Scientists are often called upon to discuss their research publicly. These discussions are harder if the research is controversial or might frighten or worry the public. When is the right time to start a public debate and who should start the debate by highlighting potential risks and benefits? Science is often the best and sometimes the only means to address health, environmental, economic and other challenges. Debate with the public about research, its results and possible applications ensures a rational, informed process to find sustainable solutions. However, there is a conundrum at the heart of science communication, outreach activities, public or upstream engagement and Responsible Research and Innovation (RRI): When is it best to engage with the public about a controversial or emerging field of science; before or after people have become aware of the issue and begun talking about it? The timing has consequences: RRI, for example, relies on early public engagement and debate in order to guide research and applications and to ensure research and innovation align with public needs and values. However, early communication about controversial research raises the risk of creating unfounded hopes and fears. Here, we explore the contours of this conundrum by focusing on synthetic biology. Despite our focus, the issues actually affect all types of science communication and RRI activities. In some fields, such as climate change, the issues have been discussed more openly than in others. We aim to learn from these discussions when trying to answer the question: When is it the right time to responsibly raise awareness about synthetic biology?Social scientists have analysed science communication and public engagement for many years, focusing in particular on constructions of “the public”. They have shown that publics are plural and diverse and often able to offer “lay expertise” on specific issues. This means that a simple communication model that stresses promoting public understanding, acceptance and trust in science is problematic. More recently, social scientists have begun to foster a new approach—called RRI—that encourages public engagement from the beginning of the research process, engagement that is regarded as crucial for making science more responsive to public needs. This approach has been taken, for example, in regard to the contentious issues raised or emphasized by genome editing with CRISPR. However, although many experts and commentators have appealed for a public debate, there has not yet been much practical advice about how to conduct such a debate, nor when it can or should be done responsibly.… early communication about controversial research raises the risk of creating unfounded hopes and fearsThis raises a series of questions which all relate to issues of responsibility. Is it the responsibility of social scientists or natural scientists to raise awareness of contested scientific issues? Or is this the task of professional communicators and intermediaries? And most importantly: When should this be done? Should scientists and/or intermediaries stimulate a debate about contentious issues before such a debate occurs naturally, something that is to some extent reflected in traditional and online media? Should one leave the groundwork of organizing public deliberation to natural scientists, as in the gene/genome/CRISPR debate? Who decides which issues—risks, benefits, uncertainties—should be brought to public attention and how; that is, who decides which information to foreground and which to background and how to frame these issues? Can this be achieved in a neutral way, or is bias unavoidable? What are the risks to social and natural scientists themselves when getting involved in shaping a public debate? Will they be branded “advocates” or “activists” and lose their neutrality, independence and credibility?The issue of science advocacy is a complex topic and has led to heated discussions among scientists, science communicators and other commentators of different persuasions. In the context of climate change, this debate has a long tradition. As early as 1996, Stephen Schneider, professor of environmental biology and global change at Stanford University, USA, defended what he called “responsible advocacy” in an article entitled “Is the science/advocate an oxymoron?” The issue of advocacy never went out of fashion in the context of climate change, where science and politics collide on an almost daily basis…The issue of advocacy never went out of fashion in the context of climate change, where science and politics collide on an almost daily basis, much more so than in synthetic biology. The topic flared up again in 2013 after an article by climate scientist and communicator Tamsin Edwards who argued that climate scientists should not advocate particular policies http://www.imperial.ac.uk/science-communication-unit/research/silences-of-science/silence-in-the-history-and-communication-of-science/).On the same day that Anderson was interviewed , a workshop took place at Imperial College London entitled “Silence in the History and Communication of Science”. In the invitation to the workshop, the organizer, Felicity Mellor from Imperial College, London, UK, wrote: “Whilst the public communication of science and public engagement with science are important ideals, there are times when it is expedient and appropriate for scientists to withdraw from the public sphere. The qualities of such withdrawals will vary, from professional silences prompted by competition and fears of plagiarism, to reticence in the face of uncertain knowledge” . This complex relationship between science, communication and responsibility is little understood—and quite easily misunderstood—and needs more research. Every act of communication and every act of silence opens up a space for interpretation and misinterpretation and for power struggles over who should speak for whom, who has the right and responsibility to speak about what, and, of course, when is the right time to speak and when is the right time to remain silent. How scientists and social scientists responsibly use speech and silence to negotiate and advocate common needs still remains a democratic conundrum.These recent debates in the context of climate change reveal some of the dilemmas at the heart of science communication, science advocacy and RRI. Speaking up on a topic can lead to being cast as an (irresponsible) “advocate” or cheerleader, but speaking up is increasingly seen as the responsibility of scientists, in particular by people in high office, such as the UK's Chief Scientific Advisor, Sir Mark Walport  with the dilemmas of raising awareness about synthetic biology (responsible communication)? One key difference is the role played by the popular media. Climate change has been the focus of enormous media attention during the past decade. This arguably is connected to debates between scientists themselves  about humanity's role in climate change, which spilled out into the public and the political sphere. As controversy over climate science has continued, climate scientists have been expected to take some sort of advocacy position, in fact to assume responsibility, rightly or wrongly, for at least advising on policies and their implementation. It is almost impossible for climate scientists to be “neutral” in this highly politicized context and their responses, whether explicit or implicit, are then fed back through media reporting.In contrast, synthetic biology has, as yet, had very little attention from the popular media. To date, there have been no major disputes between scientists about research or present developments. Some concerns have been raised by citizen or stakeholder organizations It is time that social science and humanities scholars look more closely at the ethical challenges of science communication and science–media interactions, that is to say, at issues related to “responsible language use” or “responsible communication”, as these have policy and politics implications, just as much as “responsible innovation”. Communicating about synthetic biology interferes with a media, policy, information and public awareness ecosystem that is as complex and as delicate as any biological one. Whatever issue science communicators or RRI experts select for “political and societal opinion making” will interfere with this ecosystem in ways that are not easy to anticipate. As Tim Radford, an experienced science writer, once said when reflecting on his own reporting on advances in stem cell research: “The act of writing about something—to choose one topic from the hundred or so potential topics delivered every day in the scientific press—is to hype it. I have chosen this finding rather than that, or the other, so it must be more important, more compelling, more exciting. I select, therefore I hype” RRI is based on a broad foundation of “engagement” and on (at least) four pillars of “anticipation”, “reflection”, “inclusion” and “responsiveness”. Engagement means “opening up” a broad spectrum of visions, impacts and questions to broader deliberation and debate. We should be aware that selecting which visions and questions we open up for debate, or which words or stories we choose to elicit broader visions, will inevitably sideline, silence or close down others. We need to be prepared to examine the ethical and social implications of such choices for public communication, public awareness, public debate and public understanding of synthetic biology. We argue that an important component in raising awareness responsibly is to engage in dialogues and collaboration between scientists, social scientists and outreach or science communication experts, to help to ensure that there is monitoring of, and reflection on, this process and its impacts.The authors declare that they have no conflict of interest.Res. Policy 42: 1568–1580Stilgoe J, Owen R, Macnaghten P (2013) Developing a framework for responsible innovation. Responsible Innovation: Managing the Responsible Emergence of Science and Innovation in Society, Owen R, Heintz M, Bessant J (eds). London: John Wileyvon Schomberg R (2013) A vision of responsible innovation. In: Awareness & Impressions of Synthetic Biology. Wilson Center. Available at: https://www.wilsoncenter.org/publication/awareness-impressions-synthetic-biologyHart Research Group (2013) Regulation of Synthetic Biology. Parliamentary Office of Science and Technology. Available at: http://researchbriefings.files.parliament.uk/documents/POST-PN-0497/POST-PN-0497.pdfPOST (2015) A Report on Responsible Research and Innovation. Available at: https://ec.europa.eu/research/science-society/document_library/pdf_06/rri-report-hilary-sutcliffe_en.pdfSutcliffe H (2011) Synthetic Biology Market by Tool – Global Forecast to 2018. Available at: http://www.marketsandmarkets.com/Market-Reports/synthetic-biology-market-889.htmlMarketsandMarkets.com (2014) Synthetic Biology Products and Applications Inventory. Wilson Centre. Available at: http://www.synbioproject.org/cpi/Synthetic Biology Project (2015)


