Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries

Annisa Ika Putri; Kevin de Sabbata; Regitta I. Agusni; Medhi Denisa Alinda; Joydeepa Darlong; Barbara de Barros; Stephen L. Walker; Marjolein B.M. Zweekhorst; Ruth M.H. Peters

doi:10.1371/journal.pntd.0010476

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries

Annisa Ika Putri^*, Kevin de Sabbata, Regitta I. Agusni, Medhi Denisa Alinda, Joydeepa Darlong, Barbara de Barros, Stephen L. Walker, Marjolein B.M. Zweekhorst, Ruth M.H. Peters

^*Corresponding author for this work

Research output: Contribution to Journal › Article › Academic › peer-review

Abstract

Background Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. Methods/Principal findings This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4–6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. Conclusion Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

Original language	English
Article number	e0010476
Pages (from-to)	1-20
Number of pages	20
Journal	PLoS Neglected Tropical Diseases
Volume	16
Issue number	6
DOIs	https://doi.org/10.1371/journal.pntd.0010476
Publication status	Published - 13 Jun 2022

Bibliographical note

Funding Information:
This project was funded by Leprosy Research Initiative (LRI) under reference number 706.18.45/LRI. The project was entitled as "A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum" in which RMHP was the principal investigator with other co-authors as the teammembers. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.The authors would like to thank all participants for sharing their experiences. Gratitude is sent to our partners, Dr. Soetomo General Hospital and The Leprosy Mission Home and Hospital, Purulia, that facilitated the research process. We also appreciate support from Dr. M. Yulianto Listiawan and Prof. Dr. Cita R.S. Prakoeswa during our field work in Indonesia.

Publisher Copyright:
© 2022 Putri et al.

Funding

This project was funded by Leprosy Research Initiative (LRI) under reference number 706.18.45/LRI. The project was entitled as "A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum" in which RMHP was the principal investigator with other co-authors as the teammembers. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.The authors would like to thank all participants for sharing their experiences. Gratitude is sent to our partners, Dr. Soetomo General Hospital and The Leprosy Mission Home and Hospital, Purulia, that facilitated the research process. We also appreciate support from Dr. M. Yulianto Listiawan and Prof. Dr. Cita R.S. Prakoeswa during our field work in Indonesia.

Funders	Funder number
Leprosy Mission Home and Hospital
Leprosy Research Initiative	706.18.45/LRI
Leprosy Research Initiative

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1371/journal.pntd.0010476

Persistent URL (handle)

Persistent link

Cite this

Putri, A. I., de Sabbata, K., Agusni, R. I., Alinda, M. D., Darlong, J., de Barros, B., Walker, S. L., Zweekhorst, M. B. M., & Peters, R. M. H. (2022). Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries. PLoS Neglected Tropical Diseases, 16(6), 1-20. Article e0010476. https://doi.org/10.1371/journal.pntd.0010476

@article{d405271b3bdc49b4a234dc485b3c66f1,

title = "Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries",

abstract = "Background Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. Methods/Principal findings This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4–6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. Conclusion Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.",

author = "Putri, {Annisa Ika} and {de Sabbata}, Kevin and Agusni, {Regitta I.} and Alinda, {Medhi Denisa} and Joydeepa Darlong and {de Barros}, Barbara and Walker, {Stephen L.} and Zweekhorst, {Marjolein B.M.} and Peters, {Ruth M.H.}",

note = "Funding Information: This project was funded by Leprosy Research Initiative (LRI) under reference number 706.18.45/LRI. The project was entitled as {"}A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum{"} in which RMHP was the principal investigator with other co-authors as the teammembers. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.The authors would like to thank all participants for sharing their experiences. Gratitude is sent to our partners, Dr. Soetomo General Hospital and The Leprosy Mission Home and Hospital, Purulia, that facilitated the research process. We also appreciate support from Dr. M. Yulianto Listiawan and Prof. Dr. Cita R.S. Prakoeswa during our field work in Indonesia. Publisher Copyright: {\textcopyright} 2022 Putri et al.",

year = "2022",

month = jun,

day = "13",

doi = "10.1371/journal.pntd.0010476",

language = "English",

volume = "16",

pages = "1--20",

journal = "PLoS Neglected Tropical Diseases",

issn = "1935-2727",

publisher = "Public Library of Science",

number = "6",

}

TY - JOUR

T1 - Understanding leprosy reactions and the impact on the lives of people affected

T2 - An exploration in two leprosy endemic countries

AU - Putri, Annisa Ika

AU - de Sabbata, Kevin

AU - Agusni, Regitta I.

AU - Alinda, Medhi Denisa

AU - Darlong, Joydeepa

AU - de Barros, Barbara

AU - Walker, Stephen L.

AU - Zweekhorst, Marjolein B.M.

AU - Peters, Ruth M.H.

N1 - Funding Information: This project was funded by Leprosy Research Initiative (LRI) under reference number 706.18.45/LRI. The project was entitled as "A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum" in which RMHP was the principal investigator with other co-authors as the teammembers. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.The authors would like to thank all participants for sharing their experiences. Gratitude is sent to our partners, Dr. Soetomo General Hospital and The Leprosy Mission Home and Hospital, Purulia, that facilitated the research process. We also appreciate support from Dr. M. Yulianto Listiawan and Prof. Dr. Cita R.S. Prakoeswa during our field work in Indonesia. Publisher Copyright: © 2022 Putri et al.

PY - 2022/6/13

Y1 - 2022/6/13

N2 - Background Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. Methods/Principal findings This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4–6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. Conclusion Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

AB - Background Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. Methods/Principal findings This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4–6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. Conclusion Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

UR - http://www.scopus.com/inward/record.url?scp=85134044003&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85134044003&partnerID=8YFLogxK

U2 - 10.1371/journal.pntd.0010476

DO - 10.1371/journal.pntd.0010476

M3 - Article

C2 - 35696438

AN - SCOPUS:85134044003

SN - 1935-2727

VL - 16

SP - 1

EP - 20

JO - PLoS Neglected Tropical Diseases

JF - PLoS Neglected Tropical Diseases

IS - 6

M1 - e0010476

ER -

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries

Abstract

Bibliographical note

Funding

UN SDGs

Access to Document

Persistent URL (handle)

Other files and links

Fingerprint

A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum

Cite this

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries

Abstract

Bibliographical note

Funding

UN SDGs

Access to Document

Persistent URL (handle)

Other files and links

Fingerprint

Projects

A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum

Cite this