The results were organized around the research objective, which was to investigate the capacity of local communities to address the burden of NTDs. The findings were summarized in Tables. The factors that matter most to the participants were based on the frequency of mentions (the number of times an indicator was mentioned within the categories) and the number of participants who mentioned the category on both groups (KIs and FGs), direct quotations were also used to punctuate the themes. Each quote was identified by a pseudonym, gender, age, and the data collection technique. The section highlights the current NTD programs in Kenya, followed by the proposed interventions from the communities (FGs) and the proposed NTD interventions or policies from the KIs.
Current NTD programs in Kenya
We found that the current NTD programs in Kenya are either donor-funded, government-funded, or community-initiated. Based on the responses from the KIs and FGs, our results demonstrate that communities still use alternative measures (Table 1) to manage NTDs due to poverty, ignorance, or the inability to access NTD interventions. Some of the community-initiated alternative measures highlighted by the KIs and FGs include the use of sodom apple, urine, washing detergent, and physical removal of the parasite to manage jigger infestation. There was also the use of hand tweezers to prevent eyelashes from scarring the cornea and provide temporary eye relief for persons infected with trachoma. In areas endemic for visceral leishmaniasis, patients visited traditional healers to cut the spleen and drain the kalazar parasites. While male patients experiencing hydrocele due to lymphatic filariasis infection opted to manually drain accumulated fluids in the reproductive tract or attend cleansing ceremonies to manage the condition when they could not access surgery.
Several NTD programs are currently implemented in Kenya, the most common being the school-based deworming program carried out by the Government of Kenya and its partners (Table 1). The KI had this to say: ‘We carry out periodic deworming to target school going children’ ((Peter, male 34 years, KI).
Another KI from the Ministry added that the school deworming program had decreased worm infestations and increased school participation.
‘The Ministry of Health and Education coordinates the school health deworming activities which has really assisted children to increase their level of participation in schools because most cases of the worm infestations have been reduced’ (Richard, male 38 years, KI).
The community members affirmed that deworming medication is distributed in schools. ‘Our children get the medicines for worms in schools. It has been happening for some years now’ (Jacklyn, female 40 years, FGD).
Our data revealed that most counties adopt the Community-Led Total Sanitation program (CLTS) in Kenya. For example, the female community member specifically stated that: In our community, the Ministry came with the CLTS program to prevent open defecation, and they said it also helps with reducing the transmission of worms. (Jacklyn, female 40 years, FGD). While the KI below specifically explained the meaning, goal, and challenges of the CLTS program.
‘My county, Busia, is aiming to be 100% CLTS compliant, meaning everybody should have access to a toilet by the year 2020. I know there are relapses, here and there, because some have constructed and it has collapsed but that is another question all together’ (Richard, male 38 years, KI).
Our results indicated that the CLTS program encouraged communities to build and use latrines with counties such as Busia looking into adding a Financial Inclusion Improved Sanitation and Health (FIISH) component. The FIISH component is expected to encourage communities to use latrines and find innovative ways to turn wastes into fertilizer and earn income.
At the community level, the FG participants revealed that WASH interventions (Table 1), which included providing safe drinking water through chlorine filters installed in water collection kiosks, were commonly available as explicitly stated.‘We have got WASH facilities[…] we have got water treatment at source and also point of use chlorine dispenser’ (Fatuma, female 30 years, FGD).
At the school level, we found that WASH interventions included personal hygiene, face washing, and the ‘Unilever School of 5’ as explicitly stated by the KI:
‘We are using the Unilever School of 5. Unilever [corporate company] has for a long time been dealing with school health and WASH, focusing on handwashing at five critical times: when somebody wakes up, before eating, after eating, after using the toilet, after blowing your nose or coughing–5 critical times using soap. They have been providing soap and water facilities to encourage children to wash their hands 5 times a day, so we are riding on that approach, and we have established under the trachoma program, something we call Super School of 5’ (Brian, male 50 years, KI).
