Background
Methods
Design
Setting
Sampling and recruitment
Data collection
Topic | Subtopics |
---|---|
Questions exploring personal factors | ▪ Knowledge about leprosy and treatment ▪ Beliefs about leprosy transmission and cure ▪ Experiences of restarting treatment ▪ Importance of health ▪ Leprosy manifestations ▪ Medication side effects ▪ Medication compliance and coping mechanisms ▪ Psychological impact |
Questions exploring external factors | ▪ Employment and future aspirations ▪ Experiences of diagnosis ▪ Access to healthcare ▪ Importance of HCP ▪ Contact tracing |
Questions exploring support network | ▪ Sharing diagnosis with community ▪ Stigma ▪ Family and social circle ▪ Religion |
Topic | Subtopics |
---|---|
Questions exploring personal factors | ▪ Knowledge about leprosy and treatment ▪ Beliefs about leprosy transmission and cure ▪ Experiences of patient restarting treatment ▪ Importance of health ▪ Leprosy manifestations in the patient ▪ Medication side effects and coping mechanisms ▪ Medication compliance ▪ Psychological impact on self and carer |
Questions exploring external factors | ▪ Experiences of carer role ▪ Employment and future aspirations ▪ Access to healthcare ▪ Importance of HCP ▪ Contact tracing |
Questions exploring support network | ▪ Sharing diagnosis with community ▪ Stigma ▪ Family and social circle ▪ Religion |
Data analysis
Ethical considerations
Results
Identifier | Clinic type | Age bracket | Education | Gender | Job | Number of people in household | Consent type |
---|---|---|---|---|---|---|---|
001 | Urban | 35 ≤ x < 45 | Incomplete elementary school | Female | Unemployed | 4 | Written |
002 | Urban | 45 ≤ x < 55 | Incomplete elementary school | Male | Unemployed | 5 | Thumbprint |
004 | Urban | 65 ≤ x < 75 | No formal education | Male | Farmer | 3 | Thumbprint |
005 | Urban | 35 ≤ x < 45 | Completed elementary school | Male | Public agent | 2 | Written |
009 | Urban | 35 ≤ x < 45 | Incomplete elementary school | Male | Self-employed | 9 | Written |
010 | Urban | 35 ≤ x < 45 | Completed elementary school | Male | Farmer | 3 | Written |
012 | Rural | 75 ≤ x < 85 | Incomplete elementary school | Female | Housewife | 1 | Written |
016 | Rural | 25 ≤ x < 35 | Completed high school | Female | Housemaid | 5 | Written |
018 | Rural | 45 ≤ x < 55 | Completed elementary school | Male | Self-employed | 3 | Written |
019 | Rural | 35 ≤ x < 45 | Completed elementary school | Female | Unemployed | 5 | Written |
021 | Rural | 35 ≤ x < 45 | University education | Female | Unemployed | 2 | Written |
022 | Rural | 65 ≤ x < 75 | Completed elementary school | Male | Retired | 2 | Written |
026 | Urban | 45 ≤ x < 55 | Completed high school | Female | Housewife | 5 | Written |
027 | Urban | 55 ≤ x < 65 | Incomplete elementary school | Male | Unemployed | 9 | Written |
Identifier | Clinic type | Age bracket | Education | Gender | Job | Number of people in household | Consent type |
---|---|---|---|---|---|---|---|
003 | Urban | 35 ≤ x < 45 | Incomplete elementary school | Female | Housewife | 7 | Written |
006 | Urban | 35 ≤ x < 45 | Completed high school | Male | Self-employed | 1 | Written |
007 | Urban | 45 ≤ x < 55 | Completed elementary school | Female | Farmer | 2 | Written |
008 | Urban | 65 ≤ x < 75 | No formal education | Male | Retired | 2 | Thumbprint |
013 | Rural | 55 ≤ x < 65 | Completed elementary school | Male | Truck driver | 5 | Written |
014 | Rural | 35 ≤ x < 45 | Completed elementary school | Male | Mechanic | 5 | Written |
015 | Rural | 55 ≤ x < 65 | Incomplete elementary school | Female | Housewife | 5 | Written |
017 | Rural | 25 ≤ x < 35 | Incomplete elementary school | Female | Hairdresser | 3 | Written |
020 | Rural | 55 ≤ x < 65 | No formal education | Female | Housewife | 2 | Thumbprint |
023 | Rural | 18 ≤ x < 25 | Completed elementary school | Female | Unemployed | 3 | Written |
