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Title: Information needs of children of a parent with cancer
Author: Mat Saat, Suzanie
ISNI:       0000 0004 5919 1534
Awarding Body: Loughborough University
Current Institution: Loughborough University
Date of Award: 2016
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This PhD thesis explored the experiences of dependent children and children care-givers facing challenges with their parent s cancer. The aim was to understand children s information experience including their perception of cancer and information culture; information needs, information seeking behaviour, barriers and enablers. The research used a six-stage process. This was informed by an extensive literature review and discussions with cancer specialists, psychologists and researchers from United Kingdom, United States, Australia and Malaysia. This study used a three-cycle, eight-step process of Participative Action Research (PAR) with participation from ten Malay breast cancer patients and their dependent children. Three bilingual (English and Bahasa Malaysia) instruments were developed; 1) An Inquiry to Participate Form to select participants who had dependent children, 2) Three opened-ended questions to obtain children s cancer experience and information needs where drawing was used to encourage children s responses and, 3) A 15-question questionnaire to understand children s experience and information preference. Cancer affected parenting abilities and challenging experiences identified the lack of culturally relevant information and the shift in caregiving responsibilities to dependent children. Children s understanding of cancer was influenced by their experiences and observations, many of which resulted in misconceptions about cancer, its causes, treatment and preventative measures. Children participant s reaction to a health situation triggered their information behaviour. The burden of caregiving and the consequences of a lack of information were greater than anticipated; children had many dimensions of concern and experienced many challenges. This advocated for a more assessable, attractive and sensitive information system. Data synthesis contributed to the development of a Children s Reactive Information Seeking Behaviour An Integrated Model that seeks to explain the relationship between children participants reaction to a health situation and the subsequent processes they undergo to resolve their state of information need.
Supervisor: Not available Sponsor: Majlis Amanah Rakyat Malaysia
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: Information science ; Health informatics ; Impact of parental cancer to children ; Information provision for children of cancer patients ; Caregiving ; Information needs ; Information behaviour ; Children's reactive information seeking behaviour - An integrated model