Mastomys natalensis), a highly commensal species in West Africa. Primary transmission to humans occurs through direct or indirect contact with rodent body fluids such as urine, feces, saliva, or blood. Our research draws together qualitative and quantitative methods to provide a fuller and more nuanced perspective on these varied points of human–animal contact. In this article, we focus on the hunting, preparation, and consumption of rodents as possible routes of exposure in Bo, Sierra Leone. We found that the consumption of rodents, including the reservoir species, is widespread and does not neatly tally against generational or gender lines. Further, we found that the reasons for rodent consumption are multifactorial, including taste preferences, food security, and opportunistic behavior. We argue that on certain topics, such as rodent consumption, establishing trust with communities, and using qualitative research methods, is key to investigate sensitive issues and situate them in their wider context. To conclude, we recommend ways to refine sensitization campaigns to account for these socio-cultural contexts.Lassa fever is a zoonotic hemorrhagic illness predominant in areas across Nigeria, Sierra Leone, Guinea, Liberia, and southern Mali. The reservoir of Lassa virus is the multimammate mouse ( Lassa fever (LF) is a viral zoonotic hemorrhagic illness endemic in parts of West Africa with repeated outbreaks recorded in Sierra Leone, Liberia, and Nigeria   is the multimammate mouse , closely followed by the Temne (31.8%). A majority of the population (60%) is rural with a literacy rate of 43.3% SSL  and justThe study was conducted between May and June 2014 (8 weeks) in Bo district in the Southern Province of Sierra Leone. In this district, the Mende are the dominant ethnic group (79%), followed by the Temne (7%), with Islam (72%) and Christianity (27%) the principle religions SSL . In ruran = 21), informal discussions, focus group discussions with ad hoc recruited participants , and direct observations over the entire duration of the study time. Fourteen villages were purposively selected to include those of varying size, location, and distance from main transport axes. Between 1 and 3 discussions (IDI and/or FGD) were done in each village. Selection of villages was restricted according to travel distance for the study team (max = 40 km). Individuals were chosen purposefully to achieve representation from various groups , those knowledgeable of the community , and those known to engage in the behaviors of interest. These people were identified making use of the long-standing and continuous presence of our local research team in the area since 2010. Discussions were carried out in Mende, Krio, or English and facilitated by a translator using guidelines for IDI/FGD translations , automatically collated on formhub (https://formhub.org) and exported as Microsoft Excel files.A cross-sectional questionnaire survey was carried out midway during the fieldwork by local staff based on findings from the qualitative component. Questions were in English with use of Mende terms and answer format was either single choice, multiple choice, or open-ended. Open-ended answers were used to determine any emerging themes that could inform the qualitative component. The quantitative survey contained 55 questions covering all forms of contact with rats  as well as food security and knowledge of LF. The survey was conducted with smartphones using OpenDataKit software  to determine the sample size per village. However, this approach was abandoned midway through the survey when Ebola virus disease (EVD) was confirmed in the neighboring district, thus not all villages have the same proportional representation. Selection of individuals was carried out according to the WHO EPI Coverage Survey method WHO  due to tIn total, 524 subjects were recruited. Seven records were excluded because no village name was indicated, 57 because respondents lived in a major city , 20 because respondents lived in other villages than the nine selected villages, and 11 because missing data on at least one outcome. The final sample size was thus 429. Sample size varies by question because skips were used to avoid asking redundant or irrelevant questions. Records with answers stating “unknown” or “don’t know” were not included in the analysis for that particular question. We provided a simple statistical description of the study participants from all nine villages. We calculated actual sampling fractions for each village, which we used as weights to account for differences in probability of selection. Accounting for the sampling design by Taylor linearization, we estimated proportions of subjects with respect to knowledge of Lassa fever, rats hunting, rats preparation, and rats consumption. We then carried out univariable and multivariable logistic regression models on each of the following outcomes: “hunted rats in the past 3 months,” “ever hunted rats,” “prepare rats at present,” “ate rats in the past 3 months,” and “ever eaten rats.” The explanatory variables used are “think that eating rats can cause disease ,” gender , age group , educational level , ethnicity , and religion . No model selection approach was used. Adjusted Wald tests were used to assess whether there is evidence of association between explanatory variable and outcome. All analyses except the description of the study participants were performed with finite population correction using villages as strata, and were conducted with STATA 13. .The study was approved by the ethics committee of the Government of Sierra Leone, Charité Berlin, and the Royal Veterinary College. An informed consent form was read out in English, Mende, or Krio to each participant, and consent was obtained from all individual participants included in this study. At the end of every visit, villagers were given a specific opportunity to ask questions about LF.The socio-demographic characteristics of the study participants in the quantitative survey are given in Table Crocidura spp.) and small- to medium-sized rodents  are collectively termed “rats” in English, “arata” in Krio, and “nyini” in Mende. In our study, we use the same categorization when referring to the word “rat.” Larger species of rodents, such as the cane rat (Thryonomys swinderianus) and the Gambian pouched rat (Cricetomysgambianus) do not fit into this category. Individual species are referred to using their vernacular name in Mende  and Praomys spp. (P. rostratus and P. tullbergi) are morphologically very similar, especially when observed at dusk, the peak activity time for both species  or “town/village rats” , although these are flexible categories that vary according to where the animal is mostly seen. M. natalensis is considered both a bush rat and town rat as it is confused with either M. erythroleucus (a bush rat), Praomys spp. (a bush rat), or Rattusrattus (a town rat). Our ongoing ecological studies indicate that M. natalensis and R. rattus share the commensal habitat in rural villages around Bo .During discussions, nearly all informants were able to correctly identify and name individual species from photographs. Species are distinguished, and sometimes named, according to their physical characteristics , their behavior , or the location where they are found . Shrews . For the quantitative survey, less than half of respondents associated LF with animals , diet (carnivorous), and morphology , an understanding that may have been compounded by errors in the delivery and/or comprehension of previous sensitization messages citing shrews as the reservoir for LASV. Similarly, town rats also have a “repellent” morphology  and are seen to live in unhealthy places that are in close proximity to humans , which tends to associate this category of rat with endemic diseases such as LF, malaria, yellow fever, typhoid fever, cholera, and EVD.The term “hunting” is used here to describe any form of catching or trapping of rodents, from subsistence activities to child’s play, but excludes other specific rodent control methods such as rodenticides and cats.Traps are built specifically to catch rats. “Torley” Fig. a and “koMastomys spp. and Praomys spp. are the most commonly caught species  authorities. When interviewed without the presence of an adult relative, children were more readily to admit eating both bush and town rats. Parents acknowledged that their children probably hunted and ate rats in hiding, and that there was little that they could do to stop them.All species of rodents are eaten except for shrews (irrespective of where they are caught) and town rats Fig. . Some MuPreparing and consuming rats was carried out without ceremony or occasion. A commonly cited reason for consumption was its supplementary value: rat meat provides a “very important source of protein” and is necessary for maintaining a “balanced diet”, satisfying a “want of meat”, born “out of poverty.” It is important to note that this desire for nutritional security was expressed not in terms of quantity but for a diverse quality of food sources. All informants bar two  stressed that they would not go hungry if rat was no longer available. In contrast to bland foods such as rice or beans, rat meat was overwhelmingly described as ”a sweet (tasty) meat” that makes a “very good dish,” so much so that it was popularized in a song by singer Amie Kallon in the 1970s describing rat meat as “sweeter” than cow meat. About half of the informants stressed that they would continue eating rat meat even if cow meat was available and affordable. Those that expressed a preference for beef emphasized the comparatively fewer bones and more meat in cows, though some added that large rodents, which combine the benefits of both rat and cow meat, are preferable to both.However, questions of consumption preference were ultimately trumped by pragmatism: it was considered wasteful to throw away bush rats killed for pest control. Many informants explained that while other sources of protein are available  rat meat is free, easy, and fast to catch. Informants no longer consuming rats reported eating less meat or spending more money to buy alternatives. Among those who no longer ate rats (or said they didn’t), fear from disease, in particular LF, was by far the single most important reason. Linguistic responses by those who confirmed rat consumption included words or expressions such as “tempted,” “trying not to,” and “nearly stopped,” suggesting that whatever the reasons for eating rats, they outweighed the fear generated by LF.Many informants talked freely and casually about rat consumption, but some would contradict themselves, modify their statements, change tense, or cut the conversation short. Other informants opened up as trust was established . In addition, the proportion of behaviors reported during IDIs and FGDs