Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung

Abstract

The diagnosis and treatment of rare diseases in childhood can affect the quality of life and mental health of the entire family. The psychosocial challenges are significant for those affected and are often compounded by alack of appropriate support services. This article aims to summarize the barriers of current pathways to psychosocial care and identify potential solutions for acare strategy adapted to the needs of families. In three focus group sessions with 14professionals from the field of rare pediatric diseases, the results of aprevious qualitative study on barriers in current pathways to psychosocial care were presented. In the focus groups, the experts discussed possible solutions. Despite an increased need for psychosocial support services, it is difficult for children with rare diseases and their families to access these. To facilitate access, interventions should address multiple levels. On the one hand, care should be increasingly adapted to the needs of families. At the same time, long-term and reliable care structures need to be established to ensure sustainable care. Structural interdisciplinary collaboration should be promoted, while the training of health professionals should also be more strongly geared to rare diseases.