Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study

Abstract

This study was performed to obtain information on parents of children with cancer: (a) what role parents preferred to assume in treatment decision making (TDM); (b) parents' priority information needs; (c) if a relationship existed between TDM preferences and information needs; and (d) if sociodemographic, disease and treatment variables predicted TDM preferences or information needs. A cross-sectional survey was conducted with a convenience sample of 58 parents who had a child less than 13 years of age diagnosed with cancer in the previous year. Instruments included a Sociodemographic, Disease, and Treatment Questionnaire; the Control Preferences Scale for Pediatrics, and an Information Needs Questionnaire. The results showed that parents had systematic preferences about TDM, preferring collaborative followed by passive and active roles. Nine priorities in information needs (highest to lowest) were found: (a) treatments and tests, (b) cure, (c) caring for my child, (d) emotional impact, (e) side effects, (f) physical impact, (g) disease, (h) coping with painful procedures, and (i) impact on the family. Sociodemographic, disease and treatment variables were not predictive of preferences for TDM or information needs. Concrete informational needs take precedence over issues of emotional or family impact or pain. A low Kendall's coefficient (0.07) indicated that parents as a group do not have uniform information needs. Information giving must be individualized.