2026-09-16T03:58:24Zhttps://gredos.usal.es/oai/request

oai:gredos.usal.es:10366/1636492025-02-14T01:00:58Zcom_10366_145469com_10366_4512com_10366_3823col_10366_145470

Aza Hernández, Alba Gómez Vela, María Badia Corbella, Marta Orgaz Baz, María Begoña González Ortega, Eva Vicario Molina, Isabel Montes López, Estrella 2025-02-13T08:21:44Z 2025-02-13T08:21:44Z 2022-05-07 Aza, A., Gómez-Vela, M., Badia, M., Begoña Orgaz, González-Ortega, E., Vicario-Molina, I., & Montes-López, E. (2022). Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches. Health and Quality of Life Outcomes, 20(76). https://doi.org/10.1186/S12955-022-01977-Z 1477-7525 http://hdl.handle.net/10366/163649 10.1186/s12955-022-01977-z [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. eng Springer Nature Attribution-NonCommercial-NoDerivatives 4.0 Internacional http://creativecommons.org/licenses/by-nc-nd/4.0/ info:eu-repo/semantics/openAccess Neurodegenerative diseases Family Quality of Life FQoLSND Focus groups 3207.11 Neuropatología Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion https://hqlo.biomedcentral.com/articles/10.1186/s12955-022-01977-z#rightslink (POCTEP) 2014–2020 Health and Quality of Life Outcomes 20 76