Among the 39 study participants, 29 were male and 10 were female; the age range was 24 to 62 years. Ten people participated in the KIIs and 29 participated in the FGDs.
A range of themes and sub-themes were identified. Themes included burden of lymphoedema on affected individuals, misconceptions about NTDs, stigma and its mitigation, advantages of integrated care for NTDs, acceptability of the care package, outcomes of treatment, scalability and sustainability of care, while sub-themes included integration of care across NTDs, psychosocial care integrated with limb care, barriers and solutions to implementing the integrated care package, acceptability by patients and caregivers, acceptability by health care workers and acceptability by decision makers. The predetermined themes included stigma and its mitigation, advantages of integrated care for NTDs, acceptability of the care package, outcomes of treatment, and scalability of care. The themes that emerged during the analysis included burden of lymphoedema on affected individuals, misconceptions about NTDs, and sustainability of the care package.
Burden of lymphoedema on affected individuals
Podoconiosis, LF and leprosy can all lead to lymphoedema complicated by acute attacks, which are characterised by severe pain, fever, chills and difficulty walking.
Before starting the treatment I felt chills and rigor whenever I returned from work. I couldn’t even eat food because of the pain. I take a cup of coffee but am still in pain. That is the acute attack, which causes severe damage to our health and effectiveness in work [FGD Participant, 47 year old female patient]
The last two years were especially difficult for me; it gets difficult even to get out of my house. My family worried about me, others blame me that I fell while working. I feel weak. [ FGD participant, 49 year old male patient]
NTDs not only have devastating physical outcomes, but also tremendous social, psychological and mental health outcomes. Undermining personal dignity and exclusion from decision making roles and social activities were common experiences of lymphoedema-affected individuals. These experiences had a negative impact on the mental health of lymphoedema patients. As some participants stated,
In our workplace our work-mates used to belittle us due to our condition. They didn’t consider us equal for social or political positions, which is painful. [FGD participant, 58 year old female decision maker (DM)]
People with this problem definitely have mental health problems or these might happen in their lifetime. These mental health problems are neglected as there is not even one psychiatric professional in the health centre.’ [Decision maker, 31-year-old male]
Participants also reported that NTDs have a significant impact on the economy of the family and there is a possibility that more than one person in a family is affected by these diseases.
In a single family there may be three or four affected individuals. The affected individuals are poor as they can’t work due to disability. Even if they have farmland, they can’t cultivate it, rather they go begging. [FGD participant, 50 year old female community representative (CR)]
Burden due to stigma and discrimination
The community tend to stigmatize and discriminate against individuals affected by lymphoedema, a highly visible condition. They avoid marriage to individuals affected by lymphoedema, as they believe the disease will pass to their offspring.
There were a husband and wife with huge leg swelling in the neighbourhood, two years back she prepared ‘Tela’ (a local alcoholic beverage) and took it to the church to celebrate a holiday, but people refused to drink what she had brought. [FGD participant, 47 year old male patient]
Even in the case of marriage proposal, […..] if the man has a leg problem, the woman’s family do not allow their daughter to go to his family. They think that either the disease will be transmitted directly to their daughter or passed genetically to their grandchild. [FGD participant, 48 year old female CR]
The stigmatization is not only from the unaffected community but also from the patients themselves. The problem is not only from the other side, patients also isolate themselves fearing that the bad smell would disturb other people, so it is a two-way problem. [FGD participant, 28 year old male Health Professional (HP)]
Misconceptions about podoconiosis, LF and leprosy
For podoconiosis, most of the patients participating in the interviews thought that is was caused by a curse. Few mentioned barefoot contact with the soil for a long period of time as a cause.
People believe that podoconiosis is caused by a curse from God - even though they can afford to buy shoes, they don’t want to buy and wear them. However, had they known that walking bare footed is the cause of this illness, they will prioritize shoes even above food and drink. [FGD participant, 51 year old female CR]
Be it podoconiosis, LF or leprosy, most people did not understand that it could be prevented or treated medically. Similar to podoconiosis, they believed that LF and leprosy were caused by a curse from God. Most did not believe that leprosy is caused by a bacteria and LF by a parasite
Previously, there was no awareness about the disease; they considered themselves inferior to everybody and they thought the diseases had no cure but now we follow them and they know that if they preserve their hygiene there is a cure and it doesn’t transmit through blood lines. [HEW, 28-year-old female]
Some people think that we brought this on ourselves as we did something wrong that God didn’t like. It is a matter of education: those who are illiterate think like that, but the ones with some knowhow show us empathy and support in everything. [FGD participant, 47 year old male patient]
The misconceptions around podoconiosis, LF and leprosy are not limited to patients - there have been reports of misconceptions even among health professionals regarding the treatment of the disease (24). NTDs, especially podoconiosis, are inadequately addressed in health professionals’ training curricula.
