Pages 353 - 366 Volume 91, Issue 4
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Leprosy in Kiribati: the lived experience
Objectives:

In spite of much progress around the world in eradicating leprosy, it continues to be a significant problem in the Pacific Island nation of Kiribati. In order to better understand elements that may contribute to leprosy’s continuing threat, the research reported in this paper set out to address the following research question: what is the lived experience of leprosy amongst Kiribati people? The research had a qualitative design and used in-depth interviews with seven people with leprosy and one parent who accompanied one of the participants. While there have been small survey projects, there has been no previous in-depth investigation of this topic in Kiribati to our knowledge.

Results:

Studies in other countries have found that traditional healers played a significant role in how people managed leprosy. There was little evidence that traditional healers played such a role for the participants in this study. Two key themes that did emerge from the data were recognising leprosy and the ongoing role of stigma. Participants did not seem to have a high level of awareness and sometimes misrecognised it. Though some authors have found that stigma is not evident until after people are diagnosed with leprosy, some of the participants in this study anticipated stigma prior to diagnosis, in spite of what appeared to be low levels of awareness of the disease. Stigma, both anticipated and enacted, was evident in a range of settings for participants.

Conclusions:

There is an ongoing need to understand local context when delivering leprosy awareness programmes to try to avoid reinforcing, rather than mitigating stigmatisation surrounding leprosy.

Cite this article
Lee Thompson, Nabura Ioteba, Steve Chambers;
Leprosy in Kiribati: the lived experience ; Leprosy Review; 2020; 91; 4; 353-366; DOI: 10.47276/lr.91.4.353
LEPROSY
Leprosy Review
0305-7518
British Leprosy Relief Association
Colchester, UK
Introduction
The objective of this study was to explore the experiences of those living with leprosy in Kiribati. Leprosy is caused by the bacillus, Mycobacterium leprae (M. leprae) and is amenable to treatment using a prolonged multi-drug treatment (MDT) regime with three antibiotics. Leprosy causes damage to the skin and peripheral nerves and can be severely disfiguring and may manifest itself with a range of dermatological presentations, the most common of which are pale or white lesions.1 In the advanced stages, people can present with very obvious open wounds, ulcerations and physical deformities.2 People with leprosy carry a heavier burden of mental illness,3,4 and therefore psycho-social disability. Even though leprosy is curable, and non-ulcerated skin lesions heal, permanent disfigurement and disability from tissue destruction and nerve damage can give the impression that a cure for leprosy in the fullest sense is not possible.5 Early diagnosis and treatment can prevent disabling complications although they may still have a complicated clinical course.
While this disease has been eradicated in many parts of the world, in 2016, over 214,000 new cases of leprosy were reported globally.6 Recent figures indicate that more than 80% of newly detected cases reside in the subtropical regions of India, Brazil, Ethiopia, Bangladesh, and Indonesia.7 Many of the reported cases within the last decade have come from the Pacific Islands, including Kiribati.8,9 It is thought that leprosy was introduced to the Pacific Islands as recently as the 19th century via migration and traders,10 but not absolutely clear when it arrived in Kiribati. Contact between Europeans and Islanders accelerated from about 1830.11 Records show that in 1925 there were 28 known cases of leprosy.12,13 Leprosy has been and remains endemic in Kiribati, with an annualised rate of 15 new cases per 10,000 population during the 2013–2017 period, and higher rates in more populous parts of the islands.13
Kiribati became a republic in 1979. It had been part of the Gilbert and Ellice Islands, which became a British protectorate in 1892 and a Colony in 1916.11,14 The small island nation, with a population of 110,00015,16 consists of 33 coral atolls in three separate island groups.17 The main island of Tarawa is geographically and politically structured into three areas known as North Tarawa, South Tarawa (where most of the government administration and departments are located) and Betio, an islet at the southern end of the main island. Over half the total population (72.9%) lives on the main island of Tarawa with 15.7% of those in Betio. Betio has a land area of less than two square kilometres,16 is very densely populated at 10,377 people per square kilometre and has the highest rates of leprosy.18
Unemployment and overcrowding are major issues for the country.19 Health problems persist in the form of non-communicable diseases, tuberculosis, maternal and childhood morbidity. In the health sector, there are issues with appropriate buildings and facilities, and sub-optimal numbers of clinical and technical health services.20 Inconsistent transportation and the huge spread of the islands and people over a vast ocean area pose major difficulties in the delivery of services.15 Despite these socio-economic and infrastructural challenges, the Ministry of Health and Medical Services administers a publicly funded health system that includes a national referral hospital in South Tarawa (126-bed Nawerewere Hospital), two district hospitals in outer islands, and another small hospital providing basic medical services in Betio. Primary health care is provided through a network of close to 100 health centres and outreach village clinics throughout the islands, staffed by medical assistants who are experienced nurses with advanced training.15
