Lepr Rev (2020) 91, 353–366 doi:10.47276/lr.91.4.353 Leprosy in Kiribati: the lived experience Lee Thompsona, Nabura Iotebab & Steve Chambersc aAssociate Professor, Department of Population Health, University of Otago, Christchurch, New Zealand bDoctor, Public Health Registrar, Christchurch, New Zealand cProfessor, Department of Pathology, University for Otago, Christchurch, New Zealand Submitted 9 July 2020; Accepted 20 August 2020 Summary 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. Inorder 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 tra- ditional 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. Keywords: Community stigma, social distance, leprosy, Kiribati Correspondence to: Lee Thompson, Associate Professor, Department of Population Health, University of Otago, Christchurch, New Zealand (e-mail: [email protected]) The work reported in this paper was carried out in Kiribati and New Zealand. © The author(s). This article is Open Access under CC BY 4.0 353 354 L. Thompson et al. 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 in Kiribati: the lived experience 355 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, withnew 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.8,24–28 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