28 interviews were conducted in February and March 2020. Tables 3 and 4 summarise patient and carer participant demographics, respectively. One interview (011 – Patient) was discarded due to poor recording quality. Interviews lasted on average for 20 minutes, and ranged in length from seven minutes (013 – Carer) to 46 minutes (026 – Patient). All carers were family members of patients. No participants chose to withdraw from the study.
Table 3
Summary of patient participants’ demographics
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
|
Table 4
Summary of carer participants’ demographics
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
|
Separate analysis of the two groups produced two homologous sets of four interdependent themes: 1) ‘personal factors’; 2) ‘external factors’; 3) ‘clinical factors’; and 4) ‘the HCP-patient-carer relationship’. Tables 5 and 6 summarise coding for the patient and carer participant groups, respectively. Due to maximum variation sampling, the frequency of a specific view being mentioned is not indicative of the view’s importance, but rather its popularity and presence within the study sample [50].
Table 5
Patient themes representing factors influencing leprosy TOs
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 a ‘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 or lifestyle of patient (12)
♦ Change in identity, feeling labelled (8)
♦ Contradicting sources of education (11)
♦ Distrust of pharmaceutical medications (8)
♦ Experience or fear of stigma and discrimination (11)
♦ Feeling helpless (8)
♦ Isolation or distance (9)
♦ Myths and misinformation (12)
♦ Other comorbidities (6)
♦ Poor quality or 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 or 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 or physical preparation for treatment (10)
♦ Seeing or 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 or relationship with HCP (4)
|
Table 6
Carer themes representing factors influencing leprosy TOs
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 a ‘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 or lifestyle of patient (6)
♦ Change in identity, feeling labelled (1)
♦ Contradicting sources of education (7)
♦ Distrust of pharmaceutical medications (4)
♦ Experience or fear of stigma and discrimination (3)
♦ Feeling helpless (1)
♦ Isolation or distance (4)
♦ Myths and misinformation (8)
♦ Other comorbidities (6)
♦ Poor quality or 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 or physical preparation for treatment (9)
♦ Seeing or 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 or relationship with HCP (4)
|
Quotes have been selected to aid understanding of themes and subthemes, and illustrate similarities/differences in the sample’s opinion.
Theme 1: Personal factors
This theme explores factors which depend solely on the participant, and has been subdivided into the three subthemes: ‘knowledge and information quality’; ‘health beliefs’; and ‘psychological impact and character’.
Subtheme A: Knowledge and information quality
13 patients and 11 carers exhibited limited overall understanding of leprosy, with a sizeable proportion unable to provide even simple explanations about the disease, and almost all unable to identify the cause of leprosy transmission.
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)
Despite all participants either experiencing leprosy relapse, or caring for a relapse patient, relapse was poorly understood in all but one participant. Many patients and carers did not realise that the treatment they/the patient was receiving at the time was a separate, second course of medications, targeting relapsed leprosy. Some patients perceived education as part of their HCPs’ responsibilities, and consequently blamed their poor knowledge of relapse on inadequate HCP-led education.
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)
Some carers had poor knowledge because they perceived the patient as the primary knowledge source, and did not use other means accessible to them to obtain further information. Carers with good knowledge were proactive and resourceful when searching for information.
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)
More knowledgeable participants agreed that the internet, for those able to access it, and television programmes, were useful, information-rich sources supplementing HCP-given knowledge between clinic visits. Programmes dedicating airtime to Brazil’s national leprosy campaign, ‘Purple January’, were effective in raising public awareness [66]. Some participants expressed the importance of mass, societal education on leprosy, and alluded to schools being an effective medium.
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)
Some felt that knowledge gained via ‘word of mouth’ was less reliable than HCP advice, which was greatly valued. However, others gained rich, anecdotal knowledge through speaking with ‘expert patients’.
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)
Some participants were familiar with leprosy’s biblical associations [66]. However, these participants agreed that the Bible is not an accurate source of information concerning treatment.
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
Many perceived leprosy as a dangerous or contagious disease posing threat to health. Consequently, when asked to hypothesise about why other patients may have poor medication compliance, participants felt this was due to a poor regard for personal health.
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)
Carers believed their health was of elevated importance, due to their patient responsibilities.
Participant
‘The importance of my health is everything because … I dedicate myself to [the patient].’ (003 – Patient)
Most participants felt positively towards pharmaceutical leprosy medications. Participants who witnessed their own or another’s leprosy improve more commonly expressed belief in the medication.
Participant
‘Because others have healed, why won’t I?’ (022 – Patient)
Conversely, those who had not witnessed symptomatic improvements expressed distrust in the medication. Despite this, all patients, including those distrusting medication, stated that they were wholly compliant with their medication regime.
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)
Some participants, despite perceiving the medication positively, did not believe that the medication was curative. Some justified this belief by explaining that the medication could not possibly treat severely advanced leprosy, but only alleviate symptoms.
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)
Some interviews show evidence of people incorrectly believing that their medication side effects were instead a sign of their leprosy prognosis worsening. Numerous labelled the pharmaceutical medications as ‘strong’. Some hypothesised about the effectiveness of ‘natural’ remedies, which were perceived as ‘safer’.
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)
The importance of medication compliance to participants became apparent when they were asked about what advice they would give to a newly diagnosed leprosy patients. Despite some participants expressing disbelief in treatment, almost all stressed the importance of compliance.
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
All patients and 11 carers described leprosy exhibiting significant psychological impacts. For most of these participants, this impact was prolonged, spanning from the time of symptom appearance and persisting indefinitely. Numerous patients felt they were no longer ‘normal’, and felt labelled as ‘sick’. Visual leprosy manifestations affected self-esteem. Participants expressed desperation for a cure.