I am a focal person at the health center. First, when I came to this profession, to tell you the truth, I was treating only other cases, and also the acute attack cases came due to this problem. We didn’t understand their [patients with podoconiosis] problem, despite providing pain relief for them. In addition, there was nothing that we got from the curriculum too. We didn’t know whether they will get improvement by foot hygiene. But at this time, after attending the training, first we know about it and we also create awareness in the community too. So, I believe that we will solve the problem. [Decision maker, 28 year old male]
‘I was shocked when I heard that there are about 251 cases [of lymphoedema] at Gugsa cluster. I mean, sometimes we do see those cases even though we don’t differentiate specifically whether it is podo or Lymphatic filariasis as both of them have similar differential diagnoses, we may not specifically know the case. Moreover, I may not have the reference book at the table, so, that means I may mis-diagnose the case at that time. Therefore, it is necessary to have an orientation. [FGD participant, 35 year old male HP]
Integration of the holistic care package into the primary health system
Perception of health professionals about integration of lymphedema care
To operationalise the EnDPoINT project, advocacy activities were started at the leadership level. Training on integrated care of the three NTDs and psychosocial care was provided to health professionals. Then awareness-raising workshops were conducted in health facilities. Community awareness was addressed through facilitated community conversations.
It is good to do things in an integrated way as you can save more time and resources. Therefore, integrating the care package of the three diseases in Gusha health centre proves we can achieve that. It saves much needed time and money, the pilot project shows we achieve the three cares in one. As I am a leprosy officer I gained good experience, got a lot knowledge that I didn’t have before. Therefore, the integration of treatment package was good and effective which needs to continue. [ Decision maker, 37 year old male]
Each of the diseases is currently included in the check list and I can tell you that they are being supported and the service is being provided. Even though these diseases were neglected during the previous times, at present, they are being included in the program. Hence, I think it will be strengthened more in the future and we will work more by collaborating with partner organizations to make the program more successful and to make sure the community benefits from it. [Decision maker, 42 year old male]
Perception of health professionals about integration of mental health care
Patients with lymphoedema stigmatise themselves and feel inferior compared to their healthy counterparts. Due to this, they are at risk of mental distress. Thus, integration of lymphoedema care with psychosocial-mental health care is very important.
Patients live stressed life and I don’t think that they feel good internally because they think they are discriminated against by others or may think they are inferior to others because they aren’t able to do what others can do for living, so including a psychological intervention benefits them more. [FGD participant, 62 year old male DM]
Considering the local health condition, previously mental health services were given only at hospital level, not at health centre level. However, through the CDT-Africa/EnDPoINT project mental health training has been given to health centre-level healthcare professionals. A three-day theoretical training and five-day practical training was delivered.
Mental health services were not being provided in health centres, it was totally an ignored work. [FGD participant, 55 year old male DM]
Mental health problems are neglected, there is not even one psychiatric professional at the health centre. At woreda level, training to give an integrated service was given to health professionals working in the health centres. This training was given for those who work on morbidity management to support the psychosocial-mental health care. Therefore, I believe the psychosocial work is a vital part of the treatment package and goes hand-in-hand with the treatment and prevention work. [Decision maker, 31 year old male]
Perceived barriers to integration of the holistic care package
One of the barriers to implementing integrated care comes from the patients themselves. After providing the health education and delivering start-up supplies to practice self-treatment, it is expected that patients continue to receive the services covering the costs necessary. However, they expect the cost of supplies to be covered by the government.
There are a lot of patients who are currently enrolled in the service and there are patients who got help before. Several patients want everything to be covered by the government, they want the government to give them all services for free. Maybe this will be a challenge. [Health professional, 30 year old male]
Inadequate dissemination across health workers
Another barrier is lack of cooperation from officers and health workers at the health center, as they consider the work to be only for the trained focal persons and heads.
