Parental perceptions of the informed consent process in pediatric bone marrow transplantation (BMT)

Abstract

6123 Background: The validity of informed consent in pediatric bone marrow transplantation (BMT) may be compromised by the complexity of information provided and the emotional duress under which it occurs. Anecdotal evidence suggests parents feel compelled to consent to BMT on behalf of their child. The purpose of this study was: 1. to determine if parents perceive there to be a real/actual choice when consenting to pediatric BMT, 2. to survey parental experience of the informed consent process, and 3. to determine if the informed consent process affects parental hope, anxiety, stress or guilt. Methods: An information package and informed consent document were mailed to 67 English-speaking parents of 34 children who underwent BMT. They were all prepared for transplant by one physician using a standardized template at the IWK Health Centre (Halifax, Nova Scotia, Canada) between 1998 and 2002. Semi-structured interviews were conducted by phone (13) or in person (7). Transcripts were analyzed for common themes by 2 independent reviewers. Results: Twenty parents (12 mothers and 8 fathers) of 12 children consented to participate in the study. This included five parents of three children who had died. Parental participants did not differ from eligible non-participants in indication for transplant, donor source, major complications, or death rates for their children. All subjects reported feeling they had no personal choice but to consent to BMT. Parents denied experiencing external pressure to consent. Subjects felt well prepared for potential side effects and complications; only 2 reported unexpected side effects. Parents did not report retrospectively doubting the informed consent process. All parents would consent to pediatric BMT if in the same position again. Parental hope, stress, guilt and anxiety were not reported to be affected by the informed consent process. Conclusions: Parents do not perceive a personal choice when providing consent for pediatric BMT. Regardless of outcome, parents do not retrospectively question the quality of consent they provided for pediatric BMT nor do they feel that hope, stress, guilt or anxiety are affected by the consent process. No significant financial relationships to disclose.