Chu Brian, Maranga Abena, Mosojane Karen I, Allen-Taylor Lynne, Ralethaka Malebogo, Ngubula Jinyo C, Shifa Jemal Z, Jereni Bwanali H, Nkomazana Oathokwa, Williams Victoria L
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
Ministry of Health and Wellness of Botswana, Gaborone, Botswana.
JAAD Int. 2021 Jan 28;2:153-163. doi: 10.1016/j.jdin.2020.12.002. eCollection 2021 Mar.
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.
To characterize the demographics, health-related factors, sun-protective behaviors, and psychosocial challenges of PWA in Botswana.
Overall, 50 PWA and 99 patients without albinism (non-PWA) were recruited and surveyed.
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.
Study limitations include the small sample size, convenience sampling, and a non-validated survey instrument.
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.
眼皮肤白化病在非洲的患病率极高;然而,博茨瓦纳白化病患者(PWA)的医学和心理社会特征尚未得到研究。
描述博茨瓦纳PWA的人口统计学特征、健康相关因素、防晒行为及心理社会挑战。
共招募并调查了50名PWA和99名非白化病患者(非PWA)。
与非PWA相比,居住在乡村的PWA比例更高(优势比[OR]为2.59;95%置信区间[CI]为1.26 - 5.34)。与非PWA相比,PWA报告称获得医疗服务的机会更有限(OR为2.72;95%CI为1.11 - 6.62)。很大比例的PWA采取了防晒措施,包括涂抹防晒霜、穿着衣物和避免阳光照射。尽管PWA感觉被家人和同龄人接纳的比例很高,但与非PWA相比,他们感觉不被社区接纳(OR为15.16;95%CI为5.25 - 31.81)、受到社会污名化(OR为9.37;95%CI为3.43 - 35.62)以及在社交互动中受到污名影响(OR为2.21;95%CI为1.08 - 4.54)的几率更高。四分之三的PWA目睹过对PWA的虐待行为。
研究局限性包括样本量小、方便抽样以及未经验证的调查工具。
与博茨瓦纳的非PWA相比,PWA面临更多的医学和心理社会挑战。我们的研究结果可为旨在促进博茨瓦纳及非洲其他地区该人群获得更好医疗保健、教育和社会包容的公共卫生策略提供参考。