Eighty-eight participants were included; forty male and forty-eight female. Participants were aged between 16 and 75 years. The following factors appeared to be related to discontinuation of clinic visits among podoconiosis patients.
Remoteness from the clinic site
Distance of clinic sites from patients’ homes, coupled with physical disability and difficulty finding and affording transport, are prime reasons for non-adherence.
"I began treatment when it was being provided in a town named Badesa. It took me three hours on foot to get there. I tried to visit the clinic for some time but stopped when my feet developed wounds[In-depth interview informant, a 30 year old female patient]."
According to some FGD participants, there are no modern forms of transport in the villages in which podoconiosis patients live. Patients living in such areas are forced to walk long distances on foot, making attendance very difficult.
"There are villages where there are no means of transport. The only alternative for patients in such areas is to walk on foot. But, to walk long distances for a podoconiosis patient is challenging. Thus, some patients refrain from visiting the clinic sites located far from their residence[FGD participant, religious leader, 30 years]."
Even if transport is available, patients may be unable to afford it.
"I sometimes postpone visiting the clinic when I have no money for transport. I avoid walking on foot fearing wounds that may develop. When I walk, my foot immediately develops wounds, so I remain at home in such conditions[In-depth interview informant, 16 years]."
Some of the FGD participants thought the problem of distance was even greater for older patients.
"A lot of older patients stop visiting the clinics. They find it difficult to walk long distances. Some older patients send their children or other individuals to the clinics[FGD participant, 50 years]."
Responses from the study subjects indicate that the existing services are not accessible enough to patients living in remote places. Several stated that expansion of services to remote rural villages was likely to improve clinic attendance.
Expectations of ‘special’ support
MFTPA staff thought that some patients came to the clinic sites expecting aid in the form of material or financial benefits other than treatment supplies from the organization. Such patients visit the clinic once or twice and stop after realizing that there is nothing ‘special’ beyond the treatment program.
"Some patients think that they deserve special support just because they are patients. Such patients stop visiting the clinic after realizing that there is no special benefit. They don’t even consider that they are getting the treatment for their own health[FGD participant, clinic site health agent, 34 years]."
The misconception that other patients who make regular visits get special benefits from the non-government organization is a ‘pull’ factor for some. Patients who begin with these misconceptions soon stop once they realize that there is no special advantage.
"Once, I approached a podoconiosis patient who had stopped receiving clinic treatment. I asked him to begin treatment again. He replied ‘You wouldn’t knock at everybody’s door unless you received some special privilege in our name’. I was shocked when the man reacted in such a way[FGD participant, clinic site social worker, 28 years]."
Seeking special aid becomes particularly common among patients during times of drought or famine. At these times, patients fail to make regular clinic visits. According to the MFTPA Social Work Department head, patients openly ask the organization to provide them food and other forms of aid in such hard times.
"Patients expect something from the organization during drought and famine. During these seasons it is quite difficult to provide only treatment supplies while patients are literally suffering from starvation. As providing food items and other aids is not the role of this organization, some patients abandon visiting the clinics until they pass those hard times[Key informant, head of MFTPA’s social work department]."
Worry about increasing stigma
Podoconiosis patients are deterred from seeking treatment because they fear this will reinforce stigma against them. Since the clinics at which treatment is offered are for podoconiosis patients only, some patients fear that attendance will identify them as having the disease.
"I was making house visits that day. I heard that there was a child who had stopped attending the clinic because his parents did not wish him to attend. I asked his parents why they prevented the child from visiting the clinic. Their immediate response was ‘there is nobody sick in our home’. What I understood from their response is that they feared being identified as having a podoconiosis patient in their family[FGD participant, community leader,32 years]."
Worry about increasing stigma also affects the health seeking behavior of patients with early manifestations. Patients with early manifestations avoid visiting the clinic sites in order to avoid public identification. These patients do not want to be identified as having podoconiosis. In the early stages, they hide their feet by wearing long clothes and shoes, and only start seeking treatment once the swelling becomes difficult to disguise.