contrasted with the proportion reported during the quantitative survey Tables  and 4. RIn the multivariate analysis, gender was the only variable that was consistently and significantly associated with a history of hunting rats in the past 3 months and over lifetime, preparation of rats, and consumption of rats in the past 3 months and over lifetime Table . All othIn response to the clear discomfort that the topic of rat consumption generated for some of our informants, interview prompts were refined to explore the reasons for that reticence. A recurrent theme was the fear of talking about rat consumption to strangers. Informants explained that they were afraid to acknowledge this practice because they had been advised against eating rats through sensitization messages from health care workers and through the radio. The survey team aroused suspicion, as they were identified as government workers, taking notes on electronic devices to send to “higher authorities.” It was thought that if authorities knew about who ate rats, they might prevent those persons from accessing health care services, take them away for testing, or even inject them with LASV. Other reasons were also mentioned, such as fear of blackmail (from the research team), and being excluded from potential benefits that the study might bring. However, there was no sense of shame in admitting to eat bush rats, in contrast to town rats and shrews.The study was conducted in one rural district of Sierra Leone with a predominantly Mende population, thus the findings cannot be considered representative of the whole country. However, we believe that some of its findings are likely to have broader regional relevance across the Mano River basin, as Mende, Kissi, Kono, Toma/Loma frequently mix, migrate, and thus share a history and culture  was commonly reported and is likely to pose a risk for zoonotic transmission of LF given the presence of LASV in various bodily fluids and organs of M. natalensis in the catch, i.e., on the number of M. natalensis caught and eaten. Ecological studies in Guinea suggest that M.natalensis is predominantly found in houses and proximal cultivations, but infrequently in distal cultivations , as well as preference and avoidance of certain species, provides a strong argument to investigate human behaviors as drivers for disease emergence  to hunt (bush) rodents. Moreover, preliminary information indicates that hunting of rats by children is considered a “boy” activity, emulating large game hunters, who are customarily men. Child hunting can operate in a highly autonomous fashion outside of parental control, an activity that is thought to be an important part of child socialization, bridging the social and ecological environments . This form of interaction is an important factor to consider when investigating and preventing zoonotic spillover events, as for example with the West African EVD outbreak which is believed to have started during hunting by children  should provide the flexibility to mitigate contact with these species only. Given the success of using photographs of rodent species during this study, we suggest that outreach teams make more use of visual materials. There is also a need to address the misconception about the reservoirs of LF; despite long-standing sensitization campaigns in the area, many incorrectly identified shrews and town rats as the reservoir. It was difficult to ascertain whether this misconception arose from errors and inconsistencies in sensitization messages, or because of unintentional or intentional misunderstanding, for example by constructing a narrative that suits people’s practices . Skepticism and rumors about LF (possibly heightened by the EVD epidemic) was prevalent, a consequence of deep-rooted mistrust in government and healthcare services, underlining the importance of devising clear, concise, consistent, and accurate messages (Hewlett and Hewlett Sensitization about the dangers of n = 25) set of semi-standardized interviews. However, it is unlikely that informants had any motivations for overestimating the prevalence of rat consumption, whereas we identified many reasons to underreport this behavior during the quantitative survey, such as distrust toward healthcare staff already described in Sierra Leone , although it is problematic to make such generalizations based on a small , which may have biased answers from female participants. With regard to the qualitative data collection, we could have concentrated on a smaller number of villages in order to gain a more finely grained description of rodent hunting and consumption. Further investigations in this area and along these lines are currently underway.In this study, we have sought to provide a description of the socio-cultural and environmental contexts within which people and rodents interact in an LF-endemic area. Our findings point to some salient features of human–rodent interactions—the roles of taste and children’s play—and other forms of rodent interactions occurring in domestic and peri-domestic spaces that demand further anthropological and epidemiological research to characterize human–rodent interactions. The discrepancies between the survey, impromptu discussions, in-depth interviews, and observational work point to the limitations of using quantitative methods to investigate sensitive topics. As such, this study underlines the importance of situating disease within the wider socio-cultural contexts in which it occurs and illustrates the value of multidisciplinary collaboration in health research and policy.


This article proposes the application of Laplace Transform-Homotopy Perturbation Method and some of its modifications in order to find analytical approximate solutions for the linear and nonlinear differential equations which arise from some variational problems. As case study we will solve four ordinary differential equations, and we will show that the proposed solutions have good accuracy, even we will obtain an exact solution. In the sequel, we will see that the square residual error for the approximate solutions, belongs to the interval , which confirms the accuracy of the proposed methods, taking into account the complexity and difficulty of variational problems. The calculus of variations is a powerful branch of the analysis with many applications in both pure and practical mathematics Lanczos . It has As will be seen in the next section, the procedure that we will follow consist in finding the differential equation for a function, that leads an integral to take an extreme value.Although some variational problems were solved by using special methods  and Adomian’s decomposition method (ADM) (named the H2LTM), it is described in reference  was proposed by Ji Huan He, it was introduced to approach various kinds of nonlinear problems. The HPM is considered as a combination of the classical perturbation technique and the homotopy (whose origin is in the topology), but not restricted to small parameters as occur with traditional perturbation methods He , 1999.A is a general differential operator, B is a boundary operator, f(x) a known analytical function and Γ is the domain boundary for Ω. A can be divided into two operators L and N, where L is linear and N nonlinear; so that   14) can Substituting  into 1414 and eqWhen mentclass2pt{minimLT-HPM follows the same steps of standard HPM until , next weUsing the differential property  of LT, wmentclasspt{minimaThen substituting  into 2020, we geAssuming that The above notation has emphasized the fact that the nonlinear operator Vazquez-Leal et al.  introducAs first step, we introduced the following homotopy  in  by anothUsing the differential property of LT, we have Spiegel .28\documAssuming that the solutions of  and \docThen substituting  and 31)31) into Assuming that the initial approximation has the form: To obtain , we assuplicitly  for thisplicitly .36\documned [see ].m times, we obtainUsing the properties  and 171171, we hAssuming also, that the solutions of the ODE to solve, can be expressed as a power series of Then substituting  into 3939, we geAssuming that For boundary value problems it is expected that some of the initial conditions above mentioned, be initially unknown; therefore  can be eRequiring that  satisfiej additional equations, then a convenient possibility is incorporating the following j-equations , up to get as many equations as parameters to determine. If are required, say uting of  into 55) into Equating terms with identical powers of … .Solving the above equations for and so on.By substituting –62) int int62) iIn order to calculate the value of ire that  satisfieThus, substituting  into 6363, we obThis case study employs CVLT-HPM method.We will obtain the exact solution for the problem of finding a function that extremizes the value of the integral.After employing Euler equation , for \doConsidering the boundary conditions Since it is not known in advance the value of ′(0) and  has a te form as , in its u:Besides  implies Therefore, we can express formally our problem in terms of In the same way, we note thatWith the purpose of applying CVLT-HPM, we will rewrite  as folloIn accordance with “In order to apply CVLT-HPM, we simplify  as folloAfter applying Laplace transform to  we get\dAs it is explained in Spiegel  it is po)=0 .].\documeOnce the form . CVLT-HPthe form –87)].].\documeUnlike basic LT-HPM algorithm “” section method “” sectiontion for , throughtion for , which sCase study 3 was presented in the most general possible manner . This ca Simmons .The corresponding Euler equation , presenttitution  in ordertitution . Despiteing Eqs. –119), t, t\documn=3 . A relen=3 .It is worth to note the value of the SRE of  is just Finally, our case study 4, proposed the problem of extremizing , which wal steps –139) an an\documal steps –147) we we\documWe note the proposed homotopy  chose thg(x)see “” sectiong(x)see “ employedg(x)see “ and non-ent}g(x)  is integent}g(x)  cannot bent}g(x)  in termsent}g(x)  show thered that  satisfiesolution . As a masolution . For botsolution  and . On the other hand the article suggested for some cases, appropriate mathematical manipulations of the aforementioned equations, in order to transform them into a more accessible form, to increase the possibility of success (see cases study 3 and 4). The above is even more important, considering that many times even the numerical methods fail to solve these complicated equations, such as happened with our case study 3, and the numerical solutions and qualitative methods are usually the only manner to obtain information from a nonlinear problem. Finally, an outstanding issue for a future work is improving the methodology used to calculate the parameters introduced for our proposed solutions. A forthcoming paper should investigate a systematic manner to find the optimum values for the aforementioned parameters, without using the method of trial and error attempts in its determination.


