TY - JOUR
T1 - “Doctors can read about it, they can know about it, but they've never lived with it”
T2 - How parents use social media throughout the diagnostic odyssey
AU - Undiagnosed Diseases Network
AU - Deuitch, Natalie T.
AU - Beckman, Erika
AU - Halley, Meghan C.
AU - Young, Jennifer L.
AU - Reuter, Chloe M.
AU - Kohler, Jennefer
AU - Bernstein, Jonathan A.
AU - Wheeler, Matthew T.
AU - Ormond, Kelly E.
AU - Tabor, Holly K.
AU - Acosta, Maria T.
AU - Adam, Margaret
AU - Adams, David R.
AU - Agrawal, Pankaj B.
AU - Alejandro, Mercedes E.
AU - Alvey, Justin
AU - Amendola, Laura
AU - Andrews, Ashley
AU - Ashley, Euan A.
AU - Azamian, Mahshid S.
AU - Bacino, Carlos A.
AU - Bademci, Guney
AU - Baker, Eva
AU - Balasubramanyam, Ashok
AU - Baldridge, Dustin
AU - Bale, Jim
AU - Bamshad, Michael
AU - Barbouth, Deborah
AU - Bayrak-Toydemir, Pinar
AU - Beck, Anita
AU - Beggs, Alan H.
AU - Behrens, Edward
AU - Bejerano, Gill
AU - Bennet, Jimmy
AU - Berg-Rood, Beverly
AU - Berry, Gerard T.
AU - Bican, Anna
AU - Bivona, Stephanie
AU - Blue, Elizabeth
AU - Bohnsack, John
AU - Bonnenmann, Carsten
AU - Bonner, Devon
AU - Botto, Lorenzo
AU - Boyd, Brenna
AU - Cole, F. Sessions
AU - Pak, Stephen
AU - Schedl, Timothy
AU - Shin, Jimann
AU - Solnica-Krezel, Lilianna
AU - Wambach, Jennifer
N1 - Publisher Copyright:
© 2021 National Society of Genetic Counselors
PY - 2021/12
Y1 - 2021/12
N2 - Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the “right” community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
AB - Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the “right” community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
KW - diagnostic odyssey
KW - rare diseases
KW - social media
KW - undiagnosed diseases
UR - http://www.scopus.com/inward/record.url?scp=85107430685&partnerID=8YFLogxK
U2 - 10.1002/jgc4.1438
DO - 10.1002/jgc4.1438
M3 - Article
C2 - 34096130
AN - SCOPUS:85107430685
SN - 1059-7700
VL - 30
SP - 1707
EP - 1718
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 6
ER -