The Kiribati National Leprosy Programme has local staff and an administration building located at the Skin Clinic and National Leprosy Centre. In close partnership with the Ministry of Health and Medical Services, and the World Health Organisation (WHO), the Pacific Leprosy Foundation (PLF), which has headquarters in New Zealand, has been the major driver of funding, planning and implementation of initiatives in ongoing leprosy control programmes. In line with the WHO global strategy for the elimination of leprosy, the government of Kiribati, in partnership with the WHO and the PLF implemented a campaign that involved population screening and mass chemo-prophylaxis in the late 1990s, following which the prevalence apparently dropped.21,22 However, between 2003 and 2010, prevalence began to rise above the WHO elimination target, fluctuating between 0.9 and 16.9 per 10,000 population, with new case detection rates between 22.3 and 179.9 per 100,000 population.23 These large fluctuations likely reflect varying intensities of leprosy surveillance programmes in Kiribati, with high rates in recent years coinciding with increased activities that include contact tracing by the National Leprosy Programme and Skin Clinics organised by the Pacific Leprosy Foundation.18
The need to find ways to halt and control the endemicity of leprosy in Kiribati is becoming more urgent from a public health perspective. People whose diagnosis has been delayed or who remain undiagnosed not only become sources of transmission of the disease, but they are also at real risk of developing severe and disfiguring complications.8,2428 People with leprosy have such a wide range of symptoms and manifestations of the disease that confusion regarding diagnosis exists amongst both health workers and sufferers alike.29,30 Leprosy symptoms and manifestations vary because of the characteristics of M. leprae and an individual’s immune response to the disease.31,32 Furthermore, the long incubation period for leprosy, ranging from one to 20 years or more, and averaging five years,33,34 adds difficulty to its detection and management. This prolonged phase means that people exposed to and carrying M. leprae may be asymptomatic but be carriers for many years.34 In addition to delayed diagnosis related to the long incubation period, there are a range of other factors that may contribute to delayed diagnosis. Awareness of the disease and its management, stigma and the role of traditional healers have all been identified as potentially important in understanding delayed diagnosis.
Raising awareness about the signs and symptoms of leprosy can be challenging. Croft and Croft’s study35 in Bangladesh, for example, comparing knowledge from communities that had received intensive community health education and those that had not, found alarmingly high proportions of people who did not know the cause of leprosy in both communities (84% and 96% respectively). A recent project by Batio,36 looking at factors that contribute to late presentation among i-Kiribati people with leprosy, reported that a significant number of participants (23/29) claimed they were not aware of leprosy.
Stigma is prevalent in both endemic and non-endemic countries3739 and has a very long history going back to biblical times, though many dispute the categorisation of leprosy in the Bible,4042 noting that ‘leprosy’ refers to a diverse set of diseases and is ‘used as a symbol that aggregates all of the harmful consequences of impious behaviour’.41 Though bacteriological discoveries in the later 1800s identified leprosy as a contagious disease and eventually treatable by about 1945, it was historically viewed in some parts of the world as a manifestation of godly displeasure and therefore incurable.2,43 The key response to the eventual recognition of contagiousness prior to effective treatment was segregation.44 In a number of parts of the world the recognition and management of leprosy has also been intertwined with processes of colonisation, the marginalisation and ‘othering’ of particular ethnic groups, Christian missions and medical and public health activity in ways that may have reinforced stigmatisation.45,46 The association of leprosy with impiety, banishment, segregation and even public executions continues to linger in some communities.47
It is hard to identify the exact beginnings of leprosy stigma in Kiribati, but a policy of isolation cannot have helped. Bike, an uninhabited island, was occasionally used informally for isolation. Bikenibeu was the Government-approved isolation facility on Tarawa where some patients were temporarily housed prior to and following isolation in Makogai. Makogai was a Fijian island leprosarium, run by the Roman Catholic Church and government medical authorities, which operated between 1911 and 1969.46 People from Kiribati were first sent to Makogai in 1937.13
The WHO Expert Committee on Leprosy recognised that a ‘lack of proper understanding of leprosy and the unconstrained propagation of traditional myths and beliefs have led to the development of negative social attitudes, resulting in social discrimination and stigma against persons affected by leprosy and their families’.48 The persistence of such beliefs means that a diagnosis of leprosy can be akin to a death sentence – literally explained by patients as ‘the threat […] to the status and continued normal functioning of the individual or their family within the community’ (Ref. 2, p. 206) affecting quality of life, marriage, employment, relationships and attendance or participation in leisure, social and religious events.4,49 These experiences of stigma are remarkably consistent across different countries with diverse cultural and religious beliefs,50 but they have not been historically ubiquitous.45 Lewis,51 for example, remarked on the absence of leprosy stigma in New Guinea. For the population groups Lewis discusses, there were a range of other diseases that locals found more immediately problematic than leprosy.
