Development and co-construction of a therapeutic patient education program for albinism.

Adolescent Albinism Child Humans Parents Patient Education as Topic
Albinism Co-construction Therapeutic Patient Education

Journal

Annales de dermatologie et de venereologie
ISSN: 0151-9638
Titre abrégé: Ann Dermatol Venereol
Pays: France
ID NLM: 7702013

Informations de publication

Date de publication:
Dec 2021
Historique:
received: 13 09 2020
revised: 07 01 2021
accepted: 03 03 2021
pubmed: 5 7 2021
medline: 1 12 2021
entrez: 4 7 2021
Statut: ppublish

Résumé

Long-term and ongoing support in accordance with the changing needs of patients and their families is one of the main components of patient care, including therapeutic patient education (TPE). To co-construct a TPE program for albinism with all those involved in the management of albinism patients. Eight steps have been defined for the co-construction process: 1) identify all the relevant experts and invite them to participate in the construction of a TPE program to improve care for and support of patients with albinism, 2) review and analyse all publications regarding TPE for albinism, 3) conduct semi-structured interviews with the patients' parents, 4) conduct brainstorming meetings with the participating experts for an exchange of experience and expertise, 5) elaborate the program's concrete content with the experts, 6) draw up a TPE skills checklist, 7) create TPE educational tools to facilitate learning, 8) review and summarize each step of the co-construction protocol. Co-construction of a TPE program for children, adolescents, and young adults with albinism, and their parents. Strengths and advantages of the co-construction process include: i) highlighting of the experiential knowledge mentioned in the repository, ii) multiplicity of points of view and perspectives, iii) rapid improvement in TPE training both for the association and the patients, iv) awareness of the shift caregivers' position with regards to TPE and recognition of the polysemy of their discourse. The TPE program for albinism has been authorized since 2018.

Sections du résumé

BACKGROUND BACKGROUND
Long-term and ongoing support in accordance with the changing needs of patients and their families is one of the main components of patient care, including therapeutic patient education (TPE).
OBJECTIVE OBJECTIVE
To co-construct a TPE program for albinism with all those involved in the management of albinism patients.
METHODS METHODS
Eight steps have been defined for the co-construction process: 1) identify all the relevant experts and invite them to participate in the construction of a TPE program to improve care for and support of patients with albinism, 2) review and analyse all publications regarding TPE for albinism, 3) conduct semi-structured interviews with the patients' parents, 4) conduct brainstorming meetings with the participating experts for an exchange of experience and expertise, 5) elaborate the program's concrete content with the experts, 6) draw up a TPE skills checklist, 7) create TPE educational tools to facilitate learning, 8) review and summarize each step of the co-construction protocol.
RESULTS RESULTS
Co-construction of a TPE program for children, adolescents, and young adults with albinism, and their parents.
CONCLUSION CONCLUSIONS
Strengths and advantages of the co-construction process include: i) highlighting of the experiential knowledge mentioned in the repository, ii) multiplicity of points of view and perspectives, iii) rapid improvement in TPE training both for the association and the patients, iv) awareness of the shift caregivers' position with regards to TPE and recognition of the polysemy of their discourse. The TPE program for albinism has been authorized since 2018.

Identifiants

DOI: 10.1016/j.annder.2021.03.005 PMID: 34217528
pubmed: 34217528
pii: S0151-9638(21)00051-X
doi: 10.1016/j.annder.2021.03.005
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

246-250

Informations de copyright

Copyright © 2021. Published by Elsevier Masson SAS.

Auteurs

H Dufresne (H)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Pediatric Social Services, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

A de Longcamp (A)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

S Compain (S)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Cross-disciplinary Therapeutic Education Unit, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

F Morice-Picard (F)

Pediatric Dermatology Unit, National Center for Rare Skin Disorders, hôpital Pellegrin-Enfants, CHU de Bordeaux, 33000 Bordeaux, France.

E Deladrière (E)

Department of Physical Medicine, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

L Bekel (L)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

C Godot (C)

Cross-disciplinary Therapeutic Education Unit, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

M Rateaux (M)

Reference Center for Rare Ocular Diseases (OPHTARA) and Department of Ophthalmology, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France.

M Godeau (M)

French Association for Albinism (GENESPOIR), 3, rue de la Paix, 35000 Rennes, France.

B Jouanne (B)

French Association for Albinism (GENESPOIR), 3, rue de la Paix, 35000 Rennes, France.

C Bodemer (C)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Institut Imagine, 24, boulevard du Montparnasse, 75015 Paris, France; Université de Paris, 45, rue des Saints-Pères, 75006 Paris, France.

D Bremond-Gignac (D)

Reference Center for Rare Ocular Diseases (OPHTARA) and Department of Ophthalmology, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Institut Imagine, 24, boulevard du Montparnasse, 75015 Paris, France; Université de Paris, 45, rue des Saints-Pères, 75006 Paris, France.

M P Robert (MP)

Reference Center for Rare Ocular Diseases (OPHTARA) and Department of Ophthalmology, hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Institut Imagine, 24, boulevard du Montparnasse, 75015 Paris, France; Université de Paris, 45, rue des Saints-Pères, 75006 Paris, France.

S Hadj-Rabia (S)

Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) hôpital universitaire Necker-Enfants malades, AP-HP, 149, rue de Sèvres, 75015 Paris, France; Institut Imagine, 24, boulevard du Montparnasse, 75015 Paris, France; Université de Paris, 45, rue des Saints-Pères, 75006 Paris, France. Electronic address: smail.hadj@inserm.fr.

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Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adolescent › Development and co-construction of a...
questionsmedicales.fr › Maladies métaboliques et nutritionnelles › Maladies métaboliques › Erreurs innées du métabolisme › Aminoacidopathies congénitales › Albinisme › Development and co-construction of a...
questionsmedicales.fr › Personnes › Tranches d'âge › Enfant › Development and co-construction of a...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Development and co-construction of a...
questionsmedicales.fr › Personnes › Parents › Development and co-construction of a...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Services de santé › Services de médecine préventive › Éducation pour la santé › Éducation du patient comme sujet › Development and co-construction of a...