Table 1. A table showing the current NTD programs in Kenya
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Key informants (n=21)
|
Focus groups (n=5) Total participants (46)
|
# of KIs
|
# of mentions
|
# of FGs
|
# of mentions
|
Current NTD Programs
|
|
|
|
|
Community initiated alternative measures
|
4
|
11
|
3
|
14
|
School based deworming program
|
7
|
27
|
5
|
25
|
Community-Led Total Sanitation program (CLTS)
|
9
|
15
|
3
|
17
|
WASH interventions • Chlorine filters • ‘Unilever School of 5’
|
2
|
5
|
4
|
25
|
Community sensitization
|
5
|
6
|
4
|
7
|
Community Mass Drug Administration (MDA) • Lymphatic filariasis • Schistosomiasis • STHs • Trachoma
|
10
|
19
|
5
|
34
|
Morbidity Management and Disability Prevention Program (MMDPM)
|
2
|
2
|
1
|
1
|
Indoor spraying
|
4
|
5
|
1
|
2
|
Outdoor spraying (fogging)
|
3
|
7
|
1
|
3
|
Mass dog vaccinations for rabies control
|
2
|
4
|
NM
|
0
|
Community level hygiene practices for wound management
|
4
|
7
|
1
|
3
|
Community outreaches
|
6
|
5
|
2
|
6
|
National school health policy
|
4
|
3
|
NM
|
0
|
Training of CHVs
|
7
|
15
|
3
|
11
|
Program assessment for onchocerciasis & Human African Trypanosomiasis
|
1
|
3
|
NM
|
0
|
Active case findings
|
1
|
1
|
NM
|
0
|
Training of medical personnel to carry out specialized services
|
4
|
7
|
2
|
2
|
SAFE strategy
|
2
|
14
|
4
|
8
|
Free surgeries and management services
|
3
|
17
|
4
|
17
|
The other interventions that were discussed by both the KIs and the FGs participants included community sensitization on NTDs; community mass drug administration for lymphatic filariasis, schistosomiasis, STHs, and trachoma; surgical programs for hydrocelectomies and Morbidity Management and Disability Prevention Program (MMDPM) for lymphatic filariasis (Table 1). The MMDPM involves providing a minimum care package to persons suffering from lymphedema, elephantiasis, or hydrocele. Other NTD programs that were discussed include indoor spraying and outdoor spraying (fogging) for vector control, mass dog vaccinations for rabies control (at least once every three years). However, mass dog vaccinations were not discussed in the FGs. At the community level, there were interventions such as hygiene practices (Table 1) for wounds caused by rabies, leprosy, and elephantiasis. While in remote areas, there were community outreaches for trachoma patients. Community outreach programs involved mass screening, treatment of minor ailments, trachoma, and cataract surgery.
Other ongoing programs (Table 1) included establishing and reviewing the National school health policy, which the KIs solely discussed. The National school health policy has eight thematic areas that guide WASH and deworming activities. There was the training of CHVs on intensive case finding for debilitating NTDs such as trachoma and lymphatic filariasis. Our analysis indicates that in 2018, Kenya embarked on a program assessment for onchocerciasis & Human African Trypanosomiasis (HAT) to begin the certification process for the two NTDs as stated explicitly by the KI:
‘We are seeing that for conditions like onchocerciasis, which we officially said had been eliminated, we still don’t have a concrete scientific basis to demonstrate elimination, so we are actually ensuring that we come up with processes that are going to demonstrate that yes, we do not have onchocerciasis and Human African trypanosomiasis’ (Simon, male 40 years, KI).
The same KI further revealed that there is ongoing case finding activities for leprosy and hydatid disease, as well as plans to operationalize the NTD database to capture real-time disease prevalence:
‘We have NTDs like hydatid disease[…], we are also looking at active case finding especially for leprosy, this one we just started so that we can pick up those cases. […] A big intervention is also data management. We have a lot of missing NTD data, and we are trying to initialize data around NTDs and operationalize our NTD database’ (Simon, male 40 years, KI).
The other initiatives commonly stated by the KIs and FG participants included training medical personnel to carry out specialized services such as trachoma surgeries and splenic aspiration to remove Kalazar parasites, eliminating overreliance on foreign organizations. In trachoma-endemic areas, there was the implementation of the SAFE strategy, which included Surgery, Antibiotics, Facial cleanliness, and Environmental sanitation (Table 1). In addition, there were free surgeries and management services for hydatid and Kalazar in static and outreach sites.
Proposed interventions from the communities
Our findings revealed that NTD programs in Kenya resulted from collaborative efforts between public and private organizations. The community members in our discussions acknowledged a gap in community sensitization for NTDs (Table 2). As a result, rural communities still used alternative measures (Table 1) instead of conventional medicine to manage NTDs due to high poverty levels, ignorance, and lack of access to health services.
