Moving from Daji towards Noma: Changing the perception of a spiritual towards a treatable disease -A case study of Hilfsaktion Noma e.V. in Niger-
Shauni Denise De Vriese
Supervisor: Dr. Sabina Hadžibulić, Stockholm University
Master’s Thesis 15 credits Department of Theology Uppsala University Spring Semester of 2021
Date of Submission: 2021-05-27
This thesis is submitted for obtaining the Master’s Degree in International Humanitarian Action and Conflict. By submitting the thesis, the author certifies that the text is from his/her hand, does not include the work of someone else unless clearly indicated, and that the thesis has been produced in accordance with proper academic practices.
ABSTRACT Noma is a neglected non-contagious disease of the face and mouth affecting children living in extreme poverty. Due to the quick spread of the disease, the mortality rate is estimated at 90% when treatment is not started within two weeks of onset. Even though Hilfsaktion Noma e.V. (HAN) has been actively spreading awareness about the disease and offering treatment and reconstructive surgery, the mortality rate has not decreased. Moreover, patients reaching the noma centre often present severe sequela, affecting their speech, eating and drinking ability. Therefore, this study investigates the challenges faced by noma patients to seek medical care in Niger and how to overcome them. A mixed-method approach was performed; a survey among healthcare workers of HAN was supplemented with an interview with a key informant of the organisation in order to get a wider understanding of the possible challenges noma patients encounter. Accessibility to healthcare, as well as distance to the hospital and lack of transportation means were identified as the challenges with the highest impact on the health-seeking behaviour of noma patients. The lack of knowledge about noma and treatment costs were the second main challenge. This information gap is reflected in stigmatization, inadequate health care staff and seeking aid from traditional healers, which seriously endangers the life of patients. To overcome these challenges, a community-based surveillance system in combination with a multisectoral approach was proposed. This low- cost system can not only eliminate noma by facilitating the early detection of noma patients, but it can also contribute to sustainable health in Niger and other countries in the Noma belt.
Keywords: Noma, impediments to healthcare, social cognitive theory, access to healthcare, community-based surveillance system, Hilfsaktion Noma e.V., Niger
Table of Contents
1. INTRODUCTION 1 1.1. BACKGROUND 1 1.2. RESEARCH GOALS AND QUESTIONS 3 1.3. PREVIOUS RESEARCH 3 1.4. RESEARCH RELEVANCE 5 1.5. LIMITATIONS 6 1.6. THESIS OUTLINE 6 2. CONCEPTUAL FRAMEWORK 8
2.1. SOCIAL COGNITIVE THEORY 8 2.2. THEORY OF ACCESS 10 3. METHOD 13 3.1. METHOD CHOICE 13 3.2. SAMPLE 13 3.3. RESEARCH FLOW 14 3.4. ETHICAL CONSIDERATIONS 15 3.5. ASSESSMENT CRITERIA 16 4. CONNECTING NOMA TO NIGER 18 5. ANALYSIS 21 5.1. CHANGING BELIEFS THROUGH AWARENESS ACTIVITIES 21 5.2. OUTCOME EXPECTATIONS AS DETERRENTS 22 5.2.1. Stigmatization of noma patients 23 5.2.2. Affordability 24 5.2.3. The social influence of traditional healers 24 5.3. SOCIO-STRUCTURAL FACTORS ACTING AS IMPEDIMENTS 26 5.3.1. Accessibility 26 5.3.2. Availability 27 5.3.3. Insecurity 28 5.4. THE WAY FORWARD: A MULTISECTORAL AND COMMUNITY-BASED SURVEILLANCE 28 5.4.1. The community-based surveillance 28 5.4.2. The multisectoral approach 30 6. DISCUSSION 32 REFERENCES 34 APPENDIX 1: INTERVIEW GUIDE 40 APPENDIX 2: SURVEY QUESTIONS IN ENGLISH 42 APPENDIX 3: SURVEY QUESTIONS IN FRENCH 49
1. Introduction
1.1. Background
Noma or Cancrum Oris is a non-contagious orofacial gangrenous disease with a mortality rate as high as 90%, mainly affecting children between 2-7 years old living in extreme poverty (Bello et al. 2019; Srour, Marck and Baratti-Mayer 2017; WHO Regional Office for Africa 2019). The WHO estimates the incidence of 140,000 new cases each year (Bourgeois and Leclercq 1999), whereas Fieger (2003) estimated the incidence at 30,000-40,000. The significant disparity between the two is because they are based on extrapolations from medical directors and the cleft-lip incidence in Africa (The International Society for Neglected Tropical Diseases 2021). Exact epidemiological data still lacks and is one of the causes that the WHO does not define noma as a neglected tropical disease (Caulfield and Alfvén 2020). However, researchers have labelled noma as a neglected tropical disease (Srour and Baratti-Mayer 2020).
Although noma is also present in Latin-America and Asia, 75% of all cases occur in the Noma belt, stretching from Mauritania to Ethiopia (Bello et al. 2019). The disease starts as an infection of the gums and rapidly spreads to the face, destroying tissue and bone after only 5-10 days of onset (Bello et al. 2019; Médecins Sans Frontières 2021; Srour, Marck and Baratti-Mayer 2017). Yet, when antibiotics, hydration, wound dressing, nutritional support and treatment of underlying illnesses are given within the first two weeks of onset, the mortality rate decreases to 10-15% (Srour, Marck and Baratti-Mayer 2017; WHO Regional Office for Africa 2019). Moreover, if the treatment is not started in the first days of the disease, the patient will be left with sequela, leaving holes in the face, destroying the mouth, nose and eye cask (Médecins Sans Frontières 2021). In this stage, surgical treatment is not only necessary to improve breathing, eating and drinking (Srour, Marck and Baratti-Mayer 2017), it also leads to the reintroduction of the children in society (Srour et al. 2008). Sequela, thus, not only scars the face but also the lives of children due to stigmatization leading to constant hiding (Farley et al. 2020; Srour et al. 2008; The International Society for Neglected
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Tropical Diseases 2021). Besides, due to the belief that noma is a contagious disease, the children are forced to withdraw from school, resulting in developmental delays (Bello et al. 2019; The International Society for Neglected Tropical Diseases 2021). Therefore, the disability-adjusted life years of noma have been estimated at one to ten million years, showing the significant burden of the disease on the patient (Srour, Marck and Baratti-Mayer 2017).
Moreover, stigmatization makes it more difficult to reach patients during awareness activities and makes the estimation of the incidence of noma complex (The International Society for Neglected Tropical Diseases 2021). Additionally, non-governmental organisations (NGOs), such as Doctors without borders and Hilfsaktion Noma e.V.1, have been keeping statistics on the incidence of noma in the area they are active to close this gap of knowledge (Hilfsaktion Noma e.V., n.d.; Médecins Sans Frontières 2021). Due to the high prevalence in the Noma belt and devastating effects of noma, many NGOs also implemented awareness campaigns. Informing communities about the manifestation and the risks of the disease may reduce the mortality rate by stimulating parents to seek help in specialized facilities.
Yet, recent research has estimated the referral rate at one in three patients (Bello et al. 2019), which was previously one in five patients. Besides, most patients reaching the hospital have passed the acute phase of the disease, leaving them with sequela (WHO Oral Health Unit 1998). This raises questions on why the referral rates have not gone up after 25 years of raising awareness on noma in Niger by HAN and how we still allow this disease to destroy the faces and lives of young children. Consequently, it is of great importance to identify and gain knowledge about the problems that withhold the effect of the awareness activities on civilians. Increasing our knowledge will improve our understanding of the problems and allow us to adapt the current strategies to eliminate this disease once and for all. Therefore, this thesis will qualitatively and quantitatively investigate what the problems are during the disease awareness activities of HAN in Niger and how we can overcome them to decrease the mortality rate of noma by interviewing and surveying staff members of HAN.
1 Throughout the thesis, the abbreviation for the Hilfsaktion Noma e.V. will be used, namely HAN. 2
1.2. Research goals and questions
The overall purpose of this research is to increase knowledge about noma disease awareness activities. More specifically, it aims to understand why referral rates have not increased after several years of awareness activities. Since problems related to disease awareness may be country-specific, only the case of Niger will be investigated. Therefore, the research questions are: I. What are the challenges faced in the activities to increase the disease awareness of noma performed by the Hilfsaktion Noma e.V. in Niger? II. What are the strategies to overcome these challenges according to the social cognitive theory and the concept of access?
1.3. Previous research
Due to the lack of previous research on noma awareness activities, the obstacles encountered in awareness activities on Buruli ulcer and Guinea worm disease were reviewed. These neglected tropical diseases occur in similar environmental situations, such as poverty and the lack of clean water, and thus, can have similar problems. Therefore, knowledge of existing challenges and their possible approaches to overcome them can help identify why the efforts of HAN and other organizations have not reduced the prevalence of noma and its devastating effects.
