DRAFT PLEASE DO NOT QUOTE NOTE TO THE DISCUSSANT: due to a lack of - - PDF document

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

1 DRAFT – PLEASE DO NOT QUOTE NOTE TO THE DISCUSSANT: due to a lack of time we haven’t been able to review the English and translate the quotes. This will be done before the presentation. Title Reporting scientific results back in Health and demographic surveillance systems in Africa: a socio- anthropological perspective on knowledge interaction and behavioural change. Authors : Nathalie Mondain (University of Ottawa, School of sociological and anthropological studies), Somnoma Valérie Ouédraogo (MacEwan University, Edmonton, School of Social Work) Main issues This paper addresses issues related to knowledge circulation between participants and researchers in the population and health domains in developing countries, more specifically in health and demographic surveillance systems (HDSS) in sub-Saharan Africa. Such research platforms have significantly increased in the past decades (http://indepth-network.org/) as they offer unique opportunities for providing valuable data which can be used as evidence for policy and program implementation. HDSS imply heavy methodological constraints with the longitudinal follow-up based on repeated visits within each household composing it as well as the great number of specific surveys conducted on samples of its

• residents. As a result, HDSS residents, whether participating or not to these research activities end up

with mixed perceptions of being overwhelmed by research teams and projects and by their lack of understanding of the whole research process (Mondain et al, 2016). Because such sites are meant to last for long periods of time, researchers, local fieldworkers and populations are increasingly concerned by the issues related to results dissemination. Madhavan et al (2007) looking more specifically at the Agincourt HDSS in South Africa argued that: “1) long-term presence and community involvement contribute to high response rates and data quality, 2) to maintain community support the project must demonstrate its usefulness, 3) reporting to community members provides valuable checks on the local relevance and comprehension of questions, and 4) community opinion can modify both wording and content of research questions”. In this study, we follow these lines adding two ideas: (i) that reporting to community members – meaning a wide range of the population and not only the local authorities – requires to adopt a socio-anthropological perspective in order to identify what should be reported, to whom and how; (ii) beyond influencing the content of research questions, informing the community at large can also lead to changes in individuals’ health behaviours in various ways. One key issue regarding knowledge circulation in such contexts concerns how to reach and make the information understandable by lay people, particularly in contexts of great socio-cultural diversity. Various communication tools are increasingly mobilized such as documentary films or slides shows, short sketches and even forum theatre. If these have gained an increasing popularity in the health domain for knowledge transfer in conventional research projects (Rossiter et al, 2008), they can also be

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

2 used in HDSS as has been done in Mali (Hertrich et al, 2011). However, because of an often ‘top-down’ design process despite the best intentions of the different actors involved, greater attention should be paid to more participatory approaches in order to ensure that information is actually circulating and does not only take a unilateral path – from researchers to populations. In 2015, the IRD (Institut de recherche pour le développement), managing the Niakhar HDSS in Senegal since the early 1960s, decided to organize three “thematic days” to report back to the local populations the most salient results of 50 years of scientific activities in the area in the three following scientific domains: population dynamics, health and environment. The authors of the paper were solicited by the local IRD research and technical staff to design the content of the three days as well as the communication tools most appropriated to make the results accessible for the majority of the

• population. A participatory approach was used followed by an evaluation of the process a month after

the 3 days took place. Drawing from the fieldnotes taken at the preparation phase, and from 100 interviews conducted for the evaluation (80 with regular participants, 15 with key informants and field workers and 5 with researchers), we discuss the paths through which the information circulates in the context of these 3 days’ restitution, the potential of the approach chosen as well as its limitations (Cornwall & Brock, 2005). Theoretical background As elsewhere in the world, the population and health research protocols in developing countries are saturated by the idea of providing evidence to support policy and practice. We observe that since the mid-2000s, local populations have begun to demonstrate resistance in continued participation in HDSS data collection. In particular, the participants expressed their need and desire to better understand their gains in continuing to take part in the research projects (Mondain et al., 2010). Related to this the need for “knowledge transfer”, has become an almost moral and ethical prescriptive notion for researchers and practitioners. As a result many initiatives have taken place in these fields in order to “report results back” to key actors but often not to those who are most directly concerned: the research participants

• themselves. Another problem arises when too little attention is paid to what should be reported back,

to whom and how. We argue that, especially in the context of HDSS where research teams are constantly present in the area, either in person or through the field workers they have trained to conduct the surveys/interviews, reporting results back may contribute to create a better informed, and thus voluntary participation, to research projects by local residents. Depending on how such initiatives are designed, it could also influence participants’ behaviours in the related domains – here population and health essentially, but also in other areas such as education or environment. The notion of knowledge transfer/translation in the context of restitution has been intensely debated, criticized it for its ‘top-down’ perspective, thus leading to a move towards the idea of knowledge exchange (Gravois Lee & Garvin, 2003). However, researchers and practitioners are still failing to contextualize the process of sharing information and thus end up having a limited view on which actors should be involved. We understand that restitution is “that act or dynamic through which the researcher shares with the field partners, the preliminary and/or final results of the processing of the data collected for analysis” (Bergier, 2000, p.8). In this perspective, reporting results back is articulated as an ethical and pedagogic

