Login
Communauté Vinci
Extérieur
Si votre nom d'utilisateur ne se termine pas par @vinci.be ou @student.vinci.be, utilisez le formulaire ci-dessous pour accéder à votre compte de lecteur.
Titre : | Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy (2018) |
Auteurs : | Diane V. Murell ; Claire A. Crawford ; Chanti T. Jackson ; Thimothy Lotze ; Constance M. Wiemann |
Type de document : | Article |
Dans : | Journal of Pediatric Nursing (Vol. 43, November/December 2018) |
Article en page(s) : | p. 111-119 |
Note générale : | doi : 10.1016/j.pedn.2018.09.007 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Amyotrophie spinale ; Coordination ; Famille ; Parents ; Pédiatrie ; Valeur |
Résumé : |
The features of ideal medical care described by families of children with Type 1 SMA are consistent with tenets of FCC.
A care coordinator liaises between families and medical teams to represent the family values and decisions. Families of children with Type 1 SMA are experts on their child and should be included as partners in the care team. Families of children with Type 1 SMA want education about the disease trajectory and time to make treatment choices. The cultural context of family constellation, language, employment and support systems impacts decision making. |
Disponible en ligne : | Non |
Exemplaires (1)
Cote | Support | Localisation | Section | Disponibilité |
---|---|---|---|---|
REV | Périodique papier | Woluwe | Espace revues | Consultation sur place uniquement Exclu du prêt |