Psychosoziale Begleitung von Kindern und Jugendlichen mit malignen Erkrankungen

Schreiber-Gollwitzer, B.M.; Schröder, Hinrich; Niethammer, D.

doi:10.1007/s00112-002-0514-z

Cited by 17 publications

(5 citation statements)

References 21 publications

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“…Especially in somatic medicine, experts described that the pathway to psychosocial care often depends on the diagnosis and that the referral does not proceed equally well in all clinical areas. For example, psychosocial care in pediatric oncology is a standardized procedure [ 29 ], and for the experts, a successful example of the integration of psychosocial care into routine care. These descriptions show how important it is to strengthen psychosocial care so that it is not diagnosis-oriented but needs-oriented for the pediatric patients and their families.…”

Section: Discussionmentioning

confidence: 99%

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Witt

Kristensen

Wiegand-Grefe

et al. 2021

Orphanet J Rare Dis

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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.

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Section: Discussionmentioning

confidence: 99%

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Witt

Kristensen

Wiegand-Grefe

et al. 2021

Orphanet J Rare Dis

View full text Add to dashboard Cite

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“…Neben der räumlichen und apparativen Ausstattung sind für jeden Versorgungsbereich auch konkrete Anforderungen für die vorzuhaltenden Personalressourcen und die Qualifikation des eingesetzten Personals definiert. [4,12]. Die zentrale Organisa tion des psychosozialen Angebotes im Psychosozialen Dienst ist ein Alleinstellungsmerkmal der Kinderonkologie und orientiert sich an den Vorgaben der S3-Leitlinie zur psychosozialen Versorgung in der Pädiatrischen Onkologie und Hämatologie [10].…”

Section: Methodikunclassified

DKG-Zertifizierung für Kinderonkologische Zentren

et al. 2018

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The new certification module will continue to foster the development of interdisciplinary networks and a centralised commitment to high quality of care in paediatric oncology. The new module was initiated in a joint venture of the German Society of Paediatric Oncology and Haematology (GPOH) and the German Cancer Society (DKG) in 2016. The comprehensive Catalogue of Requirements is based on the directive for paediatric oncology by the Federal Joint Committee (G-BA) and has been successfully implemented into clinical practice in a pilot phase with 7 Paediatric Cancer Centres. Interested centres can register for certification as of now.

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“…This study has three aims: (1) to examine the level of quality of life of survivors from self-report perspective, and to compare with their classmates'; (2) to test the effects of the individual features (type of cancer, finished treatment time-1, 2, and 5 years, fear of cancer recurrence, teasing experiences); (3) to examine the differences in their academic success, learning strategies, and learning motivations. It was hypothesized that the HRQL scores of survivors would be lower than those of healthy classmates; the type of cancer would have an impact on HRQL (children who have survived a brain tumor would have lower academic and school function); the fear of cancer recurrence and teasing experience would have negative effect of the level of HRQL.…”

Section: Purpose Of Studymentioning

confidence: 99%

“…Over the last decades, the number of cancer survivors among children has increased to a large degree (70-85%) [1]. Treatment is efficient; however, medical conditions affect the child's physical, psychosocial, and academic functioning [2]. Returning to school may bring hope to the whole family that the child could live a regular life again.…”

Section: Introductionmentioning

confidence: 99%

Comparison of Quality of Life and Learning Success of Adolescents Surviving Cancer and Their Classmates

2019

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The aim of this study was to compare the quality of life and school success of adolescent survivors and their classmates. A survey was conducted among 21 cancer survived 12-18-year-old children and 95 of their classmates by using questionnaires covering (a) characteristics of the quality of life; (b) characteristics of the learning process; and (c) level of the fear of cancer recurrence. Significant difference was found in the field of physical and emotional functions but contrary to expected, the members of the control group reported lower values than survivor children. Those children that were teased because of cancer made friends hardly and got involved in social programs with more difficulty. With reference to the level of development of school motivation and the use of learning strategies, it was experienced a significant difference between the two groups only in the field of planning. Our results show that the better the survived children's general quality of life is the better results they achieve at school. Their learning achievement is influenced to a much bigger extent by social functions than their physical disadvantages.

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Psychosoziale Begleitung von Kindern und Jugendlichen mit malignen Erkrankungen

Cited by 17 publications

References 21 publications

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

DKG-Zertifizierung für Kinderonkologische Zentren

Comparison of Quality of Life and Learning Success of Adolescents Surviving Cancer and Their Classmates

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