Adolescent Behavior, Cystic Fibrosis
Conditions
Keywords
transition, care program, needs
Brief summary
prospective multicentric study protocol in french CF center, exploring adolescent avec parents needs during transition from pediatric CF center to adult CF center
Detailed description
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.
Interventions
OTHERsemi structured interviews for all adolescents and their parent
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
Sponsors
University Hospital, Grenoble
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
17 Years to 23 Years
Healthy volunteers
Yes
Inclusion criteria
* CF adolescent and their parents , for whom the transition to the adult center is scheduled within six months and witch have freely agreed to participate in the interviews
Exclusion criteria
* none
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Identify CF adolescents and their parents needs before transition | 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. | Qualitative analysis of interviews |
| Identify CF adolescents and their parents experience after transition | 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. | Qualitative analysis of interviews |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| What do they need, to feel safe before transition | 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 | Identify patients and parents needs |
| Do these needs of CFadolescent and their parents taken into account in the transition procedures | 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 | Do the procedures take into account the needs of patients and parents |
| Which factors influence quality of transition other than TPE dimension. | Interviews will be analyzed after an average of one year after the last interviews will have been performed, both outcome will be matched | Satisfaction level of Patients and Family After Transition |
| Do the resources implemented by the CRCM teams during the adolescent-adult transition matched with adolescents and parents needs and expectations | comparison between the results with health care practices one year after the last interview will be performed | Identifying key points of the patient's personalized transition, the timing and personalization of the health care course during the transition |
Countries
France
Outcome results
None listed