Reliance on traditional medicine, estimated by the WHO52 to provide up to 80% of healthcare needs in developing countries, can complicate help-seeking behaviours. Because these practices are culturally defined, accessible, and accepted, they become essential aspects of community life and traditions.53 People may delay seeking help until they have first consulted traditional healers.54,55 In spite of the barriers identified above attitudes are changing, albeit very slowly,47 with some countries such as Brazil making progress on reducing stigmatisation.41
While there is a significant body of international literature that sheds light on the complex cultural, social and economic issues that may contribute to delayed help seeking, it is important to understand local context, beliefs and practices as they relate to leprosy.56 The study reported in this paper was designed to explore the experiences of people living with leprosy in Kiribati in more depth than has been the case in previous studies. Investigating peoples’ experience in-depth helps to elucidate local beliefs and practices that may impact on continued transmission and delayed diagnosis.
Material and methods
The broad approach taken to this research was interpretive phenomenology, within a qualitative design. Phenomenology is both a philosophical movement and qualitative research tool that can be applied to study phenomena, their nature, and meanings.57 Consistent with the qualitative nature of this research, Langdridge58 defined phenomenology as an inquiry with a focus on people’s lived experiences that encompass their perceptions of the world, where meaning and experience are socially constructed. Multiple realities can exist, and researchers need to understand and incorporate the links between people’s experiences and cultural, social, and political environments.57,59,60
With permission from the Kiribati Ministry of Health and the Pacific Leprosy Foundation, a list of fifteen potential participants was created from the database of i-Kiribati people diagnosed with leprosy, available from the National Leprosy Programme. Participants were recruited with help from the Pacific Leprosy Foundation welfare officer and staff from the National Leprosy Programme. It was beyond the scope of this work to extend the research beyond the main island of Tarawa, which is relatively urbanised. A range of participants was recruited to include the widest clinical and demographic parameters that could be accommodated. The eventual sample of seven participants included three males and four females. They ranged in age from 17 to 75 years. Two older participants had retired, three had either casual or full-time employment, and the younger two participants were still attending school. To try to protect participants’ identities in a relatively small community, no further information is provided about the participants, beyond whether they are ‘older’ or ‘younger’ and their gender.
In-depth interviews were used to generate data. Interviews are an appropriate approach when detailed insights are required from participants, particularly in exploring sensitive topics that participants find difficult to talk about in group settings.61,62 Interviews were conducted by the second author (NI) who is of i-Kiribati descent and therefore could identify with the study participants on common cultural and traditional matters, despite having lived in New Zealand for 29 years. In addition to completing this research as part of a Master of Public Health degree, he is a medical doctor who has been involved in Pacific Leprosy Foundation outreach work conducting skin clinics in Kiribati. Interviews were conducted in the Kiribati language during January 2017. Ritchie et al.63 argue that capturing data in participants’ native language emphasises depth, nuances and participants’ understanding of the meanings of their experiences.
Ethical approval was granted by both the Kiribati Health Research and Ethics Committee and the University of Otago Human Ethics Committee with the reference number H16/105. Participants were given an information sheet and consent form in the Kiribati language and assured of the confidentiality of the data, their right to withdraw from the project and information about supports if they were thought to need them.