Youth represent 40% of all new HIV infections in the world, 80% of which live in sub-Saharan Africa. Youth living with HIV (YLWH) are more likely to become lost to follow-up (LTFU) from care compared to all other age groups. This study explored the reasons for LTFU among YLWH in Kenya.Data was collected from: (1) Focus group Discussions (n = 18) with community health workers who work with LTFU youth. (2) Semi-structured interviews (n = 27) with HIV + youth (15–21 years old) that had not received HIV care for at least four months. (3) Semi-structured interviews (n = 10) with educators selected from schools attended by LTFU interview participants. Transcripts were coded and analyzed employing grounded theory.HIV-related stigma was the overarching factor that led to LTFU among HIV + youth. Stigma operated on multiple levels to influence LTFU, including in the home/family, at school, and at the clinic. In all three settings, participants’ fear of stigma due to disclosure of their HIV status contributed to LTFU. Likewise, in the three settings, the dependent relationships between youth and the key adult figures in their lives were also adversely impacted by stigma and resultant lack of disclosure. Thus, at all three settings stigma influenced fear of disclosure, which in turn impacted negatively on dependent relationships with adults on whom they rely  leading to LTFU.Interventions focusing on reduction of stigma, increasing safe disclosure of HIV status, and improved dependent relationships may improve retention in care of YLWH. HIV is a leading cause of morbidity and mortality among youth 15–24 years of age in the developing world , 60% of Youth are less likely than adults and children to be tested for HIV, access HIV-related care, remain in care, and achieve viral suppression , 10. PriResearch among other populations has shown that adherence to ARVs is particularly difficult due to: 1) fear of disclosure 2) HIV-related stigma, 3) poverty, 4) mental health, and 5) insufficient support networks –17. TherIt has also been hypothesized that structural factors, such as the school environment, may play a role in the retention of care of YLWH. A study in South Africa among school-going YLWH found that many youth had not disclosed their HIV status to their teachers for fear of stigma and discrimination . TargetiUnderstanding the reasons for LTFU among HIV-positive youth in SSA will provide critical information to design feasible, acceptable and effective interventions for this large population of HIV-infected individuals who are less likely to access and remain in health care compared to other populations. Through the triangulation of focus groups and interviews with health care workers, HIV positive youth, and educators in SSA, we identified and explored the multi-level factors contributing to LTFU among YLWH in SSA.This study took place in Kisumu, previous capital of Nyanza Province, and under the new Kenyan constitution, the headquarters for Kisumu County. Nyanza Province is one of Kenya’s poorest areas with 63% of the population living on less than $1 a day . The majWe conducted a qualitative study employing focus group discussions (FGDs) with community health workers ; semi-structured interviews with YLWH (15–21 years of age) who were LTFU ; and semi-structured interviews with educators .FGD participants were recruited using purposive sampling from four government-run HIV clinics in Kisumu. CHWs (some of which were HIV infected) were eligible if they had been working as a health worker for at least three months, and reported working with HV infected youth clients. LTFU youth participants were recruited from two clinics that served youth. A list was generated from the clinics electronic medical record of all LTFU patients in the target age range. Youth were invited to participate either by phone or in person during a home visit by a CHW on the study team. However, all interviews were conducted face-to-face. Educators were recruited from schools attended by LTFU participants. Eligible educators had to have been working at the school for at least six months. We collected a list of the schools LTFU participants had attended or were attending, and then selected an educator from 10 schools where LTFU participants were currently attending or had attended school in the past two years. The principal from each school was approached and asked to nominate an educator from their school who was knowledgeable regarding the needs of HIV infected students. The nominated educator was then asked if he or she wanted to participate in the study.FGDs were led by trilingual Kenyan research assistants and conducted predominantly in English. Although participants were fluent in English, at times Dholuo and Kiswahilli phrases were interjected as is common in Kenya. Individual interviews were conducted by a Kenyan research assistant in English, Kiswahilli, or Dholuo based on participants’ language preference.All participants provided written informed consent, or assent if they were minors, to participate in the study and were reimbursed for transportation expenses. Parental consent for youth 15–17 years of age was waived in order to protect youth who may not have disclosed their HIV status to their guardians. All youth were given a multiple-choice test to assess their understanding of the consent prior to beginning the interview. Participants had to score 75% or greater in order to be eligible to participate. During the recruitment phase, LTFU youth were approached by a trained CHW wearing street clothes, who did not identify her affiliation with the clinic until she was in a private place with the potential participant. The CHW gave the participant a choice for the location of the interview. She then explained that if the participant chose to have the interview in his/her home, the interview would be held with her alone but that other people in the home may nevertheless hear the interview. The CHW encouraged the potential participant to have the interview in a private space outside the home if possible (All but two LTFU participants elected to be interviewed outside the home). All LTFU participants were referred back to their health center of choice, regardless of whether or not they completed the interview. During the recruitment of school educators, there was no mention of the reason the school was chosen for recruitment, or of the name of the student participant. School educators were told, “We are interviewing educators in the Kisumu area”. There was no contact between the study staff and LTFU participants in the school. Consent was obtained from LTFU participants for permission to visit the last school they attended for the purpose of conducting interviews with educators. The study was approved by the Institutional Review Boards at the Kenyan Medical Research Institute and the University of California at San Francisco. Permission was also obtained from the Kenyan Ministry of Education to conduct interviews in the schools.Prior to the individual interviews, LTFU youth participants completed a brief questionnaire, including items eliciting information about their age, gender, marital status, last clinic visit, name of last school attended, and last grade and year enrolled in school. Demographic information was not collected from CHWs or school educators. Mode of HIV transmission is not routinely collected in the HIV clinics in Kisumu. Although LTFU participants were asked during the interviews if they knew how they became infected with HIV, many denied knowing. YLWH were asked about their current living situation. The majority of the guardians who lived with the YLWH were not the youth’s biological guardians.The FGD guide included questions regarding: 1) barriers to follow-up for YLWH, 2) enablers to follow-up, 3) the effect of the school environment on follow-up, and 4) interventions that could improve retention. The interview guide for LTFU youth participants included questions regarding individual, family, peer, school, and environmental barriers to follow-up. The interview guide for the educators included questions regarding school-based factors that may act as barriers or enablers to retention in care.Each FGD and individual interview was audiotaped, transcribed and translated into English when necessary. A structured codebook and subsequent analyses were developed, guided by grounded theory , 24. We All of the 18 CHWs who met inclusion criteria and who were approached to participate in the study agreed to participate. Of the 11 school educators who met inclusion criteria and were approached to participate, 10 agreed to participate. Of the 30 LTFU participants who met inclusion criteria and were located and approached by a CHW, three refused to participate, leaving a total of 27 completed interviews. LTFU participants were 70% (19) female. Nineteen percent (5) were 16 to 17, 37% (10) 18 to 19, and 44% (12) 20 to 21 years of age. Fifty-nine percent (16) self identified as single, 26% (7) as married, and 15% (4) as separated. Twenty-six percent (7) of youth were attending school at the time of the interview.Our model is illustrated in Figure Participants described multiple types of HIV-related stigma in all three settings. These included: internalized stigma, or instances when youth stigmatize themselves because of their HIV status; perceived stigma, whereby youth feel that someone is stigmatizing them; fear of enacted stigma, which is expressed when youth act to avoid being discriminated against because of their HIV status; and enacted stigma, defined as experiencing discrimination based on one’s HIV status.HIV-related stigma, fear of disclosure and compromised dependent relationships with relatives or guardians contributed to LTFU. In a large part due to the HIV-related mortality, but also due to all-cause mortality, relatives other than biological parents were raising most study participants. When a parent died, it was expected that a relative would parent the orphaned child. However, as stated by an 18 year-old female participant, “It is always rare to get a person who is ready to help you out after the death of your parents”. These circumstances often resulted in poor dependent relationships, stigma directed toward YLWH by family members and fear of disclosure to family members.“In a home set up, you will find that if it is a mother taking care of an orphan…the utensils they are using in the house will be separated…[Stigma] comes in the things that people use”.The majority of YLWH experienced HIV-related stigma from family members. This was often enacted stigma based on misinformation about HIV that led to discrimination and poor mental health outcomes. A CHW discussed family-based stigma regarding beliefs about HIV transmission. I told [my uncle] that I wanted to go back to school but he said that I was dead long time ago. There is no need of taking a sick person to the school”.Many participants discussed families’ beliefs that an HIV diagnosis was a death sentence, with implications regarding support, particularly educational support, for infected youth. A 20 year-old (y.o.) LTFU female said, ““You will become lonely because [your family] will reject you”. Another 20 y.o. LTFU female said, “Some of the fathers…will mishandle you…This will drive a patient into suicide”.HIV-positive youth recounted the negative impact perceived family HIV-related stigma had on their mental health. One 18 y.o. LTFU female stated, At times, you are unable to inform the parents about [your HIV status]. Even if you are given the drugs, you cannot get the opportunity to use them”. One 18 y.o. LTFU female believed that family members spy on youth to discover their status, Your parents will demand to know where you are headed to. You will tell them that you are going to the hospital. They will check the content of your bag. They will be lucky to get the drugs.Fears of having family members discover one’s HIV status influenced participants’ clinic follow-up and their medication adherence for the majority of YLWH who had been diagnosed with HIV in the past 3 years. One19 y.o LTFU female responded, “You might be staying with your stepmother who has her own children in the same house. These children might decide to disrespect you. ‘Leave alone that guy. He is infected with HIV/AIDS,’ they will say.Some family members were aware of their youth’s HIV status, especially the family members of participants who had been diagnosed with HIV at a younger age, suggesting vertical transmission. However, these family members did not always keep the information confidential, as illustrated by this quote from a 21 y.o. LTFU female, My sister used to send me [money] so that I can honor my clinic appointment. We can use the money to pay for my transport” . In addition to monetary