Overall, 46 individuals (27 males and 19 females) participated in the study. Half of the community FGD participants, half of the researchers and one of the fieldworkers interviewed were females. All interviewees from MFTPA management and kebele offices were males. The age of the respondents ranged between 23 and 70 years. The educational status of the fieldworkers ranged between early secondary level and college level education. Most of the community interviewees had had no formal education.
Social stigma associated with podoconiosis
There were considerable variations among community members' understanding of the causes of podoconiosis including genetic susceptibility, snakebite, direct contact of feet with clay soil, contagious, curses from God and poor nutrition. Other less commonly mentioned reasons were injuries (e.g., cut with axe), exposure to condensation, washing feet in hot weather and the evil eye. Genetic susceptibility was the most frequently reported cause of podoconiosis and this belief was observed to play a central role in stigmatization of podoconiosis affected families.
Participants from the community unanimously described podoconiosis as a condition that results in debility, poor self-confidence, social isolation and poverty. The local vernacular term for podoconiosis is gediya kita, which means leg swelling and is used as a derogatory term. Stigma against podoconiosis patients is multi-faceted and extensive. Manifestations of the stigma commonly mentioned by participants were (1) unwillingness to marry a diseased person or anyone from a podoconiosis-affected family; (2) shunning of patients and family members; (3) avoiding physical contact with patients; (4) excluding patients from social events like weddings and funerals; (5) spitting on patients; (6) pinching nose when walking past patients at a distance; (7) unwillingness of classmates to sit with patients at the same desk in school; and (8) unwillingness of unaffected family members to approach an affected household member. Consequentially, patients feel guilty, hide and isolate themselves from the rest of the community members. Most patients described it as 'the worst disease' mainly due to its negative social consequences and absence of an effective cure at the advanced stage.
In my opinion this is the worst of all diseases. It is better to die than catching this disease because it keeps you at home and you starve and thirst while you are alive. [Male participant]
It breaks the social bond even with loving friends. [Female participant]
They see people from leg to head, not up down. A healthy person never likes to marry a podoconiosis patient. An unaffected lady never likes to marry a podoconiosis-affected man. [Fieldworker]
We also found that stigma impacts treatment seeking behaviour. When asked why some affected patients do not go to the MFTPA treatment centres, participants said either that they despaired about their problem or that they feared the discriminatory label given to them as 'foot patients' when other people see them going to the centre. In addition, they mentioned that some young patients do not like to wear the distinctive and rather clumsy shoes locally produced by the MFTPA because they mark them out as having podoconiosis and target them for social stigma.
We pray that people defeat their fears. Some we know them heavily affected, but do not like to come because they become afraid of others. They say, 'what will others say about me?' People know they are patients or there are rumours their children's legs for example are swollen. I cannot understand why they are afraid. [Male participant]
The shoes are also known by everyone, they say 'their shoes'. Some pay their money to buy the shoes, they not wear them in public places because people say he is a patient. [Male participant]
As a consequence, podoconiosis patients do not like to share information about their health problem with non-affected people for fear it will fuel the stigma. Patients need time to establish trust with researchers to ensure the information they provide is kept confidential. As would be expected, fieldworkers observed that this lack of trust represents a potential barrier to obtaining consent and genuine information from podoconiosis patients.
I am not happy when other people know about my disease. Why should I tell people who undermine? Why should I make those people laugh at me? I tell people like you because I can be helped and cured. [Female participant]
Yes, I mind people knowing about my health problem because people insult and stigmatize us. I would not have given you this interview if there had been someone else. [Male participant]
It is only stigma and discrimination that we get from them. Therefore, I will tell people like you if I have to tell. I am not happy telling other people. [Female participant]
Because of the long-term effects of the diseasein resulting in stigma and isolation of patients from the rest of the community, affected people hesitate to confidently talk, discuss and disclose their private issues. This is one thing that we are usually in difficulty. [MFTPA staff]
Patients demonstrated great trust in the MFTPA staff and preferred to be approached by MFTPA staff if information about their condition was sought. This is because MFTPA fieldworkers are former podoconiosis patients and, more importantly, they fully understood the social implications if confidentiality was not maintained during treatment or research.
