EN
TÜRKÇE
Poster - 61
Bridging gaps in care of children with EA. Implementation of family liaison nurses in German hospitals.
J Seifried*, L Lang**, A Widenmann*, J Hubertus**
*KEKS e.V., Stuttgart
**Department of Pediatric Surgery, Marienhospital Witten
Purpose:
Parents of children with EA show increased anxiety and decreased quality of life compared to average population. Caring stress, severe EA symptoms and perceived lack of support may contribute to these findings. Parents of children with EA or other rare and chronic diseases experience a lack of coordination in care and must navigate through the health care system by themselves. Especially the first hospital discharge is perceived as challenging and often unorganized. To support people with chronic and rare diseases together with their relatives, the concept of health care professionals in guiding roles has emerged occasionally, e.g. patient navigators. In 2024, the first hospital in Germany implemented a family liaison nurse (FLN) for EA within its department of pediatric surgery. The long-term goal is to establish FLN in every German EA expert centre based on a standardized approach and to create a cross-clinical network for professional exchange. FLN aim to guide the families from their initial hospital stay through discharge and follow-up care to prevent treatment gaps, promote family psychosocial well-being, to decrease emergency readmissions and administrative challenges for hospitals.
Method/ result:
To standardize the implementation of FLNs, existing FLNs and patient navigators will be interviewed and visited if possible. Additionally, a literature review about patient navigation will be conducted. To ensure the quality of care a three-level evaluation is planned. This will involve surveying families, FLNs and other involved health care professionals. The methods and structure of the project will be outlined. Finally, future perspectives and potential developments will be proposed.
Conclusion:
FLN will be introduced at INoEA as a project of a care management system. It has the potential to reduce both care stress for families and administrative burden for clinicians in Germany.