Parental perspectives on the social justice needs of children with albinism

Abstract

This study forms part of a broader research project at the Centre for Visual Impairment Studies (CVIS) at the University of Pretoria. The study focused on strengthening social justice for children with albinism with the objective of facilitating social change and equal opportunities for children with albinism as an outcome. The aim of this study of limited scope was to explore and describe parental perspectives on the social justice needs of children with albinism. For this research study, I adopted an interpretivist paradigm and a qualitative research approach. As a guiding theoretical framework, I utilised the social model of disability. I implemented an intrinsic case study design, including Participatory Reflection and Action (PRA) activities, as well as a focus group, audio-visual recordings and a reflexive journal as methods of data generation. I purposively selected four participants, who are parents of children with albinism. Following reflexive thematic analysis, three main themes and sub-themes emerged in relation to challenges and support requirements identified by parents of children with albinism. These are: challenges and support requirements identified by parents of children with albinism; resources required by parents to support children with albinism and parents' experiences regarding children with albinism attending mainstream schools. Based on the findings of this study of limited scope, I can conclude that parents of children with albinism are the main sources of support for their children and that they require assistance in addressing the social justice needs of children with albinism. To this end, the parent participants highlighted specific areas in which they require support for their children with albinism and various role-players who can assist. These include the government, teachers, social workers and healthcare workers, who can provide guidance and advocate for the social justice needs of children with albinism in collaboration with parents of children with albinism. This can be achieved by increasing knowledge and awareness about albinism in attempts to reduce stigmatisations and discrimination against children with albinism. I recommend that future research focus on the role of mothers of children with albinism as primary advocates for the rights of children with albinism; and the role of communities and social networks in strengthening the social justice support for children with albinism.