The Alliance for the Global Elimination of Trachoma has set the target for eliminating trachoma as a public health problem by 2020. However, challenges remain, including socio-cultural issues. Districts in Northern Tanzania, predominantly inhabited by the Maasai ethnic group, remain endemic for trachoma. We explored socio-cultural factors that may impact the elimination of trachoma. This study was nested within a larger ethnographic study of trachoma among Maasai in Northern Tanzania. We used stratified random sampling and semi-structured interviews to examine knowledge and understanding. Interviews were conducted and recorded in Maa, by a native Maa speaking trained interviewer. Transcripts were translated into English. A framework method for a content analysis was used. There was awareness of trachoma and basic symptoms. Yet understanding of etiology and prevention was poor. Trachoma was attributed to pollen, dust, and smoke. Water was recognized as beneficial, but seen as treatment and not prevention. Traditional medicines were most often used for treating conjunctival inflammation, with the most common being a rough leaf used to scratch the inside of the eyelid until it bleeds. Knowledge of mass drug administration (MDA) was inconsistent, although many thought it helped the community, but it was perceived as only for children and the sick. Many participants reported not taking azithromycin and some had no recollection of MDA six months earlier. There was little connection between childhood infection, trichiasis and related blindness. Trichiasis was often seen as a problem of old women, and treated locally by epilation. Understanding indigenous knowledge may help guide control programs, tailor them to local contexts, address local beliefs and dispel misunderstandings. There is an essential need to understand the social, cultural and political context of the target community to deliver effective programs. Despite limited knowledge, the community recognized trachoma as a public health problem. Results have implications for disease control programs in other marginalized communities.
Trachoma is the commonest infectious cause of blindness worldwide, caused by chlamydia trachomatis and remains a significant public health concern. This neglected tropical disease (NTD) tends to mostly impact poor and underdeveloped areas. Current estimates indicate about 182 million people live in trachoma endemic areas and is the cause of blindness or visual impairment of 1. 9 million people in 42 countries [1]. The clinical features of trachoma are divided into those related to ‘active’ disease which characterizes episodes of infection and are most common in children under 10 years; and those associated with scarring. Early stages of trachoma are characterized by follicles and inflammation in the conjunctiva of the upper eyelid. Contraction of scar tissues causes eyelids to turn inward (entropion). Trichiasis occurs when eyelashes touch the eyeball. Eventually a number of factors including corneal trauma and secondary infection can lead to blindness [2]. While prevalence of active trachoma is fairly similar across sexes; women tend to have more scarring, more trichiasis and subsequently more loss of vision likely due to greater life-time exposure to infection from young children [3]. There is a dearth of information related to trachoma among marginalized ethnic groups including the Maasai of Tanzania. The Maasai are semi-nomadic pastoralists predominantly spanning the central border of Tanzania and Kenya. The traditional lifestyle of the Maasai is changing with reduced access to land for grazing and changes in weather leading to a more semi-nomadic or even agricultural based lifestyle. Maasai are facing challenges that may negatively impact health including increased drought, poor access to major roads and education, substandard health services and on-going land disputes [4–6]. Food insecurity was found to be severe and vaccination coverage the lowest among the Maasai when compared to five other tribes in Northern Tanzania [7]. For trachoma, baseline surveys in 2006, reported trachomatous inflammation-follicular (TF) prevalence of 57. 6% in children aged 1–9 years [8]. More recent studies showed the prevalence of conjunctival follicles, papillary inflammation and scarring among a cohort of children aged 6–10 years in a predominantly Maasai community in northern Tanzania, was 33. 6%, 31. 6% and 28. 5%, respectively [9]. Risk factors for trachoma span environmental, socio-economic and behavioral factors. Risk factors for trachoma include limited access and use of water [10]; limited face washing [11–13]; poor sanitation [14,15]; and crowding [16]. However, in marginalized communities such as the Maasai, communal living and poor economic, social and environmental conditions are a challenge to maintaining proper hygiene [17]. Control of trachoma is based on the SAFE Strategy, established by WHO in 1997 under the Alliance for the Global Elimination of Trachoma by 2020 (GET 2020). SAFE includes four public health interventions: Surgery for trachomatous trichiasis; Antibiotic treatment to eliminate the infection; Facial cleanliness promoting hygiene to reduce transmission; and Environmental change which includes management of human and animal feces, cleanliness to reduce flies, crowding and access to water [18]. SAFE has not been fully implemented in this context. Mass drug administration of azithromycin has been conducted in all high trachoma endemic Maasai districts in Tanzania in accordance with the National NTD Control Program and WHO, although impact surveys are still ongoing. Surgical camps to reduce the backlog of trichiasis cases have been ongoing in Maasai districts with the support of several international implementing partners and the National NTD Control Program. However, programs addressing facial cleanliness and environmental change components of SAFE are limited particularly in Maasai communities. Trachoma control interventions require community understanding of trachoma and behavior change. Furthermore, it is important to consider the community’s perspective to account for socio-cultural factors that may guide the design of effective control interventions and increase uptake of the SAFE strategy. The aim of this study was to explore the knowledge and understanding of the nature of trachoma including pathology, progression of disease, risk factors, prevention and treatment among a trachoma endemic Maasai community. These findings can help guide more effective public health approaches to implementation of the SAFE strategy in Maasai communities.