Researchers argue that one of the main issues deterring patients from going to a hospital is their belief of the disease (Akoachere, Nsai and Ndip 2016; Ciantia, Odong and Oyoo-Odoch 2013, Farley, 2020). The case of Buruli ulcer and Guinea worm disease have demonstrated that some West-Africans believe that sorcery is the cause of these diseases. Which implies that they can only be healed through prayer rather than medical treatment (Akoachere, Nsai and Ndip 2016; Ciantia, Odong and Oyoo-Odoch 2013). More recently, Farley (2020) discovered that many Nigerians believe that spirits or Jinn’s cause noma, which might explain why 30% of the patients in the hospital first sought care with traditional healers (Farley, et al. 2019). Whereas this rate is up to 40% in Niger (Baratti-Mayer et al. 2019), demonstrating the importance of health education and collaboration with traditional healers. 3
Previous research also focused on disease education and the importance of the delivery of the information. Akoachere et al. (2016) demonstrated that the level of understanding of the disease was influenced by socio-demographic factors of the recipients such as age, religion and the occupation of the persons in the area. Additionally, the successful Guinea worms education program in Uganda proved the effectiveness of interactive information sessions led by village volunteers that adapt the conversations to the current knowledge of the recipients. The information sessions were closed with a discussion on prevention strategies, giving insight on how certain interventions will be perceived and how to improve them before the execution (Ciantia, Odong and Oyoo-Odoch 2013). Furthermore, the benefits of using village volunteers or teachers for promoting as well as implementing preventative behaviour has been discussed by Ackumey et al. (2011), Ciantia et al. (2013), Brieger et al. (1992) and Cairncross (1996). The medical and local knowledge of the village volunteers has also been of significant value in many other health campaigns, such as malaria and diarrhoea (Brieger and Kendall 1992).
Moreover, the patient's socio-economic background is connected with the severity of the disease when they seek medical aid. Patients with a low income or education postpone visiting a doctor till it is unavoidable (Ciantia, Odong, & Oyoo-Odoch 2013; Ahorlu et al. 2013; Ackumey et al. 2011). Patients with Buruli ulcers tend to seek medical attention only when Buruli ulcer sequela occurs, similar to noma's medical seeking behaviour. However, Ahorlu (2013) revealed by interviewing Buruli ulcer patients that minor changes to the program, such as reimbursement of costs and chargeless breakfast, can increase referral rates and decrease treatment discontinuation.
Although research on the impediments faced during Buruli ulcer and Guinea worm disease is a sufficient basis for this research, the difference between these diseases and noma are significant. The fast spread, the high mortality rate and the urgency of starting the treatment within two weeks of onset do not apply to Buruli ulcer nor Guinea worm disease. Therefore,
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the scope of challenges may differ from other diseases and some problems may even be specific for noma.
1.4. Research relevance
The relevance of the study can be connected to the neglect of noma and hence little research on the disease. Moreover, the majority of the available research only focuses on biomedical and not the prevention part. Therefore, investigating and identifying the challenges faced during HAN's activities on noma contributes to new and indispensable knowledge, which may help optimize the efficacy of not only HAN but also other organizations working on noma.
Secondly, with this new knowledge, we can improve the activities on noma as well as other diseases, and health campaigns, to effectively reach and help more people. Moreover, the research may shed light on more general impediments on obtaining medical aid in the country. Therefore, this study also contributes to the question of how to optimize access to healthcare in Niger.
Moreover, the high mortality rate of noma already stresses the urgency of the matter. The disease has been known for more than a thousand years and has taken too many lives. By optimizing the activities, both a lower mortality rate and earlier detection can be achieved. This may halt the destructive effect of noma on children's faces and improve the impaired quality of life of the disease. Additionally, effectively disseminating knowledge about the disease may decrease prejudices towards noma patients. This would alleviate the psychological and developmental consequences of the disease by giving noma patients their lives back.
Lastly, due to its neglect, knowledge about noma is scarce among humanitarian workers. Through this work, humanitarian workers can increase their understanding of the disease and perhaps recognize it in areas of extreme poverty and save a child’s life. By spreading as much information as possible on the disease, noma can be finally eliminated and truly be forgotten.
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1.5. Limitations
One of the limitations of the thesis is connected to the used method. Although semi-structured interviews are known to be a better approach to obtain in-depth knowledge, due to weak internet connections, language barriers and time schedules, only one interview through mail could be performed. This created the risk that not all problems are represented because some challenges are time- or case-specific. However, in order to broaden the perspective, a qualitative and quantitative survey was conducted among the health care workers of HAN in Niger. Unfortunately, it was not possible to include other professions in the organisation, such as social workers, employees active in the children’s home, etc.
Secondly, interviewing persons who refuse noma treatment or who do not participate in the activities would provide a more complete understanding of the impediments and how to overcome them. Yet, due to difficulties in reaching them within the time frame of the thesis, no individuals outside the organization were included. Consequently, the analysis is solely based on HAN's position and not that of the people of Niger.
Besides, since the challenges may be connected to the organization itself, the type of activities, the country and the relation between the organization and local inhabitants, I opted to limit the analysis to only HAN and their activities in Niger, where the organisation was first active. Consequently, this analysis may not include problems encountered by other organizations or in other countries.
1.6. Thesis outline
In the first chapter, a background of the subject with the research goals and questions is presented. It also contains an overview of the literature, and points out the relevance as well as limitations of this work. The second part, the conceptual framework will explain the social cognitive theory and the concept of access, which will be implemented throughout the work. The method of this research is described in part three with the inclusion of ethical consideration and assessment criteria. In the fourth chapter, the high prevalence of noma in Niger by examining the risk factors in the country is discussed. The fifth chapter is the 6
analysis, which links the challenges and their strategies to overcome them to the theories. Finally, the last chapter summarizes the findings and suggests possible improvements for the future.
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2. Conceptual framework
In the field of health promotion, there are two main approaches, namely, the structuralist and individualist approach. Whereas the latter discusses that a person has full control over their health, the first one argues that ecological factors; such as social, economic, political and environmental factors, have an important control over a person’s health (Korin 2016). Research has demonstrated that effective health awareness programs should focus on the external factors that make persons prone to the disease (Bandura 2004; Korin 2016). Therefore, this work will use a structuralist approach by implementing the social cognitive theory and the concept of access.
2.1. Social Cognitive Theory
The social cognitive theory is one of the few theories that discuss the dynamics of individual and external determinants and address how change can be promoted (Korin 2016). Bandura stresses the constant interaction between one’s behaviour, personal determinants and the environment, also known as reciprocal determinism (Korin 2016). The theory, applied to health promotion, explains how to change and maintain certain health behaviour, and consists of five main factors. These are knowledge, self-efficacy, outcome expectations, socio- structural factors and the formation of a goal (Bandura 2004; Luszczynska and Schwarzer 2005). An overview of their interaction can be seen in Figure 1.
Firstly, without having information on health risks and health benefits, no change in behaviour will occur. Therefore, knowledge is the most important factor to alter a person's health behaviour (Bandura 2004). Secondly, goals that guide the person to the desired health behaviour should be formed (Luszczynska and Schwarzer 2005). The word goals also include the strategies that a person sets out to reach their health objectives (Bandura 2004). A third determinant is outcome expectations, their views on the possible consequences of their action. This factor is further subdivided into a physical, social and self-evaluative part (Bandura 2004). The first part is the anticipated effect of the behaviour on your body, mental health and materials, e.g. financial costs. How people perceive your action falls under social expectations. Whereas the third set of outcomes, self-evaluative, represent how the person 8
itself experiences the behaviour. Does the behaviour contribute to self-satisfaction? If not, the person will not reproduce the behaviour (Bandura 2004). As a result, outcome expectations can change behaviour directly, as well as indirectly, since a person will only set an aim when a person expects a positive outcome from the behaviour (Luszczynska and Schwarzer 2005). This indicates the importance of outcome expectations in the initial phase of altering one’s behaviour (Luszczynska and Schwarzer 2005). Fourthly, socio-structural factors can act as facilitators or impediments. It can include health services, political and economic situations and the environment (Luszczynska and Schwarzer 2005).
Finally, perceived self-efficacy represents how much a person believes he/she is capable of achieving a specific objective through their own action (Bandura 2004; Korin 2016). Self- efficacy affects someone’s behaviour both directly and indirectly through outcome expectations, goals and socio-structural factors (Bandura 2004). For example, people with a high self-efficacy expect a positive outcome of changing their behaviour. Whereas, individuals with low self-efficacy tend not to act because he/she assumes that the means to change their behaviour will not outweigh the expected outcome. Therefore, this group needs external motivation to take action (Bandura 2004). Further, people with high self-efficacy, tend to set higher goals, which are usually not pursued by people with low efficacy, which will also enhance the motivation to reach those challenging goals (Bandura 2004). Besides, believing that one can perform a particular action and being convinced that the outcome will be beneficial, one will be more motivated to act. Hence, self-efficacy also influences one’s motivation through outcome expectations (Bandura 1999).
