A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders.
Parents and primary caregivers of children with Cerebral Palsy (CP) and Autism Spectrum Disorder (ASD) are faced with difficult treatment choices and management options for their children. The potential of stem cell technologies as an interventional strategy for CP and ASD has gained attention in the last decade. Information about these interventions varies in quality, resulting in a complex landscape for parent decision making for a child's care. Further complicating this landscape are clinics that advertise these interventions as a legitimate treatment for a fee. In this study, we surveyed individuals who considered taking their child with ASD or CP abroad for stem cell interventions on their use of different sources of stem cell related health information and their level of trust in these sources. Participants reported that while the Internet was their most frequent source of information, it was not well-trusted. Rather, information sources trusted most were researchers and the science journals in which they publish, other parents of children with CP and ASD, and healthcare providers. These findings highlight a dichotomy between information-seeking preferences and information-trusted sources. We discuss the challenges of health science communication and present innovative opportunities to increase communication with trusted and reliable sources as part of an integrated multi-pronged approach.
National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, V6T 2B5, Canada.
Kimberly
K
Sharpe
National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, V6T 2B5, Canada.
Nina
N
Di Pietro
National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, V6T 2B5, Canada.
Karen J
KJ
Jacob
National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, V6T 2B5, Canada. jilles@mail.ubc.ca.
Judy
J
Illes
D000328:Adult; D000368:Aged; D000067877:Autism Spectrum Disorder / Q000628:therapy*; D002547:Cerebral Palsy / Q000628:therapy*; D003657:Decision Making; D005260:Female; D066275:Health Information Exchange / Q000592:standards* / Q000706:statistics & numerical data; D063005:Health Information Systems / Q000592:standards* / Q000706:statistics & numerical data; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D057226:Information Seeking Behavior; D008297:Male; D008875:Middle Aged; D033581:Stem Cell Transplantation / Q000379:methods*; D011795:Surveys and Questionnaires
Autism spectrum disorder; Cerebral palsy; Ethics; Stem cell interventions; Stem cells; Trust