Despite aspects of the SAFE strategy for reducing trachoma in Tanzania have been somewhat successful, the disease still persists in marginalised communities even with repeated trachoma control interventions. This study aims to understand the facilitators and barriers associated with implementing trachoma control programmes in these communities, from the perspective of non-governmental organisations (NGOs).

Participants were the representatives of NGOs who had knowledge and experience in the implementation of trachoma control programmes. Data was collected using in-depth, semi-structured interviews guided by a topic guide, which was updated after each interview using a constant comparative method. Interviews were audio-recorded and then transcribed verbatim. Thematic analysis was done inductively. Codes were generated from the transcripts and then clustered into themes.

The context within marginalised communities often acted as a perceived barrier to successful implementation of control programmes. This included poor environmental cleanliness, lack of trust, poor disease knowledge and traditional lifestyles. Community values could either be a facilitator or a barrier, depending on the scenario. The anatomical location of the disease and the poor understanding of the disease progression also served as barriers. Considerations affecting decision-making among NGO’s include financial feasibility, community needs and whether the quality of the intervention could be improved. NGOs felt that the collaboration and the opportunity to learn from other organisations were beneficial aspects of having different actors. However, this also resulted in variability in the effectiveness of interventions between districts.

NGOs should focus on behaviour change and health education that is tailored to marginalised communities and seek innovative ways to implement trachoma intervention programmes whilst being minimally intrusive to the traditional way of life. Partners should also implement ways to ensure high quality programmes are being provided, by increasing staff accountability and compensating volunteers fairly.

Trachoma is a neglected tropical disease caused by the bacterium Chlamydia trachomatis and can result in blindness if left untreated. The World Health Organisation devised the SAFE strategy (Surgery, Antibiotics, Facial Cleanliness and Environmental Improvements) to combat this disease. In Tanzania, many trachoma control interventions are implemented by non-governmental organisations (NGOs). The disease still persists in areas with marginalised, including Maasai, despite repeated interventions. These communities are often difficult to reach due to their livelihoods and local beliefs. This study investigates the facilitators and barriers to implementing interventions within hard to reach communities from the perspectives of NGOs. Findings will provide insight on how NGOs implement and ensure their programmes are effective, whilst being mindful of the intrinsic factors important to the community, which will inform improvements and alterations in trachoma interventions.

Citation: Tsang K, de Wildt G, Mwingira U, Mtuy TB (2021) Implementing trachoma control programmes in marginalised populations in Tanzania: A qualitative study exploring the experiences and perspectives of key stakeholders. PLoS Negl Trop Dis 15(9): e0009727. https://doi.org/10.1371/journal.pntd.0009727

Editor: Robin L. Bailey, London School of Hygiene&Tropical Medicine, UNITED KINGDOM

Received: October 20, 2020; Accepted: August 14, 2021; Published: September 10, 2021

Favourable opinions were obtained from three ethical committees: The University of Birmingham Internal Research Ethics Committee, the London School of Hygiene and Tropical Medicine Research Ethics Committee, and the National Institute of Medical Research in Tanzania. Data was stored in accordance with both the European GDPR data protection policy and the policies of the universities from which ethical approvals were obtained. Informed written and verbal consent was obtained from all participants. Permission for the data to be audio-recorded was also obtained from each participant.

A qualitative study was deemed most appropriate to investigate the experiences and perspectives of the key stakeholders implementing trachoma interventions. Semi-structured interviews with the representatives of the organisations involved with trachoma interventions in marginalised communities, primarily comprising of Maasai populations, were conducted during February and March 2019.

The research team was based in Moshi, Tanzania. For the stakeholders with offices in Tanzania, interviews were conducted in person. Interviews with stakeholders with foreign offices were conducted via a Skype call. On a regular basis, the National NTD Control Programme assigns districts to the stakeholders to ensure that trachoma endemic areas are covered with the appropriate control programme.

