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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

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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.
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
https://doi.org/10.1186/s12955-021-01809-6
RESEARCH
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
Marta Badia1* , M. Begoña Orgaz1 , Isabel Vicario‑Molina2 , Eva González‑Ortega2, María Gómez‑Vela1 ,
Alba Aza1 and M. Antonia Martín‑Delgado3
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 consist‑
ency 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.
Keywords: Family quality of life, Neurodegenerative diseases, FQOLS-ND, Cross‑cultural adaptation, Psychometric
properties
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Background
Neurodegenerative diseases (NDs) are one of the prin-
cipal causes of disability and dependence worldwide,
which have a major impact both on the health and psy-
chological and social well-being of the people who suffer
Open Access
*Correspondence: badia@usal.es
1 Institute on Community Integration (INICO), Faculty of Psychology,
University of Salamanca, Avda. de la Merced, 109‑131, 37005 Salamanca,
Spain
Full list of author information is available at the end of the article
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Page 2 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
from them and their families [1]. e prevalence of NDs
in Spain reaches 2.08% of the population, representing a
total of 988,000 affected people [2]. Twenty-two percent
of these people with NDs live in rural areas [2], regions
characterized by a strong aging process and depopula-
tion [3]. e prevalence of NDs in the rural cross-border
Spain–Portugal population of the province of Salamanca
(Castile and Leon, Spain) is 2.51%, slightly higher than in
the Spanish population (2.08%) [4].
e caregiver family plays a crucial role in supporting
the well-being of the person with ND, allowing them to
live at home for as long as possible [3, 4]. erefore, the
family is one of the main providers of support services
for the person with ND, often producing a high economic
and social cost for the family unit [5]. In Spain, families
assume most of the expenditure (87% of the total) of the
needs of people with ND and dedicate an average of 70h
per week to caring for their relative [6].
Most of the studies have focused on the primary car-
egiver, finding burden care symptoms such as stress, anx-
iety, and depression [58]. However, little is known about
how the person with ND affects the family as a whole
[912].
In the 1990s, a paradigm shift took place, with the
emergence of the family-centered model and interven-
tion in people with developmental disabilities (DD) in
the field of study [1316]. At present, the Family Quality
of Life (FQOL) paradigm has been consolidated and has
become a reference for the organization and planning of
services and programs for the families of people with DD
[1721].
e FQOL is a multidimensional social construct that
reflects the positive values and life experiences of the
family [15, 22, 23]. e FQOL is a dynamic sense of well-
being of the family, collectively and subjectively defined
and informed by its members, in which individual and
family-level interact. at is, a family perceives quality of
life (QOL) when its members’ needs are met, they enjoy
their life together, and have opportunities to achieve
goals that are transcendental for them [15]. More specifi-
cally, families experiment QOL when (a) they manage to
carry out what they want, (b) they are satisfied with their
attainment, and (c) they feel capable of living the life they
want [24].
As in the field of study of family caregivers of peo-
ple with DD, in the study and interventions in the field
of NDs, a change in the approach is taking place, over-
coming the classic conceptions based on the “model of
deficits/stress”. In the new model, the “family quality of
life model”, these families are considered to have coping
difficulties, poor physical and social well-being, and feel-
ings of guilt, and the objective of the model is to improve
the quality of life of these families [11, 25, 26]. Caring for
a person with ND not only leads to burden for the pri-
mary caregiver but also has adverse effects on family
interactions and changes in family functions [10]. e
family-systems approach emphasizes the interaction and
interdependence among family members and emphasizes
that any change, such as a health problem for one of the
members, will have repercussions on all the others [27].
Recently, there has been considerable research on the
conceptualization, measurement, and improvement of
the quality of life of families, although much of the stud-
ies have focused on families of individuals with DD [28,
29]. e International Family Quality of Life Project was
initiated in 1997 by researchers from Australia, Canada,
and Israel. It examines the quality of life of families who
have one or more members with a DD to advance in the
approach to the FQOL construct and develop an evalu-
ation tool [13]. Currently, this project involves the col-
laboration of a team of researchers from several countries
around the world. For these experts, the principles that
guide the application of the conceptual model of FQOL
are: (1) FQOL is a multidimensional construct and
influenced by several factors; (2) it comprises the same
dimensions for all people; (3) it includes objective and
subjective components; and (4) it is best studied using
qualitative and quantitative methodology [13]. Five fac-
tors were identified as contributing to FQOL in families
providing care to people with dementia: (1) family inter-
actions, (2) support of direct care/activities of daily liv-
ing; (3) emotional/behavioral well-being; (4) physical and
cognitive well-being; and (5) disability support/medical
care [25].
