Professor
Mark Ellebæk
Department of Surgery, OUH
| Projekt styring | ||
| Projekt status | Open | |
| Data indsamlingsdatoer | ||
| Start | 01.05.2025 | |
| Slut | 01.09.2030 | |
EAt - Parental information needs - an interview study
Short summary
The primary aim of the study is to identify central themes that parents of infants with esophageal atresia (EA) wish to be informed of, when and how this information should be delivered regarding follow-up treatment and general care. By interviewing parents who have recently experienced the treatment, we expect to gather the most important and central themes that needs improvement.
Rationale
Having a child with esophageal atresia (EA) is life changing. Doctors lack knowledge of how and when to inform the parents of the life to come. Many cases are not discovered until hours after birth, and the parents' world is turned upside down in an already incomprehensible moment. Previous studies of the quality of life in children with EA show reduced scores. Studies investigating life quality in parents to infants with EA show increased levels of anxiety and symptoms of PTSD. In 2019 the European Reference Network for Rare Inherited Congenital Anomalies (ERNICA) determined a need to further investigate how best to counsel parents. Advances in this field can only be achieved by including the thoughts and experiences of affected families.
Description of the cohort
The cohort will be created from parents/caretakers of infants born with EA. We expect to include 10 families
Data and biological material
Data will consist of interview recordings and transcriptions