title: Validity and consequence of informed consent in pediatric bone marrow transplantation: The parental experience.
abstract: 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.
authors.affiliation: Department of Family Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
authors.forename: Jan M
authors.initials: JM
authors.lastname: Benedict
authors.forename: Christy
authors.initials: C
authors.lastname: Simpson
authors.forename: Conrad V
authors.initials: CV
authors.lastname: Fernandez
mesh_terms: D000328:Adult; D001294:Attitude to Health; D016026:Bone Marrow Transplantation / Q000502:physiology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010287:Parent-Child Relations; D033282:Parental Consent / Q000523:psychology; D010290:Parents