Table 2: A table showing the proposed NTD interventions from the communities
Proposed Interventions from communities
|
|
Focus groups (n=5) Total participants (46)
|
# of mentions
|
Community sensitization
|
4
|
4
|
Political goodwill
|
4
|
7
|
Improvement in WASH facilities
|
3
|
9
|
Access to care, treatment, and UHC
|
4
|
7
|
Adequate patient health worker to patient ration
|
4
|
9
|
Proper diagnosis
|
4
|
13
|
Indoor spraying and vector control
|
4
|
4
|
Environmental sanitation
|
4
|
9
|
Early physical examinations
|
5
|
7
|
Counselling services &support groups
|
5
|
15
|
We found that communities proposed continuous sensitization to minimize ignorance. Furthermore, the individuals we interviewed stated they would like to see more political goodwill from the county governments to provide an avenue for community empowerment.
‘I would like as a member of this community to be sensitized because there are certain things, we can do on our own to prevent these diseases. We need to live in a clean environment, we need to be educated, not to stay out very late or even sleep outside like it is the norm with some of us because that is where the mosquitoes find and bite you’ (Micah, male 52 years, FGD).
In terms of political goodwill, this participant had this to say:
‘For me, I think there is a lot of laxity from the government. They keep asking us back and forth about our health concerns without any action, so for me, I see that there is a lack of seriousness even in terms of followup for NTDs (Tina, female 43 years, FGD).
Another recommendation was an improvement in WASH facilities, which included providing piped water, water treatment facilities, and the construction of latrines up to the household level. ‘Another thing that brings the disease is unhygienic conditions. So, we have to have hygiene in our households. We need to have clean water and latrines’ (Linda, female 40 years, FGD).
Regarding WASH facilities, the respondent below stated that:
‘I just want clean water, to say the truth; we do not have clean water here. The water that is here is shared by human beings and livestock. That is why we will continue getting sick if the government continues to marginalize us. Because we have asked for clean water and we have not received any till now. We get our water from the river, which is also contaminated by livestock’ (Maureen, female 34 years, FGD).
At the health facility level, access to care and treatment (Table 2) was required free of charge or at an affordable rate as Kenya works towards providing UHC to its citizens; the present National Health Insurance Fund (NHIF), as it is, has remained unaffordable to many. ‘For me, it would be that anyone who has an NTD can access treatment and care at an affordable price so that they can continue with their life and if possible, the treatment should be free’ (Fridah, female 45 years, FGD).
The respondent below affirmed that NHIF was available to a few people, most of whom were employed.
‘The other community health workers and I are covered by insurance and just a few who are employed by other sectors, but the majority here do not have an insurance cover, if you miss the money, then you miss treatment, the government should provide insurance for poor people’ (Jack, male 24 years FGD).
There was a need for an adequate ratio of a health care worker to patient ratio and the proper diagnosis of NTDs in the health facilities (Table 2).
‘We need adequate doctors in the health facilities so that we do not go very far for health services. We also need a proper diagnosis so that people get the treatment that is accurate’ (Tina, Female 42 years FGD).
Other proposed interventions included indoor spraying for vector control, environmental sanitation, and early physical examinations, especially for hydrocele patients (Table 2).
Regarding vector control and environmental sanitation, this participant stated that:
‘There should be a program for indoor spraying of mosquitoes and fleas. As a community member, I think we should keep our environment clean. We can have the government help us to maintain cleanliness, so we avoid the bushes, raw sewage and flies everywhere’ (Jacklyn, female 40 years, FGD).
On early physical examinations, especially for hydrocele patients, this participant specifically stated that:
‘When you get sick and go to the hospital, the charges are high. This makes people have alternative means such as temporarily draining hydroceles. If treatment were free or at an affordable price, we would not have many problems. We as men also need to have physical examinations from time to time to capture the disease at early stage’ (Fahim, male 30 years, FGD).
Another participant added, ‘I need my body to be checked; I need medical examination to determine if I have hydrocele before my reproductive parts get swollen’ (Jack, male 25 years, FGD).
The communities also noted that counselling services and support groups for people infected with long-term disabling NTDs such as leprosy, elephantiasis, trachoma, and snake bites are lacking (Table 2). For example, this respondent noted that such support groups could be used to share information on what is expected of the conditions. ‘It will also be nice to have government initiate support groups for people infected with NTDs, just like there are support groups for people having HIV/AIDs (Anne, female 38years, FGD). Furthermore, ‘[…] the availability of counselling programs for people infected with NTDs so that they do not die of stress from stigma (John, male 47years, FGD).
Proposed NTD interventions/policies from key informants
In as much as Kenya has made strides in NTD control activities, there is more that needs to be done. For example, NTD interventions coordinated by the Ministry of Health, the Ministry of Education, County governments and other stakeholders need to be integrated (Table 3).