024 | Urban | 55 ≤ x < 65 | Incomplete elementary school | Female | Housewife | 3 | Written |
025 | Urban | 35 ≤ x < 45 | University education | Female | Estate agent | 4 | Written |
028 | Rural | 75 ≤ x < 85 | Incomplete elementary school | Female | Housemaid | 4 | Written |
Theme | Facilitators of optimal TOs (frequency out of 14) | Barriers to optimal TOs (frequency out of 14) |
---|---|---|
Personal factors | ▪ Belief in pharmaceutical treatment (11) ▪ Use of an education source (14) ▪ Health is important to the patient (12) ▪ High standard patient knowledge on resistance or the importance of compliance (13) ▪ Normal nature or lifestyle of participant did not change (4) ▪ Perceptions of leprosy as ‘dangerous’ or ‘contagious’ (10) ▪ Positive patient attitude, desire to be cured (13) ▪ Positive perceptions of the future, and hope in a cure (14) ▪ Psychological resilience (13) ▪ Witnessing another getting better or worse (7) | ▪ Belief in traditional medicines (4) ▪ Belief medication is ‘strong’ (1) ▪ Change in the normal nature/appearance/lifestyle of patient (12) ▪ Change in identity, feeling labelled (8) ▪ Contradicting sources of education (11) ▪ Distrust of pharmaceutical medications (8) ▪ Experience/fear of stigma and discrimination (11) ▪ Feeling helpless (8) ▪ Isolation or distance (9) ▪ Myths and misinformation (12) ▪ Other comorbidities (6) ▪ Poor quality/limited knowledge (13) ▪ Psychological impact of leprosy (14) |
External factors | ▪ Ease of access to treatment (10) ▪ Education to empower social circle to help the patient/reduce stigma (9) ▪ Social circle support (emotional, nutritional, psychological, financial) (11) ▪ Family makes sacrifices for patient (6) ▪ Holistic care by HCP team (4) ▪ Individualised, patient-led care (5) ▪ Pragmatic approach to a high standard care in a resource scarce setting (1) ▪ Religion forms psychological support (10) | ▪ Care is not holistic (5) ▪ Difficulty accessing treatment (5) ▪ Disorganised care (6) ▪ Social circle has poor/ limited knowledge of the disease (3) ▪ Financial impact (8) ▪ Impact of illness on social circle (social/psychological/financial) (11) ▪ Impact on aspirations for the future (5) ▪ Lack of political will to tackle leprosy (5) ▪ Living in the countryside away from services (2) ▪ Resource scarce health system (2) ▪ Impact on employment (12) |
Clinical factors | ▪ Contact tracing (4) ▪ Mental/physical preparation for treatment (10) ▪ Seeing/feeling improvement (10) ▪ Strategies reducing side effects (6) | ▪ Late diagnosis (10) ▪ Long duration of treatment, high frequency doses (12) ▪ Comorbidities (6) ▪ Painful/distressing diagnosis (6) ▪ Progression or persistence of disease (14) ▪ Side effects of treatment (12) |
HCP-patient-carer relationship | ▪ Clear information provided (diagnosis, treatment, prognosis) (12) ▪ Good communication with HCP (9) ▪ Good quality care (6) ▪ Good, open, trusting HCP-patient-carer relationship (11) ▪ Patient feeling valued (7) ▪ Patient feels HCPs are important in their care (14) | ▪ Clear information not provided on diagnosis, treatment and prognosis (11) ▪ Poor communication/relationship with HCP (4) |
Theme | Facilitators of optimal TOs (frequency out of 13) | Barriers to optimal TOs (frequency out of 13) |
---|---|---|
Personal factors | ▪ Belief in pharmaceutical treatment (10) ▪ Use of an education source (12) ▪ Health is important to the patient (7) ▪ High standard patient knowledge on resistance or the importance of compliance (11) ▪ Normal nature or lifestyle of participant did not change (11) ▪ Perceptions of leprosy as ‘dangerous’ or ‘contagious’ (10) ▪ Positive patient attitude, desire to be cured (9) ▪ Positive perceptions of the future, and hope in a cure (13) ▪ Psychological resilience (7) ▪ Witnessing another getting better or worse (7) | ▪ Belief medication is ‘strong’ (2) ▪ Change in the normal nature/appearance/lifestyle of patient (6) ▪ Change in identity, feeling labelled (1) ▪ Contradicting sources of education (7) ▪ Distrust of pharmaceutical medications (4) ▪ Experience/ fear of stigma and discrimination (3) ▪ Feeling helpless (1) ▪ Isolation or distance (4) ▪ Myths and misinformation (8) ▪ Other comorbidities (6) ▪ Poor quality/limited knowledge (11) ▪ Psychological impact of leprosy (11) |
