Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain–Portugal cross-border

Abstract

Background Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS–Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain–Portugal cross-border area. Method The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS–Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson’s correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach’s alpha. Results The domain structure of the FQOLS–ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). Conclusion The FQOLS–ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain–Portugal cross-border area.

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

“…The quantitative instrument was the Spanish version of Family Quality of Life Survey–Neurodegenerative Disease (FQOL-ND) [ 18 ], translated, adapted, and validated from the FQOLS–Dementia [ 15 ]. Part A includes questions about the family and the person with ND, which range from general socio-demographic issues to more specific ones, such as the supports needed by the family member with ND or the degree of independence in daily life activities.…”

“…Part B contains nine life domains (i.e., Family Health, Financial Well-being, Family Relationships, Support from Others, Support from Services, Influence of Values, Careers, Leisure and Recreation, and Community Interaction) to examine how the family perceives its FQoL. In the Spanish version, only the attainment and satisfaction dimensions for each of the domains have been considered and validated, because they are the two main outcome measures with the best psychometric results [ 13 , 17 , 18 , 27 ]. These dimension items collect quantitative data on a 5-point Likert scale, with higher scores indicating higher levels of attainment or satisfaction in the specific domain.…”

“…The final section consists of two close-ended questions about global impressions of FQoL. The internal consistency was strong for all domain subscales (from α = 0.80 to 0.91) and excellent for the total FQOL-ND scale (α = 0.85) and the Global FQOL-ND scale (α = 0.87) [ 18 ].…”

“…One of the most widely used scales is the Family Quality of Life Survey-2006 (FQOLS) Brown et al 2006 [ 17 ], which considers nine life domains in terms of importance, opportunities, attainment, initiative, stability, and satisfaction. This scale was initially constructed for families caring for a family member with an intellectual disability but has been adapted and validated for other populations, such as ND [ 13 , 18 , 19 ].…”

“…Therefore, the objective is to study FQoL in families with one or more members with ND by using a mixed-methods approach, i.e., contrasting the application of a specific quantitative instrument for this population with the qualitative assessments made by the families using the focus group methodology. Specifically, we intend to (1) confirm whether the FQoL domains, as evaluated with the Family Quality of Life Survey–Neurodegenerative Disease (FQOLS-ND) [ 18 ], can be replicated qualitatively; and (2) obtain a deeper understanding of the attainment and satisfaction dimensions of the FQOLS-ND by comparing the quantitative and qualitative data.…”