Before the start of each interview, personal introductions were very important. Establishing a good relationship with participants and putting them at ease helped create a climate of trust which is a prerequisite for a successful interview.63 Participants were welcome to bring along any support people they wished to be present during the interviews. Interviews were audio-recorded with the participant’s permission, transcribed and translated into English. Three general areas covered during the interviews were events leading to participants seeking help, issues and reactions to diagnosis, and experiences and impressions of living with leprosy. The three key topics were addressed with sufficient flexibility to accommodate the order of topic discussion most suitable to the participants. The interactive nature of semi-structured interviews, with initial non-specific questions, encouraged participants to talk freely. Participants were offered AUD$25 as a gesture of thanks and to cover out of pocket expenses. The data were analysed thematically using Braun and Clarke’s64 six-step guide. These steps provide a systematic guide to coding interview transcripts for thematic analysis.
Results and discussion
Research has continued to highlight the moral and sometimes supernatural aspect of attitudes to leprosy.65 I-Kiribati people are generally spiritual and believe in good ancestor spirits that tie clans together, as well as antagonistic deities that can bring ill-health or misfortune.66 However, despite probing questions and asking the participants specifically for any spiritual connections to do with leprosy, there are only a few hints in the data. The themes discussed in this paper are recognising leprosy and negotiating stigma.
Recognising leprosy
The range of time from onset of symptoms to recognition that participants needed to seek medical care varied greatly from a few weeks, to a few months, and up to several years for the older participants. People often associate leprosy with disfigurements, disabilities and abandonment,47 so in the absence of disfigurement, isolated skin patches may not be concerning.2,56 Skin lesions with white patches were commonly reported by the participants. Few initially took notice of these lesions until there was a change in size, shape or colour:
It happened while I was in primary [school] … it occurred on my leg and arm … just a dot … just a white patch … (Young woman, 20s)
It was something small, white spots on my forearm … it began to move up (Older woman, 70s)
Over time, due to nerve damage, lesions can become numb. Rather than seeing her lesion as in any way pathological, the young woman above used to entertain school friends while in primary school by cutting and burning her skin lesions as a show of ‘extra-ordinary power’.
The older participants often had family histories of leprosy that raised their awareness to some extent. Much of what they knew came from village conversations, and, in some instances, seeing and observing people affected by leprosy. Seeing people with disease manifestations that were visibly disfiguring and disabling often left lasting impressions for the participants as it does elsewhere.67 As a young man, one of the older males lived close to where people affected by leprosy stayed for treatment:
It’s very scary this disease known as leprosy … It’s quite quick to spoil the body of affected people during that time … Just like it’s no longer the face of humans …’ (Older man, 60s)
Though older people had heightened awareness, this awareness did not always result in prompting help seeking. The association of leprosy with high levels of disfigurement tended to reinforce for some that simple white patches were not serious:
Mr, you are talking nonsense – I am not a leper …because I didn’t expect it to be leprosy … so I was angry about it because it’s not leprosy … [He said] come over and I’ll show you a picture of something similar … I gave in because you could see him [in picture] standing and his forearm [lesion] was very much like the lesion on my forearm … so I gave in … you’re right Mr, I do have leprosy…(Older woman, 70s)
This older woman went on to say that she remembered her mother being treated for leprosy. But, she said her mother’s skin lesions were not obviously disfiguring, and this raised doubt for the family who thought that what the mother had was not ‘real’ leprosy:
My mother had leprosy but it’s not real leprosy like the real leprosy … it just occurred on her skin but not bad … like cluster of lumps too … As they said … people did, supposedly your face is unusual … Such that if you look it’s unsightly … If you really look at their skin and it’s obviously severe … If you’re a leper and you will be taken to Bike [A small uninhabited islet where people affected by leprosy were taken for isolation] … because they said it’s very scary …(Older woman, 70s)
The Pacific Leprosy Foundation public awareness campaigns have been conducted in Kiribati since 2015. These campaigns, which occur on radio, in schools and in print form in the island’s newspaper and posters in clinics and billboards in public places (pers. com Jill Tomlinson), reinforce that leprosy is not heritable, but is instead a contagious disease that can be successfully treated. Some participants credited these messages with dispelling myths and prompting them to present for investigation:
Now we know that leprosy can be transmitted … we no longer believe it’s in the blood line … the disease can be transmitted … Also, it can be cured with available treatment (Mother, 30s, who attended the interview with Young man, teens).