External factors | ▪ Ease of access to treatment (14) ▪ Education to empower social circle to help the patient/reduce stigma (9) ▪ Social circle support (emotional, nutritional, psychological, financial) (11) ▪ Family makes sacrifices for the patient (6) ▪ Holistic care by HCP team (4) ▪ Individualised, patient-led care (5) ▪ Pragmatic approach to a high standard care in a resource scarce setting (1) ▪ Religion as a source of psychological support (10) | ▪ Care is not holistic (2) ▪ Difficulty accessing treatment (4) ▪ Disorganised care (2) ▪ Financial impact (7) ▪ Impact of illness on social circle (social/psychological/financial) (5) ▪ Impact on aspirations for the future (4) ▪ Infected family members (3) ▪ Lack of conversation about leprosy with patient (4) ▪ Lack of political will to tackle leprosy (3) ▪ Living in the countryside away from services (2) ▪ Impact on employment (6) |
Clinical factors | ▪ Contact tracing (3) ▪ Mental/physical preparation for treatment (9) ▪ Seeing/feeling improvement (7) ▪ Strategies reducing side effects (5) | ▪ Late diagnosis (3) ▪ Long duration of treatment, high frequency doses (11) ▪ Painful/distressing diagnosis (3) ▪ Progression or persistence of disease (9) ▪ Side effects of treatment (5) |
HCP-patient-carer relationship | ▪ Clear information provided (diagnosis, treatment, prognosis) (7) ▪ Good communication with HCP (6) ▪ Good quality care (7) ▪ Good, open, trusting HCP-patient-carer relationship (8) ▪ Patient feeling valued (3) ▪ Carer feels HCPs are important in their care (12) | ▪ Clear information not provided on diagnosis, treatment and prognosis (4) ▪ Patient fear or experience of stigma or discrimination from HCP (1) ▪ Poor communication/relationship with HCP (4) |
Theme 1: personal factors
Subtheme a: knowledge and information quality
Researcher: ‘What do you know about leprosy’?Participant: ‘I have virtually no knowledge’ (018 – Patient)
Researcher: ‘How do you think you get the disease?’Participant: ‘I never shower with hot water and then suddenly with cold, or after eating, because I thought that’s what causes leprosy. I don’t know how I got it.’ (018 – Patient)Participant: ‘Because of cockroaches.’ (019 – Patient)Participant: ‘The sun. Petrolina is hot, and [the patient] was out at midday.’ (020 – Carer)
Researcher: ‘Do you know what relapse is?’Participant: ‘No, sorry. Nobody at the clinic ever told me about that.’ (009 – Patient)Participant: ‘ … my sister-in-law said it was when her leprosy came back.’ (017 – Carer)
Participant: ‘We are curious, but [the patient] never told me about leprosy, so I never asked.’Researcher: ‘Did you look online or in health centres instead?’Participant: ‘No.’ (013 – Carer)
Participant: ‘I like to learn more about leprosy so I can take better care of [the patient].’ (003 – Carer)
Participant: ‘ After the appointment I searched the internet and learnt a lot of things.’Researcher: ‘Were you more relieved when you had more information?’Participant: ‘I was … when we don’t know things, it feels like a shock, right?’ (001 – Patient)
Participant: ‘The thing about ‘Purple January’ is that people talk about it. It is necessary for school to teach about leprosy. These campaigns are needed.’ (026 – Patient)
Participant: ‘People get in the way, saying this, saying that. And [the patient] just gets confused. But the clinic doctor, she studied for this, she knows what is right and wrong.’ (023 – Carer)
Participant: ‘ … I know the woman in the waiting room. She told me about her nerves. They became defective. Others I know are on crutches, they can’t walk.’ (001 – Patient)
