The information needs of information carers: a framework to support a comprehensive understanding
AffiliationScience - Information Systems
Document TypePhD thesis
CitationsAlzougool, B. (2010). The information needs of information carers: a framework to support a comprehensive understanding. PhD thesis, Science - Information Systems, The University of Melbourne.
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© 2010 Dr. Basil Alzougool
There has been little research that fully explores the nature and aspects of information needs of informal carers or provides a complete account of these needs. A comprehensive understanding of these needs is important because it is the first step to meeting these needs effectively. This research project set out to identify all the potential aspects of informal carers' information needs that could be used for investigating, understanding and classifying these needs comprehensively. Three main studies were undertaken. The project initially adopted a conceptual approach (study 1) to develop a framework for these aspects. Then this framework was tested, refined and validated using a qualitative approach (study 2), followed by a quantitative approach (study 3). The conceptual study involved analysing critically the existing literature on the information needs of informal carers, as well as related literature on health informatics and information needs more generally. Following this analysis, a conceptual framework was developed that encompassed the potential aspects of informal carers' information needs. This framework divides these aspects into two broad types: (i) the information needs focus, which includes four foci (the persons needing care, the informal carers themselves, the interaction between informal carers and persons needing care, and the interaction between informal carers and other parties) and (ii) the information needs state, which includes four states (recognised-demanded, recognised-undemanded, unrecognised-demanded, and unrecognised-undemanded). The qualitative study involved conducting two separate but related sub-studies (study 2A and study 2B) with nine informal carers of diabetic children as an example of a group of informal carers. Study 2A aimed to confirm or disconfirm the existence of the four foci of information needs of informal carers and to identify any additional foci. Study 2B aimed to confirm or disconfirm the existence of the four states of information needs of informal carers and to identify any additional states. It also aimed to develop items for the questionnaire that was used to measure the information needs state with a large sample of informal carers in the quantitative study. The quantitative study employed a questionnaire with 198 informal carers (above 18 years old) of all kinds. It aimed to test the defined information needs states, to examine whether they were distinct from each other in the wider community of informal carers, and to examine whether they varied in terms of the demographic and socioeconomic characteristics of informal carers. The existence of the two broad types of aspects of information needs of informal carers was confirmed empirically. This research also showed that informal carers may give priority to some foci over others at different stages during their caring journey, and the occurrence and frequency of the four states may vary among informal carers. Thus the validated framework worked well in portraying a comprehensive picture of the information needs of informal carers in this study. These two different aspects of information needs of informal carers are in turn useful to researchers and practitioners. For researchers, these two aspects provide a new perspective from which to better investigate, understand and classify the information needs of informal carers and information needs in general. For practitioners, these two aspects assist in designing and providing information that may meet the needs of informal carers more effectively.
Keywordsinformation needs; informal carers; carers; health informatics; health information systems; methodology for identifying information needs; diabetes
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