Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic
Yannick Le Hénaff
(1)
,
Stéphane Héas
(2, 3)
Yannick Le Hénaff
- Fonction : Auteur
- PersonId : 177034
- IdHAL : yannick-le-henaff
- IdRef : 114175691
Stéphane Héas
- Fonction : Auteur
- PersonId : 180719
- IdHAL : stephane-heas
- ORCID : 0000-0002-4817-1429
- IdRef : 060233680
Résumé
This qualitative study conducted in France of “individuals living with a pemphigus” (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor’s condescension may push the patient toward a process of renunciation. This article relates the ILPs’ critiques of the medical work conducted during the trying diagnostic period.
Format du dépôt | Notice |
---|---|
Type de dépôt | Article dans une revue |
Titre |
en
Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic
|
Résumé |
en
This qualitative study conducted in France of “individuals living with a pemphigus” (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor’s condescension may push the patient toward a process of renunciation. This article relates the ILPs’ critiques of the medical work conducted during the trying diagnostic period.
|
Auteur(s) |
Yannick Le Hénaff
1
, Stéphane Héas
2, 3
1
DySoLab -
Laboratoire des Dynamiques Sociales
( 521960 )
- Place Émile Blondel 76130 Mont-Saint-Aignan
- France
2
LAS -
Laboratoire d'anthropologie et de sociologie. UHB
( 2300 )
- UFR Sciences Humaines. 3, allée Adolphe Bobierre. 35043 RENNES CEDEX
- France
3
VIPS2 -
Valeurs Innovations Politiques Socialisations & Sports
( 489710 )
- Université Rennes 2 - Campus La Harpe - Avenue Charles Tillon - CS 24414 - 35044 Rennes cedex
- France
|
Nom de la revue |
|
Langue du document |
Anglais
|
Date de publication |
2018-10-08
|
Page/Identifiant |
104973231880359
|
Commentaire |
Nous remercions l'ensemble des enquêtés ayant participé à cette recherche, l'Association Pemphigus Pemphigoïde France pour nous avoir ouvert leurs portes. Nous remercions également les centres de références sur les maladies bulleuses de Rouen (dirigé par Pascal Joly, qui a notamment permis l'accès à une partie du terrain via l'obtention du CPP) et d'Avicenne, ainsi que les services de dermatologie de Bordeaux, Clermont-Ferrand, Marseille, Lille, Reims et Quimper
|
Audience |
Internationale
|
Comité de lecture |
Oui
|
Vulgarisation |
Non
|
Financement |
|
Domaine(s) |
|
DOI | 10.1177/1049732318803590 |
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