Reviews of Academic Articles

P. Lynch, P. Lund, B. Massah, ‘Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi’. IJED 39 (2014) 226-234. Available online: http://www.sciencedirect.com/science/

Oculocutaneous albinism is an inherited condition that affects the health and wellbeing of those affected by it in numerous ways. Particularly concentrated in the sub-Sahara, this form of albinism cannot be disguised: the pale pigmentation caused by lack of melanin pigment is strikingly different to the usual dark pigmentation of their peers. They are particularly vulnerable to sun damage and skin cancers; and less obviously involuntary nystagmus and other eye problems – the majority of children with albinism have less than 30% vision. Children with albinism are often stereotyped and stigmatised. Strategies that can be developed in schools and communities that cost very little but that address the health and emotional issues for children with albinism are crucial. Lynch et al have given us a useful and insightful article in this respect.

It is particularly useful because Lynch et al outline strategies for the classroom; target educators, parents, and members of the community; and importantly they include the voice and views of children with albinism. The authors address albinism from within a social model of disability framework, rather than the predominant medical model of albinism often seen in sub-Saharan countries (and indeed elsewhere). This allows Lynch et al to address successfully the social impact of the condition on educational inclusion. They effectively summarise the wider context of albinism in Malawi by detailing the cultural, political and policy aspects, underlining how government policies have yet to bring about effective change in the classroom. Whilst suggesting effective strategies for the classroom the article also emphasises a need for wider cultural change in Malawi with regards for children with albinism, for example: the mention of the number of girls attending specialist centres being especially low, fears for the safety of children with albinism and a general concern that education of children with albinism is not only difficult but pointless as people with albinism are believed to be unlikely to find employment. This article should be compulsory reading for teachers, health professionals and policymakers in sub-Saharan Africa.

Professor Julie Taylor
Director, Child Protection Research Centre
University of Edinburgh
Email: Julie.Taylor@ed.ac.uk

 

 

M. Pooe-Monyemore, T. Mavundia and A. Christianson, ‘The experience of people with oculocutaneous albinism’, Health SA Gesondheid 17.1 (2012). Available online: http://dx.doi.org/10.4102/hsag.v17i1.592

This paper focuses on the experiences of people with albinism in South Africa. It reports and discusses the results of a qualitative phenomenological study obtained through in-depth interviews with 15 people with oculocutaneous albinism from the black population of Johannesburg. A major theme was the importance of self-concept, and the recognition of the significant role of the family in enhancing self-esteem amongst people with albinism. Self-esteem was high amongst participants who were members of the Albinism Society of South Africa (ASSA). Within the wider environment, stigma and prejudice, due to skin colour and myths and superstitions, were experienced as major challenges, especially to senses of belonging. Participants expressed needs for self-development and growth. Government departments and non-government organisations have had roles in providing opportunities for health, education, employment and disability aids for them, while the private sector and media have potential but as yet unrealised roles.

The methodological approach of phenomenology was highly appropriate for the research question guiding this study with its focus on life experiences. The sample method and small sample selected were also appropriate, though participants were limited to people in contact with the ASSA, who may differ in their life experiences from those without such contact, and possible support. The description of the research design and process is detailed and provides relevant information that functions as a thorough audit of this qualitative study, supporting evidence of its authenticity and trustworthiness. However some seemed to be scattered through the article with comments about ethical considerations and trustworthiness located separately from other methodological sections, which made the writing seem disjointed at times. More focus on the participants’ experiences and words would have provided a more solid and nuanced picture of their lives and more depth to the analysis.

This small study which focuses on the life experiences of some South Africans with albinism supports other research on experiences of stigma. It is an important addition to the small but growing body of knowledge on psychosocial aspects of living with albinism in an area dominated by medical and epidemiological knowledge. Its contribution is to highlight the role of the social environment and of various services and community groups in how people experience albinism in the South African context. It also provides documented experiences from which to make recommendations about strategies to enhance and promote well-being and inclusion.

Those seeking to understand the lived experiences of people with congenital disorders and how this is affected by specific social contexts will find this article fascinating. Those concerned about how people’s lives are affected by disability, or specifically albinism, in Africa or similar countries, including service providers, will gain greater understanding and guidance on reading this scholarly paper.

Dr Jean Burke
Australian Catholic University
E mail: jeanburke76@yahoo.com.au