“Doctors can read about it, they can know about it, but they've never lived with it”: How parents use social media throughout the diagnostic odyssey-Reference-Cited by-同舟云学术

“Doctors can read about it, they can know about it, but they've never lived with it”: How parents use social media throughout the diagnostic odyssey

Published:2021-06-06 Issue:6 Volume:30 Page:1707-1718
ISSN:1059-7700
Container-title:Journal of Genetic Counseling
language:en
Short-container-title:Jrnl of Gene Coun

Author:

Deuitch Natalie T.¹^ORCID,Beckman Erika¹,Halley Meghan C.²,Young Jennifer L.²,Reuter Chloe M.³,Kohler Jennefer³,Bernstein Jonathan A.³⁴,Wheeler Matthew T.⁴⁵,Ormond Kelly E.¹,Tabor Holly K.²³⁶,

Affiliation:

1. Department of Genetics Stanford University School of Medicine Stanford CA USA

2. Stanford Center for Biomedical Ethics Stanford University School of Medicine Stanford CA USA

3. Stanford Center for Undiagnosed Diseases Stanford University School of Medicine Stanford CA USA

4. Department of Pediatrics Stanford University School of Medicine Stanford CA USA

5. Division of Cardiovascular Medicine Department of Medicine Stanford University School of Medicine Stanford CA USA

6. Department of Medicine Stanford University School of Medicine Stanford CA USA

Funder

National Society of Genetic Counselors

Publisher

Wiley

Subject

Genetics(clinical)

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1002/jgc4.1438

Reference31 articles.

1. Children’s at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1

2. Complementary and integrative medicine in epilepsy: What patients and physicians perceive

3. “Before Facebook and before social media…we did not know anybody else that had this”: parent perspectives on internet and social media use during the pediatric clinical genetic testing process

4. Children's Online Privacy Protection Rule (“COPPA”) | Federal Trade Commission. (n.d.).

5. Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

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