Purposive sampling was the primary method used to recruit study participants, owing to the limited number of stakeholders and therefore potential participants. Relevant organisations were identified from a list of the members of the International Coalition for Trachoma Control to see whether they were implementing trachoma interventions in Tanzania. Snowball sampling was used to identify additional suitable and willing participants. Participants were recruited based on their knowledge and experience in the implementation of trachoma interventions in Maasai or marginalised communities in Tanzania and whether they had a working level of English. Participants were excluded if they would not or could not give informed consent. Recruitment ended when all the willing stakeholders that fit the sampling criteria were interviewed.

Participants were contacted and given information on the study via email and were followed up a few days later if no reply was received. All the participants were literate and gave informed written consent prior to the interview. The time and location of the interviews were chosen to suit the participants. All of the interviews, either in-person and Skype, took place in a private and quiet room and were conducted by the lead author.

Interviews ranged from 44 to 83 minutes, with an average interview time of 62 minutes. Since the participants were expected to have expert knowledge in the field, the duration of the interviews allowed them to explore various topics in detail.

All the participants gave consent for the interviews to be audio-recorded using an encrypted device and notes were taken during the interview to provide more context to the interviews.

The study found four key themes affecting trachoma intervention implementation: 1) contextual factors; 2) trachoma-specific factors; 3) decision-making factors and 4) the effect of multiple actors.

This theme explores the contextual factors of the marginalized communities identified by NGOs when implementing trachoma interventions, including the key social, economic and political factors.

The majority of participants emphasised the shortage of water in trachoma-endemic areas in Tanzania and recognised that poor or limited infrastructure was an important factor contributing to the shortage of water.

Because it’s very dry, it can’t be someone putting boreholes in the whole village, it’s quite impossible. [P6]

Most participants described poor levels of personal hygiene in these marginalised communities as a direct result of water shortage. Several participants recounted that members of these communities were unable to hand-wash or maintain good personal hygiene, despite having been educated during behavioural change trachoma interventions, due to the lack of water infrastructure.

… educating pupils about hand-washing, good sanitation and hygiene, but there is no water, so they can’t practice practically. [P8]

Some participants pointed out that the absence of latrines or their lack of use resulted in open defecation within the community, providing an environment favourable to the spread and reinfection of trachoma due to the breeding of flies in faeces. It was also outlined that even if latrines were present, open defecation in the community may persist due to habit and reluctance to change their behaviour, contributing to poor environmental cleanliness.

The sanitation is low already, so which means [it] is a component of those flies which are breeding in human faeces. [P12]

Because building toilets in Maasai communities is one thing, but making them to use them is another challenge. [P6]

Most participants outlined that the priority of cattle and the proximity to which they live with the Maasai people created a similar problem to that of open defecation, but with animal faeces. The presence of both human and animal faeces, and poor environmental cleanliness reduces the effectiveness of interventions due to reinfections. A few interviewees also noted that the presence of cattle enhanced the effect of water shortage on personal hygiene, because providing the cattle with water appeared to be regarded as more important than using water for personal cleanliness.

So until they separate those living quarters [with cattle] … those flies will be, will continue to be around … what we are saying is that there is a high prevalence of infection, of disease, there is all the things that can possibly contribute to transmission. [P12]

The majority of participants described the Maasai upholding their traditional lifestyles, including human population movement. The regular movement of these communities resulted in potential patients being difficult to find and are often missed.

All the participants believed that the logistical difficulties as a result of the traditional way of life meant that programmes were not properly implemented in the target populations.

We think in some villages, which I’ve just said, the difficult to reach areas, maybe they don’t go to every house. [P11]

Most of the participants described that their programme was often received with some scepticism from patients due to the programme being offered by people coming from outside their community. Several participants noted that this was in part due to the language barrier between the field staff and the Maasai communities, as many of the Maasai only speak Maa and not Swahili.

Language barrier, again, as I said, I told you Maasai don’t necessarily believe someone who’s coming from outside the community. [P6]

Most participants emphasised that hierarchy within the communities is very prevalent and there are different stratifications of the community based on age, sex and status. The stratifications must be respected and there is an expectation that recommendations made by those higher in the community hierarchy are to be followed. The community hierarchy can therefore either facilitate or impede programme implementation, depending on the outlook and influence of the influencer.

