[Transition - how adolescents with cystic fibrosis their parents experience the change from paediatric to adult care].

Becher, Christine; Regamey, Nicolas; Spichiger, Elisabeth (2014). [Transition - how adolescents with cystic fibrosis their parents experience the change from paediatric to adult care]. Pflege - die wissenschaftliche Zeitschrift für Pflegeberufe, 27(6), pp. 359-368. H. Huber 10.1024/1012-5302/a000389

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BACKGROUND Cystic Fibrosis is the most common autosomal-recessive hereditary disease among white Europeans. The average survival of CF patients has increased to above 40 years and transition from paediatric to adult care has therefore become a significant issue. AIM With this study, experiences of adolescents with CF and their parents with the transition from the paediatric to the adult care were explored. METHODS At a Swiss university CF centre, six adolescents and their mothers were recruited. Twelve narrative interviews were conducted on how the phase of transition was experienced. The transcribed interviews were analysed according to the method of hermeneutic phenomenology. RESULTS Positive and negative experiences with long term routine care in the paediatric service, general themes of adolescence and the quality of the relationship with paediatric doctors influenced the families' experience during transition significantly. For mothers, insensitive information on the CF diagnosis might have influenced the transition experience. The adolescents welcomed an individualized and age appropriate care. Continuity in care, the announcement of, and involvement in the planning of the transfer were of great importance. The families particularly appreciated the timed adaptations of the transfer to individual needs. CONCLUSIONS Flexibility and a strong collaboration between paediatric and adult CF teams are most relevant in the care of families.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of General Internal Medicine (DAIM) > Clinic of General Internal Medicine > Medical Department Anna Seiler-House
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > Unit Childrens Hospital > Forschungsgruppe Pneumologie (Pädiatrie)
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine

UniBE Contributor:

Regamey, Nicolas and Spichiger, Elisabeth

Subjects:

600 Technology > 610 Medicine & health

ISSN:

1012-5302

Publisher:

H. Huber

Language:

German

Submitter:

André Schaller

Date Deposited:

13 Apr 2015 15:40

Last Modified:

29 Oct 2015 10:15

Publisher DOI:

10.1024/1012-5302/a000389

PubMed ID:

25416483

Uncontrolled Keywords:

Adoleszente; Cystic Fibrosis; Cystische Fibrose; Eltern; Transition; adolescent; parents; qualitative Forschung; qualitative research; transition to adult care

URI:

https://boris.unibe.ch/id/eprint/66605

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