Information needs of children of a parent with cancer

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

“She looked like an Alien”: Experience and definitions children attach to a parental cancer diagnosis

Purpose: This paper explores Malay children’s information needs from their experience with parental cancer using information behaviour techniques to elicit sensitive information that provided an indication of what children were thinking. Design/methodology/approach: Data collection adapted the Participatory Action Research method and used participatory-based techniques that included drawings, essays, and interviews. Data explication used an Interpretative Phenomenological Analysis approach. Social Constructionism, Learning theory and Cognitive Theory were used to analyse the data. Thirty-two participants took part, ten mothers with breast cancer at different stages of their cancer journey, and twenty-two children between 6-18 years old. Findings: There are shortcomings in the provision of cancer information for Malay children. Unlike verbose and difficult to digest medical definitions and descriptions about cancer and its treatment, Malay children defined cancer as having components made from their experiences and observations about how cancer affected their parent. The findings explain the relationship between children participants’ reaction to a health situation and the subsequent processes they undergo to resolve their state of information need. Originality/value: It highlights the importance of determining information needs and the combined methods used to gain and interpret the experience children face with a parental cancer diagnosis. Findings about ethnic-based information problems, needs and provision for dependent children of cancer patients, are one of the original contributions of this research. To the best of the authors knowledge, this research is believed to be the first in-depth qualitative and highly participative study of the implications of cancer for dependent children of Malay cancer patients