Diagnostic des maladies rares: la participation des parents-aidants dans un contexte de prise en charge complexe

Anaïs Cheneau, Aurore Pélissier (), Clémence Bussière and Marc Fourdrignier
Additional contact information
Anaïs Cheneau: LEDi - Laboratoire d'Economie de Dijon [Dijon] - UB - Université de Bourgogne - UBFC - Université Bourgogne Franche-Comté [COMUE]
Aurore Pélissier: LEDi - Laboratoire d'Economie de Dijon [Dijon] - UB - Université de Bourgogne - UBFC - Université Bourgogne Franche-Comté [COMUE]
Clémence Bussière: ERUDITE - Equipe de Recherche sur l’Utilisation des Données Individuelles en lien avec la Théorie Economique - UPEC UP12 - Université Paris-Est Créteil Val-de-Marne - Paris 12 - Université Gustave Eiffel
Marc Fourdrignier: CEREP - Centre d'Etude et de Recherche sur les Emplois et la Professionnalisation - EA 4692 - URCA - Université de Reims Champagne-Ardenne - MSH-URCA - Maison des Sciences Humaines de Champagne-Ardenne - URCA - Université de Reims Champagne-Ardenne

Post-Print from HAL

Abstract: This article focuses on parental involvement in the diagnostic pathway for children concerned by a rare disease. The diagnostic process is particularly long and complex in these cases. It can lead to inadequate or delayed care of the child, psychological and psychic suffering for the parents and additional costs for the health system. Interviews with eighteen parents of children with or suspected of having rare diseases reveal the diversity of forms of parental involvement in the diagnostic process. These are not always in line with the parents' preferences: from involuntary non-integration, where the parents are not listened to and are excluded from the diagnostic research, to involuntary pro-active participation, where the parents' participation compensates for the health system's shortcomings in the diagnostic research. Greater recognition of parents' experiential and lay knowledge by professionals, easier access to information and support for parents' empowerment, as well as better organization and structuring of rare disease care (with more rapid referrals, better city-hospital coordination and multidisciplinary and comprehensive care) would help support their participation and could ultimately reduce diagnostic errancy and the particularly difficult experience of parents in this process. These levers of action are necessary in order to avoid reinforcing social inequalities in health between families who are able to mobilize different types of capital (human, social, financial) to compensate for the failures of the health system and those who are not.

Keywords: Parent-caregiver; Rare diseases; Diagnostic course; Social inequalities in health; Physician-patient relationship; Qualitative research; Physicianpatient relationship; qualitative research I10; I14; I18; I38; J14; Parent-aidant; Maladies rares; Parcours diagnostique; Inégalités sociales de santé; Relation médecin-patient; Recherche qualitative; Parent-caregiver Rare diseases Diagnostic course Social inequalities in health Physicianpatient relationship qualitative research I10 I14 I18 I38 J14 (search for similar items in EconPapers)
Date: 2023
Note: View the original document on HAL open archive server: https://ube.hal.science/hal-04586202v1
References: Add references at CitEc
Citations:

Published in Economie appliquée, 2023, 1 (5), pp.97-122. ⟨10.48611/isbn.978-2-406-16499-9.p.0097⟩

Downloads: (external link)
https://ube.hal.science/hal-04586202v1/document (application/pdf)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:hal:journl:hal-04586202

DOI: 10.48611/isbn.978-2-406-16499-9.p.0097

Access Statistics for this paper

More papers in Post-Print from HAL
Bibliographic data for series maintained by CCSD ().