Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: an exploratory qualitative study in Tunisia
Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: an exploratory qualitative study in Tunisia
Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients' wellbeing. We explored patients' perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with ten confirmed CL patients at two L. major endemic sites in Southern Tunisia (Sidi Bouzid and Gafsa). Participants were selected using a sampling approach along a spectrum covering e.g. age, sex, and clinical presentation. Patients' experiences, opinions and preferences were explored, and their detailed accounts gave an insight on the impact of CL on their everyday lives. The impact of CL was found to be considerable. Most patients were not satisfied with treatment performance and case management. They expected a shorter healing time and better accessibility of the health system. Tolerance of the burden of disease was variable and ranged from acceptance of hidden scars to suicidal thoughts resulting from the fear to become handicapped, and the stress caused by close relatives. Some believed CL to be a form of skin cancer. Unexpectedly, this finding shows the big gap between the perspectives of patients and assumptions of health professionals regarding this disease. This study provided valuable information for better case management emphasizing the importance of improving communication with patients, and accessibility to treatment. It generated context-specific knowledge to policy makers in Tunisia to implement effective case management in a country where access to treatment remains a challenge due to socio-economic and geographic barriers despite a long tradition in CL control.
Adult, Aged, Cicatrix/epidemiology, Female, Humans, Leishmania major/pathogenicity, Leishmaniasis, Cutaneous/epidemiology, Male, Middle Aged, Quality of Life, Tunisia/epidemiology
Boukthir, Aicha
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Bettaieb, Jihene
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Erber, Astrid C.
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Bouguerra, Hind
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Mallekh, Rym
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Naouar, Ikbel
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Gharbi, Adel
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Alghamdi, Manal
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Plugge, Emma
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Olliaro, Piero
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Ben Salah, Afif
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Boukthir, Aicha
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Bettaieb, Jihene
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Erber, Astrid C.
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Bouguerra, Hind
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Mallekh, Rym
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Naouar, Ikbel
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Gharbi, Adel
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Alghamdi, Manal
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Plugge, Emma
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Olliaro, Piero
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Ben Salah, Afif
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Boukthir, Aicha, Bettaieb, Jihene, Erber, Astrid C., Bouguerra, Hind, Mallekh, Rym, Naouar, Ikbel, Gharbi, Adel, Alghamdi, Manal, Plugge, Emma, Olliaro, Piero and Ben Salah, Afif
(2020)
Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: an exploratory qualitative study in Tunisia.
PLoS ONE, 15 (12), [e0242494].
(doi:10.1371/journal.pone.0242494).
Abstract
Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients' wellbeing. We explored patients' perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with ten confirmed CL patients at two L. major endemic sites in Southern Tunisia (Sidi Bouzid and Gafsa). Participants were selected using a sampling approach along a spectrum covering e.g. age, sex, and clinical presentation. Patients' experiences, opinions and preferences were explored, and their detailed accounts gave an insight on the impact of CL on their everyday lives. The impact of CL was found to be considerable. Most patients were not satisfied with treatment performance and case management. They expected a shorter healing time and better accessibility of the health system. Tolerance of the burden of disease was variable and ranged from acceptance of hidden scars to suicidal thoughts resulting from the fear to become handicapped, and the stress caused by close relatives. Some believed CL to be a form of skin cancer. Unexpectedly, this finding shows the big gap between the perspectives of patients and assumptions of health professionals regarding this disease. This study provided valuable information for better case management emphasizing the importance of improving communication with patients, and accessibility to treatment. It generated context-specific knowledge to policy makers in Tunisia to implement effective case management in a country where access to treatment remains a challenge due to socio-economic and geographic barriers despite a long tradition in CL control.
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Accepted/In Press date: 3 November 2020
e-pub ahead of print date: 1 December 2020
Keywords:
Adult, Aged, Cicatrix/epidemiology, Female, Humans, Leishmania major/pathogenicity, Leishmaniasis, Cutaneous/epidemiology, Male, Middle Aged, Quality of Life, Tunisia/epidemiology
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Local EPrints ID: 485224
URI: http://eprints.soton.ac.uk/id/eprint/485224
ISSN: 1932-6203
PURE UUID: b2e7d046-09a1-41ea-922a-af7f1ec9c471
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Date deposited: 01 Dec 2023 17:42
Last modified: 18 Mar 2024 03:57
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Contributors
Author:
Aicha Boukthir
Author:
Jihene Bettaieb
Author:
Astrid C. Erber
Author:
Hind Bouguerra
Author:
Rym Mallekh
Author:
Ikbel Naouar
Author:
Adel Gharbi
Author:
Manal Alghamdi
Author:
Piero Olliaro
Author:
Afif Ben Salah
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