title: Decision-making in stem cell trials for spinal cord injury: the role of networks and peers.
abstract: OBJECTIVE
  The purpose of this study was to characterize the self-perceived role of professionals and personal caregivers in decision-making about participation in stem cell clinical trials by individuals in early post-spinal cord injury time-points.
  
  
  METHODS
  Data were obtained from focus groups and semi-structured individual interviews from two networks: healthcare professionals (e.g., physicians, allied healthcare workers) and personal contacts (family and friends). We transcribed audio-recorded data in extenso and analyzed transcripts using the qualitative method of constant comparison.
  
  
  RESULTS
  Results from more than 60 h of data suggest that adequate decision support is difficult to achieve for individuals during the subacute phase of injury. Three major obstacles prevent this goal: the personal dimensions of risk; limited insights into the pathophysiology and recovery process; and deference of each network to the other.
  
  
  CONCLUSIONS
  The data suggest that novel strategies for decision-making processes, such as those involving peer support, are needed to enrich the knowledge base of all stakeholders. The results further underscore the importance of the role that both the academic and private sector play in ensuring the protection of human subjects in these trials.
authors: National Core for Neuroethics, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, V6T 2B5, Canada.
authors: Marleen
authors: M
authors: Eijkholt
authors: Brian K
authors: BK
authors: Kwon
authors: Ania
authors: A
authors: Mizgalewicz
authors: Judy
authors: J
authors: Illes
mesh_terms: D002986:Clinical Trials as Topic; D003657:Decision Making; D006282:Health Personnel; D006801:Humans; D007258:Informed Consent; D010379:Peer Group; D012307:Risk Factors; D012944:Social Support; D013119:Spinal Cord Injuries / Q000628:therapy*; D033581:Stem Cell Transplantation