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.
ObjectivesBabies born with the genetic condition albinism lack pigment in their hair, skin and eyes due to compromised melanin production. This leads to poor vision and the risk of early death due to skin cancer. In Uganda, one of the least developed countries in the world, their lack of pigmentation makes them very different in appearance within their communities. Local explanations of albinism include links to witchcraft and the supernatural. We aimed to explore reactions to the birth of a baby with albinism in Uganda.DesignSecondary analysis of birth stories derived from qualitative interviews and focus group discussions in sharing circles.SettingInterviews took place in the Busoga subregion (kingdom) in the eastern part of Uganda.ParticipantsSeventy-three (73) participants took part in eight sharing circles (n=56) and 17 individual interviews. Participants included people with albinism, parents of people with albinism and a range of other interested parties, including local leaders and teachers.ResultsReactions were generally those of shock and rejection, although cases of acceptance were also recorded. The varied explanations given to account for this unexpected event included accounts involving witchcraft, ghosts, animal familiars and religion, as well as genetics. In a framework surmising that someone must possess a dark skin to be intrinsically valued in African societies a baby with albinism does not fulfil this requirement of ‘personhood’. The mother was often blamed for having produced some ‘thing’ that is not a proper person.ConclusionsWe argue that a biomedical explanation, although unlikely to displace other understandings, helps to establish a baby with albinism as a real person with a genetic difference, and hence fosters greater acceptance.
Background Depression is among the common psychiatric disorders with high prevalence in the general population.This prevalence is higher in vulnerable populations including people living with albinism. Despite the fact that several aspects linked with it have been found among people with oculocutaneous albinism in the Busoga region, limited information is available regarding prevalence of depression and its associated factors in the study area.The main objective of the present study was to determine the factors associated with the prevalence of depression among people with oculocutaneous albinism in Jinja. Methods A cross-sectional design was used to capture data from a study sample size of 384 adults living with oculocutaneous albinism who were involved in completion of the screening tests for depression Hopkins Symptom Checklist-25(HSCL-25).The summation of scores for depression were averaged and the probable depression determined for each participant using a cut-off of 1.75. Logistic regression analyses were used to examine associations between depression outcomes, socio-demographic and psychomedical factors. Results The analyses revealed that the prevalence of depression among people with oculocutaneous albinism in Jinjacity stands at 65.4%. Depression was significantly associated with age (AOR = 1.059, 95% CI = 1.020–1.100, P = 0.003), lack of family support (AOR = 0.505, 95% CI = 0.286–0.892, P = 0.019), history of diabetes mellitus (AOR = 12.030, 95% CI = 1.117–12.961, P = 0.040), marital status by being married(AOR = 0.505, 95% CI = 0.286–0.892, P = 0.019) and taking chronically medication (AOR = 6.583, 95% CI = 1.618–26.782, P = 0.008). Conclusions These findings show that the estimated prevalence of depression among people with oculocutaneous albinism in the study area is high and worrying. Age, marital status, lack of family support, history of diabetes mellitus, and taking chronically medication are important risk factors associated with the prevalence of depressive disorders. Strategies targeting early interventions are needed in order to reduce risk factors of the disease and improve the quality of life of people with oculocutaneous albinism in Jinja.
Background The mixed understanding of albinism over the years and across civilizations globally has generated behaviours, attitudes and practices that have influenced the lives of people living with oculocutaneous albinism (PWA). If in some regions, they have been venerated, in the majority of regions, especially in Africa, the attitudes, behaviours and practices have negatively influenced the lives of people living with oculocutaneous albinism. Despite the fact that several attitudes, beliefs and behaviours capable to influence the quality of life of people with oculocutaneous albinism in the Busoga sub-region have been described, no information is available regarding the health related quality of life in the study area. The main objective of the present study was to determine the health related quality of life of people with oculocutaneous albinism in Jinja, Uganda. Methods A hospital based cross-sectional design was used to capture data from a study sample size of 384 adults living with oculocutaneous albinism in Jinja who were involved in completion of the Dermatology life quality index (DLQI) adult version. The results were determined by adding the scores of each question of DLQI together, yielding a maximum of 30 and a minimum of 0. The greater the score, the more worsening of one's quality of life was Results The analyses revealed that oculocutaneous albinism was found to have a very large effect on patient's life accounting for 48.7% of the participants. Only 5.7% of the participants reported that oculocutaneous albinism had no effect on their quality of life. The mean DLQI score was 14.55. Conclusions These findings show that oculocutaneous albinism affects negatively the quality of life of people with albinism in Jinja. Strategies targeting to solve different problems related to albinism must be taken to improve the quality of life of this vulnerable population in the study area.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.