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University of Cape Town THE INFORMATION NEEDS OF PEOPLE WITH ALBINISM IN KHOMAS REGION, NAMIBIA ANNA KAUKOWE NGULA NGLANN001 SUPERVISOR: Dr. Connie Bitso A dissertation submitted in fulfilment of the requirements for the degree of MASTER OF PHILOSOPHY (RESEARCH) AT THE LIBRARY AND INFORMATION STUDIES CENTRE UniversityFACULTY OF of HUMANITIES Cape Town UNIVERSITY OF CAPE TOWN FEBRUARY 2018 The copyright of this thesis vests in the author. No quotation from it or information derived from it is to be published without full acknowledgement of the source. The thesis is to be used for private study or non- commercial research purposes only. Published by the University of Cape Town (UCT) in terms of the non-exclusive license granted to UCT by the author. University of Cape Town DECLARATION i DEDICATION This study is dedicated first and foremost to the Almighty for safeguarding me during the entire process, and for lifting me up when I felt like giving up. To my husband Reverend Josef Ngula and my children Josanna, Alodia and Anselmo, a special dedication to Alodia and Anselmo who were both born with albinism. To all brave parents of children with albinism and the lovely people with albinism in Africa. ii ACKNOWLEDGEMENTS I would like to express my gratitude to all those who contributed to the success of this project in one way or another. I owe my gratitude to all the participants who made time to take part in the study. I would like to thank my colleagues and friends for support and words of encouragement- Mr Kahengua Kavevangua (my professor), Mr Chenjerai Mabhiza, Jacobina Mwiiyale (my twin sister), Anna Leonard and Astrida Samupwa (my little sister). I would like to thank Laimi Iiyambo (my fellow student) and Nekulu Uugwanga for always sharing valuable information. I would also like to thank Martha Amutenya and Ronald Kanguti for helping me with IT related issues. I would like to sincerely thank my supervisor, Dr Connie Bitso, for through her guidance, I have absorbed more than enough. Thank you for your words of encouragement that kept picking me up when I was falling, constructive criticism that made me a better student, and for taking care of me emotionally. I would like to thank the councillor leadership of Khomas region for allowing me to conduct research in Khomas region. Special thanks go to SINASRA and NAAT members for support throughout the whole process. Finally, I am indebted to my children, Josanna, Alodia and Anselmo who could not enjoy their mother’s deserved attention for two full years, especially Anselmo, who was a baby at the time. To my husband thank you for your understanding and support. iii ABSTRACT The dissertation is a report of an investigation of the information needs of people with albinism in Khomas region, Namibia. The investigation aims to ascertain the information needs of people with albinism (PWA), including the kind of information needs they have. It also seeks to establish the mechanisms used by PWA to seek information and to determine who initiates their information-seeking activities. Furthermore, the study identifies the challenges PWA in Khomas region face on a daily basis when seeking information and recommends information services that could be suitable for PWA in Khomas region. For its theoretical framework, the study applies Moore (2002) and Wilson’s (1996) model of information behaviour. It is situated within the interpretivism paradigm following a qualitative approach. The research design is that of a case study with aspects of auto- ethnography resulting from the researcher’s personal memory of her lived experiences of albinism as a mother of two children with albinism. Face-to-face interviews were conducted with sixteen people with albinism; six parents of children with albinism (CWA); and two key informants from associations dealing with PWA in Namibia. The findings reveal that PWA have information needs related to their condition, specifically skin and eye care, as well as other basic needs, such as shelter, employment opportunities, education prospects and the process of their acquisition of identity and travel documents. The study revealed that the internet (especially Google), the radio and television, healthcare professionals and Support in Namibia of Albinism Sufferers Requiring Assistance (SINASRA) and Namibia Albino Association Trust (NAAT) are some of the sources and mechanisms used by participants when searching for information. The organisational participants revealed that they provide a range of services to PWA, including information about skin care and protective clothing, as well as applications for disability grants. PWA who participated in the study indicated that they encounter problems when accessing information. These include the long distances between information seekers and providers, time constraints and the cost associated with accessing information. Language was identified as a major barrier to information access because most of the content is in English. Lack of awareness of information sources coupled with poor eyesight for PWA the reading of iv information in small fonts that is not provided in alternative formats a glaring challenge. The study concluded that information about albinism is critical not only for PWA, but also to an African society that often subjects PWA to grievous harm, simply because it still holds myths and stigma about albinism. Therefore, the study recommends that it is crucial to provide information to PWA, including their family members through platforms such as open days, sensitisation meetings, and the creation of WhatsApp groups. These interventions should also be directed at society at large in order to create a sense of belonging and get rid of isolation suffered by PWA. The study also recommends that an information booklet be developed by the ministry of health and social services. This booklet should contain information on different types of disabilities that can affect unborn children, in order to prepare the parents. Keywords: Information needs, People with albinism, Khomas Region, Namibia. v LIST OF ABREVIATIONS AND ACRONYMS AIDS Acquired Immune Deficiency Syndrome CWA Children with Albinism HIV Human Immunodeficiency Virus FNB First National Bank IAAD International Albinism Awareness Day NAAT Namibia Albino Association Trust NOAH National Organisation for Albinism and Hypopigmentation NDC National Disability Council NPC National Planning Commission OP Organisational Participants OVC Orphans and Vulnerable Children PWA People with Albinism PWD Persons with Disabilities PWID People with Intellectual Disabilities PWVI Persons with Visual Impairment RNIB Royal National Institute of the Blind SINASRA Support in Namibia of Albinism Sufferers Requiring Assistance SPF Sun Protection Factor TAAM Albino Association of Malawi TAS Tanzania Albinism Society TGPSH Tanzanian-German Programme to Support Health vi UNDP United Nations Development Population UV Ultra violet vii Contents DECLARATION ..................................................................................................................................... i DEDICATION ........................................................................................................................................ ii ACKNOWLEDGEMENTS ................................................................................................................... iii ABSTRACT ........................................................................................................................................... iv LIST OF ABREVIATIONS AND ACRONYMS ................................................................................. vi LIST OF TABLES ............................................................................................................................... xiii LIST OF FIGURES ............................................................................................................................. xiii CHAPTER 1 ........................................................................................................................................... 1 INTRODUCTION AND CONCEPTUAL FRAMEWORK .................................................................. 1 1.1 Introduction ....................................................................................................................................... 1 1.2 Background to the study ................................................................................................................... 3 1.2.1 Albinism in the African context ..................................................................................................... 3 1.2.2 Albinism from a Namibian perspective ......................................................................................... 9 1.2.3 Khomas region ............................................................................................................................. 11 1.3 Research problem ............................................................................................................................ 12 1.4 Objectives ....................................................................................................................................... 12 1.5 Research questions .......................................................................................................................... 13 1.6 Significance of the study ................................................................................................................. 13 1.7 Limitations and delimitations
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