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

3 approach where all actors can share their ideas and understanding of the research process (Bergier, 2000). We argue that adapting the methods of data return, so that they are accessible to a broader audience, contributes to a better appropriation and use of research findings by all actors at different levels: individual, household, local authorities and decision makers. Such a perspective allows for the people involved to not merely be ‘subjects’ or ‘participants’ but to act instead as key partners in the inquiry process. Therefore, in this study we use the notion of “knowledge interaction” and “knowledge intermediation” as defined by Davies et al (2008) but expanding these to one key actor who remains absent in their essay: the populations themselves. Knowledge interaction implies that “applied research” or the use of the scientific results is characterized “as a continual and iterative process, one that draws on diverse kinds of knowledge through many different channels and routes” where “interpersonal and social interactions are … seen as key to accessing and interpreting such research knowledge” (Davies et al, 2008: 189). In other words, reporting results back to the populations means that different layers of the population as well as the research teams need to be involved in the choices regarding the content to be reported and the way it should be

• done. In that sense we are following Olivier de Sardan’s (2014) perspective of restitution as a “citizen

argument”, meaning a share of information that contributes to populations’ agency to participate to the research in its different stages including the dissemination and the practical mobilization of the knowledge produced. The study of Spayne-Sturges et al (2004) constitutes a good example of this perspective. Using a Risk based approach for communicating results of air pollution exposure studies, the authors see the effects

• f reporting results back as a role of informing and empowering communities. They therefore show (i)

that reporting research back may influence individual and collective behaviours and (ii) that participation across the whole research process, including communication between researchers and research participants on the results (even preliminary) with a wide range of the population’s representatives is an efficient approach to induce behavioural change as the process allows to close the loop between science and the community (Spayne-Sturges et al., 2004:28). Going from an advocacy approach, MacKenzie et al. (2015) are addressing the tensions between different perspectives on researchers’ roles, status and how this affects the way they respectively see how to organize and design the communication of scientific results: from classic knowledge transfer (top-down) to a more participatory approach that includes different levels of the local society and lead to a more interactive communication on both results, new avenues for research and communication within the local society. Even though the participatory research design allows to disrupt traditional hierarchies of knowledge productions and drive researchers toward their ethical obligation to share results with participants the authors call us to consider the dilemmas of communicating research results such as (i) lack of time, (ii) funding, (iii) pressure to publish, (iv) neglecting that if sharing knowledge is also an empowering process, both the results returned and the way these are returned to participants may end up causing harm to communities rather than empowering them (MacKenzie et al., 2015:106- 107)

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

4 All these examples should be understood with a reflexive perspective on researchers different ways of doing fieldwork depending on their respective socio-cultural backgrounds and training. As such they get to know and perceive the local society in different ways and thus have different approaches to how communicating with individuals and groups there and how the partnership and /or collaborative expectations and/or obligations of ‘knowledge sharing’ might work the best in context of restitution: through the methods, the communication tools used as well as the ethical and pedagogical perspectives adopted. Reporting research results back to participants might achieve its ethical ‘obligation’ of ‘social justice’ towards them if a certain number of pedagogical aspects are fulfilled; firstly, through an in-depth reflection on the communication channels and tools used to facilitate a collaborative circulation of the

• information. Another pedagogical criterion lies in the objective of a restitution that favors the

appropriation of the results by the participants, which presupposes a form of reciprocity: reciprocity in the sharing process (‘sharing’ in terms of constructing the tools like question-answer period with the population) and reciprocity in listening actively to the process and outcomes (researchers and other fieldworkers are also supposed to be open to participants’ perspectives and knowledge). When “planned” restitution is being relayed on the field by grassroot local initiatives reflecting populations’ and their representatives’ own perception about the importance and relevance of the information/knowledge conveyed to them, a process of social change might emerge. Our hypothesis is rooted on a broad loop of ethnographic, evidence-based, as well as collaborative learning angles of ‘knowledge sharing’ in context of restitution to lay population (Ferreira, 2015; Davies et al. 2008). Context and methods The Niakhar HDSS is located in the Siin-Saloum area and is almost entirely composed by people belonging to the Sereer ethnic group. The HDSS, managed by the Institut de recherche pour le développement (IRD, former ORSTOM), and now composed by 30 villages started in 1962 with 8 villages and has reached its current size in the early 1980s when the demographic follow-up was designed. Since then, an important number of research projects in the fields of population and health and increasingly in environment due to the contemporary ecological challenges, have been conducted. Related to these projects, although not to IRD researchers’ own intervention, the area, now over 40,000 inhabitants (Delaunay et al, 2013), has seen its health indicators significantly improve, especially regarding children’s health and mortality. Therefore, despite a growing concern by an increasingly more sensitive and educated population about their access to the results and their outcomes, a collective perception that “IRD has done good things for them” exist through the whole area (Mondain et al, 2016). Because of budget constraints, rather than taking place in the whole area in each village, it was decided that reporting 50 years of research on population, health and environment would take place during 3 days in the three main villages of the HDSS rather than in the whole area. The idea was to use the centrality of these villages to gather a great amount of the surrounding villages’ representatives. Thus, the participants were carefully identified as it was considered impossible to make it public (for fear of being overwhelmed by too many people) but also to ensure that a more diversified audience would be reached rather than being limited to local leaders and chiefs: health workers, representatives of the

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

5 local women’s associations, youth associations and agricultural associations, local fieldworkers working with the HDSS researchers on a regular basis or not and, with the help of key informants from the different villages, important local personalities were contacted. Together, the organization committee, local representatives and fieldworkers made critical choices regarding what to report back and how. Through literature searches we identify three possible alternative communication tools for increasing accessibility of the research findings to local populations: Theater productions (Morrison, 1991), Slide shows (Hertich and al., 2011) and Question & Answer discussions (Gravois and al., 2003). This relay of research findings took place in February 2015 during a three-day “restitution event” in the three

