Diagnosis, disclosure, and informed consent: Learning from parents of children with cancer

Purpose: The aim of this study was to learn about and to describe retrospec tive perceptions of parents of the circumstances of their child's cancer di agnosis and of the informed consent process. Methods: Professional moderators conducted three focus groups with 22 paren ts of children with cancer who were eligible for enrollment in a Children's Cancer Group clinical trial research protocol, Each focus group consisted of seven to nine parents and was audiotaped and transcribed. Results: Parents' descriptions of the early phase of their child's illness yielded the following themes: dialogues regarding the diagnosis and treatme nt options occurred amidst tremendous stress; a sense of constraint and lac k of control were common; parents experienced variable degrees of choice re garding their child's participation in a clinical trial; and parents provid ed suggestions about how to improve the informed consent process. Overall, parents did not verbalize distinctions between their understanding of their child's medical treatment, research participation, and other aspects of th eir child's cancer experience. Conclusions: Based on these results, the authors conclude with practical re commendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment opt ions, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents f rom multiple sites.