Introduction

Trachoma is an infectious disease of the eye, caused by the bacteria Chlamydia trachomatis, which can lead to blindness if left untreated.1-3 Trachoma causes inflammation and scarring on the surface of the eye, resulting in an inward turn of the eyelashes so they are touching the eyeball, which is called trachomatous trichiasis (the complicated stage of the disease).4 Globally, trachoma is the leading cause of blindness and responsible for approximately 1.4% of all cases of blindness.5 While 3.2 million people require surgery for trachomatous trichiasis, 450,000 people have been confirmed irreversibly blind.4 Worldwide, an estimated 192 million people now reside in trachoma endemic areas with a high risk of becoming blind from trachomatous trichiasis.5 Currently, the disease is common in many poor and rural communities in Asia and Africa.6

Globally, the African continent is the worst affected with about 1.9 million cases of trachomatous trichiasis (61%) found in 29 of the 47 countries in the World Health Organization (WHO) African Region.5 Identified as one of the Neglected Tropical Diseases (a WHO list of 17 diseases that inflict a heavy health and economic burden on the poorest people and communities), increased awareness at all levels is needed in order to achieve the health-related Sustainable Development Goals.7,8

Chlamydia trachomatis can be transmitted from an infected person having discharge from the eyes and nose to any person through close contact. Transmission also occurs through vomiting, coughing, sneezing, physical contact, bedding and flies that have been in contact with the eyes or nose of an infected person.9 Transmission is acute in areas where people live in poverty (characterized by poor hygiene and sanitation, overcrowding and proliferation of flies).10 The disease affects mostly children (aged one to nine years) and women living in poor and rural communities.4-6 Women have a greater risk of blindness than males due to their close contact with infected children in endemic areas.5 Other risk factors include: low level of education, poor health behaviors and some economic activities. For example, cattle rearing favors the movement of many flies from cattle to humans which are the main vectors for transmitting the bacteria from one person to another.11,12

The signs and symptoms of trachoma are classified under early (active) and late stages (cicatricial or scarring complications).7 Early trachoma is characterized by frequent episodes of chronic follicular conjunctivitis, with signs like itching, redness of the eye, discharge, tearing, discomfort and mild inflammation. These signs are usually seen during childhood.1,2 At the late stage of the disease, the eyelids become scarred and turn inward due to frequent infection and inflammation over the years. The patient experiences severe pain due to the eyelashes constantly rubbing against the eyeball and is unable to tolerate exposure to light. When left untreated, the cornea becomes damaged leading to visual impairment or blindness.2,13

The management and control of trachoma involve early diagnosis, treatment and prevention. All these components are embedded in the WHO "SAFE" (Surgery, Antibiotics, Facial Cleanliness and Environmental Improvements) strategy, launched in 1996.5,14 At the early stage of trachoma, antibiotics like azithromycin are recommended to treat the disease. However, there are concerns about the effectiveness of the drug in killing the Chlamydia trachomatis bacteria present in the tissues. This is due to the fact that the antibiotics are only effective when the bacteria are in an active state. The Chlamydia trachomatis bacteria are known to lie dormant in the tissues for several weeks and hence may not be destroyed using antibiotics alone.2,15 The use of antibiotics combined with personal hygiene, including facial cleanliness and environmental improvement, is essential to prevent re-infection.2,11 At the latter stage of the disease, surgery is recommended for patients with trachomatous trichiasis to reduce corneal damage.2,11 Although surgery is cost effective, there are some limitations as it has to be performed every few years in trachoma endemic areas due to the reoccurrence of trachomatous trichiasis. Additionally, not all patients have access to surgical facilities.14 The fact that people get re-infected after treatment (with the use of antibiotics and surgery) demonstrates some limitations in managing the clinical aspects of trachoma. Like treatment with antibiotics, surgery needs to be accompanied with facial cleanliness and environmental hygiene.16,17

Facial cleanliness and environmental improvements are the main preventive components of the "SAFE" strategy. Facial cleanliness involves washing the face with clean water and soap as discharge from the eyes and nose of an infected person with Chlamydia trachomatis bacteria can be carried by flies to infect or re-infect another person. However, promoting this practice needs to be reinforced with health education and regular access to clean water campaigns. Environmental improvement practices that limit the presence and circulation of flies are critical in preventing the transmission of trachoma. These include constructing and disinfecting toilets, cleaning the environment, bedding and homes, and emptying trash cans and other objects and substances that promote the circulation of flies.14 However, the implementation of these preventive measures in most of the endemic areas in Africa is usually hindered by economic, infrastructural, religious and socio-cultural factors.17,18 For example, in the Moroto District of Uganda, cultural beliefs and perceptions about toilets influence the acceptance and use among community members. Pregnant women still do not use toilets because it is believed that the unborn child could fall into it.17

