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Diagnosis, Disclosure, and Informed Consent: Learning From Parents of Children With Cancer

Levi, Rachel B. M.A.; Marsick, Rebecca M.A.; Drotar, Dennis Ph.D.; Kodish, Eric D. M.D.

Journal of Pediatric Hematology/Oncology: January-February 2000 - Volume 22 - Issue 1 - p 3-12
Original Articles

Purpose: The aim of this study was to learn about and to describe retrospective perceptions of parents of the circumstances of their child's cancer diagnosis and of the informed consent process.

Methods: Professional moderators conducted three focus groups with 22 parents 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 treatment options occurred amidst tremendous stress; a sense of constraint and lack of control were common; parents experienced variable degrees of choice regarding their child's participation in a clinical trial; and parents provided 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 their child's cancer experience.

Conclusions: Based on these results, the authors conclude with practical recommendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment options, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents from multiple sites.

From the Departments of Psychology (R.B.L.) and Pediatrics (R.M., D.D., E.D.K.), and the Center For Biomedical Ethics (E.D.K.), Rainbow Babies & Children's Hospital of University Hospitals of Cleveland and Case Western Reserve University School of Medicine, Cleveland, OH.

Submitted for publication February 8, 1999; accepted August 25, 1999.

Supported by training grant 18830 from the National Institute of Mental Health (R.B.L.), by a Career Development Award (96-42) from the American Cancer Society (E.D.K.), by grants from the Children's Cancer Group, by grants from the Rainbow Babies and Children's Hospital Board of Trustees, and by grant 1R01 CA83267-01 from the National Cancer Institute.

Address correspondence and reprint requests to Dr. Eric D. Kodish, Rainbow Babies and Children's Hospital, 11100 Euclid Ave., RBC 310, Cleveland, OH 44106.

© 2000 Lippincott Williams & Wilkins, Inc.