Nursing Care Plan for Patients with Tay-Sachs-A Rare Paediatric Disease.
Delphi method
Tay–Sachs
clinical practice
healthcare
nursing care plan
rare disease
Journal
Journal of personalized medicine
ISSN: 2075-4426
Titre abrégé: J Pers Med
Pays: Switzerland
ID NLM: 101602269
Informations de publication
Date de publication:
01 Aug 2023
01 Aug 2023
Historique:
received:
28
06
2023
revised:
26
07
2023
accepted:
27
07
2023
medline:
25
8
2023
pubmed:
25
8
2023
entrez:
25
8
2023
Statut:
epublish
Résumé
Tay-Sachs disease is classified as a rare paediatric disease of metabolic origin. It is an autosomal recessive inherited disease. The gene responsible for the disease is known as HEXA, and it is located on chromosome 15(15q23). There is currently no effective treatment for Tay-Sachs disease; hence, it is an incurable disease in which patients do not live for more than five years, meaning that nursing care takes on greater importance to maintain quality of life. The main objective of this work is to develop a specific standard nursing care plan by applying an inductive research method supported by nursing methodology using the NANDA-NIC-NOC taxonomy and validated by the Delphi method. This care plan will improve the knowledge of health professionals on this topic and support future studies on the disease. Following its implementation, the care plan proposed in this study aims to increase the quality of life of patients diagnosed with this disease.
Identifiants
pubmed: 37623472
pii: jpm13081222
doi: 10.3390/jpm13081222
pmc: PMC10455330
pii:
doi:
Types de publication
Journal Article
Langues
eng
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