Changing one’s behaviour always has obstacles. Therefore, one needs to believe that they can overcome those impediments to achieve their goal (Bandura 1999). People with high self-efficacy are eager to face difficulties and strive to overcome them, whereas low-efficacy people tend to give up as they assume that their effort will be in vain (Bandura 2004). Self- efficacy forms, thus, a central part of changing someone’s health behaviour. Improving self- efficacy can be accomplished through (I) mastering the action, (II) having a model person that motivates and enforce the behaviour, (III) verbal persuasion and (IV) the ability to
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control one’s emotion to suppress fear in a threatening situation (Bandura 2004; Luszczynska and Schwarzer 2005).
In order to understand how social cognitive theory can be applied, an example about increasing children's hygiene will be used. To start with, one has to focus on knowledge and increasing the self-efficacy of children by informing them about health benefits and risks, e.g. washing hands before eating decreases the risk of having stomach pain and diarrhea. Secondly, it includes implementation of a goal and a strategy by developing social and self- management skills. A widely used goal is disease prevention, but a more specific one for the children could be "I will always wash my hands before eating". The third component focuses on resilience and overcoming impediments. In terms of hand washing, it would ensure the presence of soap. The last component is creating social support, e.g. rewarding the children for washing their hands before eating. Moreover, this will also lead to a spread of behaviour among children as positively experienced by others (teachers, parents).
2.2. Theory of access
The concept of access will further elaborate on socio-structural factors from the previous theory (Figure 1). It explains whether or not a person will consult the health services by comparing the characteristics of the health services with those of the patients, the 'degree of fit’ as Penchansky and Thomas (1981) described.
The initial concept of access only included availability, which implicates the adequate supply of health services where the volume and type of services should match the patient needs (Penchansky and Thomas 1981). Possible indicators for availability are: the number of adequate doctors, the number of hospital beds, the existence of specialized health programs or the costs of the service (Gulliford et al. 2002; Penchansky and Thomas 1981). However, available health care services do not necessarily mean that a person will use them (Gulliford et al. 2002). Therefore, Penchansky and Thomas expanded the theory by incorporating accessibility, accommodation, affordability and acceptability.
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The geographics of where the health service is available for the person can be defined as accessibility. People are more prone to go to facilities that are nearby. The further away, the more people are discouraged from going because of rising travel costs and travel time and losing more time from work (Penchansky and Thomas 1981). Besides, accommodation is the manner in which health services are organised to treat patients in relation to how the patients perceive them as appropriate. It also includes whether the patient is capable of adapting to these settings (Penchansky and Thomas 1981). The ability of a person to get immediate care or the use of an appointment system, the length of waiting-lists and the opening hours of the facilities all fall under accommodation (Levesque, Harris and Russel 2013; Penchansky and Thomas 1981). Accommodation can be affected by availability. For instance, when there are many patients in the facility, doctors will change their system to treat according to priority instead of appointment (Penchansky and Thomas 1981). Besides accommodation, also accessibility is strongly correlated with availability (Penchansky and Thomas 1981). When health care services are not available in a certain area, the patient has to travel further, possibly hindering the health-seeking behaviour.
Affordability is the third dimension. It represents the relation between the cost of the service and the patients’ ability to pay, as well as their belief that the outcome exceeds the cost (Penchansky and Thomas 1981). Costs also include the loss of income of the person due to the loss of working hours (Gulliford et al. 2002). In addition, the existence and the price of health insurances also fall underneath this factor (Penchansky and Thomas 1981). At last, the most important factor, according to Penchansky (1981), is to explain where people seek health care, namely, acceptability. It is the ability of health care providers and patients to accept the social and cultural characteristics of each other (Penchansky and Thomas 1981). For example, in some countries, it is unacceptable that a man performs a female physical exam (Levesque, Harris and Russel 2013). However, time can increase the patient's acceptability towards a provider (Penchansky and Thomas 1981)
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Figure 1: Schematic representation of the social cognitive theory with the integration of the concept of access. Based on the figure of Bandura (2004) and information retrieved from Levesque, Harris & Russell (2013).
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3. Method
3.1. Method choice
In order to answer the research questions a mixed-method approach with an exploratory sequential design was implemented. To start with, a quantitative survey in French and English was carried out. It helped obtain a view on the ranking of the challenges and lacking activities. Since a survey offers limited information and lacks space for follow-up questions four open questions were added. These were related to respondents' knowledge of challenges other than those mentioned in the questionnaire, as well as their view on how activities can be improved or added to the strategy of HAN.
In addition, a qualitative approach was implemented by conducting a semi-structured interview, which allowed a deeper and more complete understanding of complex research subjects (Rahman 2017). The flexibility to go deeper on specific subjects emerging from the conversation was needed due to the lack of previous research.
3.2. Sample
As for the survey, respondents had to be employed or volunteer with HAN, understand English or French, and have internet access in order to be recruited. The survey was spread among the health care workers by the two interviewee candidates by email. Seven people filled in the questionnaire and were all employed as health care workers. Two respondents had one to two years of experience, whereas the other respondents had more than two years.
Through a discussion with the Head of Projects, two employees were identified as possible candidates for the interviews. However, due to a tight schedule, one of them could not participate in the study. The interviewee had a good understanding of English and with previous expertise on noma and three years of work experience within HAN, the interviewee knows the current workflow of the organization in Niger and the difficulties of eliminating the disease.
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Although the sample size is small, its relevance can be justified by the size of the NGO. Namely, HAN has 133 employees spread over Niger and Guinea-Bissau. When dividing this number of employees over the different sectors such as management, health care staff, security, household personnel, drivers and teachers, one can see that the size of medical staff does not significantly differ from the actual number of healthcare workers.
3.3. Research flow
The initial method to answer the research questions was to interview six to eight people working in different departments of HAN. During the initial meeting, it became clear that it would be difficult to find enough participants due to language barriers and weak internet connections. Therefore the methodology was changed to interviewing two people and performing a survey among health care, coordinating staff and social and security workers.
The invitations were sent to the two possible candidates for the interview in mid-March. In the meantime, the interview guide was developed based on the current literature on noma and challenges faced during the awareness campaigns of Buruli ulcer and Guinea worm disease, which can be found in Appendix 1. The questions were shared with the participants at their request. After two weeks, it was decided to perform the interviews through email instead of zoom due to time problems to schedule the interview. Reminder emails to increase the chance of cooperation and follow-up questions were sent to the participants for clarification to gain a deeper understanding of the answer.
The response of the Interviewee was received in mid-April. Based on this response and the literature review, a survey was made using Core XM Survey Software (Qualtrics). The survey was developed in English and French to increase the number of respondents. The questions can be found in Appendix 2 and 3, respectively. Before sending out the survey, a meeting between the two interview candidates and the Head of Projects was organised to decide whether a survey would be the best method to proceed or whether more interviews would be more suitable to answer the questions. After the meeting, they agreed to distribute the survey to limit the workload on the employees after an intense two-week surgical intervention. The
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survey was distributed on the 27th of April only among the health care workers due to weak internet connections. The survey was closed on the 5th of May. At the end of April, candidate 2 was unable to answer the question of the interview guide due to the work schedule. Therefore, it was chosen to relocate the candidate to the survey instead of performing the interview. A graphical overview of the research can be seen in figure 2.
Figure 2: Graphical overview of the research flow.
3.4. Ethical considerations
Interviewees received an informed consent form with their rights and the purpose of the study. Survey respondents had to tick the consent box before the survey began. They were all informed about the purpose of the study, how the data will be used, as well as asked about their voluntary participation and a confirmation that they were over 18 years old. Approval to interview and distribute the survey among staff and volunteers of HAN was obtained from HAN's Head of Projects. Additionally, the data collection was in accordance with the EU General Data Protection Regulation (GDPR) and the Supplementary Act on
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Personal Data Protection of the Economic Community of West African States. Only necessary data was collected and all data was handled anonymously. Participants were referred to as a respondent and Interviewee throughout the analysis. Names and data that could identify the participant of the interview were saved in an encrypted document on an offline storage place and the survey was designed not to save the IP-addresses of the participants.
3.5. Assessment criteria
To assure the quality of the study, the four criteria of Guba, namely credibility, transferability, dependability, and confirmability were applied. Although there are other criteria to validate the research, these criteria are widely accepted by qualitative researchers and correspond with the positivism research (Shenton 2004).
Credibility or the plausibility of the results was ensured through prolonged engagement with the interviewee by sending follow-up questions. This resulted in more in-depth responses and richer data, as reported by Korstjens and Moser (2018). Only open-ended neutral questions were posed during the interview to ensure more truthful and open responses, which reduced acquiescence bias, the risk that participants feel forced to give the ‘correct’ answer (Kallio et al. 2016; Shenton 2004). Moreover, to verify the findings, the data was connected back to the theoretical framework and previous studies, as Stenfors, Kajamaa and Bennett (2020) recommend. This not only enhances credibility by demonstrating the degree of similarity, but also improves the overall quality of the research (Shenton 2004).
