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Título
Family quality of life in neurodegenerative diseases and associated factors
Autor(es)
Materia
Neurodegenerative disease
Family quality of life
FQoLS-ND
Services
Fecha de publicación
2021-11-01
Editor
Cambridge University Press
Citación
González, E., Aza, A., Vicario-Molina, I., Gómez-Vela, M., Orgaz, M., & Badia, M. (2021). 416 - Family quality of life in Neurodegenerative Diseases and associated factors. International Psychogeriatrics, 33(S1), 39-39. doi:10.1017/S1041610221001757
Resumen
Introduction: Neurodegenerative diseases (NDs) are one of the major causes of dependency among
older people. Since family members assume most of the care, the impact of NDs goes beyond the patient
and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL)
is still insufficiently developed in this field: the literature has focused on family caregivers from an
individual perspective, paying less attention to the family unit. Hence, the objectives were
to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.
Method: The sample consisted of 300 family members of patients with NDs (70% females; mean age:
62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary
caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived
its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point
Likert scale). It also collected data on diverse respondents’ and family characteristics.
Results: The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for
satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from
services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and
the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were
found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived
barriers to social-health services was a significant predictor in all the explanatory models (the most
frequently cited being: long wait for service, services not available, problems with transportation, lack of
information, and financial costs).
Conclusions: These results confirm that NDs are especially challenging in rural areas, where families feel
more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to
design of a specific portfolio of services, resources and benefits that involves the key sectors of family
welfare (public, private, third sector and family) and brings them closer to these areas, covering all the
needs.
Descripción
Datos de investigación en: http://hdl.handle.net/10366/147031
URI
ISSN
1741-203X (Online)
DOI
10.1017/S1041610221001757
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