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 pat...

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Veröffentlicht in:PloS one 2020-12, Vol.15 (12), p.e0242494-e0242494
Hauptverfasser: Boukthir, Aicha, Bettaieb, Jihene, Erber, Astrid C, Bouguerra, Hind, Mallekh, Rym, Naouar, Ikbel, Gharbi, Adel, Alghamdi, Manal, Plugge, Emma, Olliaro, Piero, Ben Salah, Afif
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creator Boukthir, Aicha
Bettaieb, Jihene
Erber, Astrid C
Bouguerra, Hind
Mallekh, Rym
Naouar, Ikbel
Gharbi, Adel
Alghamdi, Manal
Plugge, Emma
Olliaro, Piero
Ben Salah, Afif
description 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.
doi_str_mv 10.1371/journal.pone.0242494
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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. 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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. 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Academic</collection><collection>Hyper Article en Ligne (HAL)</collection><collection>Hyper Article en Ligne (HAL) (Open Access)</collection><collection>PubMed Central (Full Participant titles)</collection><collection>DOAJ Directory of Open Access Journals</collection><jtitle>PloS one</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Boukthir, Aicha</au><au>Bettaieb, Jihene</au><au>Erber, Astrid C</au><au>Bouguerra, Hind</au><au>Mallekh, Rym</au><au>Naouar, Ikbel</au><au>Gharbi, Adel</au><au>Alghamdi, Manal</au><au>Plugge, Emma</au><au>Olliaro, Piero</au><au>Ben Salah, Afif</au><au>Gopichandran, Vijayaprasad</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2020-12-01</date><risdate>2020</risdate><volume>15</volume><issue>12</issue><spage>e0242494</spage><epage>e0242494</epage><pages>e0242494-e0242494</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>33259489</pmid><doi>10.1371/journal.pone.0242494</doi><tpages>e0242494</tpages><orcidid>https://orcid.org/0000-0003-0056-452X</orcidid><orcidid>https://orcid.org/0000-0002-6645-5089</orcidid><orcidid>https://orcid.org/0000-0001-5252-9676</orcidid><orcidid>https://orcid.org/0000-0003-3903-2141</orcidid><oa>free_for_read</oa></addata></record>
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subjects Accessibility
Adult
Aged
Beliefs, opinions and attitudes
Biology and Life Sciences
Care and treatment
Case management
Cicatrix
Cicatrix - epidemiology
Cicatrix - parasitology
Cicatrix - pathology
Cicatrix - therapy
Collaboration
Cutaneous leishmaniasis
Data analysis
Deformities
Epidemiology
Female
Health services
Humans
Infections
Interviews
Laboratories
Leishmania major
Leishmania major - pathogenicity
Leishmaniasis, Cutaneous
Leishmaniasis, Cutaneous - epidemiology
Leishmaniasis, Cutaneous - parasitology
Leishmaniasis, Cutaneous - pathology
Leishmaniasis, Cutaneous - therapy
Lesions
Life Sciences
Male
Management
Medical case management
Medical personnel
Medical research
Medicine
Medicine and Health Sciences
Mental health
Methods
Middle Aged
Outpatients
Parasitic diseases
Patients
People and Places
Psychological aspects
Public health
Qualitative research
Quality of Life
Research and Analysis Methods
Scars
Skin cancer
Skin diseases
Social aspects
Social Sciences
Tropical diseases
Tunisia
Tunisia - epidemiology
Vector-borne diseases
title Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia
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