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Originalarbeit

Die Welt wird auf den Kopf gestellt: Wie Eltern von Kindern mit Spina Bifida die Transition erleben

Eine qualitative Studie

Published Online:April 11, 2024https://doi.org/10.1024/1012-5302/a000992

Abstract

Zusammenfassung:Hintergrund: Das Erwachsenwerden des Kindes mit Spina bifida (SB) erfordert die Transition von der kindzentrierten in die erwachsenenorientierte Gesundheitsversorgung. Der Transitionsprozess (TP) verlangt Anpassungen der elterlichen Rolle, wobei Gesundheitsfachpersonen in der Begleitung der Familien eine zentrale Rolle einnehmen. Unklar ist, wie die Eltern den TP in Zeiten komplexer Veränderungen erleben und welcher Unterstützungsbedarf sich daraus ergibt. Ziel: Die Erfahrungen von Eltern in verschiedenen Phasen des TP zu verstehen und daraus Unterstützungsmaßnahmen abzuleiten. Methode: In dieser qualitativen Studie wurden mittels halbstrukturierten, leitfadengestützten Interviews die Erfahrungen von Eltern mit Kind mit SB vor und während des TP sowie nach dem Transfer eruiert. Die Analyse der zehn Interviews erfolgte durch offene und axiale Kodierung in Anlehnung an die Grounded Theory nach Strauss & Corbin (1996). Ergebnisse: Der TP ist im Kontext der Gesundheit, der Schule und der Familie zu betrachten. Die Eltern erleben den TP als ein Kontinuum der Neuorientierung. Dieses ist von ambivalenten Gefühlen geprägt. So möchten die Eltern zwar Verantwortung abgeben, ihr Kind aber gleichzeitig weiterhin umfassend schützen. Schlussfolgerungen: Gesundheitsfachpersonen sollten das Ausmaß der Veränderung durch den TP und die ambivalenten Gefühle der Eltern anerkennen und sie im Umgang damit unterstützen. Kontinuierliche Begleitung, Koordination und Information durch Advanced Practice Fachpersonen stärken Eltern im TP und sind für deren Sicherheitsgefühl von zentraler Bedeutung.


The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study

Abstract:Background: The coming of age of a child with spina bifida (SB) requires the transition from child-centred to adult-centred health care. This transition process (TP) calls for adjustments to the parental role, while health professionals assume a central position in accompanying the families. It is unclear how parents experience the TP in times of complex change and what support needs arise in the process. Aim: To understand the experiences of parents at different stages of the TP and derive the resulting support needs. Method: The qualitative study used semi-structured, guided interviews to explore the experiences of parents with a child with spina bifida before and during the transition process as well as after the transfer. The ten interviews were analysed using open and axial coding based on grounded theory according to Strauss & Corbin (1996). Results: The TP must be considered in the context of health as well as school and family. Parents experience the TP on a continuum of reorientation. This is accompanied by ambivalent feelings caused by the conflicting impulses of giving up responsibility and protecting their child. Conclusions: Health professionals should recognize the extent of change associated with the TP as well as parents’ ambivalent feelings and support them accordingly. Continuous support, coordination and information by advanced professionals are important for parents’ sense of security.

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