To assess the degree to which FQOL is enjoyable,
meaningful, and supported by resources that are impor-
tant to all family members, the FQOL project developed
the Family Quality of Life Survey (FQOLS–2006) [3032].
is tool collects quantitative data (on Likert scales) and
qualitative data (through open questions) on six measure-
ment dimensions (Importance, Opportunities, Initiative,
Stability, Attainment, and Satisfaction) in nine domains
of FQOL (Health of the family, Financial well-being, Fam-
ily relationships, Support from other people, Support from
disability-related services, Influence of values, Careers,
Leisure and recreation, and Community interaction). e
final section of the survey includes items about overall
impressions of FQOL [30]. e survey had good reli-
ability and validity for caregivers of people with DD [31
33]. Using data from Australia, Canada, and the United
States, it was reported that the four indicators (Initiative,
Opportunities, Attainment, and Satisfaction), and the
nine-domain factor structure of the FQOLS-2006 had
an acceptable level of construct validity [χ2 (27) = 55.32,
p < 0.00, CFI = 0.93, AGFI = 0.94 RMSEA = 0.06] [31].
Concurrent validity showed moderate correlations
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
between five FQOLS-2006 domains and conceptually
related domains. Cronbach’s alpha internal consistency of
the nine domains ranged from poor to good (0.43 to 0.83)
and, for the two-item global FQOL, it was 0.85 [33].
e FQOLS–2006 was designed to evaluate FQOL
in families that have a member with DD, but recently,
there is a new version for primary caregivers of people
with dementia [34]. Modifications of the original survey
included: (a) the adaptation of language to reflect the per-
spective of a caregiver of a person with dementia; (b) the
incorporation in the About your family section of thirteen
items and five categories of responses that measured the
level of independence in six activities of daily life (i.e., eat-
ing, grooming, dressing, etc.) and five practical activities
(i.e., housekeeping, shopping, money management, etc.);
and (c) the differentiation between practical support and
emotional support in the area Support from other people
[34]. e internal consistency was high for two item-item
global FQOL scale (Cronbach’s alpha = 0.85) and for the
FQOLS–Dementia domain scales, it ranged from poor to
good (Cronbach’s alpha range = 0.56–0.85). e domain-
level outcomes of the scales’ internal consistency were
considered good [9].
is study aimed to: (1) translate and culturally adapt
the FQOLS–Dementia into Spanish, to assess the FQOL
among family members of individuals with NDs who live
in the cross-border area Spain–Portugal; and (2) further
examine the specific psychometric properties of reliabil-
ity and validity.
Method
Participants andstudy setting
Participants were recruited from Regional Health Man-
agement (RHM) of Castille and Leon (Spain), between
October 2019 and July 2020. Family members of patients
with NDs were invited to participate in the study if they
met the following inclusion criteria: (1) being a family
member of a person with an ND; (2) contributing to the
daily care of the person with ND but not necessarily the
primary caregiver; (3) being 18years of age or older; (4)
providing their consent; and (5) residing in the cross-bor-
der area of Spain–Portugal (Salamanca, Castille Leon).
Families whose relative with an ND lived in residential
accommodation were excluded.
e sample size (n = 348) was calculated through the
prevalence of NDs in the cross-border area Spain–Por-
tugal in 2020 (N = 987; Dementia: 58.7%, Parkinson:
37.37%, Multiple Sclerosis: 3.7%), using statistic tables
[35]. e RHM selected 890 families of patients with ND,
and 380 families signed the informed consent to partici-
pate. e final sample was composed of 300 participants
(Fig.1).
Instrument: The Family Quality ofLife Survey–Dementia
e FQOLS–Dementia instrument was developed to
measure the QOL of families with at least one member
with dementia [34]. is survey has several parts. e
first one, About your Family, collects descriptive infor-
mation about the family. e next nine parts ask about
specific domains of family life, concretely, Family Health,
Financial well-being, Family relationships, Support from
others, Support from services, Values, Careers, Leisure and
recreation, and Community interaction. Each part con-
tains two sections. Section A addresses the context and
general information, and Section B assesses the impor-
tance, opportunities, initiative, stability, attainment, and
satisfaction with the specific domain of family life. While
attainment and satisfaction are considered outcome
dimensions, importance, opportunities, initiative, and
stability are explanatory dimensions [13]. All Section B
items are rated on a 5-point Likert scale ranging from 1
(Hardly important at all) to 5 (Very important). e last
part of the instrument asks about general impressions
related to FQOL. e reliability of the attainment and
satisfaction dimensions of the FQOLS–Dementia ranged
from moderate (0.56) to good (0.85) [9].
