prospective multicentric study protocol in french CF center, exploring adolescent avec parents needs during transition from pediatric CF center to adult CF center
Adolescent's and parent's needs will be studied, before the transition and their experiences of transition, in order to propose organizational national recommendations semi structured interview with adolescents and parents separately, before and after transition. semi structured interviews will be conducted twice for each (adolescent and parents), the first in the 6 months before transition and the second in the 6 months after transition. After their verbatims will be analyzed and the optimal organisation will be determined for the transition based according to their point of view. At the end, the data from this study will be matched with data collected in a former study from care givers practices during transition in the french CF centers.
Study Type
OBSERVATIONAL
Enrollment
50
Before and after transition, individual semi structured interviews will be recorded by one person in the same way in all CF center. And every interview will be transcribed by an other person
University Hospital, Clermont-Ferrand
Clermont-Ferrand, France
UniversityHospitalGrenoble
Grenoble, France
Hôpital Femme Mère Enfant, HCL
Lyon, France
South Hospital of Lyon, HCL
Pierre-Bénite, France
Identify CF adolescents and their parents needs before transition
Qualitative analysis of interviews
Time frame: During their systematic appointment at the CF center, patients will have one individual interview during the year before transition. Interviews will be analyzed after all interviews will have been performed.
Identify CF adolescents and their parents experience after transition
Qualitative analysis of interviews
Time frame: During their systematic appointment at the CF center, patients will have one individual interview during the year after transition. Interviews will be analyzed after all interviews will have been performed.
What do they need, to feel safe before transition
Identify patients and parents needs
Time frame: During their systematic appointment at the CF center, patients and parents will have one individual interview during the year before transition. Interviews will be analyzed after all interviews will have been performed
Do these needs of CFadolescent and their parents taken into account in the transition procedures
Do the procedures take into account the needs of patients and parents
Time frame: During their systematic appointment at the CF center, patients and parents will have one individual interview during the year after transition. Interviews will be analyzed after all interviews will have been performed
Which factors influence quality of transition other than TPE dimension.
Satisfaction level of Patients and Family After Transition
Time frame: Interviews will be analyzed after an average of one year after the last interviews will have been performed, both outcome will be matched
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Do the resources implemented by the CRCM teams during the adolescent-adult transition matched with adolescents and parents needs and expectations
Identifying key points of the patient's personalized transition, the timing and personalization of the health care course during the transition
Time frame: comparison between the results with health care practices one year after the last interview will be performed