Article (Périodiques scientifiques)
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
FRIEDEL, Marie; Brichard, Bénédicte; Boonen, Sabine et al.
2021In Journal of Palliative Medicine
Peer reviewed vérifié par ORBi
 

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Mots-clés :
children; pediatric palliative care; pilot test
Résumé :
[en] Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
Disciplines :
Pédiatrie
Auteur, co-auteur :
FRIEDEL, Marie  ;  University of Luxembourg > Faculty of Science, Technology and Medicine (FSTM) > Department of Life Sciences and Medicine (DLSM)
Brichard, Bénédicte;  Division of Pediatric Hematology/Oncology, Cliniques universitaires st Luc, Brussels, Belgium
Boonen, Sabine;  Interface pédiatrique, Cliniques universitaires st Luc, Brussels, Belgium
Tonon, Corinne;  Interface pédiatrique, Cliniques universitaires st Luc, Brussels, Belgium
De Terwangne, Brigitte;  Interface pédiatrique, Cliniques universitaires st Luc, Brussels, Belgium
Bellis, Dominique;  Haute Ecole Léonard de Vinci, Brussels, Belgium
Mevisse, Murielle;  Interface pédiatrique, Cliniques universitaires st Luc, Brussels, Belgium
Fonteyne, Christine;  Globul'home, Hôpital universitaire des Enfants Reine Fabiola, Brussels, Belgium
Jaspard, Maud;  Equipe liaison pédiatrique, Centre hospitalier chrétien, Clinique de l'Espérance, Liège, Belgium
Schruse, Marie;  Equipe liaison pédiatrique, Centre hospitalier chrétien, Clinique de l'Espérance, Liège, Belgium
Harding, Richard;  Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Kings College London, United Kingdom
Downing, Julia;  Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Kings College London, United Kingdom
Namisango, Eve;  Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Kings College London, United Kingdom
Degryse, Jean-Marie;  Institute of Health and Society, Université catholique de Louvain, Brussels, Belgium
Aujoulat ,  Isabelle;  Institute of Health and Society, Université catholique de Louvain, Brussels, Belgium
Plus d'auteurs (5 en +) Voir moins
Co-auteurs externes :
yes
Langue du document :
Anglais
Titre :
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
Date de publication/diffusion :
2021
Titre du périodique :
Journal of Palliative Medicine
ISSN :
1096-6218
eISSN :
1557-7740
Maison d'édition :
Mary Ann Liebert, Etats-Unis
Peer reviewed :
Peer reviewed vérifié par ORBi
Disponible sur ORBilu :
depuis le 08 février 2023

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