Translation andadaptation process
e process of translation, adaptation, and validation of
the FQOLS–Dementia [9] to the Spanish context for fam-
ilies caring for people with an ND (FQOLS–ND) was car-
ried out following the guidelines and recommendations
for test adaptation proposed by the International Testing
Commission (ITC) [36, 37].
e translation and adaptation process was performed
in 6 phases: (1) translation of each item to Spanish by
two different translators with knowledge and experience
in the field of FQOL. For each item, the translators indi-
cated the degree of difficulty and the level of equivalence
of the translation on a scale ranging from 1 to 10; (2) syn-
thesis of the translations by agreement of the two transla-
tors, resulting in the first Spanish version of the original
instrument; (3) selection of two focus groups, one with
four families of an individual with an ND and another
group with eight professionals of social services to ana-
lyze the cultural acceptability, make suggestions, and
ensure the suitability of the items; (5) concordance and
synthesis was performed by a committee of experts made
up of four researchers of NEUROQUALYFAM team
(cross-border Spain–Portugal cooperation project with
the support of the European Union–POCTEP) to achieve
the semantic, idiomatic, and conceptual equivalence of
the survey; (6) the backward translation of the adapted
instrument was carried out by a PhD in Psychology,
whose maternal language is English and who is bilingual
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
in Spanish to compare the differences or discrepancies
with the original version, thereby obtaining the definite
version of the FQOLS–ND.
Data collection andprocedure
e identification of potential participants was car-
ried out by the Regional Management of Health (RMH)
of Castille and Leon, which sent certified letters to the
selected families with information about the study and
the request for them to consent to participate, and to the
coordinator of the Primary Care Management of Sala-
manca province to present the research to the families of
patients with ND.
As a consequence of the COVID-19 pandemic, data
collection was redesigned because the length of the tool
made it difficult to administer. For this reason, only the
attainment (the degree to which the family can obtain
the things that it wants) and satisfaction (the overall per-
ception of important aspects of family life) dimensions
were evaluated. e decision to use these two dimensions
was based on the following three considerations: (1) from
a psychometric perspective, these dimensions obtained
excellent internal consistency (Cronbach’s alpha = 0.85)
in the validation study of the FQOLS–2006 [31]; (2) from
a conceptual perspective, attainment and satisfaction are
considered as outcome indicators of FQOL [31]; and (3)
when validating the FQOLS–Dementia, only attainment
and satisfaction were examined, obtaining Cronbach’s
alpha coefficients comparable to the original FQOLS–
2006 [9].
To respect the social distancing restrictions, the ques-
tionnaires were administered via telephone by trained
and experienced interviewers. Verbal informed consent
was obtained after informing the participants about the
aim of the study and their right to drop out at any time.
Completing the survey took approximately 30min.
Statistical analysis
Data were analyzed using SPSS 26.0. First, descriptive
statistics of the participants’ characteristics were cal-
culated. e feasibility of the survey was determined
by the response rate, the time spent to complete the
People with neurodegenerative disease with
whom initial contact was made (RMH)
n = 890
Participants who signed the informed consent
n = 380
Impossible to contact by telephone (n = 35)
Sick/not available (n=2)
Total (n=37)
Final sample
n = 300
People who refused to participate
n= 370
Impossible to contact by telephone (n= 56)
Person with ND died (n= 11)
Person with ND institutionalized (n= 28)
Person with ND does not live in CyL (n= 3)
Person with ND does not need family help (n= 27)
Family does not recognize disease (n= 15)
Total (n= 140)
People who refused to collaborate in the study
n= 43
Fig. 1 Sample recruitment process
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
questionnaire, the percentage of missing values per item,
the distribution of scores, and the frequency of the maxi-
mum and minimum values registered.
A descriptive analysis of the items was conducted. Dis-
tribution of scores for each item, proportion of missing
data, the proportion of “does not apply” responses, and
floor and ceiling effects were examined. Floor and ceil-
ing effects were considered to occur when more than 15%
of the respondents endorsed the lowest (1) or highest (5)
scores, respectively [38].