There is a low level of awareness among health workers, except those who attended the training, since health professionals didn’t learn much about podoconiosis or LF from their college time. [Decision maker, 37 year old male]
Poor transport access
A further challenge is lack of transport. Either patients are poor and cannot afford transport to the health centre where the integrated lymphoedema care is given, or are too disabled to walk because of the leg swelling.
While they want to come here, they can’t find transport and may spend the night on the street. Since these patients are poor, they don’t have money for a ‘bajaj’ [A form of taxi with three wheels that can carry up to five passengers]. So my first request is to bring the service to health post level. [FGD participant, 57 year old male CR]
Acceptability of care package
Perception of patients
Patients were very comfortable with the integrated care package. They described how much relief the self-treatment brought. They acknowledged the government and the project for reaching them with such effective measures. They asked for more education and that the counselling services be continued. They were ready to purchase the materials necessary for long term management themselves.
First, the package has much more acceptance after patients have gone through the agony of suffering and see that it is better and more comfortable. They are accepting it very well and they are also strengthening the association by contributing money. [The package] is accepted by both the patients and their caregivers. [HEW, 26 year old female]
The patients say ‘GOD came to us, we were created as human but were not living like humans, but now we have become human again”. For your information the names of our self-help groups are very unique. For example, one of the name is “Fetari Dereselign” which means “the almighty God reached for us”, there is no satisfaction like this. [Decision maker, 31 year old male]
Perception of health care workers
Capacity building activities were delivered to health professionals, health extension workers and district officers. Following this, there was tremendous motivation in the health sector to implement the integrated lymphoedema package, and the providers gave special priority to the program. The health professionals were very happy about integrated care and they said that there had never been a job that gave them more satisfaction than this one.
The providers are delivering compassionate and respectful care. When demonstrating foot care they kneel and wash the feet. Previously they may have cleaned and cared for wounds, but not washed a patient’s feet. This project teaches us to be more humble and compassionate to our patients, to tackle problems more thoroughly. It is good to do things in an integrated way as you can save more time and resources. The integration of the three diseases gives us great experience for other diseases. [Decision maker, 37 year old male]
Now every patient you get will bless you. Every one we find is blessing us. This will push you to do more work. You will never have a reason to stop working while they are blessing you for what you did. So the health professionals are committed. The health professionals at the health centre will go to each kebele [The smallest administrative unit consisting about 1000 head of households] and observe patients’ progress covering their own transport cost. [Decision maker, 31year old male]
Perception of decision makers
Decision makers reported how impressed they were with the levels of collaboration seen in the community around the integrated lymphoedema package. They saw the introduction of the package as an opportunity for local government to get behind services clearly appreciated by the community.
I have been noticing the effectiveness of integration. After project initiation, all responsible bodies from zone to kebele level have been actively participating and helping us. When we go out to kebele level to conduct supportive supervision, [community] leaders and health extension workers are doing a great job in collaboration. [FGD participant, 28 year old male HP]
This is a condition that the government itself has previously neglected. But now attention is given, and using this attention as a good opportunity, the management is committed to make the service available and to help the community address the situation. [Decision maker, 31 year old male]
Outcomes of the holistic care package
Improved awareness about the cause, treatment and prevention of lymphoedema
Respondents noted increased understanding of lymphoedema and strategies to prevent it compared with the pre-intervention package situation.
Now people understand the cause and that it is possible to treat the disease. Everyone is urging the community not to go barefoot and to keep their feet clean. Even in the farming areas, they wear plastic boots. [FGD participant, 48 year old male patient]
Healthcare workers facilitated the establishment of self-help groups. These groups contain eight to twelve patients, and have a chairperson, secretary and audit officer. Each member contributes a specified amount of money each month. The main role of the self-help group is health education including disease prevention, health promotion, and stigma reduction.
I participated in the training for trainers of self-help groups. After my training, I have been closely following the members of our association. We use the association to educate each other and follow our progress. Following our education, we have been practicing washing our feet and skin care, which has brought many changes. People who have sleepless nights before are now enjoying their times peacefully. [FGD participant, 47 year old male patient]
Improved lymphoedema condition
Proper continuation of lymphoedema care resulted in considerable reduction of pain, of frequency of acute attacks and of the extent of swelling.
