Information and HIV/AIDS: an ethnographic study of information behaviour

Abstract

This study investigated the information behaviour of people infected with, or affected by HIV/AIDS (PI/A HIV/AIDS).It sought to generate in-depth knowledge of the real world 'lived information experiences' of PI/A HIV/AIDS, with the aim of informing information management practice, strategy and policy to better contribute to the fight against HIV/AIDS.Ethnography was selected as the methodological approach since it is particularly well suited to unearthing complex phenomena, in marginalised social settings, among hard to reach populations.It has the potential to uncover what might otherwise remain hidden aspects of social experience particularly in settings characterized by stigma and discrimination.The sample studied consisted of 40 PI/A HIV/AIDS in the UK, recruited at an HIV support centre where the researcher worked as a part-time volunteer.It included a range of age groups, disease stages, sexual orientations, and educational and ethnic backgrounds.The interviews were analysed using Spradley's Domain Analysis.The research has contributed to knowledge by revealing a number of distinctive information behaviours, including not only information seeking and sharing, but also covert and hysterical information seeking, destroying and hiding information, which appeared to be strategies for coping with a range of internal and external factors: reactions to diagnosis, stigma, and the need to educate and inform both self and others.The research has highlighted the complex and dynamic shifting nature of HIV/AIDS-related information behaviour of PI/A HIV/AIDS.A model which attempts to describe patterns of HIV/AIDS-related information behaviour and explains why such patterns could develop in the HIV/AIDS-related information context has been developed based on the lived information experiences of PI/ A HIV/AIDS.The model moves beyond relatively reductionist and simplistic representations of information behaviour by addressing finer details of the complexities of xvi Acknowledgements God the almighty: I give thanks to God for giving me the grace and serenity to live one day at a time; enjoy one moment at a time;

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