A total of 181 respondents were interviewed. The majority of respondents had ulcers (91.7%) and only 8.3% had pre-ulcers. Respondents with pre-ulcers and ulcers had similar background characteristics. Most respondents had at least completed primary school. Very few respondents were skilled or professional workers and very few had regular income (Table ).
Demographic characteristics of respondents
Burden of BU and impact on family well-being
Features of the impact of BU were disrupted livelihoods, loss of income, absence from work or school for care, and anxiety about disease progression. While respondents with pre-ulcers emphasised the point that their families were more concerned about the progression and course of their illness (66.7%), respondents with ulcers emphasised loss of income as the main concern of family members (80.1%) (Table ).
Impact of respondent’s illness condition on family
Respondents with nodules indicated in their narratives that their condition did not pose any threat to their well-being and family welfare since they were in no pain, could use affected limbs, and therefore were able to perform their daily routines of school and work, without any limitation. Family members of respondents with pre-ulcer conditions worried about the progression of the illness of their relatives. They were concerned about the outcome of swollen (oedematous) limbs or plaques and nodules that were likely to progress into ulcers with debilitating consequences of pain, disability and high costs of care. Narratives of respondents with ulcers referred to various effects of their condition on their family. These included disruption of work to provide care in the hospital and at home, and depletion of family income and resources for treatment costs. Family members of respondents with ulcers too were often concerned about disease progression and prolonged treatment, and the likelihood of disability.
Gender dimensions of BU-burden and care
Socially constructed gender roles of care and work affected livelihoods, income and education of those providing care for sick relatives. The socio-economic status of families also worsened if the affected person was the main income-earner. Generally, for respondents with ulcers, mothers (52%) were more likely to miss work for caretaking than fathers (6%); daughters (7.2%) were more likely to stay away from school than sons (0.6%), and more sisters (8.4%) than brothers (1.2%) stayed at home to care for sick relatives. Similarly, pre-ulcer respondents with plaques and oedematous lesions also identified mothers as care-givers. The following illness narrative explains how the loss of livelihoods, anxiety, and the need for care affects the social and economic well-being of the family.
"It started as a hard boil (nodule). I showed it to a health worker at Hobor
(a community in the GSM). He told me it was Buruli ulcer and said I should go to the hospital. I did not have enough money then, so I stayed at home for 3weeks before going to the hospital. I am the bread winner of the family and now I am in hospital. My daughter comes here occasionally with food and money for me, and to wash my bandages. Since I am not working, my parents send me money and some provisions occasionally. When my parents do not have money, they do not send anything.
"(28-year-old female respondent)"
Patterns of distress
Respondents with pre-ulcers and ulcers expressed their distress differently (Table ). Those with pre-ulcers frequently reported psychological or emotional problems (86.7%), particularly anxiety (66.7%) and physical problems, mostly pain (66.7%). Psychological or emotional problems were mentioned as the most troubling category of distress and were more prominent for pre-ulcers. Pain was often associated with oedematous lesions. For ulcers, physical problems (98.2%) were frequently and more prominently reported. Pain and problems with mobility or use of affected limbs were physical problems that respondents with ulcers emphasised as distressing (Table ). Disrupted education was the most frequently reported social problem.
Reported categories of distress for respondents with pre-ulcers and ulcers
Narratives showed that respondents with pre-ulcers were often anxious about the progression of their illness to ulcers. This concern was influenced by prior knowledge of the debilitating nature of illness progression from pre-ulcers to ulcers, uncertainty of disease outcomes and concern about transportation costs for treatment. One respondent worried that it (nodule) will become a sore just like those of other people who already have it, and my leg will be cut. Respondents who were not familiar with pre-ulcer conditions too were often anxious about the outcome of their illnesses. Desperation and desire for clarification of their conditions and relief led them to seek advice and help from friends and family, and to shop for care from various providers, such as herbalists, church, and private health practitioners. Many respondents with pre-ulcers did not want normal work and school attendance to be disrupted. Therefore, they used itinerant providers who could provide services in the respondents’ homes.
Like respondents with pre-ulcers, respondents with ulcers who were in school often worried about their education being disrupted (56.6%) and expressed anxiety (61.5%) about the outcome of their ulcers. Narrative accounts of respondents with ulcers revealed that their distress was influenced by a combination of physical, social and psychological problems. For example, anxiety was often triggered by the intensity of pain and the inability to use affected limbs or move around easily, which hampered work and school. As recourse for cure, and to continue with work and school, respondents with ulcers too, preferred help from itinerant providers such as herbalists, private health practitioners and other government employed health workers, who provided care in their homes after work. As their illness conditions worsened and pain intensified, respondents were compelled to seek help from the municipal health facilities. A female respondent explained how pain and immobility had affected her livelihood and income. Desperate to recover quickly and to continue working and taking care of her children, she used various providers and eventually used medical care.
"I have been suffering for some time now. My leg hurts and I cannot walk properly with this leg. I used to be an okra farmer, but I cannot farm anymore. I do not make money anymore to take good care of my children. I bought all kinds of drugs from the people who sell medicine (drug peddlers), but they did not work. I visited so many places for help. I bought any medicine I heard of, but none of them helped me. My pastor told me to go to the health centre as it was getting worse but I rather went to see a herbalist, but his treatment did not work, the sore was getting bigger and bigger. I wanted to get well quickly to go back to farming. I finally came to the hospital."