This study was conducted in Sinya Ward in Longido District, of Northern Tanzania. Sinya is located in the plains between Mt Kilimanjaro and Mt Meru. Sinya is comprised of three villages, Il Donyo, Leremeta, and Endonyoemali; with a total population of 4285. The community is nearly all Maasai most of whom have permanent bomas, in the village. A boma is a Maasai homestead headed by one male, consisting of houses for each of his wives and their children. A boma can range in size of 10–70 people but on average is approximately 40 people. There are a few non-Maasai, Ormeek, staying in Sinya for the purpose of government work in the schools and dispensaries and for trade. The main source of livelihood has been traditional livestock production in this purely pastoralist community. Of 107 bomas in Sinya, five bomas were randomly selected in each of the three villages to achieve a sample size of 30 participants. For the purpose of this study a boma was considered a household since decisions are made by the male head of the boma. A boma also physically acts as a household in that it is a fenced enclosure of all homes or huts of the wives which are systematically placed in order of marriage. It was expected that in this traditional, isolated, Maasai community with little variation in lifestyles, 30 participants representing all three villages and different bomas would be a representative sample of the larger community. Census data was collected by the lead author for the 15 selected bomas. Each boma was visited by the lead author and together with the male head of the boma a list of all people ages 18–50 residing at the boma was documented. Using the census data, one male and one female aged 18–50 years were randomly selected to be interviewed from each of the 15 bomas. An internet-based sample builder was used to randomly select five men and women from each boma (www. randomizer. org). If the first randomly selected person was not available, the next person in the randomization list was approached to participate. As the researchers had conducted the census at each boma, most selected participants were already familiar with the researchers and a rapport had been established. Semi-structured interviews were conducted from October to December 2016 with participants in Maa (Maasai language) by a native Maa speaking interviewer in a conversation-like manner. Interviews were conducted in a private setting, typically under a tree, at the participant’s home with only the participant, interviewer and principal investigator present. The interview guide consisted of socio-demographic information and open-ended questions on experiences, knowledge and understanding of the nature of trachoma including pathology, progression of disease, risk factors, experiences, treatment, prevention and blindness. Interviews were audio recorded and later transcribed and translated from Maa to English (S1 Text). Participants were asked about local treatment for trachoma and a list of plants in Maa was compiled. Two Maasai field assistants identified and photographed the plants in the field. The list of Maa plant names and photographs was used by a botanist to identify the botanical names. Transcription was done directly from Maa to English; some transcripts were corrected to ensure more understandable English while assuring meaning was not changed. English transcripts were entered into NVIVO 11 Software. Initial interpretation included familiarization of the data and review of reflective notes. Data were coded by lead author, TM, using the interview guide as a framework and verified by author SL. A framework method for content analysis [19] was used and descriptive findings reported. Open coding was conducted on five transcripts to confirm there were no emerging codes to be included in the analysis. Codes were grouped into themes and compared against the interview guide (S1 Table). Themes reflected the key topics from the interview guide. Using a coding framework, data were charted into a framework matrix (S2 Table). Impressions and interpretation of the framework matrix were discussed with the native speaking interviewer and coauthors. The findings reported include the key high-level codes. Constant comparative analysis was done comparing responses between genders and within bomas. Quotes presented are used to show dominant views from the interviews. Not all interviewees views are represented but rather more overarching themes included. This study was approved by the Ethics Committees of the National Institute for Medical Research, Tanzania and the London School of Hygiene & Tropical Medicine, United Kingdom. Informed consent was obtained from all participants in Maa and a witness was present for illiterate participants. Permission to digitally record interviews was obtained from each participant. Permission from the male boma elder of the 15 selected bomas was also obtained.
