[Children visiting intensive care units and emergency departments : Kids are welcome!] / Besuche von minderjährigen Angehörigen in der Intensiv- und Notfallmedizin : Kinder als Besucher willkommen!

In this white paper, key recommendations for visitation by children in intensive care units (ICU; both pediatric and adult), intermediate care units and emergency departments (ED) are presented. In ICUs and EDs in German-speaking countries, the visiting policies for children and adolescents are regulated very heterogeneously: sometimes they are allowed to visit patients without restrictions in age and time duration, sometimes this is only possible from the age of teenager on, and only for a short duration. A request from children to visit often triggers different, sometimes restrictive reactions among the staff. Management is encouraged to reflect on this attitude together with their employees and to develop a culture of family-centered care. Despite limited evidence, there are more advantages for than against a visit, also in hygienic, psychosocial, ethical, religious, and cultural aspects. No general recommendation can be made for or against visits. The decisions for a visit are complex and require careful consideration.

Participatory Development of a Modular Advance Care Planning Program in Pediatric Palliative Care (MAPPS).

CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS: Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analyzed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS: The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION: Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.