"(28-year-old female respondents)"
Likewise, a mother’s anxiety about her son’s condition focused on the fear that he might drop out of school. Aside from her child’s distress, she also bemoaned her absence from the home because of care, loss of work and the gradual dwindling of her trading capital, and eventual poverty.
"Now that he has Buruli ulcer when will he recover in order to go back to school? Sometimes I am afraid that this is it; he may never go back to school. Since I am his mother, I have to be with him at the hospital. I had to spend Christmas here in the hospital, away from the family. I have stopped trading and my capital which was a loan from the bank has been spent on looking after my son. Meanwhile, it is still building-up interest. How am I going to pay back the money when I have stopped work?"
"(Mother of 9-year-old male child)"
Respondents mentioned a variety of causes to explain their illness. For both pre-ulcers and ulcers, perceptions of causes were based on observation, behaviour, the influence of health messages on contagion, and the logic of explanations they had for their illness.
Respondents with pre-ulcers frequently and prominently reported behaviour-related causes, particularly swimming in ponds and rivers which was also considered as the most important perceived cause (53.3%) (Table ). Respondents, who reported swimming in ponds and rivers, linked their condition to their own risky behaviour. Some respondents, who said they had no contact with water bodies, questioned the credibility of health messages that linked contagion to contact with unclean water. They referred to the absence of the disease in other community members with whom they shared the same water sources (rivers and ponds). Furthermore, about half of respondents with pre-ulcers attributed their illness to drinking unclean water (53.3%), and about a third (33.3 %) of respondents could not tell the cause of their illness.
Reported categories of perceived causes for respondents with pre-ulcers and ulcers
Some respondents with pre-ulcers, who remembered how their illness started, were certain that they had no water contact. They attributed their illness to various factors like scratches, stings, abrasions and unexplained swellings of the limbs. Those respondents, who related their condition to bad drinking water, based this idea on health information from health workers, community-based surveillance volunteers and teachers. They admitted however, to drinking unclean water from rivers, ponds and dug-out wells and explained that they had no other option.
Respondents with ulcers emphasised witchcraft as a likely perceived cause and the most important perceived cause for their illness. Aside from such spiritual causes, swimming in ponds and rivers (43.4%), weakness of blood (38.6%) and drinking unclean water (33.7%) were also mentioned (Table ). Like respondents with pre-ulcers, some respondents with ulcers could not tell the cause of their condition (24.1%).
Respondents’ narratives related ideas of witchcraft to a variety of other factors. These included: The absence of a logical explanation for infection within the context of health messages that emphasised contact with aquatic sources as a risk factor for contagion (especially when other persons exposed to risk factors like swimming, fishing and bathing in rivers were never infected); inability to explain the cause of the disease; progression of abrasions, small cuts and swellings into debilitating ulcers that took a long time to heal. Some parents could not understand how children, who were too young to swim and therefore had no contact with aquatic sources, were infected. An adult respondent explained her choice for medical care after a recurring BU infection. She mentioned witchcraft as a perceived cause of her illness and dismissed water contact as a plausible explanation:
"When it happened the first time, I tried herbal treatment and I really suffered before I got cured. So when it happened this time, I decided to go to the hospital. We have a pond in this village and no one swims or wades in this pond. I am a neat person and my house and compound are always clean. I do not swim or wash in bad water. So I don’t believe that this disease is from the water as the nurses here are saying. I believe that this condition is due to witchcraft because that is what witches do; they destroy people’s lives. This disease is terrible, it cripples you and ties you down for months and even years. We will be happy if a stronger and faster treatment can be found for this illness."
"(45-year-old female respondent)"
Narratives indicated that scepticism of health messages, and reference to witchcraft as a PC, did not prevent respondents from using medical care. Illness experiences (PD), persistence of the lesion and failure to recover, and awareness of medical care for BU, influenced their choice of medical care. However, witchcraft-related explanations prejudiced notions of transmission and prevention. Many respondents with pre-ulcers (40.0%) and ulcers (50.0%) stated that their conditions could not be prevented because witchcraft cannot be stopped. Nevertheless, respondents with pre-ulcers (56.7 %) and ulcers (46.4%) mentioned avoiding swimming and bathing in rivers and ponds as an effective preventive measure. Narratives revealed that this information was obtained from health messages in the communities, school and health centres.
Like respondents with pre-ulcers, respondents with ulcers who mentioned water contact through swimming as a likely cause of their condition, blamed their associated behaviour for their illness and not a matter of lack of awareness. They explained that unclean water sources could not be avoided since there was no better alternative. These sources of water were used for bathing, washing, cooking and irrigation. Sometimes, during the rainy season, respondents had to wade through ponds as a thoroughfare.
Additionally, vulnerability to BU infection due to low immunity, referred to locally as weakness of blood, was mentioned as a possible cause of infection. Infected children, particularly those who had recurring lesions, were often described as having weak blood. A child explained why weakness of blood was more likely cause than water contact:
"I believe my condition is due to the weakness of my blood because all of us at home go to the river to fetch water and we use the same water. Why am I the only one to get infected? I had it some time ago and it has reoccurred."
"(16-year-old male respondent)"