A total of 28 adults, 15 women and 13 men, from the 15 study bomas in three villages were interviewed. There were no men available for interview at two bomas due to seasonal migration in search for good pastures and business travel. Despite data saturation being reached, researchers continued to conduct interviews to assure a sense of inclusivity in the community. The participant ages ranged from 18 to 49 years. Exact age was unknown to the majority of participants as they do not maintain documentation of date of birth nor track their ages. Estimated age ranges of participants were as follows: 18–29 years (n = 10), 30–39 years (n = 9), 40–49 years (n = 9). Education level of participants were as follows: no formal education (n = 22), attended primary school (n = 5), attended secondary school (n = 1). All were conducted in a private setting, however for one interview a husband [8–1] insisted that he and his wife [8–2] be present for each other’s interview. The Maa term enaoji is a condition of the eye associated with irritation specific to the eyelid. Some mentioned white spots on the inner surface of the eyelids, possibly follicles. The most commonly reported symptoms of enaoji described included discharge (sometimes described as heavy and yellow), swollen eyelids, redness and itching. Some described pain, light sensitivity, inability to open the eye and an overall ill feeling throughout the body. Regardless of the associated symptoms, enaoji was most often explained as being specific to the eyelids. It was often reported to affect young children and some said it occurs within a few days after birth. Some described other symptoms which were not necessarily related to trachoma nor to the local interpretation of enaoji. Participants were all aware of a condition in which eye lashes turn inward and touch the eye ball, trichiasis, although they have no Maa term for it. Trichiasis was considered a normal condition that occurs with age particularly in women. None of the participants were able to link this with childhood eye infections or enaoji although after some probing they agreed such a link is plausible. When asked about what causes trachoma, many attributed it to pollen, dust, smoke and climate conditions that seem to vary with the year. Some mentioned “year of the eyes” in which some years there are a lot of eye problems compared to other years. Some participants attributed enaoji as a result of magic or a curse being inflicted by someone. A link to flies was described by many participants but the mechanism was not clear. Some thought the flies had to bite the eye or a part of the body or the fly gets into the nose and goes up to the eyes causing enaoji. Others said babies were born with dead flies in their eyes which caused eye problems. Some discussed that when it rains and when there is more milk around during calving season, there are more flies and that was when more children were getting enaoji. Only one participant mentioned bacteria and flies as a vector. He was in secondary school, and had the highest level of education of all participants interviewed: Methods to prevent infection were not mentioned by any participants. When asked if facial cleanliness can prevent trachoma, only a few respondents said that “it helps” but they were unable to elaborate more. Many described it as a treatment for yellow discharge, pain or irritation rather than for prevention. Although many reported being given information on cleanliness at clinics, most were unsure of the links between a clean environment and preventing trachoma and hence not convinced to follow the advice. Many said that hospitals help prevent disease or “only God can help”. Most participants said western medicine is better than local medicines or they are equally effective. Collecting local medicines from trees, plants and shrubs is part of Maasai women’s daily activities. Women prepare tea for their family from local medicines each morning depending on several factors including the weather, activities family members are involved in (ie, grazing, setting out on a long journey), food availability and current illnesses. Some said they go to hospitals if the local medicines do not help. A few participants believed that local medicines are better. Most participants, however, reported using local medicines or veterinary medicines (such as penicillin and oxytetracyline) for eye problems, mostly because of poor access to western treatments. These included roots, leaves and bark of various trees and plants (Table 1), or other household products (Table 2). In most cases eye treatment for children is administered by women and the most common local treatments for enaoji are brewing medicines for eye drops, direct application of liquid from leaves or scratching the eyelids with a rough leaf. For the later practice, women take the leaf of the plant, Grewia bicolor, (Fig 1) and rub the inside of the inverted eyelid until it bleeds. Although trichiasis was not considered a health condition that can be treated with surgery, most described the use a U-shaped iron, olputet, for epilation of eye lashes. Only one participant talked about surgery an old woman in her boma previously had, however on probing it seemed to not be related to trichiasis. Mass drug administration of azithromycin was conducted in Sinya in 2015 and 2016. Most participants recalled the MDA although a few were completely unaware of the