• villages. In this light, a combination of three different communication tools was designed: first, a theatre

performance showing scenes of demographic, health and environmental data collection processes with situations where residents were visited by an IRD interviewer; second, a slide show entirely based on photos taken in the area was commented in Sereer by two permanent IRD fieldworkers; and third a question-answer period between the researchers and the audience. The design of the event and the event itself led to an important amount of field notes taken by the authors of the paper and further transcribed and analyzed by theme. It is important to mention that the researchers in the local organization committee had in mind to use a participatory approach while designing the whole event: this meant a period of several months consulting and working with local key informants in order to identify the main topics to be addressed within each domain (population, health and environment) as well as the communication tools best appropriated to make the information understandable. In particular, the theater performance was co- designed with the theater troupe and led to several meetings where theater actors, researchers and local key informants from the villages made comments in order to adjust the performance. Finally the Power Point slide show led to the gathering of photographs from all the people who had been involved in the Niakhar HDSS for decades in addition to following a professional photographer who spent days in the different areas to take pictures meaningful to local populations. However, because of budget issues and lack of time and also, perhaps more than any other reason, because of the specific intellectual backgrounds of the researchers leading the organization of the Three Days (demographers, doctors, etc.), the participatory dimension somehow became blurred by the urge to finalize the whole event for a specific date. As a result of these tensions (time, budget, disciplinary backgrounds among other factors), we specifically focused more on the status of the people to invite rather on their sex, age or other

• characteristics. Hence, we ended up inviting a fairly significant number of key local actors, whichI

inevitably led to over-represent men as the public sphere essentially remains a man’s responsibility, people of 45 years old and over and who have some education, often secondary level. The whole process (the design as well as the event itself) was then evaluated a month later through a series of interviews conducted by the authors of this paper among 5 researchers and 15 fieldworkers andkey informants. In addition, 80 participants out of the over 300 who attended the days were selected on their sex, age, occupation status, involvement in an association, and interviewed by three

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

6 local fieldworkers. All the interviews were transcribed and typed and further managed and analyzed using the NVivo software. Our evaluation sample reflects the bias mentioned above. Preliminary results The following preliminary results of our study are organized in 3 main sections: the first two ones present the participants’ appreciation of the content of the restitution and the mobilized communication tools allowing us to understand successively or jointly both the ethical and pedagogical dimensions of restitution process. And in the third section we are analysing the initiatives of the participants in relationship with the information conveyed and shared through the tools (theater, slide shows, questions-answers sessions) we used. By doing so we demonstrate the empowerment process mobilized with or by the participants themselves in term of social change. The ethical and pedagogical relevance of knowledge sharing in context of restitution (1): Participants’ appreciation of the content Among the three main domains of research, population, health and environment, reporting back results

• n population issues was certainly the most difficult, paradoxically since the IRD presence in the Niakhar

area is based on its longitudinal follow-up of the population. In fact, as researchers, we were torn between the feeling that most demographics were health related and as such overlapped with each

• ther. Therefore, the most important dimension to communicate was to explain to people why a

longitudinal follow up is important and pertinent for other more specific studies (as it provides a baseline for sampling in particular). Obviously, the most sensitive to this aspect are the fieldworkers specifically hired to do the follow-up, not only because they fear constantly to lose their jobs (apart from two of them, they are all on temporary contracts and the researchers in charge of the demographic follow-up constantly negotiate with the headquarters of their institution to maintain a certain number

• f rounds during the year due to the high costs of such platforms).

« Q4 : Est-ce qu’il y a des choses qui n’ont pas été abordées que vous auriez voulu qui le soient? AF : On n’a pas posé de questions par rapport à la démographie, alors que les gens se posent toujours des questions par rapport au système de suivi démographique. Mais la question n’est pas posée. BF : Le problème de la démographie c’est qu’elle est un peu absorbée par les vaccinations [et la santé en général]. Or on sait beaucoup de choses à partir des questions sur les naissances et les décès. Mais sinon c’était bien et pour les diapositives et le théâtre ça s’est amélioré chaque

• jour. » (2 fieldworkers having decades of experience in the demographic follow-up)

This conversation summarize well the challenge of sharing information about demographic results as these are generally related to health: reproductive health, children’s health through indicators such as fertility rates, death rates, etc. The issue for fieldworkers and researchers to address the difficulty for residents to understand the purposes of demographic data collection was to explain the process through which this data is required to produce health indicators, what we’ve called the ‘path from data collection to scientific results and knowledge’.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

