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A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy

BACKGROUND: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. METHODS: In a cross-sectional, mixed methods st...

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Autores principales: Kaddumukasa, Mark, Nalubwama, Haddy, Blixen, Carol, Sewankambo, Nelson, Sajatovic, Martha, Katabira, Elly
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Makerere Medical School 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9382483/
https://www.ncbi.nlm.nih.gov/pubmed/36032474
http://dx.doi.org/10.4314/ahs.v22i1.32
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author Kaddumukasa, Mark
Nalubwama, Haddy
Blixen, Carol
Sewankambo, Nelson
Sajatovic, Martha
Katabira, Elly
author_facet Kaddumukasa, Mark
Nalubwama, Haddy
Blixen, Carol
Sewankambo, Nelson
Sajatovic, Martha
Katabira, Elly
author_sort Kaddumukasa, Mark
collection PubMed
description BACKGROUND: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. METHODS: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed. RESULTS: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6–18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE. CONCLUSION: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.
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spelling pubmed-93824832022-08-25 A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy Kaddumukasa, Mark Nalubwama, Haddy Blixen, Carol Sewankambo, Nelson Sajatovic, Martha Katabira, Elly Afr Health Sci Articles BACKGROUND: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. METHODS: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed. RESULTS: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6–18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE. CONCLUSION: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings. Makerere Medical School 2022-03 /pmc/articles/PMC9382483/ /pubmed/36032474 http://dx.doi.org/10.4314/ahs.v22i1.32 Text en © 2022 Kaddumukasa M et al. https://creativecommons.org/licenses/by/4.0/Licensee African Health Sciences. This is an Open Access article distributed under the terms of the Creative commons Attribution License (https://creativecommons.org/licenses/BY/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Articles
Kaddumukasa, Mark
Nalubwama, Haddy
Blixen, Carol
Sewankambo, Nelson
Sajatovic, Martha
Katabira, Elly
A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title_full A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title_fullStr A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title_full_unstemmed A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title_short A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy
title_sort mixed-methods, cross-sectional study of perceived stigma among ugandans with epilepsy
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9382483/
https://www.ncbi.nlm.nih.gov/pubmed/36032474
http://dx.doi.org/10.4314/ahs.v22i1.32
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