Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Orphanet J Rare Dis. 2021 Nov 27;16(1):497. doi: 10.1186/s13023-021-02127-2.
Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements.
We conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels.
Based on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.
罕见病多发生于儿童早期，对患儿及其家庭的生活质量有重大影响。他们对心理社会支持的需求相当大，但德国的心理社会关怀仍远远没有成为常规护理的一部分。我们采访了专家，以探讨他们如何描述当前获得心理社会关怀的途径、潜在的障碍和问题，以及改进的可能性。
我们对 49 名在躯体医学、心理社会医学、患者组织、儿童和青年福利以及教育部门工作的专家进行了电话采访。采访内容被转录并使用焦点访谈分析进行了分析。研究结果记录了家庭获得心理社会关怀的途径和使用的设施。专家描述的障碍可以概括为三个层面：家庭组织层面、家庭心理情感层面和最后是结构系统层面。因此，改进的建议针对这些层面提出。
根据专家的观点，为儿童罕见病患者及其家庭提供心理社会关怀途径有很大的改进空间。不幸的是，在提供心理社会关怀方面似乎还有很长的路要走。然而，不同专业群体对这一问题的认识很高，并且提出了许多改进建议，包括向所有家庭成员持续扩大服务、加强低门槛服务、简化申请程序，以及加强不同资助机构之间以及不同护理提供者之间的合作。