7 Not surprisingly, almost all participants, no matter the sex, age group or education level, mentioned that health was the most “appreciated” themes among the three during the days. A leitmotiv appears across all categories of participants which can be reflected by the following quotes we found systematically: “La santé car on ne peut rien faire sans la santé » « La santé car on ne peut penser à rien sans la santé » « La santé car on ne peut travailler sans être en bonne santé » Interestingly it seems that when we reach participants of 45 years old and over, beyond the same perceptions of the importance of health a dimension related to well-being appears: “La santé est l’élément fundamental de la vie” (village chief – Diohine) « Pour être heureux il faut la santé » (Imam – Diohine) « Avant de s’occuper de quoi que ce soit il faut être en bonne santé qui est la clé de la vie (…).Toujours la santé car c’est elle qui me permet le bien-être et le courage de travailler et encore pouvoir s’occuper de la famille. » (Pdt groupement d’agriculteurs – Diohine) These quotes reflect two things : first the fact that IRD has conducted large projects on specific health issues, mainly related to children’s health and that, demographically speaking, the improvements across fifty years have been spectacular (not necessarily due to the IRD’s interventions but certainly because of the dynamic created by their multiple health projects in the area). In particular from the early 1960s up to now, the under-five mortality rate has fallen from 5/10 to almost no deaths anymore. And because populations perceive this, they tend to express their gratitude to IRD’s work across the past decades as soon as they have an opportunity to do so. The second aspect reflects on local constraints: the harsh agricultural work, the need for most young adults to leave the area and find other sources of wages during the dry season, the reliance on the household head, generally a man, all these constraints mean that being sick or having a poor health can be detrimental to the whole family economy and wellbeing. Another key dimension with the history of IRD’s presence and its work on health issues relates to the way they conducted some of their research. Several projects involved clinical trials and blood sampling, the latter leading to misconceptions and fears like in other contexts. An interesting study conducted in Niger revealed that even despite following the ethics protocol of informing in detail the people sampled for a research that involved blood sampling on children, a high rate of refusal was registered: essentially the fear that the blood would be used for different purposes than scientific and medical (in Niakhar the typical fear has been that the blood would be sold) and the lack of clarity in the explanations provided to gather the informed consent; this confirms our hypothesis that often explanations perceived by researchers and scientific people as clear are not by local people; one reason being the different ways of communicating in various contexts (Campagne et al, 2003). Hence, the researchers strongly supported by the fieldworkers who are in close contact with the populations on a regular basis, wanted to focus on these particular practices to clarify the process and purposes of blood sampling. If this was highly appreciated by the majority of the audiences, it was not fully satisfying for some participants:

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

8 “Le retour des résultats individuels par rapport aux prélèvements n’est pas expliqué par contre : quand on prélève qu’est-ce qu’on attend du prélèvement? Il faut mieux expliquer. » (Ngayo – Bernadette Sarr; head of the local dispensary) This quote is particularly interesting as it comes from the head of one dispensary in the area. However,

• ther health agents more at the grass roots level consider that the explanations regarding this particular

issue has been very helpful and informative and provide them with more tools to assist researchers who solicit them to explain the purposes of their research among families and individuals. This clearly reflects different levels in the need for information and thus different expectations. However, despite a general positive appreciation of the information provided about health results, several participants were disappointed not to hear anything about adult health issues: as the population is aging due partly to the improvement of infant and child health, people increasingly face health issues which prevalence is constantly increasing in particular, hypertension, diabetes, also issues regarding eyesight, etc. During both the question-answer period and our evaluation interviews, elder participants and health workers insisted that researchers put in their agenda studies looking at how to prevent such health problems and improve the access for treatment for the local population. This was somehow seen as a logical step after “solving” infant and child mortality (which again has not necessarily anything to do with IRD as the research institute doesn’t have the mandate to make interventions). “Q. Sur quoi auriez vous insisté le plus?

• R. Comme je viens de te le dire, il faut insister sur la santé (adulte) parce qu’il y a beaucoup de

maladies qui sont fréquentes chez nous. Exemple : la tuberculose, le diabète et l’hypertension et qui sont mortelles » (mother of the village chief, no education, 45+) One main thing that people learned was that IRD has been and is conducting research in the field of environment, which in this area, essentially relates directly or indirectly to agriculture and the use of local products provided by the nature (leaves, wood, etc.) for daily activities (especially cooking). Therefore, like health, it is easier for local residents to foresee concrete applications of such research even if the complexities of the research protocols are beyond their understanding. Across all categories

• f participants regardless of age, sex and education levels, all mention that they somehow discovered

this aspect of the IRD’s research activity: “Que pensiez-vous de la journée à laquelle vous avez participé ? C’était une journée très importante parce qu’elle m’a relaté beaucoup des faits de l’IRD, des faits connus et d’autres méconnaissables comme le cas de l’élevage aidant l’agriculture. » (Pdt gpt éleveurs, Diohine) It is symptomatic from this quote that one key actor invited at the event, the head of the local cattle raiser association, had no idea of this aspect of IRD’s research. This means that despite an almost constant presence of various research teams belonging to a great variety of projects on the environmental changes in the area, the majority of the local population doesn’t know about their existence.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