They [MFTPA fieldworkers] are giving us a good service, they give us education, they monitor our progress, they give us shoes and under God they give us treatment. They also keep our secret that is why right now I am telling you the truth. [Male participant]
Established trust in the MFTPA and concerns of genetic research
The MFTPA was greatly trusted by podoconiosis patients because of the services it provided and the strategy it followed. The MFTPA mainly targeted interventions against environmental triggers for the disease, primarily prevention of long term exposure of feet to irritant clay soil. Patients said the treatment provided improved their health status and positively changed the attitude of others towards podoconiosis patients, and hence contributed to reduction of stigma. They also had confidence in the fieldworkers because they are former podoconiosis patients and are trusted that they work for the good of those affected.
People used to believe we are hopeless, and the disease cannot be prevented or treated. They never like to marry our women even if they are beautiful. This organization is a gift from God. Now things are changing. For example, [name of a female fieldworker] is married to non-affected man. She earns good salary, even better than I do. They have two children and live a happy life. There are also other stories like this. [Fieldworker]
Thanks to God! Previously even my friend was spitting on me when my legs were swollen and smelling bad, but now I am equal with other friends of mine. I can say MFTPA is sent to me from God. Look at my leg it is good now; previously it was deformed; it reached this stage with MFTPA drugs and shoes. [Female participant]
However, the MFTPA had not mentioned familial factors in its communication with patients prior to the rapid assessment being conducted. MFTPA staff were concerned that raising the issue of genetics as a factor in the causation of podoconiosis might erode the Association's relationship with the podoconiosis community. They said that overemphasis on the genetic component of podoconiosis might disappoint patients and families who had already been targets of stigmatization in the community because of the prevailing belief that the disease is familial. They said that patients would be comfortable if we simply tell them, 'we do this study to understand more about the disease', and they suggested not mentioning specifically that we were conducting genetic research.
It is difficult to talk about genetics among podoconiosis patients. Most of them do not like to hear that the disease is familial. And we do not focus on that part. We teach them that exposure to the soil is the cause of the problem. They have seen that protection of feet from the soil is preventive and helps in treating early stage disease. They accepted this, and talking about genetics may confuse them. That is what unaffected people say, and our patients do not like to hear it from us. [MFTPA staff]
Issues related to genetic research
In Wolaita, people are aware, to some extent, of what genetic predisposition means. However, there is no equivalent local term that precisely translates the word "genetics". The community commonly uses expressions like 'dabuwan adhiya harigiya' (passed from parents and grandparents),'have it in the family', 'blood', 'bone', among others when they refer to genetic causation.
We found that most patients believe that podoconiosis runs in families. However, they do not have a clear understanding of patterns of occurrence of inherited diseases. They think that if a disease is genetic, it must be manifest in every member of the household, and should appear in every generation of the family. Any deviation from this (which is not the real heritability pattern of podoconiosis) is thought to cast doubt on the heritability (i.e., genetic nature) of the condition as expressed below:
This disease is not familial, if it was familial why my mother and I suffer from the disease while her parents were free of the disease. We probably acquired it due to lack of care for our feet. That is the way the disease catches one self. [Male participant]
Now, it is difficult to say it is familial. There is no one from either side of my parents; it was sudden when it caught me. [Male participant]
Despite believing that podoconiosis is familial, the burden of the stigma associated with the disease makes many patients deny the heritability of the disease and pretend that the disease is not present in their bloodline. Some patients were irritated when the issue of genetics was raised in discussions about podoconiosis. This response is understandable given the fact that in Wolaita, as in most parts of Ethiopia, family (bloodline relationship) has a strong social value. If a family is thought to have some factor that has negative social value, the 'blood' (or gene) of that family is considered 'unclean' (or susceptible) and thus, for example, ineligible for marriage.
Researchers who participated in this study also expressed their concern that some patients may be hesitant to participate in genetic studies for fear it would fuel stigma against them. Fieldworkers also said that even though families are willing to participate, they could under-report occurrence of the disease in their family line.
We know families with more than five affected members. Even such families do not like to hear that the disease is familial. This is partly because people who do not have the problem attribute the disease to familial factors and stigmatize them. [Fieldworker]
A solution suggested for this was selective recruitment for the genetic study of people thought to be genuine in providing such sensitive data, involving MFTPA fieldworkers and cross-checking information gained from a family with that obtained from other people who know the family without compromising the confidentiality and privacy of study participants.
