Abstract
Albinism includes a group of inherited conditions that result in reduced melanin production. It has been documented across the world, with a high frequency in sub-Saharan Africa. There is very little published research about the lives of people with albinism, but available evidence shows that myths abound regarding their condition. They are feared, viewed with suspicion and believed to have supernatural powers. In this study we explored the links between beliefs, myths, traditions and positive/negative attitudes that surround people with albinism in Uganda. The study was located philosophically within Ubuntu—an Afrocentric worldview—and theoretically within the Common-Sense Model of self-regulation of health and illness that originates from the work of Leventhal in 2003. This qualitative study took place in eight districts of Busoga sub-region, Uganda between 2015 and 2017. Data collection comprised eight group discussions and 17 individual interviews with a range of informants, capturing the viewpoints of 73 participants. Findings lend support to previous research, highlighting the life-time discrimination and disadvantage experienced by many people with albinism. It shows that there is still much to be done to address the pervasive and potentially harmful beliefs and misconceptions about people with albinism.
Highlights
Albinism includes a group of inherited conditions characterised by congenital hypopigmentation of the hair, skin and eyes in the case of the oculocutaneous (OCA) types
The study is located philosophically within the worldview of Ubuntu–described as an Afrocentric approach [19] and theoretically, we draw upon the Common-Sense Model (CSM) of selfregulation of health and illness that originates from the work of Leventhal [20]
We found that CSM lends itself well to focus on beliefs about an issue from those who experience it directly, and those who are affected indirectly such as family members, professionals etc
Summary
Albinism includes a group of inherited conditions characterised by congenital hypopigmentation of the hair, skin and eyes in the case of the oculocutaneous (OCA) types. The lack of protective melanin pigment makes those affected very sensitive to the damaging effects of sun, with risks to the skin ranging from sunburn and blisters, thickening and wrinkling of skin to life limiting skin cancer [1]. A retrospective study of 64 cases of skin cancer in-patients with albinism at a large hospital in Tanzania found that most (84%) were under the age of 40 years, with 8% as young as 11–20 years of age [2]. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript
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