Beliefs about people with albinism in Uganda: A qualitative study using the Common-Sense Model

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.

Patterns of skin cancer and treatment outcomes for patients with albinism at Kisangani Clinic, Democratic Republic of Congo

“…16 Previous studies have revealed that discrimination and stigma are major challenges in the day-to-day life of PWA in various regions of Africa. [9][10][11] Societal discrimination of PWA is also highly prevalent in the DRC and was reported by 67.4% of patients. Surprisingly, 24.4% of patients experienced discrimination from their own close family and friends, even when they were not the only PWA in their family.…”

“…Discrimination can have far-reaching effects, limiting the ability of PWA to properly engage in education, social relationships, and healthcare. [9][10][11] In comparison, PWA in South Africa have reported better health and increased self-esteem when governmental and nongovernmental institutions were able to provide reliable educational, social, and medical resources. 9,17,18 Campaigns are needed to increase albinism awareness Limitations of this study include the small sample size, limited follow-up period, and incomplete data including lack of histological diagnosis for many cases.…”

“…2,[5][6][7][8] In many parts of Africa, there is a significant lack of knowledge regarding albinism and the specific healthcare needs of PWA, which can lead to societal stigma, discrimination, and persecution from an early age. [9][10][11] Myths and superstitions attached to albinism including fear of contagion, fear of bad luck, and the belief that sexual intercourse with PWA cures HIV/AIDS can prevent PWA from being accepted as equal members of society. 11,12 Alarmingly, these myths have even led to the murder and maiming of PWA, most prominently around the Great Lakes region of central Africa.…”

“…[9][10][11] Myths and superstitions attached to albinism including fear of contagion, fear of bad luck, and the belief that sexual intercourse with PWA cures HIV/AIDS can prevent PWA from being accepted as equal members of society. 11,12 Alarmingly, these myths have even led to the murder and maiming of PWA, most prominently around the Great Lakes region of central Africa. 13 In the Democratic Republic of Congo (DRC), there is still no reliable data on the prevalence, clinical features, or clinical outcomes of PWA.…”

Influence of social stigma on subjective well‐being of persons with albinism in Ghana

“…Correspondingly, recent research in Cameroon demonstrated that PWA experienced violation of their human rights, stigma, and discrimination, primarily due to their skin colour (Dapi, Tambe, & Monebenimp, ). Bradbury‐Jones, Ogik, Betts, Taylor, and Lund () investigated beliefs, myths, traditions, and attitudes that surround people with albinism in Uganda. They found that most Ugandans feared PWA, viewed them with suspicion, and believed them to possess supernatural powers.…”