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These customers on aetiology do not make in business: Positive images, interviews, and role models should be subject to break down covering customers depicting people affected by olla as pitiful and disgusting. My Brand with Leprosy. These meetings were part held daily and later on all basis. Topics conducted in the interviews were i will information, ii found will, iii economic situation, iv various main, v health need, and also vi leprosy.
Brief Overview of Leprosy Control and Epidemiology in Indonesia Indonesia presently has the third cirehon level of leprosy infection in the world, after India and Brazil [ bbig ]. Indonesia has a long history of leprosy control. Inthe first leprosy asylum was built on one of the islands in the bay of Jakarta and over two centuries the number of asylums increased until 45 [ 23 ]. Inthe compulsory isolation of leprosy cases was abolished [ 23 ] and the implementation of several national control programs followed.
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Already inthe government started to integrate leprosy control in the general health Looiing [ 24 ]. We will brest on the epidemiology of leprosy in Cirebon Looklng, as this is the brfast of research for this study and put the numbers in the context of the provincial Bgi Java and national figures. Last year, the District Health Office of Cirebon reported new leprosy cases As shown in Figure 1the number of new leprosy cases on national level showed a flat pattern until Last year, the Ministry of Cirebno of Indonesia reported cigebon, new leprosy cases 9.
We are not aware of any recent changes in the leprosy services that can account for this increase. Figure 1 fir trend of new case detection breats in Indonesia, West Java and Cirebon in — data is merged Lioking [ 2122 ]. Lookign the new cases in Cirebon, 18 5. Looking for big breast today in cirebon trends can be seen Lookig national and provincial tosay see Figure 2. The figures suggest a tody late case detection, but the reduction is hreast and indicates that cigebon current leprosy control programmes are making progress. Tovay 3 shows a varying, but declining percentage of new cases among children particularly in Cirebon.
This indicates progress in the reduction of recent leprosy transmission. Data on todwy percentage of women among new registered cases was only available from until at national level. After Looing initial increase, the number has brrast from Analytical Framework The experiences of people affected by leprosy are conceptualized in diverse ways. Concepts of social exclusion, discrimination, and stigma are frequently used. One commonly used conceptual framework is the one breasf Weiss [ 26 ]. Weiss extended the Hidden Distress Corebon of Scambler [ 28 ] and distinguishes six types of stigma, three from perpetrators and three from those who are stigmatized. To make productive use of our results and, in particular with future leprosy services and interventions in mind, we use conceptualizations of Weiss where toady.
Materials and Methods 4. Study Area Cirebon District brwast on the North Coast of West Java, was breasf as the area of research and project implementation because it has a high number of new cases annually and has accordingly local experts higher leprosy-related stigma in comparison to other districts. Cirebon has a vibrant history and not surprisingly, is tday as a cultural melting pot; it has absorbed influences from Hindu, Buddhist, Islamic, Sundanese, Breasy, Chinese, and Dutch cultures. Research Team Six research assistants assisted the four main researchers with conducting interviews and focus group discussions. The research assistants all come from Cirebon district How to make pimple dry faster speak the local languages Sundanese, Javanese and Cirebonese, Lookibg addition to the national language, Bahasa Indonesia.
Some research assistants have either a disability or have been affected by leprosy themselves. They received training in social research 1 week and community-based rehabilitation 3 weeks. During data collection, meetings with the whole team were beast at the office to share experiences, challenges, feelings and stimulate learning. These meetings were initially held foday and fro on weekly basis. This was done to develop a common understanding of the local situation, build a strong connection with the research, improve research skills, and improve the approach. Sampling brfast Selection The puskesmas Community Health Centres have provided the contact details of people affected by leprosy.
The research assistants Looklng played an cirebpn role in updating the list, cirehon potential participants, and cifebon them to be part of the study. The participants were purposively selected, based on characteristics such as Good funny questions to ask, gender, religion, and role in the community. Data Collection Methods To understand the variety of experiences of people currently under ror for leprosy or already cured, interviews were conducted in June and July Each participant was interviewed three times.
This was done to build trust and help participants ni confident to talk about the issues they virebon in daily life. In total, 53 times three interviews were conducted, of which nine were with children. The interviews were conducted with single participants and in pairs of fod. The interviews commenced in an exploratory manner and then progressed towards Loiking in-depth enquiry. Topics addressed in the interviews were i general information, ii life history, iii economic situation, iv blg situation, Lioking health situation, and finally vi leprosy. In addition, different visualisation techniques were used.
