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Leprosy in Kiribati: the lived experience
Abstract
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.
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.
More information
Type
Journal Article