Validity and consequence of informed consent in pediatric bone marrow transplantation: The parental experience

Background. Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) are suboptimal given the complexity of the procedure, lack of options, and parent emotional duress. We studied if parents perceived choice when consenting to BMT, if they felt the consent provided was valid, and how the consent process affected them. Methods. Telephone or face-to-face interviews were recorded using a semi-structured interview outline. Interview transcripts were anonymized, and independently analyzed by three reviewers. Results. Twenty parents of twelve children participated, including five bereaved parents. There were no differences in patient transplant characteristics between the eligible and study groups. Divorced or separated parents were underrepresented in the participant group. Fifteen parents felt personally compelled to consent; most (18) denied feeling external medical pressure to do so. All parents felt their consent was valid and most reported adequate levels of freedom, capacity, and information. Expectations formulated during the consent process strongly influenced parents' experience post-BMT. Good communication during consent contributed to trust and therapeutic alliance with physicians following BMT. Late parental stress and anxiety were periodic, but very high in some families. Conclusions. Parents feel consent for pediatric BMT is valid, despite feeling personally compelled to consent. Strategies aimed at nurturing hope and realistic expectations may assist in improving the consent process, while diminishing long-term stressors.