Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches

[EN] Background: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using...

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Autores: Aza Hernández, Alba, Gómez Vela, María, Badia Corbella, Marta, Orgaz Baz, María Begoña, González Ortega, Eva, Vicario Molina, Isabel, Montes López, Estrella
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2022
País:España
Institución:Universidad de Salamanca (USAL)
Repositorio:GREDOS. Repositorio Institucional de la Universidad de Salamanca
OAI Identifier:oai:gredos.usal.es:10366/163649
Acceso en línea:http://hdl.handle.net/10366/163649
Access Level:acceso abierto
Palabra clave:Neurodegenerative diseases
Family Quality of Life
FQoLSND
Focus groups
3207.11 Neuropatología
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spelling Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approachesAza Hernández, AlbaGómez Vela, MaríaBadia Corbella, MartaOrgaz Baz, María BegoñaGonzález Ortega, EvaVicario Molina, IsabelMontes López, EstrellaNeurodegenerative diseasesFamily Quality of LifeFQoLSNDFocus groups3207.11 Neuropatología[EN] Background: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. Methods: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. Results: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. Conclusions: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.This study was funde by the Project “NEUROQUALYFAM, Neurodegenerative Diseases and Familay Quality of Life”, funded by the Fondo Europeo de Desarrollo Regional (FEDER) through the program INTERREG V-A España – Portugal (POCTEP) 2014–2020.Springer Nature202520252022info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://hdl.handle.net/10366/163649reponame:GREDOS. Repositorio Institucional de la Universidad de Salamancainstname:Universidad de Salamanca (USAL)Inglés(POCTEP) 2014–2020Attribution-NonCommercial-NoDerivatives 4.0 Internacionalhttp://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessoai:gredos.usal.es:10366/1636492026-06-07T06:28:51Z
dc.title.none.fl_str_mv Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
title Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
spellingShingle Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
Aza Hernández, Alba
Neurodegenerative diseases
Family Quality of Life
FQoLSND
Focus groups
3207.11 Neuropatología
title_short Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
title_full Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
title_fullStr Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
title_full_unstemmed Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
title_sort Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches
dc.creator.none.fl_str_mv Aza Hernández, Alba
Gómez Vela, María
Badia Corbella, Marta
Orgaz Baz, María Begoña
González Ortega, Eva
Vicario Molina, Isabel
Montes López, Estrella
author Aza Hernández, Alba
author_facet Aza Hernández, Alba
Gómez Vela, María
Badia Corbella, Marta
Orgaz Baz, María Begoña
González Ortega, Eva
Vicario Molina, Isabel
Montes López, Estrella
author_role author
author2 Gómez Vela, María
Badia Corbella, Marta
Orgaz Baz, María Begoña
González Ortega, Eva
Vicario Molina, Isabel
Montes López, Estrella
author2_role author
author
author
author
author
author
dc.subject.none.fl_str_mv Neurodegenerative diseases
Family Quality of Life
FQoLSND
Focus groups
3207.11 Neuropatología
topic Neurodegenerative diseases
Family Quality of Life
FQoLSND
Focus groups
3207.11 Neuropatología
description [EN] Background: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. Methods: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. Results: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. Conclusions: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.
publishDate 2022
dc.date.none.fl_str_mv 2022
2025
2025
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/10366/163649
url http://hdl.handle.net/10366/163649
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv (POCTEP) 2014–2020
dc.rights.none.fl_str_mv Attribution-NonCommercial-NoDerivatives 4.0 Internacional
http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Attribution-NonCommercial-NoDerivatives 4.0 Internacional
http://creativecommons.org/licenses/by-nc-nd/4.0/
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv Springer Nature
publisher.none.fl_str_mv Springer Nature
dc.source.none.fl_str_mv reponame:GREDOS. Repositorio Institucional de la Universidad de Salamanca
instname:Universidad de Salamanca (USAL)
instname_str Universidad de Salamanca (USAL)
reponame_str GREDOS. Repositorio Institucional de la Universidad de Salamanca
collection GREDOS. Repositorio Institucional de la Universidad de Salamanca
repository.name.fl_str_mv
repository.mail.fl_str_mv
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