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Title: “She looked like an Alien”: Experience and definitions children attach to a parental cancer diagnosis
Authors: Mat Saat, Suzanie
Hepworth, Mark
Jackson, Thomas
Keywords: Information needs
Sense making
Participatory action research
Learning theory
Social constructionism
Children as cancer carers
Issue Date: 2018
Publisher: Emerald
Citation: MAT SAAT, S., HEPWORTH, M. and JACKSON, T., 2018. “She looked like an Alien”: Experience and definitions children attach to a parental cancer diagnosis. Aslib Journal of Information Management, 70(1), pp.78-103.
Abstract: 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.
Description: This paper was accepted for publication in the journal Aslib Journal of Information Management and the definitive published version is available at https://doi.org/10.1108/AJIM-06-2017-0142
Version: Accepted for publication
DOI: 10.1108/AJIM-06-2017-0142
URI: https://dspace.lboro.ac.uk/2134/27893
Publisher Link: https://doi.org/10.1108/AJIM-06-2017-0142
ISSN: 2050-3806
Appears in Collections:Published Articles (Business)

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