Through a detailed description of the method, transferability, the degree of extrapolating the findings in other settings (Cho and Trent 2014; Shenton 2004) and dependability or reliability of the study were implemented. The latter was further improved by addressing the challenges faced during the data collection and the decisions to overcome them, increasing the likelihood that similar findings would be observed during replication of the study. Describing the challenges also contributed to the justification of the used method, which enhanced the credibility of the study, even though it was not the most suitable approach.
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Confirmability, the objective interpretation of the data, was achieved through discussing the study limitations and their impact (Korstjens and Moser 2018), and supporting the findings with quotes from the interview and survey. Lastly, investigator bias was minimized through method triangulation, which enhanced the objectivity of the study.
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4. Connecting noma to Niger Niger is an interlocked country in the West of Africa, situated in the Sahel region. Due to climate change and security threats, poverty affects 41% of the Nigerien population and 51% in the rural parts of the country (Harsch 2017; World Bank 2020). Poverty in Niger results in a lack of food, clean water and access to medical care which are all risk factors for the development of noma. Therefore, it is estimated that noma affects 14 per 100,000 or 3,400 persons in Niger every year (Hilfsaktion Noma e.V., sd).
Firstly, like all countries situated in the Sahel, Niger struggles with growing sufficient amounts of food. Due to rain-fed agriculture, the annual harvest quantities fluctuate significantly (Ayenigbara 2013; World Bank 2019). Additionally, food production has been decreasing due to the lack of access to improved machines, climate change and the move of many young people to urban regions, straining the agricultural labour force (Ayenigbara 2013). As a result, Niger has encountered multiple food crises and a chronic food emergency has got a hold of several regions, such as the Zinder region and the South of Maradi (Blackwell, Augier and Sayadi 2010).
Moreover, attitudes towards the distribution of food in the family may also explain the high rate of undernutrition of children in the Sahel region (Ayenigbare 2013). The family hierarchy decides what food one can eat, where the head of the family, usually a man, receives the most nutritious food, such as meat (Ayenigbare 2013). While the youngest children receive a watery pap, which has been correlated to the development of noma due to its lack of nutritional support in combination with the high levels of bacteria found in the pap (Farley et al. 2018). Because of the lack of clean water and the practise of open defecation, food is prepared under unsanitary conditions, explaining the bacterial contamination of it. The polluted water also allows the quick transmission of multiple diseases such as diarrhoea and cholera, impeding children from maintaining their caloric balance due to the quick transmission of multiple diseases in the water (Ayenigbare 2013). The loss of vitamins, minerals, and proteins weakens the immune system, leaving the children more susceptible to noma (Baratti-Mayer et al. 2017; WHO 2019; WHO Regional Office for Africa 2019).
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Additionally, the conviction that the number of children a family has represents wealth and power (Leithead 2017) impairs the nutritional status of children in Niger. With a fertility rate of 7.6 children per woman, pregnancies follow quickly on each other, leaving mothers at a higher risk to develop maternal malnutrition and anaemia. As a result, children are prone to undernutrition due to their low birth weight (Baratti-Mayer et al. 2013; Rahmati et al. 2020). In addition, the short time between pregnancies also leads to non-exclusive breastfeeding of the children, which has been known to be a risk factor for noma (Baratti-Mayer et al. 2017).
The high fertility rate is also causing difficulties in providing health care, education and jobs for the entire population of Niger (Leithead 2017). The accessibility of the health care centres in the country is low. Almost 60% of the population has to walk for more than one hour to seek medical help. These conditions only worsen in the rainy season, where people in some rural parts of Niger have to walk for 4 to 12 hours (Blanford et al. 2012).
Though oral health, together with a balanced diet, is crucial for the prevention of noma, it is usually excluded from health policies of Sub-Saharan countries (Danfillo 2009). Due to the scarce amount of dentists in the country (WHO 2008), rural parts of Niger do not have access, whereas, in urban areas, oral health is accessible but unaffordable (Ministry of Public Health and National non-communicable disease control programme 2012). Therefore, dental health care can be perceived as a privilege in Niger. Moreover, the use of a toothbrush, toothpaste and mouthwashes are usually unknown for the population (Van Damme 2006). Instead, sand, coal or other abrasive products are used to clean the teeth, wounding the gingiva (Baratti- Mayer et al. 2017). These wounds quickly evolve to acute necrotising gingivitis, which is the first stage of noma, when they are not treated (Baratti-Mayer et al. 2017; WHO Regional Office for Africa and NCD regional Programme for noma control 2016).
While poverty is a causal factor, ignorance and beliefs about noma exacerbate the consequences of the disease. Noma is often perceived as a contagious disease caused by spirits and therefore treated by traditional healers, which often aggravate the lesions (Farley
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et al. 2019). In Niger, 40% of the noma patients who seek professional medical care, first consulted a traditional healer (Baratti-Mayer et al. 2019), which are, according to Farley et al. (2019), more accessible, affordable and more trusted than hospitals. Although many traditional healers do not have knowledge about noma, they still try to heal it with herbal and plant therapies or by piercing the skin, which is greatly discouraged (Farley et al. 2019). Although these remedies may help with other diseases, noma patients need antibiotics as soon as possible to stop the spread of bacterial infection (Baratti-Mayer et al. 2019).
Conclusively, Niger is connected with noma through many paths. Although the main causative factor of noma, namely poverty, has been decreasing in the country, Niger still has a long way to go to combat malnutrition and improve the access to (oral) health care to eliminate noma. In the meantime, by informing and changing the perception towards noma, the severity of the disease can be decreased so that no child has to bear the marks of noma again.
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5. Analysis
5.1. Changing beliefs through awareness activities
One of the main activities of HAN is advocacy to change the belief of the disease and increase awareness. By changing the perception about noma, it is likely to change their behaviour towards the disease, such as the health-seeking behaviour but also social rejection. Indeed, according to the social cognitive theory, knowledge is a fundamental component to change the behaviour of a person. According to the respondents, the lack of knowledge on noma among the general population significantly affects the health-seeking behaviour of noma with an impact of 8.3 out of 10. Many Nigeriens believe that noma is caused by spirits, as stated by the interviewee: ‘People think and believe that it is a disease caused by evil spirits, spells cast on the family and falling on the child within the family’. This conviction reflects itself in the name Nigeriens give to the disease, namely Kockobho, Tchizal, Hakkum and Daji which all relate to the evil spirits in the local language, according to the interviewee. Yet, this mystical belief endangers the life of the patients by seeking the help of traditional healers and delaying access to medical care as demonstrated in the following quote of a respondent: ‘Noma is considered a curse, and therefore, cases first receive traditional treatment before coming to health facilities’.
Consequently, the advocacy activities are organised in such a manner that they target different actors of society, such as pregnant women, women with infants, noma patients, traditional healers, religious leaders, as well as political leaders. Recruitment for the awareness activities occurs, according to the interviewee, in integrated health centres during prenatal consultation, consultations for infants or vaccination, but also in women’s groups and in the prevention centre where they distribute food rations, food supplements and soap. The sessions focus on the early symptoms, the nature of the disease and the free treatment HAN offers.
Because advocacy activities are a core activity of HAN, the satisfaction with these activities was examined. Surprisingly, the respondents were least satisfied with the advocacy among
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the general population, the religious leaders, traditional healers, and most satisfied with the advocacy among health care workers. The advocacy among the general population was the second activity with the least satisfaction.
Although there were significant variations between the respondents, since some were very satisfied whereas others very dissatisfied with the advocacy activities, the results show that the awareness activities need further improvement. Indeed, when asking what should be changed or further improved, four out of seven respondents specifically mentioned the need for increased awareness among the general population as well as health workers:
The interest in noma is very important and I think we have reached a stage where the care at the centre is very good. Therefore the great challenge that remains to eradicate it [noma] lies in mass awareness. Through good sensitization, we can especially avoid severe forms that lead to serious sequelae (Respondent 1).
Respondents mentioned awareness campaigns on radio channels and advertising videos on television.2 This aims at helping spread information among a wider population. Moreover, this should motivate people to go directly to health centres. Other respondents mentioned the organization of awareness missions in health centres and in the surrounding villages. Awareness activities focus not only on the treatment of the disease but also the risk factors. Informing people on how to eat healthier, how to brush their teeth or communicating the importance of good hygiene in general, is also a necessary behaviour in order to eradicate noma.
5.2. Outcome expectations as deterrents
To improve early medical seeking behaviour, awareness of the possible positive consequences in three domains, i.e. physical, self-evaluative, and social is necessary to motivate new behaviour.
2 RFI and BBC are radio channels spreading awareness messages on how to detect noma, and on dangers of seeking aid from traditional healers. 22
5.2.1. Stigmatization of noma patients
The social rejection of patients with sequela is an important challenge for noma patients. It prevents them from seeking medical aid, going to school, and even induces psychological trauma. It is not surprising that stigma was positioned as the fourth major challenge in seeking medical care by noma patients. The impact of the social rejection can be observed in the following quote:
General stigma consists of looking down on patients with the sequelae of noma. Other family members do not want to eat family meals together with patients with noma or noma sequelae. They cannot drink water from a cup used by a noma patient. [...] If the patient goes to school, he feels a certain embarrassment in relation to the other students (Interviewee).