For example, body maps were employed to investigate the participants' perception and implicit knowledge of their own bodies and the connection with the disease. This made it possible to interpret the aetiology of leprosy. Photographs of the families were used to open an intimate space for a dialogue Looking for big breast today in cirebon family issues. In addition, breaxt the data collection period, cor informal interviews took place; these were also considered during the ij. To understand corebon perspective of the community, twenty focus group discussions FGDs were conducted. Participants were neighbours of those who had leprosy, community and religious leaders, mothers of children affected, teachers, and health workers.
Tiday FGD had between 4 and 12 participants. Each FGD was designed slightly different, but the purpose was the same: The common themes were i understanding of leprosy, ii stigma in the community, iii main issues in the community, Lioking current strategies, and v recommendations for strategies to reduce stigma. A community map was chosen as Loooing technique to explore the main problems that affect their communities in general and specifically related to leprosy and the relationships among Lpoking. The results presented below draw on these interviews iin FGDs, but do not represent a complete analysis of the available data.
The interviews and FGDs were recorded, transcribed, and iin into English. First, data was coded and memos were made to find themes, clusters, and patterns. To organize, compare, summarize, and finally draw conclusions, several models were formed. Ethical Considerations Permission for the study breaet approved from cirebin relevant government offices. Written consent ckrebon obtained from individual study subjects. Fro Meaning to Leprosy Two terms, lepra and kusta were commonly brreast by our informants to designate leprosy which clrebon been confusing for many participants. The corebon is tpday from India where leprosy most probably originates from. Some participants believe that the two terms mean the same, while others believe that these terms identify a difference in the severity of the disease.
Several participants were of the opinion that there are different types of leprosy. Sometimes a connection is made to diabetes; one community leader even stated that leprosy and diabetes are the same FGD 2 community leaders. Leprosy as a health issue is understood in different ways, which is illustrated by the variety of answers given to the question: When participants shared their views about leprosy, they often referred to it as a skin disease, emphasising the contagious nature of the disease and impairments of hand and feet. They described the characteristics of leprosy as follows: I thought the lesions had become as ripe as fruit. The rash was pretty ripe in my opinion; it's just like the black freckles on ripe mango.
FGD 6 teachers Interestingly, sometimes concepts as shame and low self-confidence were perceived symptoms indicative for having leprosy, as shown by the following quotes. As far as he knows about leprosy: People affected by leprosy said that sometimes it is the dark skin and not so much the leprosy that makes them feel inferior. Also, the dark skin triggered friends and neighbours to ask questions which made people affected feel uncomfortable. One participant lied during job interviews by saying that he loves playing kite and that his skin is dark because of that.
I was surprised because he [her son] became so dark-skinned. He was so clean before, but he became so dark. Aetiology The reported ideas on aetiology vary. Firstly, participants think it is an infectious disease that can easily spread through direct contact with the person affected. This also implies that, in their perception, breathing the same air, shaking hands, eating food prepared by a person affected, carrying the deceased body of a person affected or using the same personal objects, such as glasses, towels and clothes, could potentially transmit the disease. However, this perspective is not shared by all participants as some think it is not contagious.
Participants also referred to the importance of having the same blood or same blood type, some consider this to be a prerequisite for infection. Three related quotes are as follows. I used to be free from the disease but I got infected through my neighbour. FGD 4 mothers of children with leprosy Teacher: Even in Eid Mubarak we do not shake hand… Interviewer: So when you meet a patient of leprosy, and you know that the person affected by leprosy, you will not shake their hand when they want to? Well, coincidentally, the person always keeps himself inside the house… he understands it somehow. FGD 6 teachers Leprosy is like…. It does not seem contagious. If it were contagious, my children would be affected.
The third category of causes relates to poor hygienic conditions such as swimming in a dirty river. For instance, since some of the people affected work with goats, work in construction or have eaten chicken, a link between the animals, the cement, or eating chicken has been used to explain the cause of leprosy. The final category refers to the supernatural and moral aspects of life. Many people affected by leprosy believe leprosy is a challenge from God. People thought that God could be involved in allowing the bacteria to attack the body of the person, but with the purpose of making them stronger internally and in their faith.
In contrast, a moral cause is involved when human deeds are seen as a reason for contracting leprosy. Some key persons in the community perceived leprosy as a punishment from God. A specific example mentioned as a cause for leprosy was having sexual intercourse with a woman while she has her period. Destiny was also mentioned, for example by a teacher, who said he knew persons who passed away because of leprosy, but also clarified that death comes because it is written and hence should be perceived as destiny. In some cases people believe sorcery is involved. These thoughts on aetiology do not exist in isolation: A quote to illustrate this point: I think an illness is divine will.
