Marginalisation and Precarious Circumstances of People with Albinism (PWA): Information Needs and Services

Abstract

The study that directed this article investigated the information needs of parents of children with albinism (CWA) in the Khomas region, and determined information services that are appropriate for people with albinism (PWA) in the Khomas region of Namibia, in order to inform the possible design of their information services. Considering PWA as a marginalised user group living under precarious circumstances in Africa, and in the interest of an inclusive information service, a study on information needs was conducted on PWA in the Khomas Region, Namibia. It was conducted within the interpretivism paradigm, following a qualitative research approach, and interviews were conducted with six parents of CWA. In addition, two representatives from organisations that deal with the plight of PWA in Namibia were interviewed as organisational participants (OP). The following information needs were identified in the study: eye-and-skin-related information needs; information on what albinism is; the causes of albinism; information on how to register for the disability grant; and education-related information. The study also revealed that the information needs of parents of CWA differ at each level of the child’s growth. For example, parents stressed needing additional information because as children grow up new needs emerge. OP indicated that they use the following platforms to disseminate information to PWA: radio stations in local languages, community meetings, their websites, and the distribution of flyers in English.