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The experience of people with oculocutaneous albinism

Keywords: birth defects , congenital disorders , inherited disorders , oculocutaneous albinism , qualitative research , phenomenology , South Africa

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Abstract:

This article reports the experiences of people with oculocutaneous albinism in South Africa. Oculocutaneous albinism is an inherited disorder characterised by the defective production of melanin, with little or no pigmentation in the skin, hair and eyes. This condition is found globally, with a high prevalence in sub-Saharan Africa and in clusters in South America. People with this condition are often stigmatised and discriminated against owing to myths and superstitions held by the public about the condition. To date no studies have explored the psychosocial aspects of oculocutaneous albinism. A qualitative study was conducted in Johannesburg, South Africa during 2007 where a purposive sample of 15 members of the black population with oculocutaneous albinism participated in in-depth individualphenomenological interviews. One central question was posed to facilitate the interviews: Could you please share your experience as a person with albinism? Data from the interviews were analysed using Collaizi’s qualitative data analysis method and three main themesemerged: (1) perceptions of the internal environment, for example the self; (2) experiences in the external environment, for example family and community; and (3) the need for selfdevelopment and growth based on their experiences. Recommendations are made to enhance the self-concept of and promote a sense of belonging, self-development and growth in people with oculocutaneous albinism.

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