support, younger participants focused on the emotional support they received including love, care, and encouragement.Participants also reported positive familial support they received to stay in care, including monetary support, emotional support, and support regarding keeping their status confidential. Some participants, mostly older youth, focused primarily on monetary support. “Even if I forget about the drugs, [my guardians] remind me to take them. I feel more encouraged when someone reminds me about the drug”. Older participants discussed familial emotional support less frequently than younger participants.Emotional support appeared to play a role in improving participants’ mental health. Multiple participants felt supported by their family if they helped them remember their clinic appointments and drugs, and discussed their infection with them openly. For example, one 17 y.o. LTFU male said, ““My sister, she usually treats me rough. Sometimes I get somewhere to sit and think, is this really my sister?” When this participant was asked why he was not adhering to his medications and following up in care, he answered, “It is only my sister”.Conversely, some participants discussed their lack of familial emotional support. One 18 y.o. LTFU male stated that his emotional support from his sister, also his guardian, was so poor that he stopped adhering to medication and seeking care. I don’t go through difficulties because my guardians were the first people to know about my status and they didn’t tell anyone”.Participants stressed the importance of secrecy and how families can be supportive by keeping a youth’s status confidential. One 17 y.o male participant said, “At home, you will find that people are aware of [my HIV status] but instead of telling you that you should go to the clinic, they also forget it”.16 y.o. male: Does [your uncle] show any concern to help you with this?”Interviewer: No. I just feel that he is being forced…In terms of education, they support me. However, they just [disclosed my HIV status to me] and let me [take care of myself]”.16 y.o. male: Although some youth had supportive families, many LTFU participants reported having guardians who did not fulfill their caretaker role for their dependent youth, did not treat youth’s medical care as a priority and who therefore did not assist them in accessing and staying in care as shown in the quote below. [My guardians] have no time to come to school. No one even came the last time that they were called”. Educators also commented on the lack of proper dependent relationships at home. One teacher said, “I think most parents are not aware of how to take care of the children. They don’t know what the child requires. I think the parents are not taking their part effectively”.This student also had difficulty with his guardians helping him obtain permission at school to attend clinic. The boy said, “For youth who are minors living with their parents or guardians, for whose care Kenyan law requires guardian permission, the lack of support from their guardians directly affected their ability to follow-up in clinic. Without guardian support, these youth encountered many barriers to attending clinic, suffered from lack of advocacy during clinic visits, were unable to adhere to medications, and lacked guidance in negotiating excusal and the dispensations needed in the school setting to attend appointments.Like at home, HIV-related stigma, disclosure and compromised dependent relationships with adults at school, contributed to LTFU of HIV-positive participants. The Kenyan school environment structure greatly influenced the ability of HIV-positive students to stay engaged in medical care. Specifically, students in Kenya attend school for very long hours with some students attending school on the weekend. Students in day school often commute long distances. Boarding school students generally attend schools far from home and rarely return home during the school session. The ability of these students to remain in care was particularly dependent on their school environment. The majority of the students attended government schools, which with their strict and rigid policies, also contributed to LTFU.The teacher will look down upon the child instead of helping him. They can call such students prostitutes”. Another example of enacted stigma was exclusion from school, as shared in this quote by a 20 y.o. LTFU female who had not been diagnosed with HIV until after finishing school, “Teachers used to send them away from school claiming that they might infect the others”. In their interviews, educators expressed stigmatizing beliefs regarding HIV-positive students. One teacher stated, “The first thing these students will know is that their future is gone. It has been destroyed completely”. This teacher also spoke about how he believed HIV positive youth would want to spread the virus to HIV negative peers. Many of the lessons taught by teachers regarding HIV perpetuated inaccurate and stigmatizing beliefs. One teacher said, The solutions are obvious they have to abstain and nothing else. There is no need of telling them to use condoms. We are also telling them the dangers [of HIV]. You will die. That is one. You will suffer in this world because of that disease.School stigma, including educator-related and peer-related stigma was widespread. Educator-related stigma included enacted stigma, fear of enacted stigma, stigmatizing beliefs, stigmatizing lessons in the curriculum and perceived stigma. An example of educator-enacted stigma was name-calling of HIV-positive students. A 20 y.o. LTFU female said, ““[A student] could also get HIV after sharing the same cup”.School educators were asked how an adolescent contracts HIV. The majority of teachers put particular emphasis on sex. When educators were probed regarding other modes of transmission of HIV, many were unaware that an infant could be born with HIV and survive to adolescence. Some educators held inaccurate beliefs about youth’s infectivity. The 2011 7th grade science textbook states that HIV can be passed by saliva. One educator said You cannot come out and say that I have seen this [infection] in you. You see it and leave it at that. [If I do something], then I will be the talk of everybody”.Some well-meaning educators feared enacted stigma leading to negative repercussions for them if they assisted a potentially infected student. Referring to his hesitancy to reach out to an ill-appearing HIV orphan, one teacher stated, “Once they know that you are positive, they will give you that name…Instead of calling you by your name, they will call you ‘AIDS’”. In some instances, YLWH participants expressed their own stigmatizing comments about other HIV-positive students. In addition peers sometimes socially isolated HIV-positive students. A teacher said, “If at all they [disclose their HIV status], other students may start isolating them and running away from them. They think the student can infect them”.According to participants, peers stigmatized HIV-positive students in different ways. Like educators, peers verbally stigmatized HIV-positive students in school. One teacher said, “The teachers used to say that in a whole class, there might be one student who is HIV positive. You cannot look down upon him. He is also human like you. He is just the same as those who aren’t infected.Some educators attempted to combat enacted peer stigma. A 19 y.o. LTFU female participant recounted, In schools, many children don’t understand HIV well. People will fear you. Once everyone fears you, you will have no option but to die. You will think of eliminating yourself.Being the subject of stigma led to negative outcomes for youth, including lack of disclosure, decisions to drop out of school, and depression. As stated by one CHW, The vast majority of HIV-positive students did not disclose their status at school due to fear of HIV-related stigma and of inadvertent disclosure to others. In most cases, this lack of disclosure directly affected their retention in care.“[Students] hate disclosing. They don’t even [disclose] to their parents unless they are totally sick and are in bed. [Disclosure] can never happen when they are still healthy”. In general LTFU participants reported that it is difficult to interact with the teachers at school, as described by this 16 y.o. male LTFU participant, I am not used to the teachers. I solve my problem alone…I also cannot disclose my status to them. It therefore means that the school doesn’t create an easy environment for [HIV-positive] students.The majority of youth chose not to disclose their HIV status to educators if they were in good health. One teacher said, Students’ guardians also avoided disclosing a student’s HIV status to schools, which made it difficult for YLWH to leave school to attend clinic appointments. None of the schools that we visited reported that guardians had disclosed their children’s HIV status on the health forms required for enrollment. Furthermore, although the forms ask about “illnesses”, none that we reviewed specifically asked about HIV.I was developing skin rashes…my body was like in a fungal or bacteria. That is why my sister had to tell the head teacher that I am [HIV-positive]”. Participants also reported that teachers disclosed their status against their will. At times this was done for the purpose of attempting to help a student. However in other circumstances it was harmful. Both types of breaches had the potential for further stigmatization.Forced or involuntary disclosure was reported in several situations. Participants reported that forced disclosure often occurred in the event of illness. An 18 y.o. LTFU male stated, “Most of the time I spend in school and I will not like to carry my drugs to school…because maybe I can carry them to school, place them well in my bag and accidentally someone comes into my bag and opens it, finding them there. [The drugs were] making me to leave school earlier…it was bringing problems to the teachers because I didn’t tell them anything to do with my drugs.Fear of involuntary disclosure, and resultant lack of disclosure directly affected poor adherence with medication in school. Furthermore, medications often needed to be taken during the students’ long school day. As described by this 17 y.o. LTFU student, However, some participants reported finding teachers, guidance counselors, and even cooks at school whom they trusted and who were skilled at providing advice. These were often people not appointed by the school to serve this role but who fell into it naturally and so were sought out by students.“The first school rule states that no class lesson should be missed. If you fear disclosing, you will just remain in school”. Educators were aware of this problem, A child can go to collect drugs but will not say that ‘I went for the drugs for HIV/AIDS.’ As a teacher, you will insist, ‘Why are you absent?’ This will encourage the child to avoid going for the drugs because absenteeism is not allowed (Schoolteacher).School policies regarding absenteeism, excusal from school, and missing exams were structural barriers that prevented retention in care. The overall consensus from both students and teachers was that absenteeism was inexcusable. A 16 y.o. LTFU male said, It depends with the kind of teacher because maybe the principal or the deputy knows that you are HIV and the teacher on duty doesn’t know that”. Some teachers granted permission for a student to leave school depending on the perceived validity of a youth’s request, particularly problematic for healthy HIV-positive students who have not disclosed their status. As an 18 y.o. LTFU female student said, “Some teachers will want to know why you are going to the hospital yet you don’t look sick”.Most of the schools had similar procedures for obtaining permission to be excused from school. Permission was required from the principal, deputy, class teacher, and/or teacher on duty (who rotates weekly). Problems arose with this process, as one 18 y.o. LTFU male student said, “When a child has gone to the hospital, he or she might come back and find we have completed the exams. She has to pick from there…we have finished”.Some participants found ways to leave school for clinic without disclosing their HIV status. One boy discussed being able to go to clinic most times, but other times when exams were announced at the last minute he had to miss his clinic appointment. Even if a student was permitted to leave school, he/she may not be able to make up a missed exam. One teacher said: “Additional issues arose related to involuntary disclosure for students attending boarding school.One school had a policy of inspecting students’ possessions, putting them at risk for involuntary disclosure should clinic cards and medications be discovered. One participant who was a boarding master reported discovering one student’s status because he found ARVs in his bag.