Therefore, the construction of the Children’s home by HAN not only served as a place to monitor and treat possible underlying conditions to prepare them for surgery, but also as a safe place for children. It is a place where they can recover their mental health by meeting other children with the same condition without hiding it. The children’s home is also a relief for the parents:
Parents are relieved because the children are very well taken care of both nutritionally and psychologically. They really flourish against the backdrop of hope. The hope that their children will be operated on and smile again (Interviewee).
Moreover, living together with children who have undergone surgery gives courage to the children waiting for their surgery. The children can see positive effects of the care they receive from HAN and that motivates them to apply the recommended behaviour such as brushing teeth and eating healthy.
In the Children’s Homes, the patients also receive certain education or vocational training, so when they go back home, they rejoin their friends in school or perform a job. This facilitates the social reintegration of children. Return of former noma patients also motivates others to seek medical care and hence improve all outcome expectations. Positive physical
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outcome expectations are developed by observing the effects of surgery on the wounds and how former noma patients can eat, drink and smile again. In addition, former patients talk about the chargeless treatment they received, which helps overcome the financial obstacle. The fact that recovered noma patients do not hide anymore and are accepted by the community enhances self-evaluative outcomes. Social outcome improves by witnessing the recovery of a noma patient and their vocational training, which is perceived as a real asset by the community.
With a score of 8.9 and 7.9 out of 10, the Children’s Home and the social reintegration are seen by the survey respondents as the two most satisfying contributions by the organisation. Yet, to further improve these contributions, one of the respondents mentioned strengthening the education of children in order to facilitate the reintegration.
5.2.2. Affordability
According to the survey, the lack of financial resources has a similar impact on health- seeking behaviour as stigmatization. This is an interesting finding since all treatments, accommodation, and social reintegration offered by HAN are free of charge, and transport costs are reimbursed. This is mentioned in the information sessions, radio and videos, but also by former patients. Affordability is an integral part of physical outcomes and access to healthcare. If a patient or its parents are not convinced that benefits of the therapy are outweighing the expenses or that they can afford the treatment, it is expected that they will not seek medical care. As a result, people may wait till the disease gets severe enough to go to a hospital. However, due to the fast spread of the disease, waiting for a few days longer can be dangerous. Therefore, the message of charge-free treatments cannot be emphasized enough during the activities and radio messages.
5.2.3. The social influence of traditional healers
According to the social cognitive theory (Bandura 2004), persons that are considered to be well-respected in someone’s environment can influence their behaviour. In the case of noma,
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traditional healers are the ones that negatively affect the behaviour of noma patients by discouraging or even preventing noma patients from seeking medical help in hospitals.
As mentioned earlier, traditional healers often consult noma patients and their parents. Yet, due to the lack of knowledge, many healers only worsen the disease by delaying the access to antibiotics and the execution of non-recognized treatments such as excisions, uvula ablations or cauterization of wounds which makes surgery more difficult:
[...] acute noma is a complex medical emergency case that a traditional healer cannot handle. Therefore their approach to noma patients is harmful and only worsens the disease. It makes medico-surgical management more difficult if the patient manages to survive (Interviewee).
According to the survey, the belief of traditional healers that noma cannot be treated in hospitals significantly hinders patients from seeking medical care. Moreover, the reason why many Nigeriens seek aid from traditional healers is the accessibility and affordability in comparison to health care centres. This explains why traditional healers are often the first ones noma patients seek help from, before going to the noma centre of HAN. To counteract this phenomenon, health care workers of HAN explain the danger of consulting a traditional healer to treat noma, according to the Interviewee.
Through the collaboration between HAN and the Ministry of Public Health, several recognized traditional healers have received noma training. However, as stated by the interviewee: ‘the healers who do damage are the most numerous’. As a result, instead of marginalizing these non-recognized healers, they should be more targeted by the organisation and by the Nigerien government. Indeed, six of seven respondents stated that traditional healers should be included in the activities and only one respondent argued that the collaboration with non-recognized traditional healers would be dangerous, even if they would receive training.
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A collaboration with a sufficient number of traditional healers could help noma patients in the early stages of disease by referring them directly to the noma centre. In order to achieve this, HAN could persuade non-recognized healers to attend the advocacy activities which may give the healers the necessary information to collaborate with HAN. Another useful strategy could be provided through financial support when referring patients to the noma centre.3 But even though a collaboration has been established between traditional healers and the health care sector, the marginalization and the lack of respect against traditional healers complicates the partnership, according to Hlabano (2013:117-118). To prevent this setback, the work of traditional healers already collaborating with HAN and the Nigerien government should be recognized by listening to their needs or possible ideas.
Moreover, the attendance of local healers in the activities or their recognition of the disease may also draw more people to the activities due to their status in local villages. This demonstrates the importance of including persons highly regarded by the community in order to reinforce a certain behaviour.
5.3. Socio-structural factors acting as impediments
Besides knowledge and the anticipated outcome of the behaviour, socio-structural factors are a third component that can prevent noma patients from consulting medical care. The identified impediments in Niger are the accessibility and availability of health care and insecurity threats in the country.
5.3.1. Accessibility
The distance to the health centres and the means of transportation are two problems with the highest impact on the health-seeking behaviour of noma patients, according to the respondents. Although HAN’s activities cover almost all of Niger geographical area, some patients still walk a long road to get access to medical aid:
3 Such a strategy has been successful in eliminating Buruli ulcer in Ghana by acting as a motivator as well as a recognition of the work (Ahorlu et al. 2013). 26
Hilfsaktion Noma covers 6 out of 8 regions in terms of structural representation in the field. But in reality, Hilfsaktion receives patients from all regions of Niger and beyond the borders. The patients come from Togo, Benin, Mali, Burkina Faso, and Nigeria (Interviewee).
Additionally, HAN reimburses all transportation costs. However, in some cases, there are simply no other transportation options than walking. Walking for hours or days in order to reach a health centre is not uncommon in Niger, according to Blanford et al. (2012). It is not surprising that some noma patients do not reach a hospital in time. For the already malnourished noma patients, walking several kilometres is a danger that could be fatal. In addition, some families do not have time to go by foot to the hospital because they cannot leave other children at home, which was identified as another issue of noma patients seeking medical care.
5.3.2. Availability
When patients are able to reach the hospital, they often face health workers without knowledge of noma, as stated by a respondent. Although, respondents were overall satisfied with the hospitals in Niger. But when recognizing the clinics according to whether or not they received noma training, a significant difference in satisfaction could be observed. The hospitals with training received a 7.7 out of 10 for satisfaction, whereas the hospitals without received merely a 4.4, which demonstrates the significant impact of the noma training organised by HAN. Yet, according to the respondents, more awareness among health care workers as well as more noma specialised hospitals are still needed.
Moreover, due to the compartmentalization of health care, many health workers and employees of other NGOs fail to identify the warning or early signs of the disease. All respondents were very clear in stating that hospitals and health centres should conduct more oral examinations even though a child does not have oral health issues. At the moment, oral examinations are not performed regularly when a child is brought to the hospital. Therefore, oral examinations should become a standard practice when examining children, especially when a child shows risk factors for the development of noma. This would lead to less
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children with sequela, less stigmatization, and improvement of mortality rate from the disease.
5.3.3. Insecurity
Like all countries in the Sahel region, Niger has become a booming place for terrorist groups such as ISIS, Boko Haram and Al-Qaida in the Maghreb (Raineri 2020). This does not only hinder the accessibility of the health care centres but also the access of HAN to the villages in order to perform awareness activities. The interviewee describes the security problems in Niger as ‘a handicap’ to conduct their activities. In addition, during times of heavy fighting, a higher number of noma patients is observed. A similar pattern is identified during extreme weather conditions and can be explained by the reduced access to food and clean water. Besides, due to the long distance in combination with dangers of getting hurt, many patients are unable to reach a hospital. As a result, many children with noma may not receive the medical aid in time or are never identified at all, so they pass away before even receiving a diagnosis.
5.4. The way forward: a multisectoral and community-based surveillance
5.4.1. The community-based surveillance
The medical world is investing more and more in community-based surveillance (CBS) or participatory disease surveillance. Due to the low costs and the ability to reach more people, the system offers a new way to improve the health of populations, even though access to hospitals is scarce (Smolinski et al. 2017). The participatory surveillance system has already proven its efficiency in the fight against Guinea worm disease (Cairncross, Braide and Bugri 1996) and, more recently, Buruli ulcer (Ahorlu et al. 2018).
Therefore, the survey measured to what extent the respondents agreed with the statement that a CBS can eliminate noma in Niger. Only one respondent strongly disagreed, with the lack of enthusiasm among the local authorities for such a system as a counterargument. According to Ochola, Karanja and Elliott (2021) this is due to the lack of will of politicians to invest in 28
preventive programmes instead of more tangible and curative health services. The absence of interest may also be grounded in the lack of knowledge of the disease. On the question of how satisfied they are with the advocacy among different institutions, the Nigerien government merely scored a 4.7 out of 10, indicating that much more work needs to be done to establish a government that is fully aware of the extent of the disease. Especially when two main risk factors of noma, the lack of access to health care and poverty, are mandates falling under the authority of the government.