Let alone this problem which is regarded as taboo in social life, when we mobilize them for less sensitive issues like income generating schemes, we talk to them repeatedly. It is usually after such repetitions and after convincing them that we will be able to touch their heart. [MFTPA staff]
A person who was leading a miserable life for a long period....one that was being discriminated against would definitely need longer to trust people and provide genuine personal information to researchers. [MFTPA staff]
Role of stigma in risk perception and motivation for participating
We found stigma to be of central importance to participants in evaluating both the risk and long term benefit of participation in genetic research. Participants appreciated that we proposed to collect a saliva sample and that the procedure entailed no physical risk. The risk that had considerable weight was the perceived negative social outcome of the research. Patients were concerned that the research might publicize podoconiosis as a familial condition and would aggravate the stigma by labelling children of affected families as 'at-risk'. This was considered to have potentially undesirable outcomes for their self-image and perceived ability to shape their future. Fieldworkers stressed that the feared social risks should be addressed by the investigators before people are asked to consent to participate in the study. Researchers suggested addressing these concerns through a consultative dialogue between researchers and the community.
Okay, let me say my family, my neighbours and others coming here for treatment participated in your study. I am very old and will no longer worry about myself. If you say the disease is familial, my daughters will be worried day and night. Who will marry them? Everyone becomes afraid that the disease will catch her one day. Do you have solution for us? [Female participant]
Stigma also shaped the motivation of participants and their expectations of the long-term social outcome of the genetic research. Some wondered whether the research might restore their social position either by proving that podoconiosis is not familial or by providing means of developing drugs that cut transmission along generations. Provided the social risks were addressed, most patients were willing to participate in the genetic study even when we explained that participation would have no immediate benefit. Moreover, many patients were interested to know why there were variations among families in the pattern of occurrence of podoconiosis. Some participants commented that whereas the 'nodular' form of the disease seemed to run in families, the 'water bag' form did not [20
In contrast, a member of the MFTPA staff argued that podoconiosis patients were keen to get an immediate solution for their long-lived problem and do away with the social stigma. He said this might constitute a barrier to genetic research which would only benefit society in the longer term.
Because these patients have been devoid of treatment for many years, if we tell them that our research has no immediate therapeutic benefit, it will discourage them from participating because they will despair and associate that with neglect of their problem.....we should not discourage them that the [proposed genetic] research has no immediate benefits. We should teach them that every good medication starts from research. If they are told that research helps to improve treatment, then they will be interested. [MFTPA staff]
Impact of stigma on decision making about genetic research participation
Participants of the rapid assessment agreed that the appropriate design of the consent process, and the patterns of decision-making about participation at community, family and individual levels would depend on the type of study. Most participants said that patients are usually free to make their own decisions about participation in research. However, in relation to genetic research on podoconiosis, most participants suggested involving the head of the family, or the family as a whole in the consent process. Because of the prevailing stigma attached to a podoconiosis affected family, they (by implication) preferred that the ownership of every sample for genetic study should belong to the whole family. They were particularly sensitive about disclosing information regarding familial affection by podoconiosis. As a result, most participants expressed interest in consulting their relatives and returning with ideas before consenting. We found that these views did not differ depending on the gender of the patient.
Usually, they cooperate when they are asked for research in group by fieldworkers, but when it comes to decision to such [genetic] research, they would be interested if they are given the opportunity to consult their family. [Fieldworker]
Tendency to consult a husband/wife or any other person does not mean that there is influence in making decision. In this regard the concept of individual consent is respected... It is just a norm in the context of the study area, and that should be respected. [Researcher]
For routine research, I am the one who gives permission for all members of the family. In this case it involves giving information about every household member and descendants. Therefore, we like to discuss amongst ourselves whether or not to disclose family secret. [Male participant, head of household]
Usually, for research that involves any family member, particularly children, the father gives permission, as males are usually head of households. However, your study is sensitive. It supposes familial transmission within a family. If I decide on behalf of my child, she may be disappointed one day when she grows old if the study touches the pride of her family. My older parents, some alive, should be consulted before we participate in a study that talks about the whole family tree. [Female participant]