Maayke Hunfeld

247 General discussion Family functioning and well-being are important factors that have been demonstrated to have a positive effect on the child’s outcome (79). There is an urgent need of structural support of parents and siblings by a professional team of social workers and psychologists– not only during the child’s hospitalization but also afterwards. A support program needs to be developed, probably first in the context of research with the ultimate goal of implementing it as a standard of care. Within this program, parents and siblings must be provided with information and education and support. This is called a ‘parent or family empowerment program’. The first step in the development process, is implementing various questionnaires for parents and siblings that covers different aspects: 1. The experiences of parents and siblings around the CA-event and during hospitalization of their child or sibling. What were their needs during this very tense period, did they miss support of professionals? The surveying can be done both retrospectively and prospectively. 2. The health status, QoL, psychosocial functioning and participation of parents and siblings during hospitalization of their child or sibling and at different time points after hospital discharge, to be surveyed prospectively. This will gain good insight of how parents and siblings are doing and what their needs are. The next step is setting up a focus group with people who are involved in the patient journey. Input is needed from physicians, nurses, social workers and psychologists with knowledge of critical illness (especially CA) and or involvement with follow-up. Moreover, input is needed from parents and siblings themselves. The aim of this focus group is the development of a support program. 8