Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Abstract Background 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 ex...

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Autores principales:	Stefanie Witt, Kaja Kristensen, Silke Wiegand-Grefe, Johannes Boettcher, Janika Bloemeke, Christina Wingartz, Monika Bullinger, Julia Quitmann, und die CARE-FAM-NET Studiengruppe
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Pathway to care Psychosocial care Children with rare diseases Qualitative study Expert interviews Medicine R
Acceso en línea:	https://doaj.org/article/57d1d142b62c4890ac5adbd2cfdaed75
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spelling	oai:doaj.org-article:57d1d142b62c4890ac5adbd2cfdaed752021-11-28T12:22:44ZRare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany10.1186/s13023-021-02127-21750-1172https://doaj.org/article/57d1d142b62c4890ac5adbd2cfdaed752021-11-01T00:00:00Zhttps://doi.org/10.1186/s13023-021-02127-2https://doaj.org/toc/1750-1172Abstract Background 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. Results 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. Conclusion 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.Stefanie WittKaja KristensenSilke Wiegand-GrefeJohannes BoettcherJanika BloemekeChristina WingartzMonika BullingerJulia Quitmannund die CARE-FAM-NET StudiengruppeBMCarticlePathway to carePsychosocial careChildren with rare diseasesQualitative studyExpert interviewsMedicineRENOrphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Pathway to care Psychosocial care Children with rare diseases Qualitative study Expert interviews Medicine R
spellingShingle	Pathway to care Psychosocial care Children with rare diseases Qualitative study Expert interviews Medicine R Stefanie Witt Kaja Kristensen Silke Wiegand-Grefe Johannes Boettcher Janika Bloemeke Christina Wingartz Monika Bullinger Julia Quitmann und die CARE-FAM-NET Studiengruppe Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
description	Abstract Background 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. Results 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. Conclusion 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.
format	article
author	Stefanie Witt Kaja Kristensen Silke Wiegand-Grefe Johannes Boettcher Janika Bloemeke Christina Wingartz Monika Bullinger Julia Quitmann und die CARE-FAM-NET Studiengruppe
author_facet	Stefanie Witt Kaja Kristensen Silke Wiegand-Grefe Johannes Boettcher Janika Bloemeke Christina Wingartz Monika Bullinger Julia Quitmann und die CARE-FAM-NET Studiengruppe
author_sort	Stefanie Witt
title	Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
title_short	Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
title_full	Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
title_fullStr	Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
title_full_unstemmed	Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
title_sort	rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in germany
publisher	BMC
publishDate	2021
url	https://doaj.org/article/57d1d142b62c4890ac5adbd2cfdaed75
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Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

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