Witt Stefanie, Kristensen Kaja, Wiegand-Grefe Silke, Quitmann Julia
Zentrum für Psychosoziale Medizin, Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf, Martinistr. 52 (W26), 20246, Hamburg, Deutschland.
Zentrum für Psychosoziale Medizin, Klinik für Kinder- und Jugendpsychiatrie, -psychotherapie und -psychosomatik, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Deutschland.
Inn Med (Heidelb). 2023 May;64(5):494-499. doi: 10.1007/s00108-023-01496-z. Epub 2023 Mar 29.
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 a lack of appropriate support services.
This article aims to summarize the barriers of current pathways to psychosocial care and identify potential solutions for a care strategy adapted to the needs of families.
In three focus group sessions with 14 professionals from the field of rare pediatric diseases, the results of a previous 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.
儿童罕见病的诊断与治疗会影响整个家庭的生活质量和心理健康。心理社会挑战对患者而言十分严峻，且往往因缺乏适当的支持服务而加剧。
本文旨在总结当前心理社会护理途径的障碍，并确定适合家庭需求的护理策略的潜在解决方案。
在与14名儿科罕见病领域专业人员进行的三次焦点小组会议上，展示了先前一项关于当前心理社会护理途径障碍的定性研究结果。在焦点小组中，专家们讨论了可能的解决方案。
尽管对心理社会支持服务的需求不断增加，但罕见病患儿及其家庭仍难以获得这些服务。为便于获得服务，干预措施应涉及多个层面。一方面，护理应越来越适应家庭需求。与此同时，需要建立长期可靠的护理结构，以确保可持续护理。应促进结构性跨学科合作，同时卫生专业人员的培训也应更紧密地面向罕见病。
