Zusammenfassung
Hintergrund
Eine angeborene chronische Nierenerkrankung geht nicht nur für das betroffene Kind mit immensen Einschränkungen einher. Auch auf die Eltern, die in vielen Fällen schon vor der Geburt von der Erkrankung erfahren, kommen schwere Zeiten zu, die häufige Krankenhausaufenthalte, Arzttermine, Operationen, Dialyse und schließlich die Transplantation beinhalten. Wichtige Faktoren, die die kognitive und emotionale Anpassung der Eltern an die Erkrankung ihres Kindes positiv beeinflussen können, sind die emotionale Unterstützung durch andere betroffene Eltern, ausreichend Informationen über die Erkrankung sowie vertrauensvolle Beziehungen zum Behandlungsteam. Mit dem Ziel, diese Faktoren zu stärken und damit zum Empowerment der Eltern beizutragen, wurde im Jahr 2015 in der Pädiatrischen Nephrologie der Uniklinik Köln die Nephro-Krabbelgruppe gegründet, die Eltern von nierenkranken Säuglingen und Kleinkindern die Möglichkeit eines Austauschs untereinander sowie mit dem anwesenden Klinikpersonal bieten soll.
Methodik
Es wurde eine qualitative Befragung unter den regelmäßig teilnehmenden Müttern mit einem selbst erstellten Fragebogen mit 9 offenen Fragen zur Nephro-Krabbelgruppe durchgeführt. Insgesamt füllten 8 Mütter den Fragebogen aus.
Ergebnisse
Die Befragung gab deutliche Hinweise darauf, dass die Krabbelgruppe unsere Ziele – Erfahrung von emotionaler Unterstützung, Erfahrungsaustausch und die Gelegenheit, Fragen an das Klinikpersonal zu stellen – erfüllt.
Schlussfolgerungen
Die Nephro-Krabbelgruppe ist ein kostengünstig umzusetzendes Angebot für nierenkranke Säuglinge und Kleinkinder und ihre Eltern, das dazu geeignet scheint, die kognitive und emotionale Anpassung der Eltern sowie deren Empowerment in Bezug auf die Erkrankung ihres Kindes zu stärken.
Abstract
Background
A congenital kidney disease is not only associated with immense restrictions for the affected child. Also the parents, who in many cases already know about the disease before birth, face difficult times which include frequent hospitalization, doctor’s appointments, surgery, dialysis and finally transplantation. Important factors that are suited to positively influence cognitive and emotional adjustment of the parents with respect to the child’s disease, are emotional support from other affected families, sufficient information about the disease as well as a trusting relationship with the medical team. With the objective of strengthening these factors and consequently contributing to the parents’ empowerment, in 2015 the Pediatric Nephrology Unit of the University Hospital Cologne established the Nephro-Playgroup that aimed to give parents of infants and toddlers suffering from chronic kidney diseases the opportunity for exchanging experiences among each other as well as with the attendant hospital staff.
Methods
Following a qualitative approach, eight mothers regularly attending the Nephro-Playgroup completed a questionnaire containing eight open-ended questions about the playgroup.
Results
The results indicated that the playgroup fulfills the intended objectives of providing the possibility of experiencing emotional support, to exchange experiences and to consult the hospital staff.
Conclusion
The Nephro-Playgroup is an economically implementable offer for infants and toddlers with chronic kidney disease and their parents and it seems to be suitable to strengthen the parents’ cognitive and emotional adjustment as well as their empowerment in relation to their child’s disease.
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L.M. Körner, S. Brengmann, M. Peer, C. Düchting und L.T. Weber geben an, dass kein Interessenkonflikt besteht.
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B. Koletzko, München
T. Lücke, Bochum
E. Mayatepek, Düsseldorf
N. Wagner, Aachen
S. Wirth, Wuppertal
F. Zepp, Mainz
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Körner, L.M., Brengmann, S., Peer, M. et al. Die Kölner Nephro-Krabbelgruppe. Monatsschr Kinderheilkd 167, 131–137 (2019). https://doi.org/10.1007/s00112-017-0387-9
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DOI: https://doi.org/10.1007/s00112-017-0387-9