E-health applications for children with congenital heart disease

Each year, approximately 1,000 children are born in Sweden with a malformation of the heart. Congenital heart defects resulting from malformations are the most common heart disease in children. It can be, for example, holes in the heart's septum or narrowing of the valves in the heart or the large vessels. Approximately one-third of congenital injuries are treated in the first months of life. Most children are treated with good results, but often the child needs to be followed up for a long time. Pediatric heart surgery care in the country is concentrated in Lund and Gothenburg. Finally being able to come home can be experienced as difficult after a long hospital stay and sometimes complications have arisen in connection with surgery. At the same time, the parents experience great relief to be able to come home to their usual environment. During the spring and autumn of 2020, we developed an application for an e-tablet to support parents at home.

The parents get an e-tablet with them when they go home to keep at home as long as they are enrolled in pediatric heart care. This then allows the parents to communicate with the staff about the child's health using pictures, videos, and chat through a secure and encrypted connection. The e-plate does not replace visits or telephone contact with the healthcare system but is a supplement. The e-plate means that parents can quickly get in touch with the staff at the pediatric cardiologist partly through the chat function, and send videos, and pictures. It is possible with monitoring of the child such as following the weight.

The eHealth solution is now being evaluated in an implementation study at Skåne University Hospital. Children and parents in several specialties use the eHealth solution during periods at home with residual care needs. Evaluation takes place using digital questionnaires for children and parents as well as via interviews with family members and professional caregivers with a focus on children's participation in care, as well as family members' satisfaction with care and perceived usefulness of the eHealth solution. Data collection is planned to continue during 2023.

The project is part of the FORTE-funded research program eChildhealth.