Trachoma has a negative impact on the life of patients, their families and communities. Economically, there is a huge loss in productivity estimated at US$2.9-5.3 billion annually as a result of visual impairment and blindness from trachoma.9 When it involves trachomatous trichiasis, it increases to approximately US$8 billion.8,9 The disease exacerbates the poverty of patients and their relatives as it diminishes their financial viability.17 Socio-culturally, women suffer more heavily from the disease than men, given that their role as mothers and carers makes them vulnerable to contracting the disease from being in close contact with infected children.6 Furthermore, women with trachoma suffer from stigma and social exclusion from family and community members.19 Overall, the quality of life drops significantly for people infected with the disease, especially for women.17,19

Although WHO has been leading the global campaign to eradicate blinding trachoma by 2020 through the "SAFE" strategy, the effective implementation in endemic countries has been met with various challenges including perceptions and practices amongst community members.5,20-22 For example, local perceptions and practices partly account for failure to achieve a change in behavior as trachomatous trichiasis continues to re-occur due to re-infection after surgery.21,22

Perceptions and practices relating to health and illness issues are common in African communities due to their cultural systems.23 The case of trachoma is no different as the way it is understood and managed varies from one culture to another. These perceptions and practices can be lay, socio-cultural or biomedical.22,23 They are founded on beliefs (religious and cultural), customs, traditions, local and biomedical knowledge. Perceptions shape people's attitudes, behaviors and practices within communities. When community perceptions and practices are not compatible with biomedical knowledge, they can hinder the effective implementation of interventions to combat disease. In Guinea Bissau and Gambia, for example, people think that trachoma occurs due to reading under a candle light, smoke from industries and dust.21,22 In Kenya, people use breast milk and blood from the ear of a goat to treat trachoma.24 These perceptions and practices can hinder effective prevention and treatment strategies. Hence, there is a need to understand perceptions and practices relating to trachoma in Africa in order to inform decision-making aimed at combating the disease.

A search for systematic reviews on this topic was conducted using the JBI Database for Systematic Reviews and Implementation Reports, the Cochrane Library, and the databases of PubMed, CINAHL and PROSPERO. No review on this topic was found; however, we identified a quantitative review on surgical interventions for trachomatous trichiasis from trachoma in the Cochrane Library.25 The review's focus and methodology differ from those of our proposed review topic as it is confined to the quantitative aspects of surgical treatment of trachoma. The outcome of our search suggests that currently, synthesized evidence on people's perceptions and practices relating to trachoma in Africa is lacking despite the availability of potential qualitative primary studies.17,20-22

The absence of synthesized evidence on people's perceptions and practices relating to trachoma in Africa can impede effective informed decision-making in policy and practice, aimed at combating the disease. Global intervention programs such as the "SAFE" strategy are currently being implemented, with limited knowledge of people's perceptions and practices. Consequently, this intervention may not holistically address all the barriers that hinder its successful implementation. These barriers include, but are not limited to: late diagnosis, low toilet acceptance and use, use of traditional medicine and low adherence to the routine practice of face cleaning. Based on the relevance of this topic and the problem it seeks to address, this review will identify, critically appraise, extract, analyze, synthesize and present the best current and available evidence on community perceptions and practices relating to trachoma in Africa.

Review questions

i. What are the perceptions of community members relating to trachoma in Africa?

ii. What are the practices of community members relating to trachoma in Africa?

Inclusion criteria

Participants

Studies with participants regardless of their health status, gender, religion and ethnicity, aged 14 years and over conducted in any African country will be considered. Although studies have shown that children also get infected with active trachoma,5,26 the authors agree that only at the age of 14 years old are they are able to express themselves. Community members will include people who reside in a specific socio-cultural and geographic context, not only those in healthcare settings. Both people with and without trachoma will be considered. Studies on Africans, conducted out of the continent and those involving healthcare professionals, will not be included in this review.

