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Dermatol Clin ; 39(1): 129-145, 2021 Jan.
Article in English | MEDLINE | ID: mdl-33228856

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.


Subject(s)
Albinism, Oculocutaneous/physiopathology , Albinism, Oculocutaneous/psychology , Disabled Persons , Quality of Life , Skin Neoplasms/prevention & control , Sunburn/prevention & control , Sunscreening Agents/therapeutic use , Vision Disorders/physiopathology , Adult , Aged , Botswana , Education , Employment , Female , Health Services Accessibility , Humans , Male , Middle Aged , Needs Assessment , Qualitative Research , Social Discrimination , Social Stigma , Young Adult
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