When I listened to the radio and I knew it’s leprosy …from my hand … and I began to feel frightened … Mrs [to wife], you got money (why?) … it’s better that I go to Nawerewere and find out exactly at the leprosy office… (Older man, 60s).
Revealing their understanding of the contagious nature of the disease, a few participants could not identify where they might have been exposed to leprosy, but most could recall events that may have led to exposure. One participant, for example, recalled his habit of dropping off fish to his wife’s aunt:
I didn’t know she was sick … such that when I bring her fish for food and I will often lie down … even beside her on her sleeping mat… (Older man, 60s)
In spite of what appears to be growing recognition and changing understandings that demystify leprosy, elements of ongoing stigma were evident in the data.
Stigma
The long history of stigma surrounding leprosy is not automatically eradicated with contemporary information. Both anticipated and enacted stigma were evident in this study. Anticipated stigma plays a role in governing how people themselves respond to leprosy pre- and post-diagnosis. Enacted stigma largely relates to the stigmatising actions of others. Fear, shame and guilt are negative emotions that are often associated with stigma.68 Fear of infection can be one of the most common causes of stigma, but it is unclear whether fear of infection is related to not knowing the source of infection, knowing that one now has an infectious disease, or a fear of infecting other people.60 When fear is coupled with shame and guilt, as is the case in a number of diseases including leprosy,38,6971 this can provoke unhelpful responses such as delayed help seeking.38 Though Engelbrektsson and Subedi38 found that stigma was something to be dealt with after diagnosis rather than prior because their participants were largely unaware that what they had was leprosy, anticipated stigma was evident in our study prior to diagnosis in the ways people talked about fear of being diagnosed. While likely to have had less exposure to some of the more physically dramatic impacts of leprosy and more exposure to current information about leprosy, two of the study’s younger participants felt shame about attending the leprosy clinic and contemplating being classified as a leper:
I didn’t want to come here (hospital) … because I’m ashamed (Young man, teens) … because I was ashamed … I really don’t want to be a leper…’ (Young man, 20s)
A particular concern for the participants was their feeling of anxiety about infecting family members:
I was fearful and ashamed … ashamed and then I got worried for my family … in case it may get passed (Young man, 20s)
This participant admitted feeling relieved when told that by taking treatment, he would not be putting his family at risk of getting leprosy. In most cultures, and particularly for Pacific peoples, family are usually seen as a blessing and something that is of great value.72,73 Not only are families necessary for the maintenance of good health and well-being, they are integral to providing care and support to those members that need help and assistance with healing.74 Kumar and Anbalagan (1983) found that people with leprosy experienced lower levels of negative attitudes from their family, when compared to those from neighbours (17.34% vs 45.8% respectively).75 But, prejudice, discrimination, family rejection and banishment, in some cases, has also been reported.60 Family members and those closest to the study participants were sources of enacted stigma, even if likely to be well meaning in some cases. Interactions with family members were, therefore, not always comfortable and family relationships could become strained:
My brothers were very surprised … ‘how come he got the disease? Are you treacherous?’ … I was quite saddened …sometimes they look at me … their eyes – were unhappy (Young man, 20s)
This notion of treachery indicates some perception of wrongdoing. Though we are speculating here, it could be that the idea is based in either or both early Christian understandings of leprosy as a sign of impious behaviour41 involving divine retribution for wrongdoing, or indigenous beliefs based on the idea that misfortune or death may result from not behaving properly towards the gods.76 Clearly these two very different traditions, share similar ideas about punishment. The use of the word treacherous suggests the persistence of such understandings, in spite of recent exposure to information about the bacterial origin of the disease. A younger participant in the study felt ashamed when she was told by her family to keep her distance from the rest of the household after they heard of her diagnosis:
… we have to distance ourselves for a while … my grandmother told me to keep at a distance [during sleeping time] (Young woman, teens)
As soon as someone is treated for leprosy, they become non-infectious, so no distancing is required. The grandmother’s insistence on distancing reflects the way leprosy was managed before effective treatment became available and the persistence of potentially stigmatising actions. Another young woman shared her diagnosis of leprosy with her now ex-partner. She reported that he used this knowledge to belittle her, though she said their separation was not directly related to her being diagnosed with leprosy:
… he spoke – and kept referring back to my illness such that I would feel subdued by it: ‘you are a leper and a sick one’ … it became his golden verse … when he becomes angry he blurts it out … he probably thought I will be embarrassed (Young woman, 20s)
This young woman had a strong support network and laughed off the ex-partner’s derogatory comments, because she said they were due to his ‘lack of knowledge about leprosy’. He now played no significant role in her life and her priority was the well-being of her young children. While this young woman’s account is encouraging insofar as she was able to leave a verbally abusive environment, women with leprosy in other parts of the world have run the risk of losing custody of their children.77 It is also a reminder that leprosy is but one part of each sufferer’s life and crosscuts with gender, ethnicity, socio-economic status and many other aspects of identity78 which can be brought together in ways that may enhance stigmatisation.
