Short summary

Parents who are expecting a child, which has been prenatal diagnosed with a congenital abdominal malformation at Odense University Hospital, recieve information about the disease and     the expected trajectory in connection with their first visits to the pregnancy clinic. They are also introduced to the various wards on which their child will be treated inkluded the intensive care unit (BRITA).

This study uses fieldnotes from participatory observation and interviews to investigate whether the structure of the information meets the needs and preferences of the parents. We will accompany the parents on the introduction day and subsequently conduct semistructured interviews.  

Rationale

Going through a pregnancy with the knowledge of a fetal malfomation, is associated with concerns about the postnatal trajectory and the outcome for the child. Parents need emotional support as well as factual knowledge about what to expect in relation to giving birth and the subsequent treatment of their child. It is important that the information given, is consistent across the medical specialities involved. There are individual variations as to how much information the parents wish to recieve and a model to accomodate this is preferable.

In 2018 15 children were admitted to BRITA within 2 days after birth with a diagnosis of abdominal malformation. 

The purpose of this study is to investigate the parental perspective on the introduction given during the pregnancy and to evaluate the current organization of the programme.    

Description of the cohort

Parents who are expecting a child which has been prenatal diagnosed with an abdominal malformation of the following diagnosis: congenital diafragmatic hernia, gastroscisis, omphalocele, eosophagus atresia. 

Data and biological material

Notes taken during participant observation

Interview data

Background information from the electronic patient record

Collaborating researchers and departments

Dept. of Anaestesiology and Intensive Care, Odense University Hospital

• Critical Care Nurse, Heidi Granby
• Critical Care Nurse, Helle Schneefeld, MscHS