Information-seeking behaviours and decision-making process of parents of children with cancer

Purpose: This study aimed to explore the information-seeking behaviours, perceptions and decision-making experiences of parents of children with cancer by employing semi-structured interviews. Methods and sample: A qualitative research design was used to assess the information-seeking behaviours, perceptions and decision-making processes used by parents in Turkey whose children have cancer. Interviews were conducted with 15 parents of children with cancer using a semi-structured interview schedule. The interviews were recorded and transcribed verbatim. Results: Six main issues emerged. Issues were related to parents' information needs, the sources of information, difficulties that the parents encountered when seeking information, the decision-making process, the factors affecting decision-making, and expectations from the health team. Information resources for parents included medical doctors and nurses, the internet, friends and the parents of other children who were staying in the hospital. The parents mostly sought information about their child's illness, prognoses, treatment, side-effects and care giving issues. The parents expressed that they were directed primarily by health care providers during their decision-making process. Conclusions: Adequate and systematic information pertaining to illness, treatment, prognosis and child care must be provided by health care professionals throughout the illness process. In addition, individual guidance and spare time are key components to helping parents make decisions about their children with cancer. (C) 2012 Elsevier Ltd. All rights reserved.