9 The ethical and pedagogical relevance of knowledge sharing in context of restitution (2): Participants’ appreciation of the communication tools Interestingly, participants reflected on the themes that are of key importance to them in addition to what they learned from the “Days” while discussing their appreciation on the communication tools designed to disseminate the results (theater performance, slide show and question-answer period). A general consensus is that the three tools are complementary and many explained the fact that they didn’t use the opportunity to ask a question at the end as both the theater and the slide show were informative enough. Of course more underlying reasons for this lack of interaction are more likely to be related to the social relationships within the community. In particular, the very rare occasions to talk directly to researchers may have reinforced a feeling of inferiority and thus didn’t encourage people to express themselves in front of highly skilled people including well trained fieldworkers. However, there was an important gap between the perceptions researchers and fieldworkers have on the “success” of the question-answer period vs. those the participants have. The latter in general are satisfied with it, men like women. However, most of them didn’t end up asking any questions for the following reasons: too many people, too late in the day (mostly for women), time too short to address everything, and also the feeling that most information has been transmitted via the theater performance and the slide show. “Pendant la journée différents outils ont été présentés : Théâtre, Film commenté en sérère période des questions réponses, qu’avez-vous préférez parmi ces trois outils ? Moi à mon avis j’ai préféré la période des questions réponses. Parce que c’est à ça qui as permis à la population de mieux comprendre le travail de l’IRD et c’est à cette période que la population a eu l’occasion de poser des questions pour mieux connaitre beaucoup de chose sur ce que l’IRD faisait dans le village. Que penses tu sur les autres outils qui restent? Théâtre et film commenté en séreer? Les autres outils aussi sont intéressant mais la période de questions réponses nous a permis d’avoir la possibilité de poser des questions et avoir des réponses sur les choses qu’on ne connaissait pas. » (Notable Kalom, 45+) Despite this positive view on the question-answer period by most participant, a problematic comment came up several times, the inadequacy of the moderator, a Wolof speaking researcher who couldn’t speak in Sereer, the local language. If there is no doubt that this person made a good job in facilitating interactions between the different actors in the audience, his role was more a result of compromises within the researchers’ community of who “should do something” and especially “who could not be marginalized from the whole process”. Hence, the key principle that the whole event should take place in Sereer and French (as most researchers were French and unable to speak Sereer), was lost for internal political reasons. As a result many didn’t feel comfortable to ask any questions at the exception of those most educated or whose role and status in the local society push at the forefront of the public sphere, in

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

10 particular village chiefs who ended up with long speeches about their gratitude to IRD’s work in the area. “Avez-vous posez une question ? Non j’avais pas poser de questions à cause de la version Wolof que les chercheurs de l’IRD utilisés. Je suis sérère je comprend le wolof mais je ne suis pas habitué à le parler. Mais je voulais poser la question sur les prélèvements sanguins. Comme moi je travaille sur la santé , je sais que les gouttes d’épaisse qu’on fait ici au dispensaire je sais comment on les utilise et à quoi ça sert, mais par contre avec les prélèvements que l’IRD fait je ne savais là où ils les emmener et beaucoup de gens étaient rétissent à cause de ça. Mais avec le théâtre et le support visuels vraiment les gens ont compris maintenant ce que l’IRD fait avec les prélèvements et même

• moi. » (Marie Diouf, Bajenu Gox, Ngayo)

Both researchers and fieldworkers, on the contrary, were highly disappointed as fewer people in the audience than expected asked a question. As mentioned above among those who talked, some made long speeches on how they appreciated the work accomplished by IRD since the implementation of the demographic follow-up while other expressed their expectations in more assistance to access both health services, agricultural products, etc. This gap between the researchers-fieldworkers and participants can be explained as follows: for the former, it is a classic objective: make people participate, especially women; a kind of systematic expectation for scholars and professionals working in the health domain in various contexts, especially in developing countries. However, with limited reflection on local social relationships, usual communication channels, etc., such an objective is seldom reached. As for the populations, the simple gesture of opening the floor for discussion to them in the presence of the research teams, technicians, etc. was very positively perceived and was sufficient enough. The other reason might be that they were overwhelmed by information and had no time to absorb it. It is likely that if “causeries” (discussion on specific subjects within a smaller group) had been organized after the “Three Days”, people would have asked questions. There is a clear consensus that the theater performance was the best for both men and women and of different backgrounds and ages. Interestingly they found it very informative although it was not its initial

• bjective; the purpose of the performance was to “break the ice” and highlight situations familiar to the

populations in a funny way. However, because the situations performed recalled people’s experiences with the research teams in the areas they were particularly interested by two subjects that were touched upon by the performance:

• Information about the blood samples and acknowledgment by several participants of

different social statuses how it helped them to better understand the purpose of it and diminish their reluctance to participate (mostly men and elder)

• Performing situations where fieldworkers and the populations interact, often in a funny way

and also simply show the different types of research conducted by IRD including on the environment; so in general a better understanding of what IRD is doing.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

11 In other words the theater performance and to a lesser extent, the slide show, highlighted concretely what the research institute is doing, it clarified it, as local inhabitants keep seeing research teams on the field with no real understanding of the purposes of their activities. This shed light on the gaps and limitations of the “informed consent” process which obviously doesn’t meet its objectives of providing the populations with sufficient information so that they have an understanding of what their participation involves and why they are/should participate. To conclude on these two first sections and more particularly on the ethical and pedagogical aspects, we will use the following quotes that summarize the gaps between local practices and the views of the reseachers, technicians and field workers who depend on them. Typically, participants expressed a feeling of lack of time to absorb the information and thus were not comfortable enough to ask questions. Also, despite our attempts to involve residents in the identification of key themes to be addressed during the days, a majority of our respondents mentioned that there is still a need to clarify the role of IRD in the area: “Q6 : Quelles seraient tes suggestions pour une prochaine fois? BS : Il faut tenir compte de la langue. Et aussi faire de bonnes projections et montrer les choses très clairement, montrer le circuit de l’IRD, son historique : où ils ont commencé? Qu’est ce qu’ils ont fait depuis toutes ces années? Qu’est ce qu’ils font aujourd’hui? [en bref : mieux situer les activités de l’IRD dans le temps et expliquer l’évolution de l’IRD]. Le problème c’est les prélèvements : il faudrait améliorer le processus de collecte; il faut sensibiliser les gens à l’avance grâce à la formation des bajenu gox qui peuvent préparer le terrain avant de commencer les prélèvements. Et aussi clarifier le processus de consentement [l’idée est que oui les JT aident les gens à mieux comprendre mais il faut aussi une sensibilisation]. » (Head of the village dispensary, Ngayokhem) This quote mixes both ethical and pedagogical dimensions: how to make the information sufficiently clear by specifying the role of IRD, the HDSS managing institution and also to better describe the path from data collection to the results regarding blood samples. In doing this, logically, people would be better informed and then, the objective of gathering participants’ informed consent in these types of research would finally be reached. So far, it is obvious that among the people who accept do participate, many do so without fully understanding what will be done and the purposes of such research. Another important aspect relates to how the HDSS area is treated as a homogeneous entity. Most researchers and other professionals working in this scientific plate-form have realized that the whole area can be divided in “sub-areas” with nuances in the local social and cultural practices as well as various economic strategies (depending on the quality of soil, opportunities to grow other products than cereals, essentially peanuts) to earn cash and improve daily subsistence resources. However, logistically and methodologically it is easier to treat the HDSS as a whole, thus neglecting some dimensions that could lead to sensitive reactions such as the one quoted below:

