Parent satisfaction with Family-Centered Care at pediatric cardiac intensive care units in Germany and the relationship with parent and infant well-being

• Conditions: Q25; Q20; Q21; Q22; Q23; Congenital malformations of cardiac chambers and connections; Congenital malformations of aortic and mitral valves; Other congenital malformations of heart; Congenital malformations of great arteries; Congenital malformations of great veins

• Registration Number: DRKS00023964
• Lead Sponsor: Deutsches Herzzentrum Berlin, Abteilung für Angeborene Herzfehler/ Kinderkardiologie

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2021-01-04
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Pending
• Sex: All
• Target Recruitment: 280

Inclusion Criteria

Primary caregiver has German language proficiency
- Hospitalization at a PCICU for at least 12 hours

Exclusion Criteria

- Unclear legal custody status of both parents
- Infant has end-of-life care pathway

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Infant mental and physical well-being, as assessed by the German version of the Pediatric Quality of Life Inventory (PEDS-QL) Infant Scales. The questionnaire will be filled out within 24 hours after transfer from the ICU to the intermediary-/ general ward.

Secondary Outcome Measures

Name	Time	Method
Parents' psychological burden, assessed by the German Version of the Depression Anxiety Stress Scale (DASS-21) and parenting stress assessed by the German version of the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU-German/2-Scales). Both questionnaires will be filled out within 24 hours after transfer from the ICU to the intermediary-/ general ward.