It’s the specific people in the Maasai communities that are sort of the elders, the respected people. If you don’t get their buy in, if you don’t invite them to the sensitisation, people aren’t even going to go to your camp at all. [P10]

Some participants felt that the community hierarchy extends to traditional healers and their health beliefs to some extent. Many of them are respected members of the community and therefore members of the community trust them to treat their eye diseases.

They believed that these traditional healers can help them… they can heal other problems, but not trachoma. [P11]

Participants remarked that these healers do not tend to compete with the treatments that their programme offers. They found that traditional healers are often accepting of having healthcare alternatives for their community members, even if it is provided by someone outside their community.

I think they think of themselves as an alternative treatment for someone who can’t afford or doesn’t want or doesn’t believe in the modern medicine, but I don’t think they actively discourage people from getting modern treatments. [P10]

In regard to the implementation of the programme, four participants highlighted that the programmes are provided free of charge to the communities. As a result, the financial status of the community was not considered a barrier.

Although the programme itself is covered in terms of cost, some of the participants described that there may be some additional costs for the patients seeking treatments for surgery, such as cost of travel to reach the treatments, which acts as a barrier.

But within that, there are many things which are being found to contribute to the low uptake or refusal for surgery and there could be simple things, for example, people do not have money to travel to their surgeries. [P12]

Most participants acknowledged the benefit of having the involvement of the government in trachoma interventions and appreciated the support they received, which facilitates the intervention. Many of the participants had the impression that the government felt that trachoma is a priority on a public health level.

Through this of course the Tanzanian government has worked very hard with, together with the partners to bring down the level of trachoma, the disease. [P12]

The political will of the government at the district level was important when it came to how rapidly the programme could be implemented. Additionally, whether a programme can be implemented or not is dependent on the political drive to carry out such changes.

We see that political people plays major roles in trying. So if a politician works together with these people [clicks fingers], things really works very well. [P11]

Despite the best intentions of the government, participants noted that there are still inefficiencies in the implementation by the government. The lack of government resources and funding to carry out a complete programme was a frequently mentioned issue, and resulted in people in trachoma endemic communities being missed or not reached.

I’m concerned about us trusting that embedding things in the national government is going to solve all our problems, I don’t believe that to be the case. [P10]

Several participants noted that case-finders, who find members of the community with trachoma on behalf of the implementing partners, were not being paid much, if at all. Participants found that it often disincentives high quality work.

Those village level people need to be paid fairly for their efforts…I mean no wonder they’re not filling in the registers [P10]

This theme explores how factors specific to trachoma, either the disease itself, the beliefs of the people on the disease and its treatments, affect the implementation of trachoma interventions.

Participants reported that there is some awareness of trachoma, owing to the historical presence of trachoma within the communities.

Remember trachoma is been living with them, they’ve been living with trachoma for years, before it started modern treatment. [P6]

Several of the participants described patients epilating their eyelashes in order to alleviate pain and prevent blindness. However, this does not necessarily mean that the Maasai make a link between inverted eyelashes and trachoma. As trachoma has been prevalent in their communities historically, it is assumed the inversion of lashes is a normal part of the ageing process.

They make their own little tweezers out of metal and hang them around their necks. Trachoma’s not, it’s actually probably not making as many Maasai people blind as it is other people. [P10]

However, generally most participants found that the knowledge and understanding of trachoma is often poor. The most misunderstood aspect of the disease was the causes of the diseases. More than half the participants outlined that patients did not recognise that the disease is an infection spread by flies and believed in various causes such as trachoma being hereditary or witchcraft. These misunderstandings render implementation of the programme more challenging.

Participants also established that patients often had misbeliefs regarding the treatments provided by specific programmes, which acted as a deterrent in uptake of treatment. These beliefs often arose due to seeing others have bad experiences, such as side effects or confusion with other conditions. Rumours within the communities also serve as a barrier to accepting treatment, which result in propagating misbeliefs, especially when they conflict with the knowledge being advocated by programme implementers. A few participants elaborated that some patients, after undergoing trichiasis surgery, developed blindness due to a different ophthalmic condition. However, the patients incorrectly believed that the loss of vision was due to trichiasis surgery.