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

12 “Q : Est-ce qu’il faudrait préciser certaines choses? AD : Selon moi ce n’est pas toujours très clair ce que fait l’IRD. Sont ils venus aider les populations? Par clair que ce sont des recherches et pas de l’aide. Il faut commencer par là. Et aussi il y a différentes zones à l’intérieur de la zone elle-même. À Diohine par exemple personne ne parle le wolof. Il y a des caractéristiques de chaque zone qu’il faut mieux prendre en compte. » (Woman fieldworker on occasional contracts) As these two quotes above highlight, ethics and what we call “pedagogy” are tightly related. Most important, the relation between the informed consent and the circulation of information (beyond the ethical dimension of “restitution”) while respecting local values, practices and knowledge is a central

• issue. Therefore, considering ethics at specific stages in a research process appear meaningless as it

reflects a process where mediations between all the actors involved (researchers, participants, local informants, field workers, etc.) are constantly at stake. One good example is the work done by researchers dedicated to the Native People in Canada. They’ve gone far in the process of reflection regarding these specific issues and their guidelines could easily be transposed to what we see happening in the African context, especially those of HDSS where ethical dimensions are exacerbated (Groupe de travail des Premiers Peuples de l’institut nordique du Québec, 2017) Participants’ initiatives after the “Three days”: information flow and empowerment We tried to assess to what extent the information that was disseminated by researchers was appropriated by the residents’ representatives (religious leaders, heads of women, peasant, youth associations, health agents, teachers, local administrative agents, prominent local authorities, and fieldworkers) and how they circulated it to regular residents and other representatives who did not assist. It is important to note that the evaluation process was conducted a month after the event. Another round of interviews was planned for a year later but the institutional constraints (changes in the leading team) in addition to budgetary issues made the follow-up of the event difficult. It is a limitation since we do not know whether people continue to discuss the event and especially whether what they learnt is still circulated in their daily activities. A comment that came up several times relates to the communication channels: as most of the residents in the villages were aware of the event but could not necessarily assist if not formally invited, our respondents insisted that there should not be any selective invitations and that the event should take place on the public areas familiar to the inhabitants: “A propos de la journée du coté de l’organisation dans l’ensemble est que ça c’est bien déroulée ? La journée c’est bien déroulée mais du coté de l’organisation je conseille aux chercheurs qu’à la prochaine qu’ils le font au niveau de la place publique c’est le lieu le plus abordable où nous faisons toutes nos rencontres tels que réunion, rassemblement et aussi ils ne doivent pas limiter les invitations. Ils peuvent demander la présence de toute personne qui est libre et disponible.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

13 Ils n’ont pas besoin d’organiser un cocktail. Ils peuvent chercher des sachets d’eau et de l’offrir à la population après la fin de la journée. » (head of women’s group, Ngayokhem) In this fairly inclusive society, it is not well perceived to restrict the participation of the majority. In addition as everyone understood that the purpose of the event was to inform the populations there was an obvious paradox between the objective and the organization. And indeed, as shown in the following quotes, most initiatives took place in the localized public areas used for different purposes (public square, specific places where women gather, etc.). Information of general interest were disseminated during the event such as the need to respect certain periods to gather the wood so that trees have time to grow. In the quote below a woman with a key role in the community (head of several women’s groups and active at the village town hall) tells what she heard from various sources after the event. “Est-ce que après la journée quel a été l’ambiance, les informations que les gens ont véhiculé ? Vraiment après la journée j’ai entendu que la journée a apportée une très claire compréhension sur ce que fait l’IRD dans la zone. J’ai entendu aussi à travers la journée ils ont compris où est ce que l’on amène le sang, la production, le rendement du sanio( mathie) et pourquoi il faut arreter de couper le bois. Il y avait une réunion à la place publique pour les femmes et les hommes du village ont profiter de lancer un message sur la date qu’il faut aller maintenant dans la brousse pour couper le bois, mais maintenant après la journée de restitution nous savons la période où il faut chercher le bois. Dans la population de Ngayokhéme on a arrété la date qu’il faut aller dans la brousse pour le bois et personne n’ose plus aller dans la brousse pour le bois et personne n’ose plus aller dans la brousse pour couper du bois sans la période convenable. ça n’a jamais existé dans le village et c’est à travers cette journée que nous avons cette connaissance. » (Ami Kama, présidente des groupements de femmes; mairie) As this woman states, meetings are usually held at the village public square and this area was used to disseminate information gathered from the “day”. Such areas are also used by local actors working at a more grass roots level. The most salient example are the “Bajenu Gox”, who are health agents essentially working with women regarding reproductive health issues, sensitizing pregnant women about delivery in health clinics rather at home and the need to do their pre- and post-natal visits. “Avez-vous parlé de la journée avec d’autres personnes depuis ? Oui entre Badianou Gox (BG) on a discuté de la journée, nous avons apprécié la journée ça vas nous permettre à mieux connaitre et à comprendre le but de l’IRD dans le village.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

