Living with albinism in an African community : Exploring the challenges of persons with albinism in Lilongwe District, Malawi
- Kaliati, Thandiwe Tambala, Adomako, Emmanuel Brenyah, Manso, Kwabena Frimpong
- Authors: Kaliati, Thandiwe Tambala , Adomako, Emmanuel Brenyah , Manso, Kwabena Frimpong
- Date: 2021
- Subjects: Albinism , Persons with albinism , Disability
- Language: English
- Type: Journal article
- Identifier: http://hdl.handle.net/10210/490244 , uj:44727 , Citation: Tambala-Kaliati, T., Adomako, E.B. and Frimpong-Manso, K., 2021. Living with albinism in an African community: exploring the challenges of persons with albinism in Lilongwe District, Malawi. Heliyon, 7(5), p.e07034. , DOI: https://doi.org/10.1016/j.heliyon.2021.e07034
- Description: Abstract: 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.
- Full Text:
- Authors: Kaliati, Thandiwe Tambala , Adomako, Emmanuel Brenyah , Manso, Kwabena Frimpong
- Date: 2021
- Subjects: Albinism , Persons with albinism , Disability
- Language: English
- Type: Journal article
- Identifier: http://hdl.handle.net/10210/490244 , uj:44727 , Citation: Tambala-Kaliati, T., Adomako, E.B. and Frimpong-Manso, K., 2021. Living with albinism in an African community: exploring the challenges of persons with albinism in Lilongwe District, Malawi. Heliyon, 7(5), p.e07034. , DOI: https://doi.org/10.1016/j.heliyon.2021.e07034
- Description: Abstract: 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.
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Misconceptions associated with children living with albinism : evidence from Gutu District, Zimbabwe
- Authors: Ringson, John
- Date: 2018
- Subjects: Stigma , Albinism , Protection
- Language: English
- Type: Article
- Identifier: http://hdl.handle.net/10210/291277 , uj:31628 , Citation: Ringson, J. 2018. Misconceptions associated with children living with albinism : evidence from Gutu District, Zimbabwe.
- Description: Abstract: Misconceptions surrounding the genetic condition of albinism persist in many parts of sub- Saharan Africa, including Zimbabwe. Studies on albinism have been carried out in different contexts around the globe, but little is known so far about the effects of the misconceptions of albinism in the rural communities of Zimbabwe. This study examines the effects of the misconceptions of albinism in the Gutu District of Zimbabwe. Twenty-five participants were interviewed, namely care-givers and children living with albinism in Gutu District. In-depth interviews were used to gather data concerning their experiences of the misconceptions associated with albinism, the ways these misconceptions have affected them and the ways in which they attempt to mitigate these effects. Results of the study show that, although there are initiatives and programmes advocated by various stakeholders for children living with albinism, the misconceptions are still escalating. Furthermore, the study reveals stigma and discrimination as the major effects of the misconceptions in the lives of children living with albinism. In conclusion, the study recommends the establishment of a community-based protection model for people living with albinism, which integrates all stakeholders involved in mitigating the challenges that emerge from the misconceptions of albinism in Zimbabwe.
- Full Text:
Misconceptions associated with children living with albinism : evidence from Gutu District, Zimbabwe
- Authors: Ringson, John
- Date: 2018
- Subjects: Stigma , Albinism , Protection
- Language: English
- Type: Article
- Identifier: http://hdl.handle.net/10210/291277 , uj:31628 , Citation: Ringson, J. 2018. Misconceptions associated with children living with albinism : evidence from Gutu District, Zimbabwe.
- Description: Abstract: Misconceptions surrounding the genetic condition of albinism persist in many parts of sub- Saharan Africa, including Zimbabwe. Studies on albinism have been carried out in different contexts around the globe, but little is known so far about the effects of the misconceptions of albinism in the rural communities of Zimbabwe. This study examines the effects of the misconceptions of albinism in the Gutu District of Zimbabwe. Twenty-five participants were interviewed, namely care-givers and children living with albinism in Gutu District. In-depth interviews were used to gather data concerning their experiences of the misconceptions associated with albinism, the ways these misconceptions have affected them and the ways in which they attempt to mitigate these effects. Results of the study show that, although there are initiatives and programmes advocated by various stakeholders for children living with albinism, the misconceptions are still escalating. Furthermore, the study reveals stigma and discrimination as the major effects of the misconceptions in the lives of children living with albinism. In conclusion, the study recommends the establishment of a community-based protection model for people living with albinism, which integrates all stakeholders involved in mitigating the challenges that emerge from the misconceptions of albinism in Zimbabwe.
- Full Text:
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