“They can’t give me support when they don’t know I am a victim”. This belief reflected students’ focus on receiving individual support from the school, such as being allowed to go to the clinic without reprisals, being excused from labor-intensive activities, or receiving nutritional supplementation.Many HIV-positive students and educators felt that in the absence of disclosure, it was not possible for a school to support HIV-positive students. A 17 y.o male student said, Students focused less on the school providing an environment friendly to HIV-positive youth overall, regardless of disclosure.We will also try as much as possible to talk to him regularly and to make him feel comfortable that he is just like other normal students”. However, teachers had not been provided the training for such a role.Some teachers reported having taken it upon themselves to provide emotional support and counseling to individual students, as per this quote from a teacher, “There were instances where educators had stepped in to provide the support that students’ guardians did not provide. A 16 y.o. LTFU female described how she had been so sick that a teacher took her to clinic. When she tested positive for HIV, the teacher assisted her in attending clinic appointments, medication adherence, and with nutrition. The student was afraid to disclose her status to her guardians. When she finally did, they did not support her access to care, leaving the student to depend of her relationship with her teacher to help her access care.Sometimes educators did not fulfill their responsibility. A boy attending boarding school was being watched over by the principal because his illness was progressing. The principal was entrusted with the boy’s medications to ensure they would be taken properly. Unfortunately problems arose from this arrangement because sometimes when the student went to take his drugs at the allotted time he would find the office locked. Additionally, unbeknownst to him, all of the teachers found out his status, eventually requiting him to leave the school.In addition to family and school factors, clinic-related factors contributed to LTFU, particularly clinic culture, fear of involuntary disclosure, and the failure of dependent relationships in clinic.It can be bad and it is also embarrassing if everyone says that you are a defaulter. You will be embarrassed because you are the center of attraction. They will say that you are visiting the clinic claiming to be sick but the real problem is that you are a defaulter. The workers at the clinic won’t treat you well. They will not assist you at this time.Patient-provider relationships in Kenya are often one-sided, with patients listening to what they are told without interjecting their preferences, including preferences regarding appointment days and times. This was typical of many clinic-related scenarios discussed by youth. Even if participants were not able to show up for their designated appointment because of a prior engagement they would not volunteer this fact. The LTFU participants feared how they would be treated for missing their previous clinic appointment, as related by this 18 y.o. LTFU female, As a patient, it is your fault and so you just have to bear with it” .When a participant was asked about being treated badly for missing his appointment, he responded, ““I feared that the doctors were going to disclose my status to other people. I therefore decided not to come”. One participant spoke about her fear of alleged corruption in the clinic associated with keeping ones’ status confidential. “I am told that you have to pay some money for it to be confidential. I haven’t asked how much it will take” . Participants recalled situations where healthcare workers were not sensitive to their confidentiality at clinics: “At times they just shout saying, ‘Those who are here to pick the drugs should sit on that side’” . However, one 20 y.o. LTFU female expressed trust of health care workers, “I am sure of the client-doctor confidentiality”. Due to fear confidentiality many participants said they preferred to be seen by healthcare professionals who did not know them.Multiple issues related to disclosure arose in the clinic setting, including fear of direct disclosure by clinic staff and fear of disclosure by association with the clinic. One 16 y.o. LTFU male said, As soon as I got [to clinic], I saw many of our school mates…I thought that they knew I was going to take drugs there… Since then I haven’t gone to the clinic”. Multiple participants chose clinics far from home in an attempt to avoid being recognized, however this created other obstacles. “You can fear going to a nearby clinic…I will have to come [to this clinic] yet I might not have [bus] fare at times”, reported a 19 y.o. LTFU female.Another frequently cited reason for not attending clinic arose from the fear of being seen and recognized in clinic, and thereby having one’s status revealed. A 17 y.o. LTFU male stated, “I think some of the counselors there just start to shout, instead of just asking and then I give them a good reason [for missing clinic]… If they don’t relate to me good enough, I don’t think there is any reason for me to take the drugs .The majority of participants cited unsupportive clinic staff and/or providers as factors contributing to their LTFU from clinic. They really make it easier. It was like my home. Maybe I wasn’t getting that attention from home. I used to come to this place and felt loved. It is like there was a chance for me to live despite my status .Other participants spoke highly of the care they received at their clinic and felt very supported by the clinicians, motivating them to return. This [clinic] can go and talk to the principal. She will be reminding me to come to the clinic or she can let me go in case I approach her”.Lack of communication between the clinic, home, and school resulted from adults’ neglect of their obligations towards youth who are dependent on them for their care. Some youth, such as this 16 y.o. LTFU male, had ideas regarding ways this problem could be approached, “The last time I went to the clinic…my aunt was not there and she was the one responsible for me. So, those counselors told me that the adherence session could not be done when she is not there. I was asking them is she the one who needs the drug or me. I think that time we didn’t understand each other.Participants described conflicting messages regarding their dependent relationships. As per one 17 y.o. LTFU male, I was late maybe by one week because of exams. When I went there, they asked me, ‘Why didn’t you come?’ I told them I had exams, which I could not miss. They said even if you have an exam, you should have told us. We didn’t get on well because I told them I don’t think that’s my responsibility… I told them that I think they should call and ask why I didn’t come”.“Although clinicians expected adolescents to come to clinic with their guardians and expected guardians to support youth compliance, clinicians simultaneously held youth responsible for not showing up to an appointment to the same degree they would an adult, therefore not taking into account their developmental stage and dependent role. The 17 y.o. LTFU male referred to above, added, This participant asserted that he wanted to receive adherence counseling independently of his guardian but that nevertheless didn’t think it was his responsibility to alert the clinic that he would not be attending, suggesting that his expectations of the clinicians were also not consistent.We qualitatively evaluated the reasons that YLWH aged 15–21 years are LTFU in Kisumu, Kenya. We found that LTFU was ultimately linked to fear of HIV-related stigma, which in turn inhibited disclosure and negatively impacted dependent relationships in the home, school and clinic. Adult figures in all settings often did not fulfill their responsibilities to the youth who were dependent upon them, leading to LTFU. In addition, although some YLWH wanted to be responsible for their own care, they were often unable to follow through with appointment and medication adherence. All of these themes emerged in the home, school, and clinic; suggesting that in order to address LTFU in YLWH in Kisumu interventions need to be inclusive of all three settings.HIV-related stigma clearly emerged from this study as a major factor contributing to LTFU. Prior research has shown that the factors that contribute to HIV-related stigma among adults in SSA include fear of transmission, due to incorrect beliefs regarding the mode in which HIV is transmitted, and fear that an individual will die. Both of these stigmatizing beliefs were pertinent to youth in this study . In addiThe school setting had a particularly profound effect on LTFU. School policies and stigmatizing beliefs among educators and students greatly impacted YLWH, making it difficult for them to attend school and to stay in care. Furthermore this study suggests that the school influenced how all students were socialized into maintaining stigmatizing beliefs about HIV due to a clear lack of scientific information in the school curriculum demythologizing HIV. This study confirms published findings that educators lack proper training regarding HIV and at times breached students’ confidentiality regarding their HIV status , 35, 36.Clinic appointment adherence depends on disclosure. However, we found that the reasons for lack of disclosure were often related to fear of stigma at home and at school. The majority of participants in this study chose not to disclose their HIV status to their families or their teachers. Prior research has shown that PLWHA who voluntarily disclose their HIV status have better physical health outcomes , 38. HowHIV-related stigma, disclosure, and poor dependent relationships in the home, school and clinic accounted for the LTFU of the majority of our HIV infected youth participants. Greater social support has been shown to improve adolescents’ motivational readiness to adhere to medications in western countries , 32, 39.Certain limitations are inherent in qualitative research. In particular, caution is warranted in generalizing our findings given our relatively small sample of participants. In addition, selection bias may have impacted the study results. Specifically, we were unable to locate or recruit many LTFU youth because they had moved away or we had incomplete or incorrect locator information. In addition participating educators were nominated by school principals, possibly creating a bias towards the selection of educators who were more sensitive to issues related to YLWH. These limitations notwithstanding, our qualitative findings highlight important reasons for LTFU and possible interventions to improve retention.This study has implications for the role of educators, families and healthcare providers in addressing the needs of YLWH, including the reduction of HIV stigma, provision of safe confidential environments, and recognition of youth’s developmental needs. Our results suggest that HIV stigma interventions should be implemented in clinics and schools and should be provided to families and communities in order to decrease barriers to youth’s access and retention in HIV-care. The reduction of HIV stigma may also improve safe disclosure, thereby also enabling youth to seek HIV care. However, disclosure should not be a requirement for the provision of a safe environment for YLWH to attend clinics and schools. Important adults in youths’ lives, including guardians, educators, and clinicians need to be trained regarding their shared responsibility for the well being of YLWH. Future studies should pilot interventions focusing on HIV stigma reduction and education and the training of guardians, school educators, and healthcare providers regarding the unique needs of YLWH, and collaboration of adults to improve youth’s access to care. The goal of these interventions should be to reduce HIV stigma, improve support, improve health care services for YLWH, provide a greater level of confidentiality for YLWH, decrease youth’s morbidity and mortality and optimize their wellbeing.HTW was an Adolescent Medicine, Reproductive Infectious Disease, and Global Health fellow at University California, San Francisco (UCSF) when this study was conducted. HTW conducted this research while living in Kisumu Kenya over a period of 18 months. After finishing her fellowship, HTW joined the faculty at Georgetown University as an Assistant Professor in Adolescent Medicine. HTW had strong mentorship and research support from senior co-investigators in Kenya  and in the US .