Yet, all other respondents were in favour of a CBS system due to their many advantages. Firstly, by bridging the gap between the communities and HAN, a respondent mentioned that the system will be able to ‘sensitize many more people and in the most remote villages of the city’. Moreover, five out of the seven respondents agreed that activities organized by local villagers would attract more people than when planned by an external organization and six respondents agreed that HAN could help the villages by offering financial support for the activities. In the initial phase of the system, HAN could offer some guidance or a roadmap on how to organize awareness activities. The importance of shifting the organisational responsibility to the communities lies in the increase of self-efficacy through verbal persuasion as well as mastery. A person that survived a very deadly disease such as noma, will let the audience realize the importance of oral health and the fact that noma can be prevented and, most of all, that noma can be treated in a hospital. Indeed, Doctors Without Borders has used storytelling as a strategy to increase the knowledge of the general population in Nigeria. By mimicking the audience's situation by adjusting the environment, age, gender, and the challenges faced by the main character in a story, a better understanding of the disease and an increase of self-efficacy were accomplished through improving active listening. Moreover, hearing these stories can even change their view on the outcome expectations and persuade the parents to take their child to a hospital (Hughes 2018).
A second advantage of CBS is the early detection of noma patients and thus avoiding the formation of sequela due to the closer contact with the population.
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The last advantage can be connected to the lack of research performed on noma, which was acknowledged through the survey. In order to develop research, the participatory system could help obtain more data on the disease prevalence and the possible causative bacteria.
5.4.2. The multisectoral approach
Besides the community-based surveillance system, many respondents believe that: ‘to fight effectively against noma, the involvement of several sectors is necessary’. Community agents cooperating with HAN, such as the femmes relais, women acting as a liaison between the women in the community and the health centres (Ndiaye et al. 2003), should be included in the new approach. Because of their established network in the community and the hospitals, community agents could serve a key role in the CBS system by reporting suspected noma cases, warn and advise parents when a child presents one or more risk factors for the development of noma. In addition, through expanding the collaboration between HAN and the Nigerian ministry of health, the availability of health care workers with knowledge of noma could be increased. The partnership could be expanded to also promote regular paediatric consultations and vaccinations in the country. This would help to identify children at risk and inform their parents about the disease. Moreover, to tackle the accessibility of the health care centres and hospitals and the access to remote villages, better road infrastructure is acquired. This investment, in combination with more means of transportation and a communication channel between the remote villages and hospitals, would make an ambulance system possible to prevent people from undertaking the long walk to the hospital. A better road infrastructure would also allow better follow-up of patients recovering from surgery through home visits.
To reduce poverty in Niger, HAN has established many activities such as financing education, offering vocational training for noma patients, fighting undernutrition through outpatient nutrition centres, and offering food rations to the families of malnourished children. However, the organisation is unable to reduce poverty on its own. Therefore, partnering with other NGOs is highly recommended in the regions where noma affects the most people. This could be translated into the support of nutritional recovery centres in these
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regions, as suggested by one of the respondents. Another action point is the construction of latrines to halt the practice of open defecation. This suggestion was enthusiastically taken by the respondents because it contributes to the access to clean water and may thus reduce the risk of noma. Due to UNICEF’s expertise in water, sanitation and hygiene (WASH) and their experience of building latrines in the country (UNICEF 2020), they would be an ideal partner to cooperate with. Moreover, due to their knowledge on community participatory systems through their Community Case Management of Childhood disease to enhance the treatment of bacterial infections in children (UNICEF 2020), UNICEF can help with mapping out and setting up the community participatory system.
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6. Discussion This thesis aimed to increase knowledge on noma disease awareness activities and understand why referral rates have not increased after 25 years of awareness activities by HAN in Niger. The focus of the study was on identifying the challenges preventing noma patients from seeking medical care in Niger and how to overcome them. Therefore, a survey among health care workers of HAN supplemented with an interview with a key informant of the organisation was conducted.
The analysis identified several challenges withholding noma patients from receiving the appropriate medical aid in Niger. The main impediment was the lack of access, in particular the distance to the hospital and the available transportation options, which has been previously observed in neglected tropical diseases by Ochola, Karanja and Elliott (2021). Additionally, instability in the country due to terrorism and extreme weather events were also perceived as factors hindering access to health centres. Even though patients reach the hospital, adequate care is not guaranteed, as many health professionals have no knowledge of the disease. This leads to the second obstacle, i.e. cultural beliefs and lack of knowledge which extends from the general population to opinion leaders, including health workers and the government. The unawareness enhances the social rejection and complicates the elimination of the disease in Niger. It also negatively affects school attendance, which according to Ochola, Karanja and Elliott (2021) increase their vulnerability by further isolating patients. Moreover, the mystical belief encourages patients to seek aid from traditional healers who do not comprehend the disease and endanger the patient’s life by treating the patient instead of referring them, which is in line with previous studies in Nigeria (Farley et al. 2020) and Mali (Baratti-Meyer et al. 2019).
Further, the study focused on how to alter the activities to overcome these challenges. A community-based surveillance in combination with a multisectoral approach was proposed to eliminate noma in Niger. According to our analysis, by shifting the responsibilities for the organisation of awareness activities from HAN towards the communities, higher attendance rates could be achieved. Additionally, the personification of the disease through storytelling
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or by including former noma patients or their parents may increase the awareness and knowledge of the disease. This would help patients obtain the needed care by further developing their self-efficacy and promoting outcome expectations. This has been observed by Olamiju et al. (2014) by showing the positive effect on the disease awareness of neglected tropical diseases when knowing someone with the disease.
To fully make use of the advantages of a CBS system, a multisectoral approach is needed. Through a partnership with the government, NGOs, and the community, knowledge on different areas can be combined to improve the access to health care, poverty reduction and the overall well-being of the communities. Moreover, appreciating the effort of traditional healers who followed or are willing to pursue training could motivate other healers to follow their lead, which would improve referral and mortality rate of noma. The CBS system also has to partner with community agents due to their already established network in the community and hospitals. Besides, by engaging the community, the system would become more cost-effective and transferable to other countries facing noma, or countries with high poverty rates and low access to healthcare. In addition, through enhancing self-efficacy, outcome expectations, and setting common goals, the community’s behaviour towards WASH and nutrition can be changed. Making the CBS with a multisectoral approach, a preventive disease system promoting sustainable health, as suggested by Ndiaye et al. (2003).
This study may have missed some challenges due to conducting the interview through email instead of in-person, and by only including the health care sector in the survey. Therefore, it is recommended to conduct in-depth interviews in person with various actors involved in the fight against noma, such as the government, health care workers, NGOs, community leaders, traditional healers, noma-patients and their family members, etc. Besides, by including patients, we gain knowledge about their needs and stop assuming them. This in combination with further research on the pathogenic cause of noma will result in the development of more effective strategies to overcome and eliminate the disease.
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References Ackumey, M.M., Kwakye-Maclean, C., Ampadu, E. O., de Savigny, D. and Weiss, M. G., 2011. Health services for Buruli ulcer control: lessons from a field study in Ghana. PLoS neglected tropical diseases, 5(6):e1187. Ahorlu, C.K., Koka, E., Yeboah-Manu, D., Lamptey, I. and Ampadu, E., 2013. Enhancing Buruli ulcer control in Ghana through social interventions: a case study from the Obom sub-district. BMC Public Health, 13(59). Ahorlu, C.K., Okyere, D. and Ampadu, E., 2018. Implementing active community-based surveillance-response system for Buruli ulcer early case detection and management in Ghana. PLoS Neglected Tropical Diseases, 12(9): e0006776. Akoachere J.F.K.T., Nsai F.S. and Ndip R.N., 2016. A community based study on the mode of transmission, prevention and treatment of Buruli ulcers in southwest Cameroon: knowledge, attitude and practices. PLoS ONE, 11(5):e0156463. Ayenigbara, G.O., 2013. Malnutrition among children in the Sahel region: causes, consequences and prevention. International Journal of Nutrition and Food Sciences, 2(3):116-121. Bandura, A., 1999. Social cognitive theory: An agentic perspective. Asian Journal of Social Psychology, 2:21-41. Bandura, A., 2004. Health Promotion by Social Cognitive Means. Health Education & Behavior, 31(2):143-164. Baratti-Mayer, D., Baba Daou, M., Gayet-Ageron, A., Jeannot, E. and Pittet-Cuénod, B., 2019. Sociodemographic characteristics of traditional healers and their knowledge of noma: A descriptive survey in three regions of Mali. International Journal of Environmental Research and Public Health, 16(22):4587. Baratti-Mayer, D., Gayet-Ageron, A., Cionca, N., Mossi, M., Pittet, D. and Mombelli, A., 2017. Acute necrotising gingivitis in young children from villages with and without noma in niger and its association with sociodemographic factors, nutritional status and oral hygiene practices: results of a population-based survey. BMJ Global Health, 2:e000253.