Participant: ‘I read about leprosy, about Job, in the Bible, where it is a chronic disease and difficult to treat. Job had itchy wounds but there was no treatment then. Now it’s different.’ (006 – Carer)
Subtheme B: health beliefs
Participant: ‘It’s contagious, and it causes numbness, which is scary, because you cut yourself but can’t feel it.’ (017 – Carer)
Participant: ‘[Patients who are non-compliant] don’t want to be healed.’ (016 – Patient)
Participant: ‘The importance of my health is everything because … I dedicate myself to [the patient].’ (003 – Patient)
Participant: ‘Because others have healed, why won’t I?’ (022 – Patient)
Participant: ‘People stop the medicines because it takes time to see effects. They don't believe in them because they give up before getting better.’ (003 – Carer)
Participant: ‘I could have stopped taking the pills. But the clinic staff kept saying, "Don't stop, otherwise it comes back even worse.". So, I kept going.’ (010 – Patient)
Participant: ‘ I want them to find a cure because these remedies, they combat, but don’t cure.’ (003 – Carer)
Participant: ‘I think that at my stage, I don’t know if I will be cured. It cures you only if you have a few lesions.’ (027 – Patient)
Participant: ‘All these new problems, the medicine isn’t working because it gave me new problems.’ (004 – Patient)
Participant: ‘I only take the medicines with food. They are so strong, they attack the stomach, kidneys, liver.’ (019 – Patient)
Participant: ‘Maybe certain vegetables, or maybe herbal medicines [cure leprosy]? Would you know?’ (026 – Patient)
Researcher: ‘What advice would you give to a newly diagnosed leprosy patient?’Participant: ‘Follow the treatment correctly so it doesn’t come back and gets better.’ (015 – Carer)
Participant: ‘It’s a delicate treatment that has to be treated according to the doctor, so follow their advice.’ (002 – Patient)
Subtheme C: psychological impact and character
Participant: ‘My beautiful legs, my lovely feet, suddenly looked bruised … If there is no cure, I will jump off a bridge. Because I will not live life sick with this leprosy, like a loser. I just want to be the same as I was.’ (018 – Patient)
Participant: ‘It did [have a psychological impact]. For two months, I wouldn’t walk with anyone, only alone or in the night. I didn’t sleep. I didn’t realise, but I would go to shower and still have all my clothes on. I was upset, dejected.’ (018 – Patient)
Researcher: ‘Do you think leprosy has a big impact on your life?’Participant: ‘Yes. Because I use a crutch, I have to be with someone when I go out so they can help. It’s annoying. The pain means I don’t sleep well, and I don’t have a normal day like others.’ (010 – Patient)
Participant: ‘My husband was scared. He was afraid of having sex … my daughter said, “Mom, if you have leprosy, you have to separate.”. She separated her glass, her plate, everything.’ (026 – Patient)
Participant: ‘Someone I worked with asked me why I was dark. I said it was because of leprosy treatment. She stepped back. She welcomed me with a kiss. But once she knew it was leprosy, she was quick to leave.’ (026 – Patient)
Participant: ‘They said it is not a disease of people, but of animals.’ (012 – Patient)
Participant: ‘My son faced stigma. Some kids found out at school and made fun of his colour and called him names.’ (025 – Carer)
Participant: ‘I didn’t speak to anyone for a month. Then my family told me being isolated is worse … you have to talk with your loved ones.”.’ (002 – Patient)
Participant: ‘I took the medication just how the doctor said. I gave myself every chance to get better.’ (005 – Patient)
Participant: ‘He never stopped the medicine because he just wanted to get better, get back to work. I always said, “Don’t give up!”, because otherwise there is no point.’ (003 – Carer)