program. Most reported that the drugs were probably effective because after the distribution there were fewer eye infections in the community although most were unsure how it helps. Some reported side effects either they or others had including diarrhoea, vomiting and dizziness. Some also reported uncertainty and lack of trust in the drugs: When asked what causes blindness, most responses were that it is a result of aging. Some other causes mentioned included trichiasis, untreated eye diseases and God. If someone becomes blind at a young age, it was attributed to someone using witchcraft on them. A few women and a man talked about it as a curse for not paying traditional birth attendants after the birth of their child. Despite the traditional beliefs on causes, it did not negatively impact on how they treated the blind person. All participants remarked that blindness is a serious disability for the individual as they are unable to attend to their daily activities without the assistance of others. They all said it was a significant burden on others in the boma in regards to taking on their responsibilities at the boma including cooking and cleaning and assisting them to the toilet and other basic needs. The economic burden was also mentioned. Although blindness was considered a burden on the community, all participants discussed supporting blind people in their daily activities. Some family members, including children, were appointed as caretakers. There was little difference in responses between men and women. Women tended to be more descriptive in the symptoms of enaoji as well as the practice of scratching eyelids for treatment. Women were more likely to discuss side effects and rumours of MDA. Analysis of the data between the man and woman within a boma, showed similar responses. This consistency of responses within a boma indicates sharing of knowledge and perceptions around health between men and women.
This is the first study to examine perceptions and experiences of trachoma among the Maasai in Tanzania. Additionally, this was the first study to identify a local treatment used in treatment of swollen eyelids among the Maasai. In particular the commonly practiced scratching of eyelids with a rough leaf has not been documented. Children’s eyelids are scratched until they bleed. This may potentially lead to secondary scarring related to this local practice. Further studies are needed to explore the effects of local treatment on scarring and progression of disease. This study found prevention of blindness is important to Maasai. They discussed the social and economic burdens of blind people in the community. Possibly if health education in the community included the connections of childhood infections, trichiasis, and blindness, the community would place greater value on the information to prevent this disability. It is important to understand the indigenous knowledge of disease to guide effective control programs. Therefore, further ethnographic research with an in-depth focus on this communities’ beliefs, practices and relationships with health care is needed. The National NTD Control Programme has put resources into behaviour change interventions for trachoma control. These findings will provide further understanding of the community to tailor interventions more appropriate for Maasai. Additional research is needed to further explore the effect of a multi-level behaviour change intervention on sustained behaviour change for improved F and E practices among marginalized communities such as the Maasai. While this study focused on the Maasai in Tanzania, the results may contribute to the broader knowledge base and approach to improving control programs for other marginalized communities.
While global efforts to control and ultimately eliminate trachoma have been successful in many contexts, it has proven to be more challenging in many societies. Due to social, political or economic vulnerabilities, the approach to delivering global health programmes to some marginalized communities requires a more social science perspective. The Maasai, semi-nomadic pastoralists predominantly spanning the central border of Tanzania and Kenya, are one such community in which trachoma is endemic despite efforts to deliver interventions. Trachoma control interventions require community understanding of trachoma and behavior change. Furthermore, it is important to consider the community’s perspective to account for socio-cultural factors that may guide the design of effective control programmes and increase uptake of the interventions. This paper explores the knowledge and understanding of the nature of trachoma including pathology, progression of disease, risk factors, prevention and treatment among a trachoma endemic Maasai community. These findings can help guide more effective public health approaches to implementation of trachoma and other disease control interventions in Maasai communities.
skin
plant anatomy
medicine and health sciences
integumentary system
face
tropical diseases
geographical locations
bacterial diseases
plant science
tanzania
eye diseases
neglected tropical diseases
eyes
africa
blindness
infectious diseases
head
leaves
people and places
visual impairments
anatomy
ophthalmology
biology and life sciences
ocular system
trachoma
eyelids
Knowledge, perceptions and experiences of trachoma among Maasai in Tanzania: Implications for prevention and control