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"An Investigation of the Information Needs and Behaviours of Parents of Children with Cancer." A. Marinello. S. Buchanan. Department of Computer and Information Sciences, University of Strathclyde. 2013. Download PDF (BibTeX) MSc Information and Library Studies

Abstract:
Approximately 1500 children a year are diagnosed with cancer in the United Kingdom (Lennox, 2012). While survivorship of childhood cancer has increased significantly, the childhood cancer experience (including symptoms and treatment) has a substantial affect on the daily life of families and can have lasting emotional and psychological effects for all involved. Several studies, (including Maurice-Stam, et al, 2008, and Norberg, A., Pöder, U., von Essen, L., 2011) have shown a link between the ability to search for and use information during the childhood cancer experience and the coping abilities of parents of children with cancer (PCWC) and the development of post-traumatic stress disorder (PTSD).

This study identifies common information needs and preferences of PCWC. An emergent methodology of analysing and coding archived posts from online discussion forums was employed. In total, 57 posts were included for analysis from the Macmillan and CLIC Sargent cancer support websites. While the literature review suggests that the most commonly sought type of information by PCWC are treatment, disease, and practical/daily life information, the gathered posts indicate that PCWC primarily use online discussion forums in order to share similar experiences information with other PCWC. In addition to the quantifiable data that is presented, several of the posts have also been analysed using established models of ISB in order to identify and examine evidence of uncertainty, Information Poverty, and Everyday life information seeking (ELIS) among PCWC.

The recommendations for future study focus on an ethnographic study that would follow families through the childhood cancer experience in order to track what events prompt changes in information needs and how PCWC react to uncertainty. The priority recommendation for services is to create and promote cancer-type specific discussion forums for PCWC. Service recommendations also discuss the use of information prescriptions and providing positive information experiences early within the childhood cancer experience in order to encourage PCWC to actively seek and use information throughout the childhood cancer experience.