Though some are able to deflect stigmatising responses, for others the anticipation of stigma leads to efforts at concealment.79 Concealment is often exercised by stigmatised people to blend in with non-stigmatised groups and therefore avoid conflict.80 Concealment can take the form of avoiding questions about the disease or telling lies to deflect unwanted scrutiny.79,81 One of the younger participants often found her school environment difficult to cope with and explained that she ‘doesn’t have any friends’. As the interview progressed, it became clearer that she felt the need to develop ways of preventing the teacher and the other pupils from knowing about her illness. Keeping her diagnosis secret was more difficult as she had several obvious physical manifestations of leprosy, including the loss of one eyebrow:
… I went to school and they [classmates] asked, ‘What happened to your eyebrow?’ And I replied that I shaved it … (Young woman, teens).
When her eyebrow had not re-grown after a while, some of her classmates even suggested to her that she may be cursed. She found that saying her eyebrow loss was due to a curse was readily accepted, and particularly to her relief, by annoying and repeat inquirers. This young woman also had darkened skin. This noticeable change in skin tone is a known temporary side effect of Clofazimine which is one of the drugs in the MDT combination.82,83 Darkening of the skin is not acceptable in some cultures55 and her school teacher equated the darkening with dirt:
First she told me – ‘you look dirty – go wash your face … it’s really darkened’ … and then I wouldn’t want to attend school (Young woman, teens).
Other participants, similarly, attempted to hide their diagnosis by pleading ignorance of what was causing any physical manifestations they had:
I don’t really know for sure what it is [if any of his friends asked him] (Young man, teens)
Another participant witnessed bad treatment by the family of one of his friend’s uncles, who had tuberculosis. His friend’s uncle was segregated to his own small hut within the extended family’s compound, given food to eat alone with separate utensils, not allowed to join family gatherings, and ‘sadly, got told off a lot like a child’. It was because of this experience that when he was diagnosed with leprosy, the young participant thought hard before discussing his illness with anyone. He imagined himself being in the same situation as his friend’s uncle. He made it clear to his father that he was the only one from the family who knew and that the young man felt ashamed of the disease:
I was most comfortable when talking to my dad … he was the one I’m used to be with when I was younger…. I’ll be lying [if anyone asks] … I also hide my medications (Young man, 20s)
This young man was not alone in commenting that he wanted to keep the fact he was taking medication for leprosy secret. Not only is the felt need for ongoing concealment likely to be stressful, it may lead to other unintended consequences. Treatment for leprosy with MDT in Kiribati, although free and effective (if taken as prescribed) as in most countries, is quite prolonged at 6 months for those with fewer than five skin lesions and at least 12 months for those with more than five.8486 Given the length of time that a course of medication for leprosy needs to be taken, trying to hide medications for extended periods of time in situations where people live relatively communally is challenging and could theoretically contribute to decreased compliance with treatment.
It was noticeable from the interviews in the current study that the males generally wanted more autonomy in deciding how they received their medicines. They preferred to pick up the medications themselves ‘without people noticing’, rather than getting them delivered to their homes by easily identifiable directly observed treatment (DOT) healthcare workers. Female participants were less concerned about the process of receiving medicines and generally accepted the convenience of not having to travel for their monthly supply, which allowed them to continue with their daily chores.
