Autor según el artículo: Varela, Luz-Estella; Arias, Maria-Mercedes; Martorell-Poveda, Maria-Antonia; Giraldo, Clara, V; Estrada-Acuna, Rosa A.;
Departamento: Infermeria
Autor/es de la URV: Martorell Poveda, Maria Antonia
Palabras clave: Physical dependence on another person Neurodegenerative condition Loss of sense of self Loss of autonomy Health Grounded theory
Resumen: Background People with Huntington's disease (HD) have increased functional and cognitive dependence. While numerous clinical, genetic, and therapeutic management studies have been carried out, few studies have investigated the disease from the personal experience and the context of people living with HD. To better serve these patients, our purpose is to understand, from the perspective of the patient and their families, how people with HD cope with their daily lives outside the clinical setting. Methods Thirty-three affected or at-risk people participated in this study. Participants were interviewed at their homes on distinct occasions during a family visit. We analyzed the data using Grounded Theory, which allowed us to understand how people live with the disease on their own terms. Results Living with HD is a process that begins with acceptance or denial that one is at risk for the disease or, growing awareness of the condition due to motor, behavioral, and cognitive changes, and, finally, loss of autonomy with physical dependence on another person, and loss of sense of self and family. Conclusion While the daily life of patients before disease onset was characterized by physical and mental/cognitive independence, with HD they become increasingly trapped in their bodies, and their complications are due to the lack of effective curable therapy.
Áreas temáticas: Saúde coletiva Pharmacology (medical) Odontología Medicine, research & experimental Medicine (miscellaneous) Medicina iii Medicina ii Medicina i Genetics (clinical) Genetics & heredity General medicine Farmacia Engenharias iv Ciências biológicas ii Ciências biológicas i
Acceso a la licencia de uso: https://creativecommons.org/licenses/by/3.0/es/
Direcció de correo del autor: mariaantonia.martorell@urv.cat mariaantonia.martorell@urv.cat
Identificador del autor: 0000-0002-0309-1812 0000-0002-0309-1812
Fecha de alta del registro: 2023-07-09
Versión del articulo depositado: info:eu-repo/semantics/publishedVersion
Enlace a la fuente original: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02330-9
URL Documento de licencia: http://repositori.urv.cat/ca/proteccio-de-dades/
Referencia al articulo segun fuente origial: Orphanet Journal Of Rare Diseases. 17 (1):
Referencia de l'ítem segons les normes APA: Varela, Luz-Estella; Arias, Maria-Mercedes; Martorell-Poveda, Maria-Antonia; Giraldo, Clara, V; Estrada-Acuna, Rosa A.; (2022). Beyond the clinical context: the process of losing oneself living with Huntington's disease. Orphanet Journal Of Rare Diseases, 17(1), -. DOI: 10.1186/s13023-022-02330-9
DOI del artículo: 10.1186/s13023-022-02330-9
Entidad: Universitat Rovira i Virgili
Año de publicación de la revista: 2022
Tipo de publicación: Journal Publications
Repositori URV