Participant: ‘Leprosy made everything worse. It made me so upset. I had to close my business. Then I was even more upset so I started drinking cachaça* even more, smoking marijuana … ’ (018 – Patient)*Cachaça: a distilled spirit popular in Brazil
Participant: ‘I have diabetes. I think the treatment made it worse. When I stopped taking the medicine, the doctor said my diabetes got better.’ (027 – Patient)
Theme 2: external factors
Subtheme a: socioeconomic factors
Participant: ‘I worked in grape farms. Today, I don’t have the courage to work anymore, under the hot sun … I am too weak. But if I don’t go to the farm, how will I feed my children? Their lives will suffer.’ (001 – Patient)
Participant: ‘I can’t work … I have to care for [the patient].’ (003 – Carer)
Participant: ‘I got Bolsa Familia, because I couldn’t work, right?’ (003 – Carer)
Participant: ‘Who will hire a person with leprosy? There is prejudice. I need to heal. I need to be cured. Because I have dreams, projects … ’ (026 – Patient)
Participant: ‘Petrolina is a very bad place to get a job. He paid for expensive colleges and never got a job.’ (028 – Carer)
Subtheme B: structural factors
Participant: ‘I told the doctor I felt very weak. She did all the tests quickly, found out I was anaemic and gave me medicines for it.’ (018 – Patient)
Participant: ‘The doctor does counselling, but there should be a psychologist. Petrolina has to invest more in this.’ (005 – Patient)
Participant: ‘Someone did a blood test last year. We never heard back. The results weren’t here, so it looks like they were lost.’ (020 – Carer)
Participant: ‘So, at my clinic, there was no health agent, no doctor … ’ (019 – Patient)
Participant: ‘Previously it was difficult but nowadays if one health unit doesn't have treatment, they bring it from another unit. If I run out [of medication] and they don’t have it, I just try again the next day.’ (003 – Carer)
Participant: ‘The medication is made abroad; I think that is why sometimes there is a lack of medication. It depends on the government, but I don’t think they take public health seriously in Brazil.’ (006 – Carer)
Participant: ‘It is difficult in the countryside. There is a lack of awareness. Health care professionals need to visit us at home because it is hard travelling to clinics.’ (005 – Patient)
Subtheme C: support factors
Participant: ‘[The HCPs] helped me a lot. In everything. In giving advice, explaining things … ’ (010 – Patient)
Participant: ‘Only my eldest boy works. I have another boy at school. He needs me as a mother, but I am not well.’ (019 – Patient)
Participant: My neighbour said, "Get away from him, that disease is transmissible!". So, I isolated myself, but then, when his wife and children came out to talk to me, I told them, "No, I am not infectious.". (002 – Patient)
Participant: ‘People asked why [the patient] didn’t leave the house. I said that he was ashamed of his leprosy. He had depression. So, I said, "Since you won’t go out, I’ll invite everyone home.".’ (003 – Carer)
Researcher: ‘What is your role in the patient's life?’Participant: ‘Her friend, her counsellor, her helper, her strength … ’ (025 – Carer)
Participant: ‘My sister, she pays for my water, my light. She makes food for my house when I can’t do it.’ (019 – Patient)
Participant: ‘I believe he will be cured. I believe in God and whoever believes in God has everything. You have to have faith. There are days when he at home is agonized, restless. I take the Bible and read to him.’ (024 – Carer)
Theme 3: clinical factors
Subtheme a: treatment and side effects
Participant: ‘It’s hot here every day, and I’m exposed to the sun because I’m a farmer, so my skin became dark because of the medication.’ (019 – Patient)
Participant: ‘I kept vomiting when I swallowed the pills, so the doctor gave me [dimenhydrinate*].’ (010 – Patient)*Dimenhydrinate: an antihistamine medication used to prevent nausea and vomiting.
