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Klin Padiatr 2024; 236(03): 165-172
DOI: 10.1055/a-2246-2645
Originalarbeit

Die ambulant-aufsuchende Versorgung von an Krebs erkrankten Kindern aus Sicht der Erziehungsberechtigten

Eine qualitative EvaluationsstudieHospital-based Home Care for Children with Cancer from the Parents̓ Point of ViewA Qualitative Exploration of Family Members
Ute Karbach  ‡
1   University of Cologne, University of Cologne Institute for Medical Sociology Health Services Research and Rehabilitation Science, Köln, Germany
,
Sarah Krawiec‡
2   Department of Rehabilitation Sciences, TU Dortmund University, Dortmund, Germany
,
Stephan Remmert‡
2   Department of Rehabilitation Sciences, TU Dortmund University, Dortmund, Germany
,
Rebecca Toenne
3   NOF, Healthcare Network for critically ill children, Hannover, Germany
,
Dirk Reinhardt
4   Clinic for pediatrics, Universitätsklinikum Essen, Essen, Germany
,
Dominik T. Schneider
5   Clinic for Pediatrics and Adolescent Medicine, Clinical Center Dortmund, Dortmund, Germany
,
Thorsten Simon 
6   Pediatric Oncology and Hematology, University Hospital Cologne, Köln, Germany
,
Katharina Waack-Buchholz
7   Pediatric Research Network, University Hospital Essen, Essen, Germany
,
Rebecca Kristiment
7   Pediatric Research Network, University Hospital Essen, Essen, Germany
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Zusammenfassung

Hintergrund Jedes Jahr wird in Deutschland bei durchschnittlich ca. 2200 Kinder und Jugendliche eine onkologische Erkrankung diagnostiziert. Bislang gibt es kaum Angebote einer ambulant-aufsuchenden Versorgung für diese Patientengruppe. Im Rahmen eines Pilotprojektes werden an Krebs erkrankte Kinder und Jugendliche von einem interdisziplinären Team im häuslichen Umfeld versorgt. Die Erfahrungen der Erziehungsberechtigten mit dem neuen Versorgungskonzept werden in einer qualitativ-explorativen Studie untersucht.Patienten In der Interviewstudie werden Erziehungsberechtigte von an Krebs erkrankten Kindern befragt.

Methode Qualitativ-explorative Interviewstudie zur Erfassung der subjektiven Erfahrungen der Erziehungsberechtigten. Die Stichprobenziehung erfolgte Kriterien geleitet. Die Analyse erfolgte qualitativ-inhaltsanalytisch. Zur Erfassung soziodemografischer Merkmale erhielten die Befragten einen Online-Fragebogen.

Ergebnisse Es nahmen elf Frauen und drei Männer im Alter zwischen 30 und 60 Jahren an der Studie teil. Das durchschnittliche Alter der erkrankten Kinder betrug 8,43 Jahre. Fünf Erziehungsberechtigte geben an, dass die Erkrankung des Kindes weder zu einer Reduktion der Arbeitszeit noch zur Beendigung des Arbeitsverhältnisses geführt hat. Durch die ambulant-aufsuchende Versorgung ergeben sich subjektiv wahrgenommene Entlastungen im Familienalltag, die insbesondere durch eine zeitliche Entlastung entstehen. Weiterhin wird eine Reduktion des psychischen Stressempfindens beschrieben.

Diskussion/Schlussfolgerung Die Ergebnisse sind aufgrund des Studiendesigns als richtungsweisend zu betrachten und sollten um quantitativ-repräsentative Studien ergänzt werden.

Abstract

Background About 2,200 children and adolescents in Germany per year are diagnosed with oncological diseases. Through now, there are almost no offers for home care services for these patients. There is a pilot program offering hospital-based home care for children and adolescents with cancer in Germany. The perspective of the parents will be researched by a qualitative exploring study. Patients: In this interview study parents from children with cancer will be interviewed.

Method A qualitative exploring interview study, seeking the subjective perspective from parents on the hospital-based home care for children with cancer. The sample was drawn criterion-guided. The interviews were transcribed verbatim and analysed using qualitative content analysis. For socio- demographic characteristics the participants respond to an online questionnaire.

Results Eleven women and three men aged between 30 and 60 years participated in the interviews. The average age of the ill children was 8.43 years. Five parents state that the children’s illness did not lead to a reduction in working hours or to the termination of the employment relationship. Hospital-based home care results in subjectively perceived relief in everyday family life, especially in terms of time. Furthermore, a reduction in the psychological perception of stress is described.

Discussion/conclusion Due to the study design, the results presented here are to be regarded as indicative. In future studies the presented results should be supplemented by quantitative representative studies.

Schlüsselwörter

Versorgungsforschung - häusliche Behandlung - pädiatrische Onkologie - qualitative Evaluation

Keywords

Health services research - home treatment - pediatric oncology - qualitative evaluation

Zusätzliches Material



Publication History

Article published online:
04 March 2024

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