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)
This altered sense of identity was augmented by the impact leprosy had on the roles and responsibilities of participants; due to issues surrounding the ability to work, fear of disease transmission, and dependency on others.
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)
Nine patients and four carers felt leprosy caused isolation and distance, causing further psychological impact. Isolation had the greatest psychological impact when experienced with close family members.
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)
11 patients, compared to only three carers, reported experiences of stigma. This shows a lack of conversation about stigma between the groups. Several participants reporting stigma were parents of infected school-going children. Leprosy’s biblical links, widely recognised in Brazil as a predominantly Catholic country, [67, 68] caused experiences of shame and self-stigma.
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)
However, almost all participants emphasised the importance of a positive patient outlook. Both groups recognised negative behaviours which could enhance leprosy’s psychological impact, and agreed this could be combatted by a desire to be cured and an optimistic attitude. Many carers spoke of keeping patients positive and motivated towards being cured.
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)
Six patients mentioned the difficulties of managing their comorbidities alongside leprosy (namely aging, hypertension, alcoholism and drug use, mental health illness, obesity and diabetes), which resulted in new or worsening psychological symptoms. Further issues surrounding polypharmacy, worsening general health and poor treatment regimen commitment caused ‘distress’ in patients.
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
External factors describe factors outside of patient control. This theme has been subdivided into three subthemes: ‘socioeconomic factors’; ‘structural factors’; and ‘support factors’.
Subtheme A: Socioeconomic factors
The socioeconomic impact of leprosy was mentioned by all patients and the majority of carers. Eight patients and seven carers felt leprosy had financially impacted them, as their ability to work was restricted due to symptoms and side effects, or carer responsibilities. Wider financial implications concerned rent payments, costs travelling to clinics, and household/family costs. One patient explained that ‘Bolsa Familia’, a Brazilian social welfare programme which provides financial aid to poor families on the condition that their children are attending school and are vaccinated, partly supplemented lost earnings [69].
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)
Younger patient participants felt leprosy would impact them financially because their career aspirations would be affected, as they expected to face a lifetime of stigma in the working environment. Some felt these implications were exacerbated by local job shortages.
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
Structural factors concern organisational, regional and national level issues affecting the care patients receive. While four patients and six carers felt the care they received was holistic and individualised, numerous disagreed. Participants felt there was insufficient regional investment in services addressing the psychological needs of leprosy patients.
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)
Six patients and two carers felt the health care system was disorganised, which consequently negatively impacted their perceptions of care. Two patients noted medication and healthcare equipment resource scarcity in clinics, with one participant explaining that rural clinics had an additional lack of specialised staff. Some participants blamed this on the government’s poor national and regional healthcare decision making. One carer felt that despite this, resources were pragmatically distributed.
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
Support from HCPs was reported by all participants. This came in the form of imparting knowledge, prescribing medication, and providing strategies to make side effects less noticeable.
Participant
‘[The HCPs] helped me a lot. In everything. In giving advice, explaining things …’ (010 – Patient)
Participants felt family support was ‘vital’. While both groups recognised that leprosy impacted family and societal relationships, due to stigma, transmission risk, and dependency, both groups also credited their support. Patients and carers who had a lack of dialogue between them about leprosy reported less intimate, unreliable support provision. Conversely, open patients who educated their carers about leprosy empowered them to provide individualised support.
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)
Support from the family and social circle came in emotional, nutritional, psychological and financial forms.
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)
Participants in both groups used their religion as another form of psychological support.
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
Clinical factors refer to a patient’s healthcare necessities. This theme is subdivided into two subthemes: ‘treatment and side effects’, and ‘experiences of diagnosis’.
Subtheme A: Treatment and side effects
Twelve patients and five carers experienced medication side effects. The most frequently occurring side effect was sunburn; due to a photosensitivity reaction associated with dapsone [70]. Other commonly reported side effects were headache, gastrointestinal problems, and weakness. Participants worked with HCPs to find strategies to overcome side effects, making the medications more agreeable to patients.
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)
All participants commented on the long nature and dose frequency of the treatment schedule. Many felt that being mentally prepared to take the medication was important in remaining compliant. Carers encouraged patient compliance. The majority either saw or felt improvement with medication, while some, who did not, felt less motivated to stay compliant.
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
10 patients recalled a delayed diagnosis. For some, this was due to receiving an initially incorrect diagnosis, which left patients ‘distressed’. For others, this was because they did not seek HCP advice until their symptoms significantly progressed. Only four patients and three carers recalled contact tracing within their household. Through these responses, it became apparent that contact tracing was not only uncommon, but, when done, too infrequent to be effective [71].
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
This theme explores how the relationship between HCPs, patients and carers impacted TOs.
All participants felt HCPs were vital to their care, and recognised the importance of a strong HCP-patient-carer relationship. This relationship served as the foundation for good communication and trust. While nine patients and six carers felt that communication was good with HCPs, others disagreed. The clarity of information provided by HCPs similarly received mixed reviews, leading several to feel that the medication regime was ‘complicated’. Many reported that HCPs simply stressed the importance of treatment compliance, but did not offer deeper information.
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)
Opinions were also mixed concerning the trust between HCPs and participants. Some participants suspected HCPs of omitting important information during consultations. For others, outcomes desired by patients appeared misaligned with those desired by HCPs. The interdependence of trust and good communication becomes apparent through such responses.
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)
Most participants, however, felt comfortable sharing worries with HCPs. A number mentioned specific staff members who were exceptionally helpful in their care. Participants felt valued by HCPs, and respected in the clinical environment.
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)