Reactions to and explanations for the birth of a baby with albinism: a qualitative study in Busoga, Uganda

Abstract

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.

Oculocutaneous albinism in southern Africa: Historical background, genetic, clinical and psychosocial issues

“…This encounter should cover inheritance and recurrence risks; prognosis; physical, psychosocial and cultural aspects; and how best to manage health and education challenges (Kromberg & Jenkins 1984 ). As Taylor et al ( 2021 :1) state, ‘a biomedical explanation helps to establish a baby with albinism as a real person with a genetic difference’, fostering greater acceptance.…”

Factors associated with the prevalence of depression among people with oculocutaneous albinism in Jinja,Uganda.A cross sectional study

“…Albinism is among the earliest recognized genetic diseases (Jambrun,1991).People with oculocutaneous albinism(PWA) faced physical and psychological challenges mainly as a result of myths from different cultures and beliefs 1 .In Africa PWA have been victims of all the evils of the world, including killing,physical pain, mutilation, psychological distress, and social exclusion, just because of having albinism 2,3 .Among the mental illnesses that people with chronic dermatological disorders including PWA encounter, depression has been the most prevalent in studies carried out in African and Asian countries 4,5,6 .Depression is expected to be the major contributor to the disease burden and the second leading cause of world disability in both developed and developing countries by 2030 7 .In almost all communities in the world, there are common factors that are associated with depression, although with nuances for certain factors and certain regions 8 .Considering the discrimination due to misconceptions about albinism as well as the vulnerability to dermatological diseases, makes it important to study the prevalence of depression among PWA 9,10 Socio-demographics are group-related characteristics de ned by sociological and demographic characteristics 11 .Depression was strongly associated with being younger and experiencing severe pain in both sexes in a cross-sectional study conducted in France 12 .The prevalence of major depression in women with albinism is twice that of men 13 .This is independent of the tool used to assess depression, the methodology, and the site area of research 14 .In relation to this, women have been reported to be at an increased risk of developing major depression 15 .Divorced and separated people have a higher prevalence of major depression than married people 8 .Major depression generally goes down with age in low and middle-income conversely in high-income countries 8 .This has been con rmed in the research carried out among school going adolescents in central Uganda 16 ).Older people who had trouble with basic daily tasks and instrumental daily activities were 2.53 times more likely to have serious depression than those who had no problem 17 .Study investigated the association of social and economic status support with major depression among community-dwellers in India. Other factors within the scope of this study include discrimination, drug and substance abuse, severe dermatological conditions, and chronic general medical and psychiatric conditions 18 .All these factors have been associated with depression both among the general population and among PWA.…”