[How can the transition of adolescents from a children's to an adult CF center be improved? Analysis of adolescents' and parents' needs during the post-transfer period].

Comment améliorer la transition au sein des CRCM : analyse des besoins des patients et de leurs parents lors de l’arrivée en service adulte.
Besoins Cystic fibrosis Jeunes adultes Mucoviscidose Needs Parents Transition Young adults

Journal

Revue des maladies respiratoires
ISSN: 1776-2588
Titre abrégé: Rev Mal Respir
Pays: France
ID NLM: 8408032

Informations de publication

Date de publication:
Feb 2022
Historique:
received: 21 03 2020
accepted: 22 12 2021
pubmed: 16 2 2022
medline: 16 3 2022
entrez: 15 2 2022
Statut: ppublish

Résumé

In 2018, 55.4% of the 7180 French cystic fibrosis (CF) patients were adults. Our study was aimed at identifying young adult patients' needs and those of their parents when the young adults arrived in an adult CF center. Semi-structured interviews, conducted between July 2018 and December 2019and involving all the concerned teenagers and their parents, took place at least 6 months after their transfer. The interview guide dwelt on the aspects having had an impact on their experience of the transition. The interviews were recorded, transcribed and analyzed exhaustively. The results were classified by categorizing the contents according to respondent profile. Thirty-eight young adult patients and 16 parents were interviewed. As regards the young adults, analysis of their needs underlined the importance of their continuing to develop their skills in adaptation, communication and self-care. As regards their parents, they needed support in view of defining their role in their children's new care pathway. During and also following the transfer, therapeutic education for the parents as well as the young adults requires reinforcement.

Identifiants

pubmed: 35165013
pii: S0761-8425(22)00027-4
doi: 10.1016/j.rmr.2022.01.006
pii:
doi:

Types de publication

Journal Article

Langues

fre

Sous-ensembles de citation

IM

Pagination

132-139

Informations de copyright

Copyright © 2022 SPLF. Published by Elsevier Masson SAS. All rights reserved.

Auteurs

V Vion Genovese (V)

Centre de ressource et de compétence de la mucoviscidose, unité transversale en éducation thérapeutique du patient, CHU Grenoble-Alpes, 38043 Grenoble cedex, France. Electronic address: vvion@chu-grenoble.fr.

M Perceval (M)

Muco-CFTR, 69310 Pierre-Bénite, France.

A Gauchet (A)

Réseau EMERAA (Ensemble pour la Mucoviscidose en Rhône Alpes Auvergne), 69008 Lyon, France.

L Buscarlet-Jardine (L)

Université Grenoble-Alpes ThEMAS TIMC-IMAG (UMR CNRS 5525), 38400 Saint-Martin-d'Hères, France.

N Pinsault (N)

LIP/PC2S, université Grenoble-Alpes, 38400 Saint-Martin-d'Hères, France.

B Allenet (B)

Unité transversale en éducation thérapeutique du patient, université Grenoble-Alpes ThEMAS TIMC-IMAG (UMR CNRS 5525), pôle pharmacie, CS 10217, 38043 Grenoble cedex, France.

C Llerena (C)

CRCM pédiatrie, UTEP, CHU Grenoble-Alpes, CS 10217, 38043 Grenoble cedex, France; Groupe d'éducation thérapeutique en mucoviscidose (GETHEM), filière Muco-CFTR, France.

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Classifications MeSH