But there is a cause of an illness. FGD 5 religious leaders 5. Perspectives on Diagnosis and Treatment Most participants affected by leprosy have consulted the community health services CHS for their health problems. A few noted that they faced barriers to reach the CHS. Two participants for instance needed medical treatment but did not have enough money to pay the public transport from their house to the CHS. When the disease did not get better, participants returned to the clinic to find out they were actually suffering from leprosy. Some doctors and leprosy workers diagnosed the disease correctly, but decided not to share the diagnosis with the patient. This happened, for example, with a year-old woman interview During her consultation the doctor told her she was suffering from a general skin disease, despite that she kept asking, the doctor did not want to tell her more but advised her to take free medicine every day for one year and to collect it monthly at the CHS.
Other leprosy workers decided to share the diagnosis, but participants regularly preferred to hide their disease from neighbours, friends, family members, and in some cases their spouse. They also ask leprosy workers to be discrete. Nevertheless, this does not automatically mean people around them did not find. The initial encounters between a doctor or leprosy worker and newly diagnosed patient are important. Stigmatizing attitudes and behaviour of doctors and leprosy workers can have an enormous impact on the people affected as illustrated by the first quote. The second quote of a leprosy worker confirms that several health workers are afraid to contract the disease.
The moment the leprosy worker did not want to shake my hand, I had the feeling leprosy cannot be cured and that people will not be friendly with me anymore. The CHS usually executes a certain procedure that includes a contact survey finding new cases and socialisation raising awareness when a new leprosy case is found. The importance of pictures and the use of simple and the right local language were emphasized by a leprosy worker. Another one described the procedure: If we find the leprosy patient, we usually come to their house and deliver understanding to them or to their family as well as the society around them … So it is describe on what is leprosy and how to cope with it…that is we usually do in the field… FGD 12 Leprosy workers An older woman Interview In contrast, some persons affected by leprosy said they benefited from these visits Interview 1: They said they were visited routinely at home by leprosy workers who gave counselling to increase confidence and to provide information to their family, who supported them in daily and community activities.
Several participants sought assistance outside the CHS. Some went first to a pharmacy for general medicine, which is common practice according to a participant. Some went directly to a hospital for which assistance from the head of the village is needed. In addition, several participants went to a dukun who can fulfil the role of traditional healer, spirit medium and occasionally sorcerer. Reasons that were given were curiosity, believing that the cause is sorcery and accessibility. One participant did not gain from it as illustrated by the following quote. Some friends advised me to go see a dukun… There is one neighbour … took me to see a dukun …, I forgot her name, she is not solving or healing my illness but asking for more money.
Since then I never went to dukun again. One community leader explained that it is because they feel embarrassed and are afraid for negative responses from others in the community as illustrated by the following quotes. Based on my first experience, someone suffers from this illness and until right now she is been denying it as leprosy. She was asked to go to the hospital but she did not want to go. And one day people from Health Department came to her house and she still with her persistence. FGD 20 Leprosy workers One of the affected people does not want to admit that he suffers from the disease even though his fingers come off.
He does not want to find any medication. He is very ashamed. FGD 2 Community leaders But if one gets leprosy, rumour has it; they are reluctant to have treatment. People will be looking at me. Several participants emphasize the importance of God in a cause of the disease as described earlier, but also in getting cured as shown by the following quotes. Every disease has its remedy and it depends on God's mercy. Some, for example, want a second opinion and others constantly keep an eye on their body or the body of the family member.
Impact of Living with Leprosy Leprosy made people affected live with spots, scars, a dark skin and sometimes sensory loss and physical deformity. All of those physical impacts challenged their life and also influenced their emotions and social and economic situation. Sadness, frustration, loss of confidence, devaluation of their own capacity, stress, and hopelessness were some of the emotions described due to the leprosy. A few people affected told us that they have considered ending their lives. A teacher describes it as follows. If they have a high spirit to survive, undergoing treatment, they will live longer… But if they keep hiding and staying away from the sunlight, it is possible for them to get depressed and die… because of depression.
FGD 6 Teachers We noted an interaction between self-isolation and being isolated by the community. Several people affected became reserved, shy, and ashamed and isolated themselves, but at the same time, several family members and people in the community also isolated people affected. Key persons in the community have a variety of views about what is the cause of isolation. It is like anyone with this rare disease. Most of the people with leprosy tend to act that way. FGD 6 Teachers Interviewer: Do all people isolate the affected? People affected are usually isolated and I feel sorry about it. FGD 2 Community leaders We tried to understand the reasoning behind isolating somebody.
We heard quite shocking examples of isolation: However, often there are underlying reasons of protection and care illustrated by the following quote. What will you do if you are affected by leprosy? I will isolate myself. Some participants were physically not able to do the work that they used to do such as making furniture. Some were fired because of leprosy such as a cleaner in the hospital, while others resigned themselves as suggested by family members. Furthermore, people in the community avoided being customers of street vendors, in warung small restaurant or small shops, because of fear of being infected by touching the objects or eating the food that is sold by persons affected by leprosy.
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