Data computation
Domain subscale total scores were computed as the
mean of each domain’s two-dimensional ratings: attain-
ment and satisfaction. In the case of the Others domain,
the mean of the two dimensions, Emotional and Practi-
cal Support, was calculated. is version of the survey
generates two types of FQOL scores: (a) the total score,
computed by aggregating the 20 items of Section B (i.e.,
two dimensions of each of the eight domains, and four
items from the Others domain); and (b) the global score,
computed from the mean of the two items related to the
overall FQOL.
Dierences betweendomains andbetweendimensions
A descriptive analysis of the domains and dimensions
was conducted. A two-factor (domains and dimensions)
repeated-measures ANOVA was used, and post hoc com-
parisons were used to compare the domains and analyze
the interactions. e significance level was set at 0.05.
Concerning the interpretation of the effect size (ηp2), we
used guidelines proposed by Cohen (0.01 = small effect ,
0.06 = moderate effect, 0.14 = large effect) [39].
Construct validity
We determined whether FQOL is a latent variable that
can be measured with the nine domains as indicators [13,
31], using Confirmatory Factor Analysis (CFA), with the
statistical package AMOS v.18. Maximum Likelihood
(ML) techniques were used to estimate model parame-
ters, similar to analyses undertaken by other authors [31,
40], and the model’s goodness-of-fit and the significance
of the model’s parameter estimates were calculated.
Model fit was evaluated using a chi-square test,
the Root Mean Squared Error of Approxima-
tion (RMSEA < 0.06) and the Comparative Fit Index
(CFI > 0.95) [41]. Standardized factor loadings (λ),
squared multiple correlations (SMC), and modification
indices were examined to determine whether the indi-
cators contributed significantly to the model. Indicators
with low factor loadings (λ < 0.50) were considered to
make a low contribution to the model.
Convergent validity
Pearson’s correlation coefficient values of the domains
scores and the total score with the Global FQOLS–ND
score were evaluated to examine convergence. Corre-
lation coefficients of about 0.10 were considered to be
small, 0.30 medium, and 0.50 large [39].
Reliability assessment
To evaluate internal consistency, Cronbach’s alpha coeffi-
cient was calculated for the nine domains. An alpha value
between 0.70 and 0.95 was considered satisfactory [42].
Results
Translation andcultural adaptation
e survey included some minor modifications. First, a
change of term (dementia is replaced by neurodegenera-
tive disease) and modifications related to the wording of
the questions to reflect the perspective of families car-
ing for people with ND. Second, this work is part of the
NEUROQUALYFAM project, which studies QOL among
families with a member who has an ND in the Spain–
Portugal cross-border area. For this purpose, we removed
the open question items due to the difficulty to code
them, whereas the shorter extension of the instrument
facilitated its application. ird, in the part About Your
Family, one item was added to assess the person’s offi-
cially recognized degree of dependency to carry out basic
daily life activities. Fourth, in Section A, minor adjust-
ments were made. For example, in Item 1 of the Services
dimension, the different response options to the available
support resources for the person with ND were adapted
to the Spanish context. Lastly, in Section B, all 60 items
of the FQOLS–ND are the same as in the original version.
e only change was to replace the term dementia with
neurodegenerative disease.
e final version of the FQOLS–ND contains the fol-
lowing parts. e first part, About your family, includes
12 questions about the family and the person with ND.
e questions range from general socio-demographic
issues to more specific ones, such as the supports
needed by the relative with ND or the degree of inde-
pendence in different daily life activities. e second
part contains the same nine domains of the FQOL of
the original survey: Family health, Financial well-being,
Family relationships, Support from others, Support
from services, influence of Values, Careers, Leisure and
recreation, and Community interaction. Each of these
nine parts has 2 sections: Section A is composed of 33
quantitative items about specific issues within each of
the nine core domains of the FQOL. Section B, in each
of the nine life domains, six dimensions (or indicators)
are used to examine how the family perceives its FQOL.
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
ese dimensions include importance, opportunities,
initiative, stability, attainment, and satisfaction. is
section consists of 60 items and collects quantitative
data of each of the nine life domains on a 5-point Likert
scale, with higher scores indicating higher levels of the
specific domain. e final section Overall Family Qual-
ity of Life consists of two closed-ended questions about
global impressions of the FQOL (Additional file1).
