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
Full text not available from this repository. (Request a copy)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.
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