Publikationen
Die Welt wird auf den Kopf gestellt: Wie Eltern von Kindern mit Spina Bifida die Transition erleben
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
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.
Journal: Pflege - Die wissenschaftliche Zeitschrift für Pflegeberufe - hogrefe
DateEnglish: 11/04/20241Spina Bifida Zentrum, Universitätskinderspital Zürich, Schweiz.
2Careum Fachhochschule Gesundheit, Zürich, Schweiz.
Motor function outcomes in children with open prenatal repair of Spina Bifida Aperta at 36-month follow-up: The Zurich cohort
Purpose: This study aimed to describe outcomes of motor function with a special focus on ambulation ability at 36 months among children with open prenatal repair of spina bifida aperta (SB).
Methods: A prospective cohort study was conducted including 87 patients with open prenatal repair of SB at the investigating center born between 2010 and 2018. Anatomic lesion level and motor function level in the neonatal period, as well as motor function level, ambulation status, and use of orthotics and assistive devices at 36 months were assessed.
Results: At 36 months, ambulation was assessed in 86 children; of those, 86% (n = 74) were ambulating. Independent of ambulation, orthotics were worn in 81.6% (71/87) and assistive devices in 47.1% (41/87). Children with a lower lumbar or sacral motor function level were the first to reach independent ambulation and were more likely to ambulate at 36 months than children with higher motor function levels (p = < .001). The anatomic lesion level determined on the neonatal MRI correlated with ambulation status at 36 months (p = < 0.001).
Conclusion: At 36 months, most children with open prenatal repair for SB showed favourable ambulation status. However, most still used assistive devices or orthotics. Anatomic lesion level on neonatal MRI, motor function level during the neonatal period, and motor function level at 36 months were associated with ambulation status at 36 months.
Journal: Journal of Pediatric Rehabilitation Medicine
DateEnglish: 13/09/20231Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland.
2Department of Pediatric Neurology, Kantonsspital Baden, Baden, Switzerland.
3Department of Pediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.
4Zurich Center for Spina Bifida, University Children's Hospital Zurich, Zurich, Switzerland.
5The Zurich Center for Fetal Diagnosis and Therapy, Zurich, Switzerland.
6University of Zurich, Zurich, Switzerland.
7Division of Pediatric Rehabilitation, University Children's Hospital Zurich, Zurich, Switzerland.
Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration
The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, “young people”) with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. “Having fun”, “relation to family members”, and “physical functioning” were found to be highly important for all young people. “Physical functioning”, “prevention of pressure injuries”, “general health”, and “bowel management” received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples’ and caregivers’ perspectives should be included in the selection of research topics.
Journal: Children 2022
DateEnglish: 27/02/20221 Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
2 Department of Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Karolinska Institutet, Solnavägen 1, 171 77 Stockholm, Sweden
3 Department of Pediatrics, Division of Child Neurology, University Children’s Hospital Bern, University of Bern, Freiburgstrasse 15, 3010 Bern, Switzerland
4 American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, USA
5 Pediatric Rehabilitation, Center for Spina Bifida, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032 Zürich, Switzerland
6 Department of Pediatric Surgery, Children’s Hospital Bern, Freiburgstrasse 15, 3010 Bern, Switzerland
7 Department of Pediatric Surgery, Children's Hospital Lucerne, Spitalstrasse, 6000 Lucerne, Switzerland
8 National Spinal Injuries Centre and Stoke Mandeville Spinal Research, Buckinghamshire Healthcare NHS Trust, Aylesbury, Amersham HP7 0JD, UK
9 Department of Orthopaedics, The Royal Children’s Hospital, Melbourne 3052, Australia
10 Medical Faculty, University of Basel, 4001 Basel, Switzerland
11 Department of Paediatrics, The University of Melbourne, Melbourne 3010, Australia
12 Murdoch Children’s Research Institute, Melbourne 3052, Australia
* Author to whom correspondence should be addressed.
† Membership of the PEPSCI-Collaboration is provided in the Acknowledgments.
Early childhood neurodevelopmental outcome after open prenatal spina bifida aperta repair
To investigate neurodevelopmental outcome of children with open prenatal spina bifida aperta (SBA) repair.
Journal: Developmental Medicine & Child Neurology
DateEnglish: 02/12/20211 Division of Child Developmental Medicine, University Children's Hospital Zurich, Zurich, Switzerland.
2 Division of Pediatric Neurology, University Children's Hospital Zurich, Zurich, Switzerland.
3 Zurich Center for Spina Bifida, University Children's Hospital Zurich, Zurich, Switzerland.
4 Department of Pediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.
5 The Zurich Center for Fetal Diagnosis and Therapy, Zurich, Switzerland.
6 Division of Pediatric Rehabilitation, University Children's Hospital Zurich, Zurich, Switzerland.
7 Department of Pediatric Neurology, Kantonsspital Baden, Baden, Switzerland.
Systematic classification of maternal and fetal intervention-related complications following open fetal myelomeningocele repair - results from a large prospective cohort
To systematically categorise all maternal and fetal intervention-related complications after open fetal myelomeningocele (fMMC) repair of the first 124 cases operated at the Zurich Centre for Fetal Diagnosis and Therapy.
Journal: BJOG An International Journal of Obstetrics and Gynaecology - published online: November 30, 2020
DateEnglish: 01/06/20211 Division of Obstetrics, University Hospital of Zurich, Zurich, Switzerland.
2 The Zurich Centre for Fetal Diagnosis and Therapy, University of Zurich, Zurich, Switzerland.
3 Department of Paediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.
4 Spina Bifida Centre, University Children's Hospital Zurich, Zurich, Switzerland.
5 Children's Research Centre, University Children's Hospital Zurich, Zurich, Switzerland.
