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dc.contributor.author
Alonso, Juan Pedro
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dc.contributor.author
Ini, Natalí
dc.contributor.author
Villarejo, Agustina
dc.contributor.author
Belizán, María
dc.contributor.author
Roberti, Javier Eugenio
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dc.date.available
2024-08-15T10:53:18Z
dc.date.issued
2024-07
dc.identifier.citation
Alonso, Juan Pedro; Ini, Natalí; Villarejo, Agustina; Belizán, María; Roberti, Javier Eugenio; Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives; Taylor & Francis Ltd; Disability And Rehabilitation; 7-2024; 1-8
dc.identifier.issn
0963-8288
dc.identifier.uri
http://hdl.handle.net/11336/242536
dc.description.abstract
Purpose: To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina.Methods: Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach.Results: The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges.Conclusion: The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.
dc.format
application/pdf
dc.language.iso
eng
dc.publisher
Taylor & Francis Ltd
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dc.rights
info:eu-repo/semantics/restrictedAccess
dc.rights.uri
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
dc.subject
ALS
dc.subject
Argentina
dc.subject
Burden of treatment
dc.subject
Caregiver
dc.subject.classification
Tópicos Sociales
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dc.subject.classification
Sociología
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dc.subject.classification
CIENCIAS SOCIALES
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dc.title
Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives
dc.type
info:eu-repo/semantics/article
dc.type
info:ar-repo/semantics/artículo
dc.type
info:eu-repo/semantics/publishedVersion
dc.date.updated
2024-08-13T12:26:46Z
dc.journal.pagination
1-8
dc.journal.pais
Reino Unido
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dc.journal.ciudad
Londres
dc.description.fil
Fil: Alonso, Juan Pedro. Instituto de Efectividad Clínica y Sanitaria; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones "Gino Germani"; Argentina
dc.description.fil
Fil: Ini, Natalí. Instituto de Efectividad Clínica y Sanitaria; Argentina
dc.description.fil
Fil: Villarejo, Agustina. Instituto de Efectividad Clínica y Sanitaria; Argentina
dc.description.fil
Fil: Belizán, María. Instituto de Efectividad Clínica y Sanitaria; Argentina
dc.description.fil
Fil: Roberti, Javier Eugenio. Instituto de Efectividad Clínica y Sanitaria; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
dc.journal.title
Disability And Rehabilitation
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dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/url/https://www.tandfonline.com/doi/full/10.1080/09638288.2024.2385732
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/doi/http://dx.doi.org/10.1080/09638288.2024.2385732
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