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Archives de pédiatrie
Volume 21, n° 8
pages 834-844 (août 2014)
Doi : 10.1016/j.arcped.2014.05.012
Received : 29 October 2013 ;  accepted : 13 May 2014
Soins palliatifs pédiatriques : connaissances, expérience clinique et formation des internes de pédiatrie français. Résultats d’une enquête nationale
Pediatric palliative care: A national survey of French pediatric residents’ knowledge, education, and clinical experience
 

C. Lefeubvre a, , M.-L. Viallard b, c, M. Schell d
a Centre d’action médico-sociale de Versailles, hôpital Mignot, 177, rue de Versailles, 78150 Le Chesnay, France 
b Médecine palliative périnatale et pédiatrique, Necker-Enfants-Malades, AP–HP, 149, rue de Sèvres, 75015 Paris, France 
c EA 4569, laboratoire d’éthique médicale, université Paris Descartes, Sorbonne Paris Cité, 12, rue de l’École-de-Médecine, 75006 Paris, France 
d Institut d’hématologie et d’oncologie pédiatrique, ESPPéRA, 1, place Joseph-Renault, 69373 Lyon cedex 08, France 

Auteur correspondant.
Résumé
Contexte

Le besoin en formation des professionnels de santé en médecine palliative est important notamment en pédiatrie. Les connaissances, l’expérience clinique, la formation et les attentes des internes en pédiatrie dans le champ de la médecine palliative pédiatrique (MPPed) n’ont jamais été évaluées alors que l’organisation des études médicales est en mutation.

Matériel et méthodes

Ce travail présente une enquête nationale auprès des internes en pédiatrie, réalisée à l’aide d’un questionnaire informatisé, anonyme. Quatre domaines ont été abordés : données épidémiologiques, connaissances, expérience clinique et formation en MPPed.

Résultats

Le taux de réponse a été de 39 % (n =365/927). Un quart des internes n’avait pas entendu parler de la loi relative aux droits des patients et à la fin de vie et pour la majorité d’entre eux la MPPed ne concernait que la fin de vie. Au cours de leur internat, 87 % des participants avaient pris en charge au moins un enfant relevant d’une démarche palliative et 96 % au moins un enfant en fin de vie, dont 77 % dans la première année de leur internat. De plus, 76 % avaient déjà participé à une annonce de maladie grave ou de phase palliative et 45 % à un entretien avec des parents endeuillés. Seulement 60 % avaient reçu une formation en MPPed.

Conclusion

Alors que la réforme des études médicales est en cours, nous proposons que l’intégration d’une formation à l’éthique médicale et à la médecine palliative soit plus précoce et plus complète, pour répondre aux réalités cliniques et aux attentes des internes.

The full text of this article is available in PDF format.
Summary
Background

The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the organization of the medical curriculum in France is currently being revised.

Materials and methods

This study presents a national survey of pediatric residents, using a computerized anonymous questionnaire. Four different areas were studied: epidemiological data, theoretical and practical knowledge, education, and clinical experience in PPC.

Results

The response rate was 39% (n =365/927). Whatever their age or regional location, 25% of residents did not know any details of the French law concerning patients’ rights and the end of life. Experience with PPC starts very early since 77% of the first-year pediatric residents experienced at least one child in a palliative care and/or end-of-life situation. During their entire residency, 87% of the residents had experience with PPC and nearly all (96%) end-of-life care. Furthermore, 76% had participated in announcing palliative care (cancer, ICU, etc.) or a serious illness, and 45% had met and discussed with bereaved parents. Furthermore, while 97% of the pediatric residents received training in adult palliative care, mainly before their residency, only 60% received specific PPC training.

Discussion and conclusion

Ninety-six percent of all French pediatric residents encountered a PPC situation during their residency. That 77% of them had experienced PPC during their first year of residency shows the importance of early training in PPC for pediatric residents. Furthermore, this study points out that there is a significant lack in PPC training since 40% of all residents in the study received no specific PPC training. Progress in education remains insufficient in the dissemination of knowledge on the legal framework and concepts of palliative medicine: while the medical curriculum is being revised, we suggest that training in medical ethics and PPC should be introduced very early and systematically.

The full text of this article is available in PDF format.


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