Teachers’ conceptions of learning and teaching are partly unconscious. However, they are critical for the delivery of education and affect students’ learning outcomes. Lasting changes in teaching behaviour can only be realized if conceptions of teachers have been changed accordingly. Previously we constructed a questionnaire named COLT to measure conceptions. In the present study, we investigated if different teacher profiles could be assessed which are based on the teachers’ conceptions. These teacher profiles might have implications for individual teachers, for faculty development activities and for institutes. Our research questions were: (1) Can we identify teacher profiles based on the COLT? (2) If so, how are these teacher profiles associated with other teacher characteristics?The COLT questionnaire was sent electronically to all teachers in the first three years of the undergraduate curriculum of Medicine in two medical schools in the Netherlands with student-centred education. The COLT  comprises three scales: ‘teacher centredness’, ‘appreciation of active learning’ and ‘orientation to professional practice’. We also collected personal information about the participants and their occupational characteristics. Teacher profiles were studied using a K-means cluster analysis and calculating Chi squares.The response rate was 49.4% (N = 319/646). A five-cluster solution fitted the data best, resulting in five teacher profiles based on their conceptions as measured by the COLT. We named the teacher profiles: Transmitters , Organizers, Intermediates, Facilitators and Conceptual Change Agents (most modern). The teacher profiles differed from each other in personal and occupational characteristics.Based on teachers’ conceptions of learning and teaching, five teacher profiles were found in student-centred education. We offered suggestions how insight into these teacher profiles might be useful for individual teachers, for faculty development activities and for institutes and departments, especially if involved in a curriculum reform towards student-centred education. A teacher’s personal views on learning and teaching are important in creating an inspiring learning environment for students , 2. PrevThere is a difference between beliefs or conceptions of teachers, and teaching strategies or approaches. Beliefs and conceptions describe how teachers think about learning and teaching, while teaching strategies or approaches describe how they teach. Teaching strategies change more rapidly than conceptions depending on the demands of different teaching environments  .Several authors have argued that teachers’ conceptions influence their teaching approaches , 3, 6, 7Contrary to other domains of higher education, medical education research has paid little attention to teachers’ conceptions of learning and teaching –17 and eIn the current study, we explored teachers’ conceptions of learning and teaching more closely. We aimed to find out if profiles of teachers can be identified based on their conceptions.Information on teacher profiles with different conceptions on learning and teaching might be interesting for several reasons. Firstly, it might be useful for teachers to know their partly unconscious conceptions, and insight into their teacher profiles might stimulate recognition. Next to reflection, it might even contribute to a change in conceptions . SecondlIn other domains of higher education with conventional lecture-based curricula, categorizations of teachers have been reported before , 21–23. Our first research question was whether we can identify teacher profiles in student-centred medical education, based on the teachers’ scores on the COLT . If so, the second research question was how these teacher profiles are associated with demographic and occupational characteristics of teachers.We aimed to answer the first research question by conducting a cluster analysis, which groups similar teachers into subgroups. To answer the second question, we tested the associations with Chi square analyses.The COLT-questionnaire was sent to all teachers teaching in the first three years of the undergraduate curriculum of Medicine in two institutes with student-centred curricula in the Netherlands. These teachers were all involved in small group tutorials, lectures, practicals or skills training, or a combination of these. The two institutes were VU University Medical Centre in Amsterdam and Maastricht University Medical Centre, Maastricht, which will be referred to as Amsterdam and Maastricht. Amsterdam has had a student-centred curriculum for ten years, whereas Maastricht started with a student-centred curriculum when it was founded 40 years ago .In both curricula, 8 to 12 students attend two sessions each week in which they tackle authentic problems. Teachers are expected to scaffold student learning rather than transmit knowledge. In Amsterdam, the learning objectives students work on are already given in the assignments, while in Maastricht, the problems are open and students generate the learning objectives themselves. Both curricula feature two to four lectures per week, as well as practicals and dedicated time for self-study. Basic sciences and clinical content are integrated in the learning material, and early patient contacts are included in both curricula.The Ethical Review Committee of VUmc advised positively on the feasibility of this study. In the e-mail to the teachers we explicitly stated that participation was voluntary and that full anonymity was guaranteed.To measure the teachers’ conceptions of learning and teaching, we used a validated questionnaire, the COLT (Conceptions on Learning and Teaching). Its construction, including validation and reliability testing, has been described before . The queExamples of the COLT (Conceptions of Learning and Teaching) - itemsFactor 1: Teacher CentrednessStudents learn best when the learning process is guided by an expert who has an overview of the field of interest.As a teacher I have to indicate clearly what is important and what is less important for the students to know.I think that as an expert in my field I am eminently suitable to transmit my knowledge to students and that students should not have to look up that knowledge for themselves.Factor 2: Appreciation of Active LearningStudents learn a great deal by explaining subject matter to each other.Small group learning motivates students to study.I think it is more important for students to be able to analyse and critically appraise subject matter than to memorise facts.Factor 3: Orientation to Professional PracticeI think it is important that educational assignments are derived as much as possible from the students’ future professional practice.Being introduced to the day-to-day practice of their future profession motivates students to learn.It is a good learning outcome when students demonstrate that they can apply their knowledge during activities in situations in professional practice.Med Teacher 2012, 34:e483-e491; Available at http://colt.vumc.nl) Each item is rated on a five-point Likert scale . to measure conceptions on learning and teaching of teachers, in student-centred medical education. We also collected additional information about the participants: medical school, gender, age (50 years or younger vs. older than 50 years), discipline , rank , teaching experience (less than 5 years vs. 5 years or more), hours dedicated to education , educational role  and type of educational task .A web-based version of the COLT and the second questionnaire was distributed among all teachers (N = 646) using Netquestionnaires™. Data were collected between November 2009 and April 2010. Non-responders received one e-mail reminder, followed by one reminder by telephone or letter. A small gift (booklet) was sent to the participating teachers. In the e-mail to the teachers we explicitly stated that participation was voluntary and that full anonymity was guaranteed.For each respondent, we calculated the mean score for each of the three scales of the COLT, ‘teacher centredness’ , ‘appreciation of active learning’ , and ‘orientation to professional practice’. Questionnaire forms that were filled in incompletely (N = 13) were excluded from the analysis.We used a cluster analysis as the technique to establish different teacher profiles, performed with SPSS version 19. With this technique objects are grouped or clustered into subgroups of objects that resemble each other more than they resemble other objects outside these subgroups. To identify profiles of teachers with different conceptions of learning and teaching, we used a K-means cluster analysis based on the three scales. In the clustering we tried fitting 2-cluster, 3-cluster, 4-cluster, 5-cluster and 6-cluster solutions according to the methods described for cluster analysis , 27. As Subsequently, associations were explored between each teacher profile and each of the demographic and occupational characteristics of the teachers. A Chi-square test was used to assess statistical significance of the association, and p-values < 0.05 were considered significant.The response rate of the COLT was 49.4%, since 319 of the 646 teachers filled in the questionnaire . Responders and non-responders were comparable on gender and discipline, both for the whole group and for the two medical schools separately.In the cluster analysis, the five-cluster solution fitted the data best, based on meaningful differences and the distribution of teachers. We named the five teacher profiles ‘Transmitters’ , ‘Organizers’ , ‘Intermediates’ , ‘Facilitators’ and ‘Conceptual Change Agents’. Table We decided to choose the scale ‘teacher centredness’ for ordering the five profiles, what resulted in a linear decrease in scores from the teacher profile Transmitters to the teacher profile Conceptual Change Agents. Because the three COLT scales are independent we did not expect a linear increase in the mean scores of the COLT scales ‘appreciation of active learning’ and ‘orientation to professional practice’. This was confirmed, due to a dip in mean scores for the ‘Facilitators’ profile .The teacher profiles ‘Transmitters’ and ‘Organizers’ can both be described as teacher-centred or more traditional, the ‘Intermediates’ have high scores on all scales and the ‘Facilitators’ and ‘Conceptual Change Agents’ are both low on ‘teacher centredness’ and high on ‘appreciation of active learning’.