34
Baratti-Mayer, D., Gayet-Ageron, A., Hugonnet, S., François, P., Pittet-Cuenod, B., Huyghe, A. et al., 2013. Risk factors for noma disease: a 6-year, prospective, matched case- control study in Niger. Lancet Global Health, 1:e87-96. Bello, S., Adeoye, J., Oketade, I. and Akadiri, O., 2019. Estimated incidence and prevalence of noma in north central Nigeria, 2010-2018. PLoS Neglected Tropical Diseases, 13(7):e0007574. Blackwell, N., Augier, A. and Sayadi, S., 2010. Food crisis in Niger: A chronic emergency. The Lancet, 376:416-417. Blanford, J., Kumar, S., Luo, W. and MacEachren, A., 2012. It’s a long, long walk: accessibility to hospitals, maternity and integrated health centers in Niger. International Journal of Health Geographics volume, 11(24). Bourgeois, D. and Leclercq, M., 1999. The World Health Organization initiative on noma. Oral Diseases, 5:172-174. Brieger, W.R. and Kendall, C., 1992. Learning from local knowledge to improve disease surveillance: perceptions of the guinea worm illness experience. Health Education Research, 7(4):471–485. Cairncross, S., Braide, E.I. and Bugri, S.Z., 1996. Community participation in the eradication of guinea worm disease. Acta Tropica, 61(2):121-136. Caulfield, A. and Alfvén, T., 2020. Improving prevention, recognition and treatment of noma. Bulletin of the World Health Organization, 98:365–366. Cho and Trent, 2014. Evaluating Qualitative Research. In The Oxford Handbook of Qualitative Research. Oxford University Press, Incorporated, Cary, pp. 677-696. Ciantia, F., Odong, T. and Oyoo-Odoch, N., 2013. The eradication of Guinea Worm Disease: a possible global public health achievement. Journal of Medicine and the Person, 11:88-92. Danfillo, I.S., 2009. Oral health challenges for sub-Saharan Africa. Niger Medical Journal, 50:90-94. Farley, E., Lenglet, A., Abubakar, A., Bil, K., Fotso, A. and Oluyide, B., 2020. Language and beliefs in relation to noma: a qualitative study, northwest Nigeria. PLoS Neglected Tropical Diseases, 14(1):e0007972.
35
Farley, E., Lenglet, A., Ariti, C., Jiya, N., Adetunji, A., van der Kam, S. et al., 2018. Risk factors for diagnosed noma in northwest Nigeria: A case-control study, 2017. PLoS Neglected Tropical Diseases, 12(8):e0006631. Farley, E., Muhammad Bala, H., Lenglet, C., Mehta, U., Abubakar, U., Samuel, J., et al., 2019. ‘I treat it but I don’t know what this disease is’: a qualitative study on noma (cancrum oris) and traditional healing in northwest Nigeria. International Health, 12:28-35. Fieger, A., Marck, K., Busch, R. and Schmidt, A., 2003. An estimation of the incidence of noma in north-west Nigeria. Tropical Medicine & International Health, 8(5):402- 407. Gulliford, M., Figueroa-Munoz, J., Morgan, M., Hughes, D., Gibson, B., Beech, R. et al., 2002. What does 'access to health care' mean? Journal of Health Services Research & Policy, 7(3):186-188. Harsch, E., 2017. The new face of the Sahel. Africa Renewal. August-November, Viewed 9 Aril 2021,
36
Korstjens, I. and Moser, A., 2018. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. European Journal of General Practice, 24(1):120- 124. Leithead, A., 2017. Can Niger break out of its cycle of poverty?. BBC. 23 August 2017, Viewed 8 March 2021,
37
Rahmati, S., Azami, M., Badfar, G., Parizad, N. and Sayehmiri, K., 2020. The relationship between maternal anemia during pregnancy with preterm birth: a systemic review and meta-analysis. The Journal of Maternal-Fetal & Neonatal Medicine, 33(15), 2679- 2689. Raineri, L., 2020. Sahel Climate Conflicts? When (fighting) climate change fuels terrorism. European Union institute for Security Studies. 4 December 2020, Viewed 5 May 2021,
38
WHO Oral Health Unit, 1998. Noma today: a public health problem? - report of an expert consultation organized by the Oral Health Unit of the World Health Organization using the Delphi method. WHO Regional Office for Africa and NCD regional Programme for Noma control, 2016. Noma is a severe disease – It is treatable if detected and managed early. WHO Regional Office for Africa. WHO Regional Office for Africa, 2019. Evaluation of the WHO Africa Regional Programme on Noma Control (2013-2017): Executive summary. WHO, 2008. Number of dentistry personnel. UN Data. Viewed 7 April 2021,
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Appendix 1: Interview guide
Area of interest Question Introduce myself, the objective of the interview, iterating the Introduction interviewees rights, ethical issues and obtaining consent. Opening question 1. What role do you perform in HAN? 1. What activities does HAN perform in Niger? 2. What is the geographic coverage of the activities? General 3. How are information sessions carried out? information about 4. Are they interactive? the activities 5. Do you work with village volunteers or former noma patients during the awareness activities? 1. Who is the target audience for the awareness activities? 2. Do you use a certain strategy to recruit audience for the activities? 3. Can you tell more about it. 4. Is there a difference between the people attending the information sessions and the intended target audience? 5. Can you tell more about the differences. Target group 6. How do Nigeriens relate to noma? 7. Do they have a specific belief to it? 8. Do they have their own name for noma? 9. Are these names mentioned during the awareness activities and on the dissemination materials, such as posters? 10. Has HAN been able to change the attitudes about the cause of noma? 11. How did the organisation change the attitudes? 1. How do you gain the trust of noma patients and their families? 2. Did the collaboration between HAN and the Nigerien government Trust made it easier or more difficult to establish trust with Nigeriens? 3. Have you or the organization encountered security issues because you work with noma patients? 1. What is your knowledge about Nigeriens seeking help from traditional healers in connection with noma? 2. What is your view on traditional healers’ approach to noma? Traditional 3. Do you have any contact or even cooperation with traditional healers healers in regard to noma? 4. Do you use some kind of strategy to change the perception of traditional healers’ role in the noma treatment among noma patients? 5. Can you tell more about it and its results. Noma patients 1. In which way are children with sequelae stigmatized in Niger? 40
2. What is the impact on the children and parents in connection with it? 3. How do schools address noma in the classroom? 4. How do noma patients experience their stay in the children’s house in the period prior to their surgery? 5. How do the parents perceive the period their children spend in the children’s house? 1. What is the difference in the number and severity of noma patients seeking treatment in the dry and rainy season or periods of intense violence? 2. Do you change the type or amount of activities during the rainy season or periods of intense violence? 3. Are all the activities and the treatment free of charge? 4. How familiar is the population with this policy? 5. Is there a surgical team always available in Niger? Impediments/ 6. To what extent are Nigeriens aware that most operations are carried facilitators of out in Niger and not in Europe? health care 7. Do you think performing operations in Europe may prevent people from seeking medical aid? 8. To which extent are other humanitarian organizations in Niger aware of the existence and risk factors of noma? 9. Do they refer noma patients to HAN? 10. Do you think that compartmentalizing health care negatively affects early diagnosis and the referral rate of noma? 11. What other reasons do you know that might explain the late seek of medical care of noma patients with sequela? 1. What is according to you the most important challenge to eliminate noma in Niger? 2. How would you improve the project if you had unlimited access to Ending questions money? 3. Is there something you find important for this research you would like to add or comment?
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Appendix 2: Survey questions in English
Informed Consent
Welcome to the research study!
We are interested in understanding the challenges that are faced during the noma awareness activities of Hilfsaktion Noma e.V. For this study, you will be asked to answer 13 questions about it. Your responses will be kept completely confidential.
The study will take you around 10 minutes to complete. Your participation in this research is voluntary and anonymous. You have the right to withdraw at any point during the study. The Principal Investigator of this study can be contacted at [email protected] .
By clicking the button below, you acknowledge:
Your participation in the study is voluntary. You are at least 18 years of age. You are aware that you may choose to terminate your participation at any time for any reason. o I consent, begin the study o I do not consent, I do not wish to participate
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Q1 What is your task within the Hilfsaktion Noma e.V.? o Health care staff: doctor, nurse, psychologist, nutritionist,… o Coordinating staff: management, directors, treasurer,… o Social and security workers: staff working in the children’s house, social assistants, drivers, Household personnel,…
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Q2 How long have you been active within Hilfsaktion Noma e.V. o 0-1 year o 1-2 years o More than 2 years
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Q3 Did you or a family member had noma? o Yes o No
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Q4 How satisfied are you with the awareness on noma among policy makers, the government, the hospitals and other aid organizations (NGOs)?
