TY - JOUR
T1 - Living with albinism in an African community
T2 - exploring the challenges of persons with albinism in Lilongwe District, Malawi
AU - Tambala-Kaliati, Thandiwe
AU - Adomako, Emmanuel Brenyah
AU - Frimpong-Manso, Kwabena
N1 - Publisher Copyright:
© 2021 The Author(s)
PY - 2021/5
Y1 - 2021/5
N2 - Background: Albinism is a genetic condition caused by a deficit in the production of the pigment called melanin, which protects the skin against ultraviolet light and provides the skin with its color production. The condition may predispose persons with albinism (PWAs) to lifelong physical and health problems, such as visual impairment and ultra-violet induced skin damage. Due to this condition, we explored the challenges faced by persons living with albinism as they socialize in Lilongwe District, Malawi. Method: The study adopted an interpretative phenomenological approach and included 30 participants comprising 13 females and 14 males with albinism and three key informants from Association of People with Albinism in the Lilongwe district in Malawi. Data were collected through in-depth interviews and focus group discussions. Van Manen's (2014) six steps of phenomenological analysis was used to analyze all data. Results: People with albinism face a variety of problems, the most common of which are financial constraints, health complications due to a lack of adequate medical care, a lack of community support leading to stigma and discrimination, and superstitious beliefs. Conclusions: People with albinism suffer socially as a result of misconceptions, behaviours, social isolation, labelling, and beliefs that are negatively correlated with their disorder. PWAs face these problems as a result of public misunderstanding about albinism.
AB - Background: Albinism is a genetic condition caused by a deficit in the production of the pigment called melanin, which protects the skin against ultraviolet light and provides the skin with its color production. The condition may predispose persons with albinism (PWAs) to lifelong physical and health problems, such as visual impairment and ultra-violet induced skin damage. Due to this condition, we explored the challenges faced by persons living with albinism as they socialize in Lilongwe District, Malawi. Method: The study adopted an interpretative phenomenological approach and included 30 participants comprising 13 females and 14 males with albinism and three key informants from Association of People with Albinism in the Lilongwe district in Malawi. Data were collected through in-depth interviews and focus group discussions. Van Manen's (2014) six steps of phenomenological analysis was used to analyze all data. Results: People with albinism face a variety of problems, the most common of which are financial constraints, health complications due to a lack of adequate medical care, a lack of community support leading to stigma and discrimination, and superstitious beliefs. Conclusions: People with albinism suffer socially as a result of misconceptions, behaviours, social isolation, labelling, and beliefs that are negatively correlated with their disorder. PWAs face these problems as a result of public misunderstanding about albinism.
KW - Albinism
KW - Disability
KW - Impairment
KW - Melanin
KW - Persons with albinism
KW - Pigment
UR - http://www.scopus.com/inward/record.url?scp=85105574573&partnerID=8YFLogxK
U2 - 10.1016/j.heliyon.2021.e07034
DO - 10.1016/j.heliyon.2021.e07034
M3 - Article
AN - SCOPUS:85105574573
SN - 2405-8440
VL - 7
JO - Heliyon
JF - Heliyon
IS - 5
M1 - e07034
ER -