Table 3: A table showing proposed interventions from key informants
Proposed Interventions from Key informants
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Key informants (n=21)
|
# of Key informants
|
# of mentions
|
Intersectoral collaboration
|
3
|
8
|
‘Bottom-up’ capacity building
|
5
|
12
|
Sensitization and behaviour change
|
4
|
17
|
Counselling and support services
|
6
|
22
|
Enforcement of NTD legislative acts
|
3
|
4
|
Improved vaccination services
|
4
|
5
|
Enhanced water supply and storage in urban and rural areas
|
3
|
7
|
Infrastructure improvement and use of protective gear
|
3
|
4
|
Research on the climate on NTDs
|
1
|
1
|
Alternative economic activities and food policy
|
2
|
3
|
Our KIs proposed collaboration within the ministries and County governments and also between the ministries and the affected populations, for example, the Ministry of Water working towards the provision of WASH facilities, the Ministry of Agriculture empowering communities on alternative economic activities that promote food security and livelihoods, the Ministry of Veterinary Services providing sustainable vector control services to the communities, the Ministry of Public Works exploring ways in which infrastructure can be improved, for example, building better roads and bridges, proper drainage systems and engaging the political class at the county government to oversee the implementation as noted by the respondent below:
‘I feel there has to be an integration of all NTD stakeholders and other sectors including housing, agriculture, veterinary- they should all be brought on board so that they can know their role in this. An NTD-infected or affected person, they require food. Suppose we can bring in somebody who is an agriculturalist, who can tell them now that in Ganze[Constituency] you do not have rain. Can you plant this for your benefit? So, I feel that the interventions should be integrated. All other sectors are brought on board to address the problem of NTD’ (John, male 32 years, KI).
There is a need to engage communities through capacity building using the ‘bottom-up approach’ around NTD control. This should involve forming active community committees comprising of health workers, CHVs, and individuals in the community for health education and NTD surveillance:
‘I think one important area we need to take is a bottom-up approach and not thinking for the community but also getting the community to give their ideas especially when we are formulating this policy, engaging the communities to give their perception on what policy and what they want these policies to address’ (Mark, male 50 years, KI).
Similarly, it was suggested that NTDs need to be included in the school curriculum for sensitization and behavioural change among young adults:
‘I think the education of diseases and neglected diseases, for instance, needs to be part of the curriculum for students. I think we should have an integrated curriculum that is able to take all this NTD information and put it together in a package that can actually be delivered to the students and to the communities holistically and cheaply and much more efficiently’ (Tom, male 41 years, KI).
Individuals suffering from long-term debilitating and disabling NTDs such as leprosy, elephantiasis, trachoma, and snake bites require counselling services and support groups (Table 3) to help them deal with the psychosocial effects of NTDs as specifically mentioned below:
‘Because like HIV/AIDS they have a social group and they know each other, and they support each other just like diabetes they know each other. But for elephantiasis or leprosy, we have not started such as a county/country. Maybe we can, we can think of that as we have launched the MMDP, Morbidity Management and Disability Prevention Program. Maybe we can think of that so the people within a certain area can be meeting to socially support each other and give advice on the things they are supposed to be doing for example, how they are supposed to take care of their swollen legs’ (Mark, male 50 years, KI).
Another KI respondent specifically added:
‘As an intervention, we need to educate, counsel and support those who are having NTDs such as elephantiasis, to accept the situation and try to live with the disease because there is no further intervention once the legs are swollen. They have to know that once they take the medication, the transmission will stop even though their legs will still be swollen’ (Jemimah, female 50 years, KI).
The KIs suggested that legislative acts (Table 3) around the treatment of NTDs need to be enforced for highly infectious NTDs. For example, Section 84 of the Public Health Act CAP 242 states that persons receiving treatment for leprosy need to be followed up to ensure that they adhere to the treatment regimen as stated below:
‘If we can borrow and understand the Constitution of Kenya, that everybody has a right to life, everyone has a right to health, then it can be emphasized, and everyone sensitized to adhere to their treatment regimen. We have Public Health CAP 242, which focuses on those people suffering from infectious diseases such as leprosy. There is an intervention that if a person does not come to take medication, by law, we have a right to follow and assist that person in taking up medication’ (Simon, male 40 years, KI).
