Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary
Background: Oculocutaneous albinism is disproportionately prevalent in Africa; however, the medical and psychosocial characteristics of people living with albinism (PWA) in Botswana have not been studied. Objective: To characterize the demographics, health-related factors, sun-protective behaviors,...
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doaj-97032a434e54472287f9e46d22807e062021-03-22T08:44:25ZengElsevierJAAD International2666-32872021-03-012153163Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule SummaryBrian Chu, BS0Abena Maranga, BA1Karen I. Mosojane, MBBS2Lynne Allen-Taylor, PhD3Malebogo Ralethaka, GN4Jinyo C. Ngubula, GN, OPN5Jemal Z. Shifa, MD6Bwanali H. Jereni, MBBS, MMed7Oathokwa Nkomazana, MBChB, FCOphth, MSC, PhD8Victoria L. Williams, MD9Perelman School of Medicine, University of Pennsylvania, Philadelphia, PennsylvaniaPerelman School of Medicine, University of Pennsylvania, Philadelphia, PennsylvaniaMinistry of Health and Wellness of Botswana, Gaborone, BotswanaPerelman School of Medicine, University of Pennsylvania, Philadelphia, PennsylvaniaMinistry of Health and Wellness of Botswana, Gaborone, BotswanaMinistry of Health and Wellness of Botswana, Gaborone, BotswanaUniversity of Botswana, Gaborone, BotswanaMinistry of Health and Wellness of Botswana, Gaborone, Botswana; University of Botswana, Gaborone, BotswanaUniversity of Botswana, Gaborone, BotswanaDepartment of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; Ministry of Health and Wellness of Botswana, Gaborone, Botswana; University of Botswana, Gaborone, Botswana; Correspondence to: Victoria L Williams, MD, 3737 Market Street, Philadelphia, PA 19104.Background: Oculocutaneous albinism is disproportionately prevalent in Africa; however, the medical and psychosocial characteristics of people living with albinism (PWA) in Botswana have not been studied. Objective: To characterize the demographics, health-related factors, sun-protective behaviors, and psychosocial challenges of PWA in Botswana. Methods: Overall, 50 PWA and 99 patients without albinism (non-PWA) were recruited and surveyed. Results: Higher proportions of PWA lived in rural villages compared with non-PWA (odds ratio [OR], 2.59; 95% confidence interval [CI], 1.26-5.34). PWA reported limited access to health care more frequently compared with non-PWA (OR, 2.72; 95% CI, 1.11-6.62). High proportions of PWA adopted sun-protective measures, including sunscreen, clothing, and sunlight avoidance. Despite high rates of feeling accepted by family and peers, PWA had increased odds of feeling unaccepted by their community (OR, 15.16; 95% CI, 5.25-31.81), stigmatized by society (OR, 9.37; 95% CI, 3.43-35.62), and affected by stigma in social interactions (OR, 2.21; 95% CI, 1.08-4.54) compared with non-PWA. Three-quarters of PWA had witnessed mistreatment of PWA. Limitations: Study limitations include the small sample size, convenience sampling, and a non-validated survey instrument. Conclusion: PWA faced increased medical and psychosocial challenges compared with non-PWA in Botswana. Our findings can begin to inform public health strategies aimed at promoting improved health care, education, and social inclusion for this population in Botswana and other regions in Africa.http://www.sciencedirect.com/science/article/pii/S266632872030078Xalbinismdermatologydiscriminationoculocutaneous albinismpersons or people living with albinism (PWA)skin cancer |
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DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Brian Chu, BS Abena Maranga, BA Karen I. Mosojane, MBBS Lynne Allen-Taylor, PhD Malebogo Ralethaka, GN Jinyo C. Ngubula, GN, OPN Jemal Z. Shifa, MD Bwanali H. Jereni, MBBS, MMed Oathokwa Nkomazana, MBChB, FCOphth, MSC, PhD Victoria L. Williams, MD |
spellingShingle |
Brian Chu, BS Abena Maranga, BA Karen I. Mosojane, MBBS Lynne Allen-Taylor, PhD Malebogo Ralethaka, GN Jinyo C. Ngubula, GN, OPN Jemal Z. Shifa, MD Bwanali H. Jereni, MBBS, MMed Oathokwa Nkomazana, MBChB, FCOphth, MSC, PhD Victoria L. Williams, MD Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary JAAD International albinism dermatology discrimination oculocutaneous albinism persons or people living with albinism (PWA) skin cancer |
author_facet |
Brian Chu, BS Abena Maranga, BA Karen I. Mosojane, MBBS Lynne Allen-Taylor, PhD Malebogo Ralethaka, GN Jinyo C. Ngubula, GN, OPN Jemal Z. Shifa, MD Bwanali H. Jereni, MBBS, MMed Oathokwa Nkomazana, MBChB, FCOphth, MSC, PhD Victoria L. Williams, MD |
author_sort |
Brian Chu, BS |
title |
Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary |
title_short |
Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary |
title_full |
Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary |
title_fullStr |
Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary |
title_full_unstemmed |
Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary |
title_sort |
sociodemographic features of a cohort of people living with albinism in botswanacapsule summary |
publisher |
Elsevier |
series |
JAAD International |
issn |
2666-3287 |
publishDate |
2021-03-01 |
description |
Background: Oculocutaneous albinism is disproportionately prevalent in Africa; however, the medical and psychosocial characteristics of people living with albinism (PWA) in Botswana have not been studied. Objective: To characterize the demographics, health-related factors, sun-protective behaviors, and psychosocial challenges of PWA in Botswana. Methods: Overall, 50 PWA and 99 patients without albinism (non-PWA) were recruited and surveyed. Results: Higher proportions of PWA lived in rural villages compared with non-PWA (odds ratio [OR], 2.59; 95% confidence interval [CI], 1.26-5.34). PWA reported limited access to health care more frequently compared with non-PWA (OR, 2.72; 95% CI, 1.11-6.62). High proportions of PWA adopted sun-protective measures, including sunscreen, clothing, and sunlight avoidance. Despite high rates of feeling accepted by family and peers, PWA had increased odds of feeling unaccepted by their community (OR, 15.16; 95% CI, 5.25-31.81), stigmatized by society (OR, 9.37; 95% CI, 3.43-35.62), and affected by stigma in social interactions (OR, 2.21; 95% CI, 1.08-4.54) compared with non-PWA. Three-quarters of PWA had witnessed mistreatment of PWA. Limitations: Study limitations include the small sample size, convenience sampling, and a non-validated survey instrument. Conclusion: PWA faced increased medical and psychosocial challenges compared with non-PWA in Botswana. Our findings can begin to inform public health strategies aimed at promoting improved health care, education, and social inclusion for this population in Botswana and other regions in Africa. |
topic |
albinism dermatology discrimination oculocutaneous albinism persons or people living with albinism (PWA) skin cancer |
url |
http://www.sciencedirect.com/science/article/pii/S266632872030078X |
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