The experience of people with oculocutaneous albinism

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 individual phenomenological 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 themes emerged: (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. Opsomming Hierdie aanbieding is ‘n verslag oor bevindings van die ervaring van persone met okulokutaneuse albinisme in Suid-Afrika. Okulokutaneuse albinisme is ‘n oorerflike afwyking, gekenmerk deur ‘n gebrekkige melanien produksie. Daar is min of geen pigmentasie in die vel, hare en oë nie. Hierdie toestand word wêreldwyd aangetref met ‘n hoër voorkoms in sub-Sahara Afrika en groepe in Suid Amerika. Mense met hierdie toestand het dikwels ‘n stigma en daar word teen hulle gediskrimineer as gevolg van mites en bygelowe van die publiek oor die toestand. Tot datum het geen studies die psigososiale aspek van hierdie toestand ondersoek nie. ‘n Kwalitatiewe studie is in Johannesburg, Suid-Afrika uitgevoer in 2007. ‘n Doelgerigte steekproef van 15 swart mense met okulokutaneuse albinisme het deel geneem aan in diepte individuele fenomenologiese onderhoude. ‘n Sentrale vraag was gestel om die onderhoude te fasiliteer: Kan u asseblief u ervaring as ‘n persoon met albinisme deel?”’ Data van die onderhoude was geanaliseer deur van Collaizi’s se kwalitatiewe data analise metode gebruik te maak. Drie hooftemas het te voorskyn gekom, naamlik: (1) persepsies van die interne omgewing byvoorbeeld die self; (2) ervarings van die eksterne omgewing, byvoorbeeld die familie en die gemeenskap; en (3) die behoefte vir self ontwikkeling en groei gebaseer op hulle ervarings. Aanbevelings is gemaak deur die navorsers om self konsep uit te lig , en om ‘n gevoel van ‘behoort aan’, self ontwikkeling en groei in mense met okulokutaneuse albinisme te bevorder.

Keywords

• Birth defects, congenital disorders, inherited disorders, oculocutaneous albinism, qualitative research, phenomenology, South Africa