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A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

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Kimberly Sharpe at University of British Columbia
Kimberly Sharpe
Nina Di Pietro
Nina Di Pietro
Nina Di Pietro
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Karen Jacob at University of British Columbia
Karen Jacob
Judy Illes at University of British Columbia
Judy Illes
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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.
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A Dichotomy of Information-Seeking and Information-Trusting:
Stem Cell Interventions and Children with Neurodevelopmental
Disorders
Kimberly Sharpe
1
&Nina Di Pietro
1
&KarenJ.Jacob
1
&Judy Illes
1
Published online: 10 June 2016
#Springer Science+Business Media New York 2016
Abstract Parents and primary caregivers of children with
Cerebral Palsy (CP) and Autism Spectrum Disorder
(ASD) are faced with difficult treatment choices and man-
agement 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
whoconsideredtakingtheirchildwithASDorCPabroad
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 di-
chotomy 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.
Keywords Stem cells .Cerebral palsy .Autism spectrum
disorder .Stem cell interventions .Trust .Ethics
Introduction
Parents of children with Cerebral Palsy (CP) and Autism
Spectrum Disorder (ASD) are faced with difficult treat-
ment choices and management options for their children.
CP and ASD are both common neurodevelopmental dis-
orders affecting children in early childhood and persisting
throughout the lifespan. CP, a chronic non-progressive
disorder that compromises motor control, speech and, in
some cases, cognitive functioning, affects approximately
1–2 of every 1000 live births [1]. ASD similarly affects
approximately2inevery1000childrenandchildrenwith
ASD experience impaired social and behavioral skills [2].
The potential of stem cell technologies as an intervention-
al strategy to mediate the suffering of children affected by
CP and ASD has gained considerable attention in the last
decade [3] and is currently the focus of several ongoing
clinical trials [4,5]. While research continues, stem cell
clinics offer and widely advertise services categorized as
therapy or treatment for a fee [6–8]. Stem cell tourism,
where individuals and their families travel outside their
country of residence to receive stem cell interventions,
has become an increasingly popular form of medical tour-
ism [9]. Previous research has demonstrated interest in
stem cell tourism for children with CP and ASD, with
some parents chronicling their stories in the print media
Stem Cell Rev and Rep (2016) 12:438–447
DOI 10.1007/s12015-016-9667-3
We use parents, caregivers and parents and caregivers interchangeably in
this paper.
*Judy Illes
jilles@mail.ubc.ca; http://www.neuroethicscanada.ca
1
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
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
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