14 Il y avait une réunion au niveau du dispensaire et c’est là bas qu’on a parlé de la journée » (Bajenu Gox, Ngayokhem) « Est-ce que vous avez parlé avec d’autres personnes participants ou non participants à la journée ?

• Oui. A la place du robinet, où nous avons l’habitude de décortiquer des arachides, je l’ai toutes

raconté l’essentiel de la journée : vaccins, prélèvement de sang qu’on croyait que c’était pour vendre le sang est bien clair maintenant. » (Grass root health agent, Diohine) These quotes suggest that the use of such communication channels could increase the efficiency of knowledge circulation as these areas represent what people are used to and are most comfortable with. The last important dimension that came up was more related to local power relationships. According to this woman who is head of a woman’s group in a neighbouring village, people may not trust her entirely when she tries to sensitize them to the research activities conducted by IRD: “Avez-vous discutez avec d’autres personnes après la journée de restitution ? (…) C’est vraie que vu ma fonction de présidente de groupement feminin je peux servir de relais mais la population peut croire que j’y gagne quelque chose mais s’ils sont face aux chercheurs ils peuvent poser toutes les questions dont ils ont l’inquiétudes. Et je demande dés fois les chercheurs peuvent descendre sur le terrain en fce de la population pour mieux les expliquer le but de leurs programmes. » Beyond these local power relationships, there was also a strong feeling that the “relevant” actors were not all invited (or that some of the invited participants were not appropriated) and that some other key local actors should be more involved both at the design process and after the event. This is particularly the case of the “Bajenu Gox”, women who work at the grass roots level at the neighbourhood level to sensitize women regarding reproductive health and related issues. Along these lines, several respondents suggested that among the invited participants, some were not pertinent, essentially the village chiefs and that everyone in the village should be invited rather than solely targeting what was perceived by researchers and IRD technicians and field workers (dependent on IRD for their jobs) as the key local representatives: “Je déplore aussi le nombre d’invitation et la cible par exemple : les chefs de village : beaucoup d’entre eux ne sont pas instruits, d’autres sont vieux et ils peuvent pas servir de relai pour les chercheurs car ils gèrent plus des choses administratives. Les invitations aussi ne devaient avoir de limite : on invite tout le monde : qui a une disponibilité pouvait se présenter c’était le

• mieux. » (matrone relai, Ngayokhem).

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

15 Morevover, regarding the organization, one specific group, the Bajenu Gox, insisted that they should be more involved to sensitize people, especially women who were underrepresented, to participate to such events and at the end of the process pass the information among them whether they participated or not: “Si on devait refaire ce genre de journée que conseillerez-vous aux organisateurs ? Pour que vraiment les journées de restitution réussissent il faut au moins faire participer le BG pour l’organisation et la sensibilisation comme ils sont en contact directe avec la population et la prochaine fois je conseille aux chercheurs de l’IRD d’élargir les invitations. » (Bajenu Gox – matrone, Ngayokhem). In brief, in order to gather people together and ensure a more fluid circulation of information we need 1) to use the local most salient and meaningful areas where people gather rather than imposing one for logistic reasons; 2) to take more time to investigate about the local power relationships and dynamics in

• rder to better identify who should be targeted to pass the information at a broader level, and 3) insist

that the researchers invest more time on the field to discuss their work, explain the results and their potential outcomes in a more participatory way than has been done so far. Discussion Our discussion is structured around the 3 main ideas: 1- What are the ethical issues? (consent, information…) 2- What are the pedagogical challenges and why should they be addressed? (dialogue created by the communication tools, co-construction of knowledge - the way explanations are provided and what explanations are expected) 3- To what extent such activities have the potential to lead to social change? (everything related to the circulation of information at the residents’ level) Our preliminary results clearly reflect on our two initial arguments: 1- Knowledge interaction is a promising avenue for looking at more ethical and efficient ways of practicing a more collaborative research among vulnerable groups as it enhances their self-

• determination. Knowledge interaction should take place during the whole research process, not
• nly at the end while designing the process of reporting back research activities to participants.

One key idea that emerges from the interviews is that the organizing committee should have included more local key informants and developed a strategy to better sensitize the whole population about the event and its potential to answer their constant questions regarding the research process and the research outcomes.

