This article aims to ascertain the purposes for which the author needed information when her children with albinism were born, as well as explore the mechanisms she used to find information and the challenges she experienced when searching for information. An autoethnography method is used to share her lived experience of albinism, and the data has been collected through the author’s personal memory by recalling events that happened when she gave birth to her daughter in 2013 and her son in 2016. Information played a crucial role in helping the author to understand albinism better and to deal with her predicament. As a librarian and the mother of children with albinism, the author explored different mechanisms to find information. The Internet was the main source of information, as well as organisations such as Support in Namibia of Albinism Sufferers Requiring Assistance and the Namibia Albino Association Trust, which deal with the plight of people with albinism in the country.

This paper focuses on the social information needs of people with albinism (PWA) in Khomas region, Namibia, and the sources of information used PWA to meet their information needs. The study applies Moore's model of social information needs and Wilson's model of information behaviour to investigate and understand the information needs and sources used by PWA to find information. The study was carried out using a qualitative case design within interpretivism paradigm and semi-structured face-to-face interviews were used to collect data from participants. Sixteen participants took part in the study, eight were males, and eight were female participants. Among these participants, two were children with albinism. The following information was identified as being crucial to PWA namely: skin- and eye-related information, information on what is albinism and its causes, disability grants, educational information, and emotional and psychological support. Additionally, the study established that PWA use formal, informal, and human sources of information to find information.

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.