Sociodemographic features of a cohort of people living with albinism in BotswanaCapsule Summary

Abstract

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.

Keywords

• albinism
• dermatology
• discrimination
• oculocutaneous albinism
• persons or people living with albinism (PWA)
• skin cancer