Articles producció científica> Infermeria

Beyond the clinical context: the process of losing oneself living with Huntington's disease

  • Dades identificatives

    Identificador: imarina:9262315
    Autors:
    Varela, Luz-EstellaArias, Maria-MercedesMartorell-Poveda, Maria-AntoniaGiraldo, Clara, VEstrada-Acuna, Rosa A.
    Resum:
    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.
  • Altres:

    Autor segons l'article: Varela, Luz-Estella; Arias, Maria-Mercedes; Martorell-Poveda, Maria-Antonia; Giraldo, Clara, V; Estrada-Acuna, Rosa A.;
    Departament: Infermeria
    Autor/s de la URV: Martorell Poveda, Maria Antonia
    Paraules clau: Physical dependence on another person Neurodegenerative condition Loss of sense of self Loss of autonomy Health Grounded theory
    Resum: 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.
    Àrees temàtiques: 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
    Accès a la llicència d'ús: https://creativecommons.org/licenses/by/3.0/es/
    Adreça de correu electrònic de l'autor: mariaantonia.martorell@urv.cat mariaantonia.martorell@urv.cat
    Identificador de l'autor: 0000-0002-0309-1812 0000-0002-0309-1812
    Data d'alta del registre: 2024-09-07
    Versió de l'article dipositat: info:eu-repo/semantics/publishedVersion
    Enllaç font original: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02330-9
    URL Document de llicència: https://repositori.urv.cat/ca/proteccio-de-dades/
    Referència a l'article segons font original: Orphanet Journal Of Rare Diseases. 17 (1):
    Referència 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 de l'article: 10.1186/s13023-022-02330-9
    Entitat: Universitat Rovira i Virgili
    Any de publicació de la revista: 2022
    Tipus de publicació: Journal Publications
  • Paraules clau:

    Genetics & Heredity,Genetics (Clinical),Medicine (Miscellaneous),Medicine, Research & Experimental,Pharmacology (Medical)
    Physical dependence on another person
    Neurodegenerative condition
    Loss of sense of self
    Loss of autonomy
    Health
    Grounded theory
    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
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