If you offer surgery without telling them that you also have cataract, or glaucoma, at some point, they will end up being blind, due to cataract or glaucoma, so they tend to associate the [trichiasis] surgery with the vision loss [P7]

Several participants described a disconnect between knowledge and action, due to the lack of available facilities and infrastructure to carry out good hygiene and maintain a clean environment. Even if the members of the community have sufficient knowledge to carry out the necessary behavioural changes to reduce the spread of trachoma, they cannot change their practices due to the lack of available resources.

With trachoma being an ocular disease, the majority of participants mentioned that the eye is a particularly sensitive area. Some participants described that patients from marginalised or Maasai communities were more reluctant to receive surgery in the fear that the treatment will render them blind, as being able to see facilitates their lives.

Maasai people depend on being able to see, because they’re pastoralists. They need to be out there, walking their animals, they’re not living in a house. [P10]

This effect is compounded by the fear of surgery in general. As many of the Maasai people are unaccustomed to or scared of the idea of surgery, having an operation on a sensitive area of the body presents some difficulties when convincing patients to receive treatment.

I think generally, in the African setting, the moment you say that you are going to operate somebody, [laughs], the moment you are offering surgery, everybody, on almost anything, then you can imagine now, even with the eye, then it becomes even more challenging. [P12]

Many participants remarked that community members did not understand that trachomatous inflammation and trachomatous trichiasis was caused by the same disease at different phases of disease progression.

By the time they develop trichiasis, which is the in-turning of eyelashes, they don’t have infection. The infection was some years ago. So by the time they develop trichiasis, they don’t have infection. So they think they are fine. [P11]

This lack of understanding of the disease progression has negative implications on the implementation of the programme. One participant elaborated that some patients no longer trusted azithromycin because their disease had progressed to trichiasis despite having been given MDA previously.

This theme explores the considerations that are made when deciding what and how the organisation implements the trachoma interventions. This includes whether the intervention tailors to the community needs, whether it is financially feasible and whether it helps improve the quality of the programme.

All the participants recognised the importance of tailoring programmes for specific communities. This requires good cultural understanding on the part of the implementers in order to improve uptake of interventions.

So we are trying to make sure that we offer service, but also, they [members of the community] should be comfortable that the service doesn’t interfere too much with the culture [P6]

Several organisations also recognised that different communities have slightly different needs, and this results in making decisions to adjust each programme accordingly. Therefore, having flexibility within the organisation is a facilitator for successful implementation of programmes.

Most participants outlined that having quality checks are crucial to making decisions for an effective programme. The quality checks allowed for progress to be monitored and therefore improvements could then be made if the programme is found to be poorly implemented or negatively affecting patient care.

From the auditing, we confirm that two of the surgeons were not doing good surgery. So they were, they were mentored but it seems they were not improving and we asked them to stop doing surgery and the number of surgical failures dropped down. [P7]

All the participants felt that the ability to identify problems and reflect on them was an important asset contributing to decision making in an organisation. It was also noted that much of this reflection is done alongside other organisations or the government.

Part of the annual planning identifies the gaps, ok, so when you get new partners and the government is able to suggest where it is that they would add value. [P12]

All the participants mentioned that research improves the programme quality as well, and several of the participants elaborated that the findings from research have been used to develop manuals that guide programme implementation.

The WHO and other organisations assign [us] to play a role for capacity building and also for research, and developing the manuals. [P6]

Nearly all the participants affirmed that the amount of available funds dictates the activities of the programme, and adjustments are sometimes needed in order for the programme to fall within budget.

Funding is within the budget, you have been given a ceiling. And you have to plan things according to that ceiling. If I get more funds, of course, I will design other things of going to do, maybe I can increase the number of going to the houses. [P11]

There is a discrepancy in the funds directed towards the S and A compared to F and E. Organisations tackling F and E interventions elaborate more on not having enough funding to do a well-rounded or comprehensive, district-wide programme, compared to the organisations focusing on S and A interventions.

