School of Nursing, University of Birmingham, Birmingham, United Kingdom.
Head Office, Source of the Nile Union for Persons with Albinism (SNUPA), Jinja, Uganda.
PLoS One. 2018 Oct 12;13(10):e0205774. doi: 10.1371/journal.pone.0205774. eCollection 2018.
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.
白化病包括一组遗传性疾病,导致黑色素生成减少。它在世界各地都有记录,在撒哈拉以南非洲地区的频率很高。关于白化病患者的生活,几乎没有发表的研究,但现有证据表明,关于他们的病情存在着大量的神话。他们被恐惧,被怀疑,被认为拥有超自然的力量。在这项研究中,我们探讨了乌干达白化病患者周围的信仰、神话、传统和积极/消极态度之间的联系。该研究在哲学上位于 Ubuntu 中——一种非洲中心的世界观,在理论上位于自我调节健康和疾病的常识模型中,该模型源自 Leventhal 于 2003 年的工作。这项定性研究在乌干达布索加地区的八个区进行,时间为 2015 年至 2017 年。数据收集包括与一系列信息提供者进行的八次小组讨论和 17 次个人访谈,共收集了 73 名参与者的观点。研究结果支持了之前的研究,强调了许多白化病患者一生中所经历的歧视和劣势。它表明,仍然需要做很多工作来解决人们对白化病患者的普遍存在的、潜在有害的信仰和误解。