Factors Affecting Quality of Life for People Living with Albinism in Botswana

Abstract

People with albinism (PWA) in Africa suffer many challenges, including higher risk of skin cancers and deeply embedded stigma. We conducted interviews with PWA to determine factors influencing their quality of life (QOL) in Botswana. Physical concerns expressed included skin/eye health issues and limited access to health care. Psychosocial concerns included stigma/discrimination and myths/superstitions. Environmental concerns included barriers to personal development of education and employment, safety concerns, financial insecurity, and disability rights issues. Pervasive difficulty in obtaining equal rights to physical, psychosocial, and environmental health affected QOL. Education around albinism and disability rights are needed to improve QOL for PWA.

Keywords: Albinism; Botswana; Disability rights; Discrimination; Health care access; Oculocutaneous albinism; Quality of life; Stigma.