Yeah, F and E is very challenging and then there are, as I mention before, even among the donors themselves, they are more willing to support A and S, than F and E. [P6]

This reflects the quality and quantity of the F and E programmes. Budget and finances are therefore a key factor in the decision-making aspects of a programme and participants recognise that there is an opportunity cost to every programme.

This theme explores how having multiple actors supporting trachoma control in Tanzania influences implementation of individual interventions.

Most participants discussed a sense of cooperation between the organisations working on trachoma control in Tanzania. Several participants elaborated that the cooperation is particularly enforced because each partner needs to put in their fair share of work to eliminate trachoma, since no two organisations has worked in the same district for the same interventions.

NGOs will bring in their funds, but also their experience, their expertise, but also they, the government will also bring in the staff and the other resources. So that’s the kind of partnership we want. If one of them breaks, then definitely the programme will not work. [P6]

A few participants felt that the cooperation among the different actors would provide opportunities in increasing the efficiency of the programmes. It was recognised that some parts of the programme could be done concurrently instead of as separate programmes.

What we are doing is how can we collaborate, to take advantage of, for instance…if they’re doing antibiotic mass drug administration, then that’s an opportunity for us to screen [for TT]. [P6]

It was also identified that each organisation has its own areas of expertise, and the way that the districts are split up between them optimises their programme to their abilities. The organisations therefore appear to rely on one another so that each district receives components of the SAFE strategy.

That’s outside of our scope, it’s also outside of our forte, we look to partner with organisations that have country offices and boots on the ground, who know the population and have hired nationals from that country who are very familiar with the region and the politics and the geography [P7]

Most participants stressed their appreciation of having quarterly meetings with multiple actors in order to discuss progress and programmes. The participants felt learning from other programmes provided them with additional experience in the field and exposed them to more effective solutions. Several participants also pointed out that learning of and comparing the progress between trachoma interventions by different organisations allowed them to reflect as to whether their programme was headed in the right direction.

Every three months, we sit together and do what we call programme review meeting. By doing that, we are getting experience of what others do… from what I know, we are, our NGO is doing well. [P11]

Several participants explained that there were more training opportunities for staff as a result of multiple actors in trachoma interventions. Type of training described varied between participants and some described sending staff to other programmes for observation, whilst others described attending workshops hosted by another implementor.

More than half participants outlined that having multiple actors working in districts in a non-overlapping fashion meant that there was variability in the success of programmes among districts.

I think some partners are, yeah, a couple partners work very quickly, find a lot of patients, seem very efficient. Some partners seem less efficient, find fewer patients. [P10]

Participants noted that there was also variability between different components of the SAFE strategy, each of which are generally managed by separate organisations. The majority of participants felt that the F and E aspects were somewhat lacking compared to the other two components and the most commonly mentioned reason for this discrepancy was due to less funding. Several participants attributed this to donors being less willing to support behavioural change interventions owing to the lack of measurability of the programmes and therefore could not see any discernible benefit from its implementation.

Even though some of the behavioural change aspects are handled by partners working on trachoma, the majority of participants highlighted that some districts had parts of F and E handled by organisations not necessarily focused on trachoma specifically, but on general hygiene and sanitation. A few participants discussed that although these general programmes did have some benefit, they may not necessarily be in-line with the most ideal trachoma control programme.

Where they think it is important for them to supply water is not necessarily what where we think from a trachoma perspective. Because they have the other plans. [P6]

And that no point, in any of their manuals, does it mention wash your face a couple times a day too. So that’s a huge gap. [P10]

NGOs described that simply providing behavioural change interventions is not sufficient, in both school-based and community-based interventions, if there are no facilities to actually carry out the change. Partners recounted various difficulties in funding, logistics, time and manpower as the main obstacles for erecting sufficient infrastructure, such as latrines or boreholes, for good hygiene practices. However, there is a certain degree of cognitive dissonance with this mode of reasoning, as it fails to take into account the biosocial needs of the community. In practice, even in the instances where such infrastructure has been built, explanations for why or how this equipment should be used is not always provided, giving little rationale for members of the local