Experiences of stigma in this study are generally similar to those of other leprosy-affected people in different cultures and settings.38,50,68 Shame, fear and embarrassment were common emotional responses to stigma. Perceived stigma was also evident for all participants and was anticipated from close family and relatives as well as more distant friends and community members. Enacted stigma was manifested in prejudicial attitudes and discriminatory behaviours from the same people. Responses from participants in the study about trying to conceal their diagnosis, avoid questioning and falsify explanations for the various manifestations of leprosy have been reported by other researchers.81,84 This study has though revealed slightly more complexity in the way gender may matter in experiences of stigma and the management of those affected by leprosy.
Concluding comments
The ultimate vision of the Global Leprosy Strategy 2016–202087 for a world free of leprosy remains aspirational. As a prominent social effect, stigma plays an important role in the lives of people affected by leprosy and their families.49 In spite of some clear examples of shifts in thinking, it is evident that the two themes, discussed in this paper, of recognising leprosy and managing stigma, remain significant issues for people living with leprosy in Kiribati.
These two themes are, to some extent, co-dependent. Recognising leprosy is about more than simply learning and recognising that a white patch somewhere on the body may need to be examined to determine if the person has leprosy; it is also about understanding how existing perceptions of leprosy as a stigmatised condition may hinder people’s willingness to present in healthcare settings and influence how they manage their condition after diagnosis.
The research reported here, like all research, has some limitations. The sample size was small, meaning no claims to representativeness can or should be made; that was not a goal of the research. This study aimed to explore the lived experience of i-Kiribati people with leprosy. Investigating their stories and experiences helps to provide a deeper understanding of issues that are important to those with this disease. The results from this qualitative research add to the small body of literature on Pacific people’s lived experiences with a curable disease that can be chronic, debilitating and disfiguring. In practical terms, the findings suggest that several areas need continued focus. The first of these is the importance of continued awareness-raising campaigns focused on the bacterial origin and contagious nature of the disease, recognition of early signs of the disease and the importance of early diagnosis. It is always important to continue to assess whether there may be physical barriers to care for those in outlying areas or with heavy household responsibilities.36
It is clear that stigma is still a significant issue and while that is the case, there is a need for sensitivity to those who, for instance, want more autonomy over how they receive their medications so as not to advertise the fact that they have leprosy. But, in many ways people trying to hide their diagnosis by controlling who has information about it appear to be trying to pass in Goffman’s88 terms as ‘normal’ – as disease-free. This response may reinforce stigmatisation because it reinforces hiddenness, even though it may be understandable. The option of trying to pass as ‘normal’ is only available to any degree to those without visible signs that reveal their condition. Controlling known-about-ness88 is much more complex for those with obvious signs and as indicated earlier people use a range of strategies to try to deflect attention. Well-intentioned campaigns to raise awareness and reduce stigmatisation may also reduce control over known-about-ness. For example, providing publically available education about medication side effects, such as skin darkening, may help those so afflicted if the public response is acceptance. On the other hand, if people know of this side effect and link it to leprosy, then the person with leprosy’s diagnosis is made public whether they wish this to be the case or not. We are certainly not arguing that such awareness-raising work, which already occurs, should cease, but it must be done with good awareness of the potential for unintended consequences and plans for how these might be anticipated and managed. Given some of the gaps in understandings, it is clear that there is a need to continue to raise awareness about the signs of leprosy and to perhaps consider age-appropriate support groups. This research contributes to the already-existing body of work on stigma surrounding leprosy in general, particularly that in low-resource countries. It highlights the fact that understanding the local socio-cultural context in which people live their lives is very important in avoiding the exacerbation of problems created by stigma that may come from a range of other sources in addition to the leprosy diagnosis. The subtleties of addressing stigmatisation remain difficult and do require sensitivity, careful thought and local contextual understanding.
Acknowledgements
We would like to say thank you to the participants for generously giving up their time for the interviews. We would also like to thank the administrators of the John McLeod Fund for financial support for Nabura Ioteba’s fieldwork in Kiribati. We confirm that the researchers and funder were independent of each other. Finally, we wish to thank the staff from the Kiribati Ministry of Health and Medical Services, The National Leprosy Programme and the Pacific Leprosy Foundation.
Copyright
This material has not been published in its present or any other form in any other scientific journal.
Conflicts of interest
All authors declare that the answer to the question on competing interest forms are ‘No’, and therefore have nothing to declare.
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