By now there is no problem at all. I was in pain all days of the month before I started this treatment, but now I haven’t had a single day of illness after following the advice from health workers. I follow every procedure as recommended and that makes everything well. Now I can wear size 40 shoes, while previously I couldn’t even wear size 43 shoes. [FGD participant, 47 year old male patient]
Continued lymphoedema care also resulted in increased productivity and improved quality of life.
After I started this treatment, thank God, I am in peace. Unfortunately, our fathers didn’t get this opportunity. Now I am farming equally as my friends do. Thank you so much, you help us a lot and [the package] improves our quality of life. [FGD participant, 49 year old male patient]
Some could barely move outside their home before starting treatment, but now they go out and do their business just like a normal person. Their feeling of shame about participating in social occasions because of the smell has gone. [Decision maker, 37 year old male]
Reduced stigma and discrimination
Patients and community members described changes in levels of stigma and discrimination they faced following implementation of the integrated care package.
Previously, people had a tendency not to eat the food we prepared. Now this education and community conversation comes. We use our knowledge to convince them, and some are changed for the good. [FGD participant, 47 year old male patient]
My sister used to prepare food to be served in the church but while the men ate it, the women did not. That hurt my feelings deeply. Now we’ve started this treatment and help each other with the self-help group, we wear our shoes and go out as equals to anyone around. My sister is following treatment closely and by now she is in a near normal condition. Recently in church, I have witnessed the girls who used to refuse the food take it as normal, and I feel happy to see that. [FGD participant, 53 year old male patient]
Perception on scalability of care
Patients, healthcare workers and decision makers all considered the integrated package to be successful and urged its wider introduction. Patients pointed to wider relief of suffering and returning more people to full lives in society, while decision makers stressed the importance they placed in the scientific rigour with which the package had been implemented and evaluated.
It would be good if this organization could work in other districts. While working on these activities, I believe that the health office will take the initiative to work in other areas which have similar problems. So, it will be very important for the community if you scale up the program to other districts so as to help the community to get rid of this problem and have healthy and productive citizens. [FGD participant, 52 year old male DM]
For the sake of people, if you continue the service in other parts of the country in which this problem exists, I am very happy. Because of the modality of the treatment, we are happy. [Health professional, 28 year old male]
We appreciate the follow up you are conducting on the progress of the patients. You are doing it in scientific manner, which is nice. You are helping the patients and relieving many sufferings. We even expect the ministry of health to take this idea and scale it up nationwide. [Decision maker, 32 year old male]
Perception on sustainability of care
One of the activities intended to ensure sustainability of the package was the training of trainers (TOT) for health professionals. Those who took part in the TOT were expected to cascade training to the remaining health care workers. This aims to protect against high turnover among healthcare workers, which has been a problem for the sustainability of other new healthcare interventions.
It is good to see as many health workers as possible trained in this to ensure the sustainability of the work after the project phases out. For us we will try to use every level of government to sustain it. [FGD participant, 57 year old male CR]
Another factor that might influence sustainability is the ability and motivation of patients to continue buying the simple consumables needed (for example, soap and ointment). Most of the supplies for hygiene-based lymphoedema management are easily accessible, for those with extensive swelling, shoes of an appropriate size are not available in any local shops.
The community has the awareness and they can even purchase the materials by themselves. Previously it was the organization that provides the materials. And they [patients] are so happy with the change they witnessed and consider it sustainable. [Health professional, 28 year old male]
We can find soap, Vaseline and other materials in the local shops, but shoes of our size are difficult to find, so that is the main problem to be addressed by the government. [FGD participant, 53 year old male patient]
Integrating lymphoedema care into the existing Health Extension Program (HEP) is another factor vital to the sustainability of the intervention. Decision makers suggested that since cost is one of the challenges for sustainability, incorporating the intervention into the HEP might reduce the long-term cost.
The government is trying to accommodate specific programs into the Health Extension Program. For example, personal hygiene is among the packages of the HEP, so we can take podo, LF, leprosy, skin care and washing practice and then contextualize them with the existing Health Extension Programs. The HEP is one of the most sustainable programs the government has, so we can use it to solve both the sustainability and budget issues. There are some efforts to include podoconiosis care in it. [Decision maker, 32 year old male]