors well defined? The question is defined at the beginning, but the focus does not seem to be maintained throughout the article. We have brought the question back into the discussion to strengthen the linkage between the results and the initial question regarding people-centered early detection. 2. Are the methods appropriate and well described? The sampling method is not described beyond identification as snowball sampling. Description of the population size or reason this method was used was not addressed. We have included a description of snowball sampling. Population size was included for the Parishes, but could not be obtained for the exact villages (Katuke & Dekabusa). 3. Are the data sound? It is difficult to assess whether the qualitative data are an accurate reflection of the community. We are confident that it is. As a result of 18 months of ethnographic observation by three doctoral student in the same general area, the cultural attitude has been well understood and captured using well established techniques of participation and observation, including transcribed interview/focus group materials from 82 respondents. The two site themselves are representative for a very distributed network of rural villages, in which Buganda culture is dominant. 4. Do the figures appear to be genuine, i.e. without evidence of manipulation? Yes 5. Does the manuscript adhere to the relevant standards for reporting and data deposition? This manuscript seems to be written in a style appropriate for social sciences research and does not heavily emphasize the evidence-based approach of health sciences literature. 6. Are the discussion and conclusions well balanced and adequately supported by the data? The conclusions align with what the authors presented in the results section. 7. Are limitations of the work clearly stated? No. This is particularly concerning in the Methods section, where the sampling method chosen is highly unlikely to be unbiased. Very little information is given about the demographics of the communities studied or why the authors feel the informants views are reflective of the communities views. Indeed, the authors mention that the community members differed in their views of amayembe, a major factor in community interpretation of the outbreak, yet do not address the limitation that the small sample size and sampling method may introduce in this

7 study. We have included more details on the method used, including their limitations. Etnographic methods always carry a certain level of subjectivity, if not reflexivity. However, in this case no less than three doctoral students studied this community for over a year which strongly supports the conclusions made. 8. Do the authors clearly acknowledge any work upon which they are building, both published and unpublished? This is difficult to assess for references to anthropologic literature. The key work of the Hewlitts is cited extensively. 9. Do the title and abstract accurately convey what has been found? Yes. 10. Is the writing acceptable? The bulk of the writing is of good quality, although there are numerous grammatical errors that must be corrected prior to publication, as well as some sentences that are somewhat ambiguous. Copy editing has been conducted. - Major Compulsory Revisions 1. The authors must expand on the Methods section, describing in detail their sampling methods, community demographics, and why specifically the communities mentioned are comparable. The authors should also describe in greater detail how the interviews were conducted. They give the impression that the informants were the primary drivers of the conversations, but do not indicate whether they used a standard format for all meetings, asked a standard list of questions, etc. They do not mention what language(s) was (were) used for interviews, and if these languages were spoken by interview/group leaders. We note how the two communities are located near each other and culturally similar, sharing a similar history and Buganda culture. As many details as possible have been added to clarify the method, including more details on the analytical method using grounded theory and limitations of the method used. 2. While the topic of community experience from an emic perspective is relevant to the public health community, particularly in light of community resistance to rapid implementation of western infection control procedures during the West Africa ebola outbreak, this article does not seem to be written for a public health audience. The extensive narrative offers examples of important, yet subtle and perhaps community-specific, miscommunications that led to community mistrust of health care workers. While anthropologic researchers have provided valuable insight into the beliefs and perspectives of persons within the study communities, sadly, it is unlikely that even conscientious health workers will have the time and resources to develop a cultural understanding of unfamiliar communities on par with what is presented in this article, particularly in the midst of an acute and deadly communicable disease outbreak. The authors suggestion to incorporate the Ebola Response Anthropology Platform certainly provides a more practical suggestion to this audience. A focus on broader do s and don ts of communication likely would be valuable to the public health community as well. We have sharpened the conclusion towards more practical aspects. Such as learning how to respectfully agree to disagree while simultaneously finding commonalities in humanity to facilitate collaboration during the first mile of outbreak control.

8 - Minor Essential Revisions Grammar and clarity comments made in the text should be revised. The table also needs to be reformatted. The manuscript has been copy-edited. Level of interest: An article whose findings are important to those with closely related research interests Quality of written English: Needs some language corrections before being published Statistical review: Yes, but I do not feel adequately qualified to assess the statistics. Declaration of competing interests: I have no competing interests.