“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.