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

BACKGROUND: 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. RESEARCH QUESTION: This arti...

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Autores principales: Witt, Stefanie, Kristensen, Kaja, Wiegand-Grefe, Silke, Quitmann, Julia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Medizin 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10054192/
https://www.ncbi.nlm.nih.gov/pubmed/36988654
http://dx.doi.org/10.1007/s00108-023-01496-z
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author Witt, Stefanie
Kristensen, Kaja
Wiegand-Grefe, Silke
Quitmann, Julia
author_facet Witt, Stefanie
Kristensen, Kaja
Wiegand-Grefe, Silke
Quitmann, Julia
author_sort Witt, Stefanie
collection PubMed
description BACKGROUND: 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. RESEARCH QUESTION: 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. MATERIALS AND METHODS: 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. RESULTS AND DISCUSSION: 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.
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spelling pubmed-100541922023-03-29 Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung Witt, Stefanie Kristensen, Kaja Wiegand-Grefe, Silke Quitmann, Julia Inn Med (Heidelb) Seltene Erkrankungen BACKGROUND: 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. RESEARCH QUESTION: 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. MATERIALS AND METHODS: 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. RESULTS AND DISCUSSION: 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. Springer Medizin 2023-03-29 2023 /pmc/articles/PMC10054192/ /pubmed/36988654 http://dx.doi.org/10.1007/s00108-023-01496-z Text en © The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature 2023 This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.
spellingShingle Seltene Erkrankungen
Witt, Stefanie
Kristensen, Kaja
Wiegand-Grefe, Silke
Quitmann, Julia
Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title_full Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title_fullStr Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title_full_unstemmed Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title_short Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung
title_sort maßnahmen für einen optimalen zugang von kindern mit seltenen erkrankungen und ihrer familien zur psychosozialen versorgung
topic Seltene Erkrankungen
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10054192/
https://www.ncbi.nlm.nih.gov/pubmed/36988654
http://dx.doi.org/10.1007/s00108-023-01496-z
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