Descriptive characteristics ofthestudy sample
ree hundred participants completed the study. eir
characteristics are shown in Table 1. e mean age is
62.4years (SD = 13.34, range = 25–88years), with almost
60% aged 65 or above. e majority are females (70%),
married/living with a partner (79.7%), unemployed
(64.7%), with low income –up to 1000 EUR per month–
(66.1%), and have elementary or high school qualifica-
tions (72.8%). e vast majority are either the spouse/
partner (40.9%) or son/daughter (51.7%) of the care-
recipient, and are the primary caregiver (93.3%), with
three out of four living in the same household as the care-
recipient. Most of them live in rural areas of up to 500
(44%) or 500–10,000 people (35.7%).
Concerning the characteristics of care-recipients
(Table 2), their mean age is 79.3 years (SD = 11.7,
range = 20–98), and most are females (60%). All of
them suffer from dementia (54.3%), Parkinson´s disease
(26.7%), or multiple sclerosis (6.7%) with some degree
of dependence [43] (67.3%)—generally high (46.2%) or
Table 1 Family caregiver characteristics (n = 300)
Variable n %
Age (M = 62.48, DT = 13.34, Range = 25–88)
Up to 65 years 178 59.3
More than 65 years 122 40.7
Gender
Male 90 30.0
Female 210 70.0
Educational level
No school certificate 21 7.0
Elementary school 150 50.0
High school 68 22.8
University 59 19.8
Employment status
Working (employees + self‑employed) 106 35.3
Not working (retired + unemployed + others) 194 64.7
Income (EUR per month)
Up to 500 95 31.9
500–1000 102 34.2
1000–1500 69 23.1
More than 1500 32 10.7
Marital status
Married or with partner 239 79.7
Others (divorced or separed. widowed. single) 61 20.3
Place of residence—number of in habitants
More than 10.000 61 20.3
500–10.000 107 35.7
Up to 500 132 44.0
Relationship with person with dementia
Spouse or partner 117 40.9
Son/Daughter 148 51.7
Others 21 7.3
Primary caregiver
Yes 280 93.3
No 20 6.7
Living condition
Living with patient 225 75.0
Not living with patient 75 25.0
Table 2 Care‑recipient characteristics (n = 300)
Variable n %
Age (M = 79.3, DT = 11.7, Range = 20–98)
Gender
Male 120 40.0
Female 180 60.0
Diagnosis
Dementia 163 54.3
Parkinson Disease 80 26.7
Multiple Sclerosis 20 6.7
Others (unknown by family; several NDs) 37 12.3
Dependence
Yes 202 67.3
No 98 32.7
Grade of dependence
Grade 1 46 23.1
Grade 2 61 30.7
Grade 3 92 46.2
Supports needed
None 27 9.0
Very few 32 10.7
Some 75 25.0
Quite a lot 56 18.7
A lot 110 36.7
Communication skills
Poor communication 76 25.3
Only basic needs 26 8.7
Needs, desires, ideas 42 14.0
Coherent on some topic 66 22.0
Cooherent on many topics 90 30.0
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Badiaetal. Health Qual Life Outcomes (2021) 19:172
moderate (30.7%). Concerning support, 91% have sup-
port needs, and in 55.4%, these needs are high. Of these
people, 48% cannot maintain a coherent conversation.
Descriptive characteristics oftheFQOLS–ND
e percentage of missing data for each item was 0%. e
minimum and maximum scores in every item were 1 and
5 (only in the dimensions of attainment and satisfaction
of the domain Family Health had a minimum score of 2).
A ceiling effect in the domains of Family (53.0%)
and Careers (19.0%) was observed for the attainment
dimension. A ceiling effect was found for the satisfac-
tion dimension in the domains of Family (50.7%), Others
(18.7%), and Careers (20.0%).
Skewness ranged from 1.13 to 0.17 and from
1.40 to 0.23 for attainment and satisfaction, respec-
tively. Kurtosis ranged from 0.13 to 1.38 (attainment)
and from 0.61 to 2.56 (satisfaction).
e total FQOLS–ND scores were virtually symmetri-
cal ( 0.45 and 0.85, for attainment and satisfaction,
respectively), and slightly leptokurtic (1.39 and 1.38, for
attainment and satisfaction, respectively) (Table3).