"When we tell some patients with early manifestations of podoconiosis to come to clinic, they respond abruptly that they are not sick. They don’t like to be pointed out as “gedya kita” [local name for a swollen foot]. I know a lot of patients who neglected our warnings but later started to receive treatment after the swelling had progressed to more advanced stages[FGD participant, clinic site health agent, 30 years]."
Some family members prevented children or other dependents from using the treatment supplies they collected from the MFTPA outreach clinics because of the discomfort they feel about the smell.
"I live with my aunt. Once, she said ‘all your feet, your shoes, and the medicine you use are stinky’. It suffocates the house. She thought it is a big humiliation when people enter the house. She then threw both my shoes and the bleach outside. As a result, I was discouraged to receive treatment kits [In-depth interview informant, 18 years]."
Recurrent illness prevents patients from attending clinic regularly. Patients become ill with acute adenolymphangitis (ALA): attacks of fever, pain and increased swelling of the leg related to super-infection, physical injuries or strenuous activity. During such an attack they may become bedridden for days or even weeks. Consequently, they cannot attend clinic and thus do not collect supplies necessary for treatment.
"I remember it was when I was coming from the market. I went to the market to sell something. It was very hot and sunny. I was standing long hours in that situation. Finally, when I was coming home I fell down in the middle of the road. People gathered together, carried me and took me to my home. I was completely unconscious when all that happened. I stayed on bed for weeks until I recovered[FGD participant, clinic site health agent, 32 years]."
"Walking long distances and working long hours on the farm is not good. It brings big swelling in ‘ankakuleta’ [a local name for swelling of lymph nodes] and blocks any movement, and then brings headache and shivering. The illness may stay for weeks and prevent collection of treatment supplies [In-depth interview informant, 35 years]."
Injuries of the foot also cause illness to the patient. A 28 year old in-depth interview informant indicated why he could not consistently collect treatment supplies.
"I missed clinic for four consecutive months. I was cut by a sharp thing while I was working on the farm. It took four months for me to recover. At that time I had no-body to send to the clinic to bring the treatment kits. The pain and the swelling worsened."
Misconceptions about treatment
According to FGD participants, patients with podoconiosis make great efforts (using both traditional and modern forms of treatment) to treat their feet. If, despite their effort and expense, they do not see improvement using one form of treatment, some doubt that any treatment will be effective. According to a FGD participant,
"There is a person who I know in my village. He has been suffering from the disease for many years. He went to many places looking for holy water and went to several hospitals, but did not see any improvement. His foot was getting worse whatever he did. Once, I informed him about the podoconiosis treatment. But, he would not believe that his foot might recover. After repeated visits to his home to tell him about the treatment, I managed to bring him to the clinic site so that he saw some improvement after consistent follow-up[FGD participant, 42 years]."
Failure to experience immediate improvement after receiving podoconiosis treatment may also make some patients stop attending. Some in-depth interview informants indicated that they had stopped visiting the clinics thinking that the treatment was not effective.
"I stopped going to the clinic site when I couldn’t see any improvement. I was eager to get normal feet back. But it did not happen. But the condition of my foot deteriorated after I stopped receiving treatment supplies[In-depth interview informant, 22 years]."
Even though patients are consistently advised that they need to stick with the lymphoedema treatment regimen, some patients still discontinue treatment. According to a clinic site agent, “most patients come to the clinic sites expecting to get immediate relief, so they become disappointed and stop receiving treatment when they fail to experience improvement”.
In contrast, there are also some podoconiosis patients who experience improvement soon after starting treatment. Such patients think their feet are healthy again, and stop attending. They may only restart treatment when their feet deteriorate and develop increased swelling, wounds, or mossy changes.
"I stopped taking the treatment kits thinking that my foot was cured. After four months without treatment, my foot started to swell up again. I started the treatment again after I experienced further complications[In-depth interview informant, 30 years]."
Such patients are misled by the improvement they experience after following treatment for a short time. The clinic site agents stated that they repeatedly warn the patients not to stop treatment irrespective of improvement as the disease may progress due to further exposure to the environmental trigger. According to the clinic site health agent,
"Some patients come to the clinic site when they get sick but stop after seeing some improvement. We teach them not to quit the treatment by stressing that the disease needs lifelong care and treatment.[FGD participant, 34 years]."