Verlagslink DOI: 10.1186/s13023-021-02127-2
Titel: Rare pediatric diseases and pathways to psychosocial care : a qualitative interview study with professional experts working with affected families in Germany
Sprache: Englisch
Autorenschaft: Witt, Stefanie 
Kristensen, Kaja 
Wiegand-Grefe, Silke 
Boettcher, Johannes 
Blömeke, Janika 
Wingartz, Christina 
Bullinger, Monika 
Quitmann, Julia  
Weitere beteiligte Einrichtungen: CARE-FAM-NET Studiengruppe 
Schlagwörter: Children with rare diseases; Expert interviews; Pathway to care; Psychosocial care; Qualitative study
Erscheinungsdatum: 27-Nov-2021
Verlag: BioMed Central
Zeitschrift oder Schriftenreihe: Orphanet journal of rare diseases 
Zeitschriftenband: 16
Zeitschriftenausgabe: 1
Zusammenfassung: 
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.
URI: https://hdl.handle.net/20.500.12738/17217
ISSN: 1750-1172
Begutachtungsstatus: Diese Version hat ein Peer-Review-Verfahren durchlaufen (Peer Review)
Einrichtung: Universitätsklinikum Hamburg-Eppendorf 
Dokumenttyp: Zeitschriftenbeitrag
Hinweise zur Quelle: article number: 497 (2021)
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