Participant: ‘She became weak. They said she had anaemia because of the medicines so the nurse gave her ferrous sulfate.’ (025 – Carer)
Participant: ‘When you take it in the morning you feel that nausea, right? But when you take it before sleep, you don’t feel anything.’ (026 – Patient)
Participant: ‘The treatment has so many medications, so many pills every day.’ (007 – Carer)
Participant: ‘Since the disease has a cure, you have to try to do everything to make things better.’ (016 – Patient)
Participant: ‘She told me she had to restart treatment, and the only thing I said was, "Do it, don't stop, continue to the end, take the steps you have to take".’ (017 – Carer)
Participant: ‘From the second day onwards, it was only improvement.’ (012 – Patient)
Participant: ‘I have already been treated for two years and I still have the leprosy. Where is there result? I wanted to stop taking the medicines, but the clinic staff said that wouldn’t be good.’ (010 – Patient)
Subtheme B: experiences of diagnosis
Researcher: ‘How long after seeing the first lesion did you wait before seeing a doctor?’Participant: ‘A year or so passed. I went to the doctor when I became numb.’ (010 – Patient)
Participant: ‘The hospital told me it was rheumatism. It got worse so I went to the clinic again. Then they told me I had advanced leprosy. If they told me sooner, maybe I would have suffered less.’ (004 – Patient)
Researcher: ‘When [the patient] was diagnosed, were you examined?’Participant: ‘No. Not me nor my children, no one. I didn’t think about [contact tracing] until you just said.’ (008 – Carer)
Participant: ‘The health professionals were concerned not only about me, but also my family. To prevent the disease, right?’ (017 – Carer)
Theme 4: HCP-patient-carer relationship
Participant: ‘I learned a lot from the doctor. She said there are five types of leprosy, and mine attacks the nerves and causes me to have reactions.’ (002 – Patient)
Participant: ‘The doctor said I have to take the medicine every day without fail, right?’Researcher: ‘Did they tell you about the side effects, the reason why you need it, anything like that?’Participant: ‘No.’ (001 – Patient)
Participant: ‘I was surprised. How come the doctor stopped the medication if I still had a lesion? It bothers me a lot that I stopped the treatment then. Nobody told me exactly why.’ (019 – Patient)
Participant: ‘The doctor at my clinic, I tell her everything. My whole story of suffering, everything.’ (019 – Patient)
Participant: ‘Maybe, the doctors don’t tell me about everything I should know.’ (006 – Carer)
Participant: ‘In the eyes of the doctors, I am better, but my leg still feels numb, that’s the problem.’ (002 – Patient)
Participant: ‘I was worried about my daughter. The doctor told me, “Look, she will live a normal life, study, date, everything.”. I felt relieved.’ (025 – Carer)
Participant: ‘I am always welcomed in the clinic. All the staff take good care of patients; they are very polite, very excellent indeed.’ (003 – Carer)
Participant: ‘The two doctors here are very good. If the doctors are worried about your health, they will find out what is wrong as soon as they can.’ (026 – Patient)