Domains and dimensions of Family Quality of Life among families with a member with neurodegenerative diseases

Abstract

[EN]Background Family quality of life (FQoL) is a recent construct to be applied in neurodegenerative diseases (NDs). In this context, there is interest in advancing in the measurement of the FQOL as a first step to determine the supports that families need to perceive quality of life. The aim of this study was to test the validity of the Family Quality of Life Survey- Dementia (DiZazzo-Miller & Samuel, 2011) in order to assess FQoL among family members of individuals with NDs who live in the cross-border area of Spain-Portugal. Method Three hundred family members of people with NDs completed the FQoLS-NDs Survey (Badia et al., 2020). The mean age was 62.4 years (SD = 13.34). Most were males (70%), married (79.7%), not working (64.7%), with low income (66.1%), and had elementary/high studies (73.1%). The majority were the spouse/partner (40.9%) or son/daughter (51.7%) of the care-recipient and played the role of primary caregiver (93.3%). Sixty percent of care-recipients were females (M= 79.3 years; SD= 11.7). Sixty two percent presented dementia, 30.4 % Parkinson´s disease, and 7.6% multiple sclerosis. Construct validity was tested by correlation analysis to examine associations between domain level outcomes (i.e., health, financial well-being, family relationships, support from others, support from services, influence of values, careers, leisure and recreation, and community integration) and global FQoL. Likewise, t-tests were used to compare the outcome measures (attainment and satisfaction) within each of the nine family domains. Result Global attainment and satisfaction with FQOL-NDs was found to be significantly correlated with composite attainment and satisfaction from nine domains (r=.489, p<.001 and r=.536, p<.001, respectively). Attainment and satisfaction were positively correlated within the nine domains (ranging from r=.83 to r=-.69, p<.001). There was a significant difference between domain-level attainment and satisfaction ratings [t(299)=12.28, p<.001, h2=.34]: the mean level of satisfaction experienced (M=3.71, SD=0.49) was significantly higher than that of attainment (M=3.52, SD=0.49). Conclusion This study demonstrates that FQOL-NDs has good validity properties and it is a useful tool to establish FQOL profiles for family caregivers of people with NDs.