‘Transmitters’ was the teacher type with the smallest number (N = 19) of teachers, comprising more teachers from Amsterdam (68.4%) than from Maastricht (31.6%). A metaphor corresponding to this teacher type is ‘the sage on the stage’ . Most teAs a validation procedure, we conducted a split half cross-validation procedure. This resulted in Cohen’s kappa of 0.067 and 0.033 , which have to be interpreted as small. To explore the reason for this, we inspected a plot of the data, which revealed an overlap between the five clusters.We also examined the cluster analysis for each medical school separately, followed by a split half cross-validation procedure for each medical school. This resulted in a five-cluster solution for Amsterdam and a two-cluster solution for Maastricht. For Amsterdam, the five clusters were comparable to the five profiles described before, whereas for Maastricht one cluster resembled the Transmitter profile and the other resembled the Conceptual Change Agents profile. The split half cross-validation performed for each medical school resulted in Cohen’s kappa of 0.253 and 0.254 for Amsterdam (both p = 0.000) and 0.253 and 0.359 for Maastricht (with p = 0.002 and 0.000 respectively). These kappa’s should be interpreted as small.Next, we examined the five teacher profiles more closely by calculating Chi squares. The teacher profiles differed significantly in background and occupational characteristics, as is shown in Tables Furthermore, teachers who combined the delivery of education with educational management, development and/or research were distributed differently over the five profiles than those involved only in the delivery of education (p < 0.000). If teachers combined the delivery of education with educational management, development or research, they were more often found in the profiles ‘Facilitators’ or ‘Conceptual Change Agents’. Finally, teachers conducting  only lecOur first research question was whether we could identify teacher profiles in student-centred medical education, based on their conceptions of learning and teaching as measured with the COLT . We hypothesized that information on teacher profiles might be interesting as feedback for individual teachers, for faculty development activities, and for institutes involved in a curriculum reform.A cluster analysis resulted in five teacher profiles, which were named ‘Transmitters’ , ‘Organizers’ , ‘Intermediates’ , ‘Facilitators’ and ‘Conceptual Change Agents’. Teachers with the profile ‘Transmitters’ have a preference for teacher-centred education, while ‘Facilitators’ and ‘Conceptual Change Agents’ prefer student-centred education formats. Teachers clustered in the profile ‘Intermediates’ demonstrate conceptions that fit in teacher-centred education as well as in student-centred education.We chose to arrange the five profiles in the order of scores of the ‘teacher centredness’ scale, thus representing a linear decrease in scores from the teacher profile ‘Transmitters’ to the teacher profile ‘Conceptual Change Agents’. Beforehand we hypothesized not to find a linear increase (or decrease) in the other COLT scales, because these are independent. This was confirmed, mainly due to a dip in mean scores for the ‘Facilitators’ profile .Apparently there is a substantial group of teachers, the ‘Facilitators’ , with a relatively low score on the COLT scale ‘teacher centredness’ combined with moderate scores on ‘appreciation of active learning’ and ‘orientation to professional practice’. An explanation for this might be that teachers with this profile are lower in ‘appreciation of active learning’ and ‘orientation to professional practice’ because of their background and occupational variables. As presented in Table We think that the ‘Intermediates’ and the ‘Facilitators’ profiles must be seen as transitional teacher types, which would imply that there is a development in teachers’ conceptions from ‘Transmitters’ towards ‘Conceptual Change Agents’ , as was suggested by Kember  and by PAnother explanation might be that the somewhat striking scores of the profile Facilitators are related to our population, possibly it is not heterogeneous enough. Replication of study design in a larger scale sample with more medical schools might give more clarity.Our second research question was how these teacher profiles were associated with other teacher characteristics. We found significant differences between the five teacher profiles in gender, hours spent on educational tasks, educational role  and type of educational tasks .An interesting finding is that a greater involvement in education – by participation in educational management, in educational development initiatives and/or participating in educational research activities – is associated with more teachers with the profiles ‘Facilitators’ and ‘Conceptual Change Agents’. An explanation might be that especially teachers with these profiles are interested in these fields, or that participating in these fields stimulated a change in teachers’ conceptions. This will have to be investigated further.Furthermore, the overall distribution of the profiles over the medical schools differed significantly. Maastricht had more teachers with the profile ‘Conceptual Change Agents’ than Amsterdam. The most logical explanation for this is the longer exposure to student-centred education in Maastricht compared to Amsterdam, but future research will have to confirm this. Another explanation might be that the teachers in Maastricht who did not want to engage in this type of teaching, opted out of teaching or went elsewhere. Since the curriculum in Amsterdam involves more guidance and direction from staff, it might have resulted in more corresponding profiles of teachers, i.e. more ‘Organizers’ and ‘Intermediates’ than ‘Conceptual Change Agents’.approaches to teaching, the ATI [perspectives on teaching, thus combining beliefs, intentions, and actions of teachers. In contrast, we specifically focused on student-centred medical education and we used a new, validated questionnaire aimed at conceptions of teachers, COLT, in a large scale quantitative approach [Categorizations of teachers have been reported before, but those studies were performed in traditional curricula with a key role for lectures , 21–23.  the ATI  or on a  the ATI , 23. Praapproach .Below we discuss some practical implications which teacher profiles might have. We focus on the use of teacher profiles for individual teachers, for faculty development activities, and for institutes in a curriculum change.The results of the COLT questionnaire provide teachers with information about their own teacher profile. We suppose that this feedback with a written description of the profile will be more meaningful than numerical scores on the three COLT scales. We expect that getting informed about one’s conceptions, which were partly unconscious before, will, in combination with reflection, contribute to the further professional development of teachers , 29–31. More attention is needed for teachers’ conceptions of learning and teaching in order to achieve lasting changes in teaching behaviour , 10–12. We assume that if teachers are aware of their conceptions of learning and teaching, this might be a starting point in actually changing their conceptions. Subsequently, they might plan a discussion on the conceptions with a mentor or with peer teachers in a community of practice. For faculty developers, insight into teachers’ conceptions will be helpful in tailoring their activities to the conceptions and needs of teachers.Interestingly, several efforts have been described to change conceptions of teachers, both long-term e.g. one year , 35–37 aIt is important to realize that teaching conceptions and profiles can differ from the teaching approach a teacher demonstrates. Postareff et al. introduced the description ‘consonance or dissonance in the description of teaching’ . For exaInsight into teacher profiles might also have practical implications for institutes. Firstly, if an institute aims for a curricular reform towards more student-centred education, it is advisable to take the organization-wide distribution of teacher profiles into account, since this may be helpful in the choices of implementation strategies and investments. Secondly, the organization-wide overview of teacher profiles is also relevant because institutes and curricula have an impact on teachers’ conceptions, since conceptions are influenced by the perception of the teaching context , 42, 43.This study introduces the profiling of teachers in student-centred education in the medical domain. The profiling is based on a cluster analysis of conceptions of learning and teaching, as measured with a validated and reliable questionnaire, in a large-scale sample of teachers. Some practical implications are discussed.A limitation of our study is that we investigated two institutes with student-centred curricula in the Netherlands. Consequently, our findings cannot readily be generalized to other institutes and other countries. Secondly, the response rate on our electronic questionnaire was low, as 319 of 646 teachers (49.4%) filled in the questionnaire. However, responders and non-responders were comparable on gender and discipline, both for the whole group and for the two medical institutes separately. Thirdly, the validation of the cluster-analysis was somewhat disappointing, although the five-cluster solution was appropriate with respect to meaning and distribution. Presumably, a larger scale sample from more medical schools is needed to validate the five-cluster solution. Another explanation might be that the cluster-analysis technique is inappropriate to discriminate properly between the teacher profiles. This might imply that qualitative research methods are better equipped to capture reality.We recommend in-depth interviews with teachers about their conceptions of learning and teaching and their perception of the teaching environment. In a longitudinal design, repeated measures combined with interviews might enable to study how static the teachers profiles are. Also, it might be interesting to compare several medical schools which are involved in a curriculum reform towards student-centred curricula. This might yield extra information on the validity of the COLT and the five teacher profiles. We recommend further research on the relation between teachers’ conceptions of learning and teaching and their actual teaching practices.These studies might offer further insight into teachers’ conceptions of learning and teaching in student-centred curricula, including a sound theoretical model and practical implications. In line with Bleakly , we thinJohanna CG Jacobs, MD, MSc is a PhD-student and a staff member involved in Faculty Development at VUmc School of Medical Sciences, Amsterdam. She is also affiliated to LEARN! Research Institute for Learning and Education, VU University, Amsterdam.Scheltus J van Luijk, MD, PhD, is an Assistant Professor in the department of Resident Education of Maastricht University Medical Centre +, Maastricht.Francisca Galindo-Garre, PhD, is a Statistician in the Department of Biostatistics, VU University Medical Centre, Amsterdam.Arno MM Muijtjens, PhD, is an Assistant Professor, Statistician and Methodologist in the Department of Educational Research and Development at the Faculty of Health, Medicine, and Life Sciences at Maastricht University, Maastricht.Cees PM van der Vleuten, PhD, is a professor of Education, Chair of the Department of Educational Development and Research, and Scientific Director of the School of Health Professions Education (SHE) at Maastricht University, Maastricht.Gerda Croiset, MD, PhD is a professor of Medical Education at the Vrije Universiteit Amsterdam, Director of VUmc School of Medical Sciences Amsterdam, and also affiliated to LEARN! Research Institute for Learning and Education, VU University, Amsterdam.Fedde Scheele, MD, PhD, is a professor of Medical Education at the Vrije Universiteit Amsterdam and a gynaecologist at St. Lucas Andreas Hospital, Amsterdam.