CHARGE on: Digital parenting of a child with rare genetic syndrome with the help of Facebook group
Study details
| Year: | Not reported |
| Scope: | Local |
| Countries: | Estonia |
| Methodology: | Empirical research – Qualitative |
| Methods of data collection: | Ethnography / participant observation |
| Researched Groups: | Parents |
| Children Ages: | All (0-18 years old) |
| Informed Consent: | Consent not mentioned |
| Ethics: | Ethical considerations not mentioned |
| Data Set Availability: | Not mentioned |
Goals
The aim of the study was to make sense of the role a closed Facebook group can play in the life of a parent with a child who has rare genetic syndrome, CHARGE.