The KIs discussed an improvement in vaccination services, with NTD vaccines such as rabies being part of the Kenya Expanded Programme on Immunization (KEPI) rather than on-demand vaccines when dog bites occur:
‘If I were directly involved in the passing of health policies for NTDs, I would move the rabies vaccines from being an on-demand vaccine and make it a part of the expanded program of immunization[compulsory vaccines]. The reason for this is that a child needs not to have money to get the measles vaccine; I think a family needs not to have money to be saved from the deadly rabies virus. So it is moving those vaccines to be completely free because they are lifesaving and they are too expensive for the people that are marginalized. Number two thing is that I would put money to eliminate the disease at the source. In fact, rather than spend millions of shillings buying the vaccine on the human side, I would spend a bit of that money buying vaccines on the animal side and making sure that they are well funded because if they remove the disease in the dogs, then the humans are safe and it is cheaper, actually much cheaper’ (Tom, male, 41 years, KI).
Additionally, regular mass dog vaccination (Table 3) programs need to be made free or affordable to prevent transmission as Kenya works towards providing UHC to its citizens, as stated by the respondent:
‘In terms of government structures that would enable control and elimination of NTDs such as rabies within the country, I think what might work best is the universal health care. A County like Makueni has been trying that for the last one year–A family pays 500, then they are able to access health services at a subsidized rate. For instance, if you are a member of the universal health care system within a county like Makueni county and you are bitten by a dog, then there is an availability of PEP [Post-Exposure Prophylaxis] for you to get’ (Tom, male 41 years, KI).
Other proposed interventions included enhanced water supply in urban and rural areas; in cases of water rationing, there were suggestions to have proper water storage both indoors and outdoors to prevent the breeding of vectors such as mosquitoes which transmit dengue, chikungunya and lymphatic filariasis as specifically stated below:
‘You find that we tend to store water out of panic, we are not sure if we will have water tomorrow, we tend to store water, and we don’t store it well- we store it uncovered, or we store it for long in tanks. As long as you store water for a long period of time, this is where you enhance the breeding of the mosquitos. In Msambweni [Constituency], I remember there was one bathroom we went to just check, there were about 10 buckets, and I may show you a photo towards the end. They keep the water so that when you want to shower, you just need to grab your soap and towel, and all these were breeding areas for the vector. So, to them, yes, they have stored water, which is available when they need it, but so long as it stays for more than a week a lot of breeding is happening’ (Brian, male 50 years, KI).
On the use of infrastructural improvement and protective gear, communities need to be educated and empowered to use protective gear such as gumboots when carrying out economic activities such as rice farming in stagnant water. ‘Let us teach the community the importance of using protective gears such as gumboots in stagnant water. The water gets to the knee level, which can lead to infections with schistosomiasis (Jeff, male 42 years. KI). Likewise, classrooms require cemented floors for jigger control because children spend most of their time in school.
‘We need to do spraying in those schools with the jiggers. As public health officials, we know that children are getting infected in the schools [because they do not have cemented floors]. We need to get those classrooms cemented, and it is easy to do this since schools are organized structures (Richard, male 38 years, KI).
The KIs suggested that the research gap on the influence of climate and habitat on NTD infection (Table 3) needs to be addressed as stated below:
‘The climate is changing, which is a big issue, which means the vectors can now expand their territories when it warms up. We need more research on climate, habitat and so on, to really understand what happens and for the government to put the systems in place as it warms up’(Richard, male 38 years, KI).
Furthermore, there is a need to have brainstorming sessions with community members on alternative economic activities that provide less exposure to NTDs, as stated below:
‘In terms of economic empowerment, that is currently way above the NTD unit, but it is something to think of in the future. The government of Kenya has goodwill and is trying to transform the quality and living standards of every Kenyan; we need to propose and adopt a multi-sectoral approach to deal with these NTDs. For now, I can assure you that the NTD unit is willing to pass across community education and, in the future, brainstorm with community members on alternative economic prospects. These people know how they acquire these diseases, and most of them do so when carrying out their main livelihood[…] their main source of livelihood’ (Simon, male 40 years, KI).
Furthermore, establishing a food policy around NTDs will help address issues of malnutrition and anemia, which contribute to the long wait times associated with the treatment of certain NTDs. For example, malnourished and anemic individuals suffering from Kalazar and hydatid cysts require a blood transfusion before they can begin NTD treatment.
‘We need to have a comprehensive food policy that is crafted in a way that it is able to take care of issues regarding NTDs such as kalazar, hydatid cysts and malnutrition; when you tackle the issue of food, there are several things you can be able to cover such as hygiene, sanitation, and water. This is where I could prioritize most, the issue of water. Yes, cause minus water, there is no life and no food. However much we talk of the sanitation and all those other things, unless you provide water, at the end of the day, you will still not get anywhere. So that is where I could prioritize most’ (Walter, male 52 years, KI).