Phenomena of interest

This review will focus on community perceptions and practices relating to trachoma. Perceptions will include: beliefs, perspectives, views, knowledge and thoughts relating to trachoma as an infectious disease. Practices will include regular actions by community members that relate to the disease, such as treatment and prevention behaviors. Community refers to a specific socio-cultural entity consisting of people from diverse backgrounds and sharing similar values, customs, norms, beliefs, perceptions, traditions and principles. This is different from the biomedical healthcare community made up of people with diverse professional backgrounds related to biomedicine.

Context

Qualitative studies conducted in healthcare facilities (health centres, clinics and hospitals) and community settings in Africa will be considered for this review.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action and feminist research and phenomenography. Only studies published in the English language will be searched due to limited capacity to translate those published in other languages. Studies published from 1996 to the present will be considered relevant for this review given that it was from this date that WHO launched the "SAFE" strategy for the elimination of trachoma by 2020.2

Methods

The presentation, conduct and synthesis of this qualitative systematic review will be guided by the JBI methodology.27 The JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; Joanna Briggs Institute, Adelaide, Australia) will be used at various stages in the review production process as will be described below.

Search strategy

The search strategy will locate both published and unpublished studies. A three-step search strategy will be used to identify all relevant studies. A preliminary search will be conducted in PubMed and CINAHL, followed by an analysis of the text words, titles and abstracts, including the index terms used to describe the articles. A second search will be conducted, during which all the keywords and index terms identified will be used across all included databases. Furthermore, a hand search will be conducted in specific journals that contain qualitative studies on trachoma such as Ophthalmic Epidemiology, Journal of Tropical Disease and Public Health, Journal of Travel Medicine, and International Health. The last step will be a search of the reference list of all studies included for appraisal for additional studies.

Information sources

The databases to be searched for published studies will include PubMed, CINAHL, Embase, PsycINFO, Sociological Abstracts, BioMed Central, Current Contents and Google Scholar. Unpublished studies will be searched via MedNar, Index to Theses, ProQuest and Dissertations and Theses Global, WHO and government reports (research repots commissioned by individual governments in each trachoma endemic country). The search will be done in each government website and not in a unique repository. A search strategy with relevant keywords is found in Appendix I.

Study selection

Following the search, all identified citations will be collated and uploaded into EndNote XVIII, 2018 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Studies that may meet the inclusion criteria will be retrieved in full and their details imported into JBI SUMARI. The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion will be provided in an appendix in the final systematic review report. Included studies will undergo a process of critical appraisal. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.28 Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

Assessment of methodological quality

Studies that are selected for critical appraisal will be assessed by two independent reviewers for methodological validity before they are included using the JBI Critical Appraisal Checklist for Qualitative Research.27 Any disagreements about the inclusion of a study will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in narrative form and in a table. At the end of critical appraisal, studies that do not meet the minimum 70% "yes" quality threshold will be excluded. The decision is to insure that a majority of the included studies are good quality.

Data extraction

Qualitative data will be extracted from included studies using the standardized data extraction instrument from JBI SUMARI.27 The extraction will be conducted by two independent reviewers on a Microsoft Word (Redmond, Washington, USA) document after which the two reviewers will then meet to compare the extracted data prior to their entry into the electronic JBI SUMARI data extraction form. The objective is to ensure consistency during the extraction process and also to avoid losing data in the event of an interruption in electricity power supply. Any disagreement will be resolved through dialogue or with a third reviewer.

Data to be extracted will include specific details about the geographical location, setting, phenomena of interest, culture, population, methodology, findings and the author's conclusion. Findings and their illustrations will be extracted verbatim and assigned a level of credibility. Findings will either be described as unequivocal (findings and accompanying illustrations that are beyond reasonable doubt) or credible (findings whose accompanying illustrations lack a clear association) as recommended in the JBI Reviewer's Manual.27 All unsupported findings (findings not backed by an illustration) will also be extracted. Authors of primary studies will be contacted for clarification or missing information, if necessary.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI following the met-aggregation approach.27 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used to inform practice and policy. Where textual pooling is not possible, the findings will be presented in narrative form.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.29 The Summary of Findings will include the major elements of the review and detail how the ConQual score is developed. Included in the table will be the title, population, phenomena of interest and context for the specific review. Each synthesized finding from the review will be presented along with the type of research informing it, a score for dependability, credibility, and the overall ConQual score.

Appendix I: Search strategy for Embase via Ovid (using Clinical Information Access Portal [CIAP])

Only studies published in English language from 1996 till present will be included:

References