Treatments for Neurodevelopmental Disorders: Evidence, Advocacy, and the Internet

被引:8
作者
Di Pietro, Nina C. [1 ,2 ]
Whiteley, Louise [1 ]
Mizgalewicz, Ania [1 ,2 ]
Illes, Judy [1 ,2 ]
机构
[1] Univ British Columbia, UBC Hosp, Natl Core Neuroeth, Div Neurol,Fac Med, Vancouver, BC V6T 2B5, Canada
[2] Univ British Columbia, NeuroDevNet Inc, Child & Family Res Inst, Vancouver, BC V6T 2B5, Canada
基金
英国惠康基金; 加拿大健康研究院;
关键词
Autism cerebral palsy; Foetal alcohol spectrum disorder; Advocacy; Internet; Treatment information; Science communication; Ethics; Content analysis; WORLD-WIDE-WEB; AUTISM SPECTRUM DISORDERS; HEALTH INFORMATION; ALTERNATIVE MEDICINE; FOCUS GROUPS; YOUNG-CHILDREN; COMPLEMENTARY; PARENTS; QUALITY; CARE;
D O I
10.1007/s10803-012-1551-7
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
The Internet is a major source of health-related information for parents of sick children despite concerns surrounding quality. For neurodevelopmental disorders, the websites of advocacy groups are a largely unexamined source of information. We evaluated treatment information posted on nine highly-trafficked advocacy websites for autism, cerebral palsy, and fetal alcohol spectrum disorder. We found that the majority of claims about treatment safety and efficacy were unsubstantiated. Instead, a range of rhetorical strategies were used to imply scientific support. When peer-reviewed publications were cited, 20 % were incorrect or irrelevant. We call for new partnerships between advocacy and experts in developmental disorders to ensure better accuracy and higher transparency about how treatment information is selected and evidenced on advocacy websites.
引用
收藏
页码:122 / 133
页数:12
相关论文
共 65 条
[1]   Complementary and Alternative Medicine in Autism: An Evidence-Based Approach to Negotiating Safe and Efficacious Interventions with Families [J].
Akins, R. Scott ;
Angkustsiri, Kathy ;
Hansen, Robin L. .
NEUROTHERAPEUTICS, 2010, 7 (03) :307-319
[2]   How reliable is science information on the web? [J].
Allen, ES ;
Burke, JM ;
Welch, ME ;
Rieseberg, LH .
NATURE, 1999, 402 (6763) :722-722
[3]   Alternative medicine - The risks of untested and unregulated remedies [J].
Angell, M ;
Kassirer, JP .
NEW ENGLAND JOURNAL OF MEDICINE, 1998, 339 (12) :839-841
[4]  
[Anonymous], 2007, ALTERNATIVE PATHWAYS
[5]   Online pediatric information seeking among mothers of young children: Results from a qualitative study using focus groups [J].
Bernhardt, JM ;
Felter, EM .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2004, 6 (01) :83-98
[6]   Parental use of the Internet to seek health information and primary care utilisation for their child: a cross-sectional study [J].
Bouche, Gauthier ;
Migeot, Virginie .
BMC PUBLIC HEALTH, 2008, 8 (1)
[7]  
Boyer C., 2002, HIGHLIGHTS 8 HON SUR
[8]   Deaths resulting from hypocalcemia after administration of edetate disodium: 2003-2005 [J].
Brown, Mary Jean ;
Willis, Teresa ;
Omalu, Bennet ;
Leiker, Richard .
PEDIATRICS, 2006, 118 (02) :E534-E536
[9]   A question of balance - The autism-vaccine controversy in the British and American elite press [J].
Clarke, Christopher E. .
SCIENCE COMMUNICATION, 2008, 30 (01) :77-107
[10]   Information epidemics, economics, and immunity on the Internet [J].
Coiera, E .
BRITISH MEDICAL JOURNAL, 1998, 317 (7171) :1469-1470