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

16 Finally, participants clearly stated that being better informed, especially regarding certain research practices such as blood sampling and clinical trials in some medical and health projects, would not only ensure populations adhesion to participate, but also modify their behaviours towards research studies and findings. Some other participants were clearly mentioning how they now perceived the importance of regular visits to the dispensary and that pre and post- natal care should also be shared by men. However, several participants insisted that they felt their voice had not been sufficiently taken into account regarding preoccupations that could be added to researchers’ agenda: looking more carefully to adults’ health and being more scientifically proactive in the domains of agriculture and cattle breeding. 2- Methodologically, adopting a socio-anthropological perspective to identify key people to be involved in the whole process, as well as the content to be reported and how to do it, has shown its potential in terms of mobilizing the population and “fitting” in what is their reality and their

• preoccupations. As such the experience also encouraged a new type of interaction between

researchers of various disciplines, local fieldworkers and the populations. However, several limitations have to be highlighted: first, the lack of experience of several researchers and fieldworkers, mainly trained to conduct quantitative surveys, in such approaches (participatory, theatre performance, no graphs and tables, etc.) meant that constant negotiation about how to design the event was necessary, although they were aware of the powerfulness of these methods. Second, the power relationships exacerbated in a research platform such as a HDSS site, makes it difficult to create bridges between different disciplines and research practices among

• researchers. The “history” of the HDSS has indeed led to “friendships” as well as to more

complex relationships involving fieldworkers, IRD technicians and sometimes researchers; such dynamics are unavoidable but they emphasize the challenge of introducing new approaches which lead researchers to interact directly with the populations. Again, as stated earlier, HDSS are essentially population and health research platforms with related research methods (quantitative, “evidence-based”) and as such do not necessarily facilitate direct and continuous contacts between the different actors, the fieldworkers being the key intermediaries in this process. 3- Ethically: the issue regarding the informed consent, the lack of interaction with researchers, the lack of clear explanations of the research process and expectations have been addressed. These seem to be obvious if we recall here that a classical research design with multi layered actors’ model engaging as fieldworkers are taking place in HDSS ways of conducting researches. The power imbalance that is latent to classical research design was highlighted through the feedbacks of the participants presented above concerning the content as well as concerning the communication tools. The ethical dimension is on the one hand about the perceived ‘obligation’ by researchers that restitution is about social justice and with the contemporary enthusiasm with participation/participatory approaches, that reporting results back should adopt such a perspective;on another hand, it calls researchers’ responsibility to find appropriate tools and channels to explain appropriately the research agenda in addition to the expected outcomes

28th International Population Conference – IUSSP – 29 Oct.-4th Nov. 2017 – Cape Town (South Africa)

17 and methods of the research protocol so that informed consent becomes really “informed” and thus leads to “free” participation. This will mean empowering HDSS studied population to attain a more collaborative way of mobilizing and sharing knowledge and sensitizing HDSS researchers to take into account research agendas that matters to population for social change. Overall, the evaluation showed a consensus among all participants who were highly satisfied that the event took place although some caveats appeared in their more detailed appreciation. Most participants we interviewed told us that although they were not asked to do so, most of them, from their own initiative, passed the information they got during the day they attended to other members of their close

• community. This confirms our idea that information circulation based on a share of people’s respective

knowledge end up – even if here it’s still partial – providing them the agency to decide what to do to influence their community’s daily life conditions, especially in terms of health, and in the future, regarding agricultural and environmental issues. This is crucial considering the contemporary development goals agenda. Indicative bibliography: Bergier, B. (2000). Repères pour une restitution des résultats de la recherche en sciences sociales. Intérêts et limites. Paris : Harmattan. Campagne et al, 2003 Davies Huw, Sandra Nutley & Isabel Walter, 2008. “Why ‘knowledge transfer’ is misconceived for applied social research”, Journal of Health Services Research & Policy, 13(3): 188-190 Ferreira, Jacqueline, 2015. “Restitution of the research data in ethnographic health research: issues for debate based on field research conducted in Brazil and France”, Ciência & Saúde Coletiva, 20(9):2641- 2648. Gravois Lee R. et Garvin T., 2003. « Moving from information transfer to information exchange in health and health care”, Social Science & Medicine 56(3) : 449-464 Hertich V., M. Lesclingand, M. Quaglia and A. Stephan, 2011. “Constructing a survey over time: Audio- visual feedback and theatre sketches in rural Mali”, Demographic Research, 25(22): 695-722 Madhavan Sangeetha, Mark Collinson, Nicholas W. Townsend, Kathleen Kahn and Stephen M. Tollman,

• 2007. “The implications of long term community involvement for the production and circulation of

population knowledge”, Demographic Research, 17(13): 369-388 MacKenzie, Catrina A., Julia Christensen and Sarah Turner, 2015. “Advocating beyond the academy: dilemmas of communicating relevant research results”, Qualitative Research, 15(1): 105 –121 Mondain Nathalie, Valérie Delaunay et Valérie Ouédraogo, 2016. « Reporting results back in health and demographic surveillance systems (HDSS) : an ethical requirement and a strategy for improving health behaviours », African Population Studies, 30(2) (Supp.)

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18 Mondain N., & Bologo, E. (2010). Exploring respondents’ understanding and perceptions of demographic surveillance systems in West Africa: methodological and ethical issues. African Population Studies, 24(3) 149-165. Olivier de Sardan, J-P. (2014). « Des restitutions, pourquoi faire? », in Dayer, C., Schurmans, M-N and Charmillot, M., La restitution des savoirs. Paris : Harmattan, p.37-50. Payne-Sturges, Devon C., Margo Schwab and Timothy J. Buckley, 2004. “Closing the Research Loop: A Risk-Based Approach for Communicating Results of Air Pollution Exposure Studies”, Environmental Health Perspectives, 112(1): 28-34 Rossiter Kate, Pia Kontos, Angela Colantonia, Julie Gilbert, Julia Gray & Michelle Keightley, 2008. “Staging data: Theatre as a tool for analysis and knowledge transfer in health research”, Social Science & Medicine, 66: 130-146