The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey.
J Pediatr Surg
; 51(11): 1766-1771, 2016 Nov.
Article
en En
| MEDLINE
| ID: mdl-27522307
BACKGROUND: We aimed to define characteristics and needs of Facebook users in relation to congenital anomalies. METHODS: Cross-sectional analysis of Facebook related to four congenital anomalies: anorectal malformation (ARM), congenital diaphragmatic hernia (CDH), congenital heart disease (CHD) and hypospadias/epispadias (HS/ES). A keyword search was performed to identify relevant Groups/Pages. An anonymous survey was posted to obtain quantitative/qualitative data on users and their healthcare needs. RESULTS: 54 Groups and 24 Pages were identified (ARM: 10 Groups; CDH: 9 Groups, 7 Pages; CHD: 32 Groups, 17 Pages; HS/ES: 3 Groups), with 16,191 Group members and 48,766 Page likes. 868/1103 (79%) of respondents were parents. Male:female ratio was 1:10.9. 65% of the users were 26-40years old. Common reasons for joining these Groups/Pages included: seeking support, education, making friends, and providing support to others. 932/1103 (84%) would like healthcare professionals (HCPs) to actively participate in their Group. 31% of the respondents felt that they did not receive enough support from their healthcare system. 97% of the respondents would like to join a Group linked to their primary hospital. CONCLUSIONS: Facebook Groups/Pages related to congenital anomalies are highly populated and active. There is a need for HCPs and policy makers to better understand and participate in social media to support families and improve patient care.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Padres
/
Apoyo Social
/
Anomalías Congénitas
/
Actitud Frente a la Salud
/
Medios de Comunicación Sociales
Tipo de estudio:
Observational_studies
/
Prevalence_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspecto:
Determinantes_sociais_saude
Límite:
Adult
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
J Pediatr Surg
Año:
2016
Tipo del documento:
Article
País de afiliación:
Reino Unido
Pais de publicación:
Estados Unidos