Leprosy in Kiribati: the lived experience

Thompson, Lee; Ioteba, Nabura; Chambers, Stephen T.

doi:10.47276/lr.91.4.353

Cited by 3 publications

(13 citation statements)

References 52 publications

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“…The results of the search and the study inclusion process were reported in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram (as shown under Results). [ 42 ] Forty-nine studies were included for this review [ 12 , 14 , 16 , 18 , 19 , 34 , 43 – 84 ] and are listed in S3 Appendix .…”

Section: Methodsmentioning

confidence: 99%

“…All the studies used a qualitative approach or had a clearly reported qualitative component. There were nine studies based on the phenomenological approach [12,19,43,49,56,58,62,80,87], two were ethnographic studies [63,68], two used the grounded theory approach [55,78], and six were mixed methods [14,34,51,53,57,79], but only the India and Indonesia 1 [79] https://doi.org/10.1371/journal.pntd.0010761.t002…”

Section: Study Inclusionmentioning

confidence: 99%

“…The most frequently absent detail in the included studies was the information on the influence of the researcher on the research (question 7, S5 Appendix); only five studies reported this item. [34,45,58,62,73] Seventeen studies [12,19,43,44,47,59,63,65,[69][70][71][75][76][77]79,80,83] had no obvious statement locating the researcher culturally or theoretically.…”

Section: Quality Of Included Studiesmentioning

confidence: 99%

“…(P99, White, page 7) 3.3.3.2 Category 9: Psycho-affective impact of leprosy. There were 24 findings from 20 studies [19,45,47,49,50,52,56,[61][62][63]65,[67][68][69]73,75,[77][78][79][80] highlighting the psycho-affective impact of leprosy. It has been shown that the negative feelings and attitudes of people affected by leprosy can affect their mental wellbeing.…”

Section: '[ ] a Scabies-like Rash On My Whole Body And It Was Itchin...mentioning

confidence: 99%

“…It could trigger a disequilibrium in family roles leading to families and community also excluding them from social activities. [15][16][17][18][19] Govindasamy and colleagues [20] carried out a multicentre, cross-sectional study in four leprosy-endemic states in India. They reported that thirty percent of people with leprosy who completed their MDT from the government and tertiary care hospitals in their states developed mental health issues.…”

Section: Introductionmentioning

confidence: 99%

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Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

et al. 2022

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Objective The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. Introduction Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. Inclusion criteria This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. Methods The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. Results The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient’s perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. Conclusions The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. Systematic review registration number PROSPERO Registration number: CRD42021243223

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Section: Methodsmentioning

confidence: 99%

Section: Study Inclusionmentioning

confidence: 99%

Section: Quality Of Included Studiesmentioning

confidence: 99%

Section: '[ ] a Scabies-like Rash On My Whole Body And It Was Itchin...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

et al. 2022

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The Centenary of the Leprosy Relief Association (Lepra)—a moment for celebration and reflection

Allen,

Lockwood,

Hay

2024

Transactions of the Royal Society of Tropical Medicine and Hygiene

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The year 2024 is the Centenary of the foundation of the Leprosy Relief Association (Lepra), formerly the British Empire Leprosy Relief Association (BELRA). The name of the organization changed to the LEProsy Relief Association (LEPRA) in 1976 but has been known as Lepra since 2008. Over the years it has worked closely with members and office holders of the Royal Society of Tropical Medicine and Hygiene. Its work has encompassed activities from the earliest initiatives to ensure appropriate living conditions for those with the disease to the development of leprosy chemotherapy. However, this has now evolved into a strong partnership between the UK- and India-based Lepra hubs, which are carrying out research and public health initiatives ranging from elimination of prejudice against those with leprosy to adopting the recently launched WHO programme for skin NTDs to facilitate integrated control and management regimens. The fight against leprosy has always been a partnership between a wide variety of disease-specific NGOs, health-care workers and international health agencies. The story of Lepra illustrates the central role of these partnerships and national as well as international collaboration.

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Single-Dose Rifampicin Leprosy Chemoprophylaxis for Household Contacts in Kiribati: An Audit of a Combined Retrospective and Prospective Approach

Campbell,

Bauro,

Rimon

et al. 2024

TropicalMed

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Kiribati is a Pacific Island nation with a widely dispersed population and one of the highest rates of leprosy worldwide. Single-dose rifampicin post-exposure prophylaxis (SDR-PEP) of leprosy contacts has reduced new case detection rates in controlled trials. In 2018, an SDR-PEP programme was introduced in Kiribati that included screening and chemoprophylaxis of household contacts of leprosy cases retrospectively (2010–2017) and prospectively (2018–2022). We conducted a retrospective audit to determine the comprehensiveness, timeliness and feasibility of the SDR-PEP programme. Overall, 13,641 household contacts were identified (9791 in the retrospective and 3850 in the prospective cohort). In the retrospective cohort, 1044 (11%) contacts were absent, 403 (4%) were ineligible for SDR, and 42 new cases were detected (0.4%) Overall, SDR coverage was 84.7%. In the prospective cohort, 164 (4%) contacts were absent, 251 (7%) were ineligible for SDR, and 23 new cases were diagnosed (0.6%). Overall, SDR coverage was 88.1%. Across both cohorts, there were 23 SDR refusals. The median time to SDR administration was 220 days (IQR 162–468) and 120 days (IQR 36–283) for the retrospective and prospective cohorts, respectively. SDR was readily accepted in both cohorts. The new case detection rate (0.5%) is consistent with that in other studies. Overall SDR coverage in both the retrospective and prospective phases met programmatic expectations.

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Leprosy in Kiribati: the lived experience

Cited by 3 publications

References 52 publications

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

The Centenary of the Leprosy Relief Association (Lepra)—a moment for celebration and reflection

Single-Dose Rifampicin Leprosy Chemoprophylaxis for Household Contacts in Kiribati: An Audit of a Combined Retrospective and Prospective Approach

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