Dissatisfied Satisfied Very satisfied
0 1 2 3 4 5 6 7 8 9 10
Policy makers
The Nigerien government
District hospitals
Regional hospitals
National hospitals
Other non-governmental aid organizations
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Q5 How satisfied are you with the current activities to eliminate noma in Niger?
Dissatisfied Satisfied Very satisfied
0 1 2 3 4 5 6 7 8 9 10
Research
Advocacy (raising awareness) among traditional healers Advocacy among religious leaders
Advocacy among health care workers
Advocacy among the general population Funding
Preventive activities such as vaccination, treatment of malnutrition The "Children's Home" before and after surgery Social reintegration
Medical treatment in hospitals without noma training Medical treatment in hospitals with noma training
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Q6 What activities should be further improved according to you and why?
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Very high No impact Low impact impact
0 1 2 3 4 5 6 7 8 9 10
The distance to the hospital
Transportation means to the hospital
Community awareness
The number of hospitals specialised in noma treatment The lack of financial resources of the family Other children at home who cannot be left alone The stigmatization of noma patients
Traditional healers that are convinced that hospitals cannot cure noma
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Q8 Can you think of other challenges that prevent noma patients from seeking health care at an early stage
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Q9 What can be a reason for the non-cooperation of some traditional healers with Hilfsaktion Noma e.V.? (multiple answers are possible)
▢ The lack of knowledge about noma
▢ Financial reasons: if they refer possible noma patients to hospitals, they lose their income by not treating the patient
▢ Other: ______
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Q10 How much do you agree or disagree with the next statements? Strongly Strongly Disagree Agree disagree agree More traditional healers should be included in the activities to eliminate o o o o noma. Educating traditional healers that are not recognised by the Nigerien o o o o government would be a good idea. A collaboration with traditional healers that are not recognised by the Nigerien government would be dangerous even o o o o if they followed a training provided by Hilfsaktion Noma e.V. Health centres and hospitals should conduct more oral examinations on children at risk of developing noma, o o o o even if they do not have oral health issues Giving financial aid to villages to organise their own activities to increase awareness about noma would be a good o o o o idea to spread knowledge. This a control question, please select "Strongly agree". o o o o Activities organised by local villagers attract more people than when an organisation would come to the village o o o o to spread awareness about a disease. The usage of latrines would reduce the risk of water contamination and thus o o o o decrease the risk of developing noma. A participatory disease surveillance system can eliminate noma in Niger. (with a participatory surveillance system we mean a surveillance system o o o o based on community participation to promote health awareness).
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Q12 If Hilfsaktion Noma e.V. had access to an endless amount of money, what would you change, improve or add to the activities of the organisation to eliminate noma?
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Q13 Is there something you find important for this study you would like to add or comment?
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This was the last question. Thank you for taking the time to complete this survey! Your participation and information on the challenges to eliminate noma are much appreciated.
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Appendix 3: Survey questions in French
Consentement éclairé
Bienvenue dans cette étude!
Nous souhaitons comprendre les défis auxquels sont confrontés les activités de sensibilisation au noma de Hilfsaktion Noma e.V.. Pour cette étude, il vous sera demandé de répondre à 13 questions à ce sujet. Vos réponses resteront totalement confidentielles.
L'étude durera environ 10 minutes. Votre participation à cette recherche est volontaire et anonyme. Vous avez le droit de vous retirer à tout moment au cours de l'étude. Le chercheur principal de cette étude peut être contacté à [email protected] s'il y a des problèmes ou des commentaires sur l'étude.
En cliquant sur le bouton ci-dessous, vous reconnaissez:
Votre participation à l'étude est volontaire. Vous avez au moins 18 ans. Vous savez que vous pouvez choisir de mettre fin à votre participation à tout moment pour quelque raison que ce soit. o Oui, j’accepte, commence l’étude o Non, je n’accepte pas, je ne souhaite pas participer
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Q1 Quelle est votre tâche au sein de Hilfsaktion Noma e.V.? o Personnel de santé: médecin, infirmière, psychologue, nutritionniste,... o Personnel de coordination: management, directeur, trésorier,... o Travailleurs sociaux et de sécurité: personnel travaillant dans la maison des enfants, assistants sociaux, chauffeurs, personnel de maison,...
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Q2 Depuis combien d'années êtes-vous actif au sein de Hilfsaktion Noma e.V.? o 0-1 an o 1-2 ans o Plus de 2 ans
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Q3 Est-ce que vous ou un membre de votre famille avez eu du noma? o Oui o No
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Q4 Dans quelle mesure êtes-vous satisfait de la sensibilisation au noma parmi les décideurs, le gouvernement, les hôpitaux et les autres organisations humanitaires?
Mécontent Satisfait Très satisfait
0 1 2 3 4 5 6 7 8 9 10
Des décideurs
Le gouvernement du Niger
Des hôpitaux de district
Des hôpitaux régionaux
Des hôpitaux nationaux
Des autres organisations d'aide non gouvernementales
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Q5 Dans quelle mesure êtes-vous satisfait des activités actuelles pour éliminer le noma au Niger?
Mécontent Satisfait Très satisfait
0 1 2 3 4 5 6 7 8 9 10
Recherche scientifique
Renforcer la sensibilisation auprès des guérisseurs traditionnels Renforcer la sensibilisation auprès des chefs religieux Renforcer la sensibilisation auprès des travailleurs de la santé Renforcer la sensibilisation auprès de la population générale Financement
Activités préventives telles que la vaccination, le traitement de la malnutrition La "maison des enfants" avant et après la chirurgie La réinsertion sociale
Le traitement médical dans les hôpitaux sans éducation sur noma Le traitement médical dans les hôpitaux avec éducation sur noma
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Q6 Quelles activités devraient encore être améliorées selon vous et pourquoi?
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Q7 Quel est, selon vous, l'impact des défis suivants auxquels sont confrontés les patients noma lorsqu'ils cherchent des soins de santé au Niger?
Un faible Un impact très Aucun impact impact élevé
0 1 2 3 4 5 6 7 8 9 10
La distance à l'hôpital
Des Moyens de transport à l'hôpital
La sensibilisation de la communauté
Le nombre d'hôpitaux spécialisés dans le traitement noma Le manque de ressources financières de la famille Autres enfants à la maison qui ne peuvent pas être laissés seuls La stigmatisation des patients noma
Des guérisseurs traditionnels convaincus que les hôpitaux ne peuvent pas guérir le noma
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Q8 Pouvez-vous penser à d'autres défis qui empêchent les patients noma de rechercher des soins de santé à un stade précoce?
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Q9 Quelle peut être la raison de la non-coopération de certains guérisseurs traditionnels avec Hilfsaktion Noma e.V.? (plusieurs réponses sont possibles)
▢ Le manque de connaissances sur noma
▢ Des raisons financières: s'ils redirigent d'éventuels patients noma vers des hôpitaux, ils perdent leurs revenus en ne soignant pas le patient
▢ Autres: ______
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Q10 Dans quelle mesure êtes-vous d'accord ou en désaccord avec les prochaines déclarations? Très Très Désaccord Accord désaccord d'accord Plus des guérisseurs traditionnels devraient être inclus dans les activités visant à o o o o éliminer le noma. Éduquer les guérisseurs traditionnels qui ne sont pas reconnus par le gouvernement o o o o nigérien serait une bonne idée. Une collaboration avec des guérisseurs traditionnels non reconnus par le gouvernement nigérien serait dangereuse o o o o même s'ils suivaient une formation dispensée par Hilfsaktion Noma e.V. Les centres de santé et les hôpitaux devraient effectuer davantage d'examens oraux sur les enfants à risque de o o o o développer le noma, même s'ils n'ont pas de problèmes de santé bucco-dentaire. Donner une aide financière aux villages pour qu'ils organisent leurs propres activités de sensibilisation au noma serait o o o o une bonne idée pour diffuser les connaissances. Ceci est une question de contrôle, veuillez sélectionner "Très d'accord". o o o o Les activités organisées par les villageois locaux attirent plus de personnes que lorsqu'une organisation venait dans le o o o o village pour sensibiliser à une maladie. L'utilisation de latrines réduirait le risque de contamination de l'eau et donc diminuerait le risque de développer le o o o o noma. Un système de surveillance participative des maladies peut éliminer le noma au Niger. (avec un système de surveillance participative, nous entendons un système o o o o de surveillance basé sur la participation communautaire pour promouvoir la sensibilisation à la santé).
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Q11 Pouvez-vous expliquer pourquoi le système de surveillance participative pourrait ou ne pourrait pas éliminer le noma au Niger?
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Q12 Si Hilfsaktion Noma e.V. eu accès à une somme d'argent infinie, que changeriez-vous, amélioreriez-vous ou ajouteriez-vous aux activités de l'organisation pour éliminer le noma?
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Q13 Y a-t-il quelque chose que vous trouvez important pour cette étude que vous aimeriez ajouter ou commenter?
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C'était la dernière question. Merci d'avoir pris le temps de répondre à ce sondage! Votre participation et vos informations sur les défis pour éliminer le noma sont très appréciées.
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