Dierences betweendomains andbetweendimensions
e means in attainment and satisfaction in each of the
nine domains are shown in Table 3. Attainment and
satisfaction mean ratings were similar across the nine
domains.
e ANOVA revealed significant differences between
the domains, F(8, 2392) = 96.77, p < 0.001, ηP2 = 0.25.
e domains that participants perceived as significantly
higher (p < 0.001) were Family (M = 4.38, SD = 0.71)
and Careers (M = 3.97, SD = 0.69), whereas the domains
perceived as significantly lower (p < 0.001) were Services
(M = 2.97, SD = 0.99) and Leisure (M = 3.34, SD = 0.92).
When comparing the domains separately in the
dimensions of attainment and satisfaction, results
revealed significant differences between scores for the
domains in attainment, F(8, 2392) = 108.45, p < 0.001,
ηP2 = 0.27, and satisfaction, F(8, 2392) = 64.98,
p < 0.001, ηP2 = 0.18. e domains that participants
perceived as significantly higher (p < 0.001) in attain-
ment were Family (M = 4.41, SD = 0.72) and Careers
(M = 3.96, SD = 0.71), whereas the domains perceived
as significantly lower (p < 0.001) in attainment were
Services (M = 2.83, SD = 1.02) and Others (M = 3.19,
SD = 1.14). In terms of satisfaction with the domains,
the participants reported significantly higher satisfac-
tion (p < 0.001) in the domains of Family (M = 4.35,
SD = 0.80) and Careers (M = 3.98, SD = 0.75), whereas
Services (M = 3.11, SD = 1.11) and Leisure (M = 3.43,
SD = 0.95) were perceived as significantly less satisfac-
tory (p < 0.001).
Results indicated a statistically significant difference
between the dimensions, F(1, 299) = 118.96, p < 0.001,
ηP2 = 0.29. e mean level of satisfaction experienced
Table 3 Descriptive characteristics of the FQOLS–ND
Health, Health of family; Finances, Financial wellbeing; Family, Family relationships; Others, Support from other people; Services, Support from disability-related
services; Values, Inuence of values; Careers, Careers and preparing for careers; Leisure, Leisure and recreation; Community, Community interaction
M Mean, SD Standard deviation
Domains Attainment Satisfaction
M (SD) Skewness Kurtosis % Floor % Ceiling M (SD) Skewness Kurtosis % Floor % Ceiling
Health 3.64
(0.69)
0.52 0.20 0.0% 6.0% 3.66
(0.84)
0.72 0.42 1.0% 11.0%
Finances 3.53
(0.64)
0.86 0.93 0.7% 1.3% 3.58
(0.69)
1.19 1.46 1.0% 2.0%
Family 4.41
(0.72)
1.13 1.38 0.3% 53.0% 4.35
(0.80)
1.40 2.00 0.7% 50.7%
Others 3.19
(1.14)
0.53 0.50 12.3% 8.3% 3.76
(0.87)
0.44 0.03 1.0% 18.7%
Services 2.83
(1.02)
0.29 0.61 13.7% 2.3% 3.11
(1.11)
0.56 0.61 12.7% 5.0%
Values 3.49
(0.86)
0.17 0.53 2.7% 13.0% 3.64
(0.82)
0.23 0.46 1.7% 15.0%
Careers 3.96
(0.71)
0.71 1.30 0.3% 19.0% 3.98
(0.75)
1.12 2.56 1.0% 20.0%
Leisure 3.25
(0.98)
0.66 0.13 6.7% 4.3% 3.43
(0.95)
0.92 0.42 5.3% 6.0%
Community 3.74
(0.80)
0.93 1.29 1.3% 11.7% 3.83
(0.71)
0.89 1.80 0.7% 11.7%
Total scores 3.52
(0.49)
0.45 1.39 3.71
(0.49)
0.85 1.38
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Page 8 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
(M = 3.71, SD = 0.49) was significantly higher than mean
level of attainment (M = 3.52, SD = 0.49).
e interaction Domains x Dimensions was significant,
F(8, 2392) = 32.69, p < 0.001, ηP2 = 0.10, and the a poste-
riori tests revealed that the mean level of satisfaction was
higher than the mean ratings of attainment in eight of the
nine domains, although these differences were only sta-
tistically significant in six domains: Finances (p = 0.03),
Others (p < 0.001), Services (p < 0.001), Values (p < 0.001),
Leisure (p < 0.001), and Community (p = 0.001). e par-
ticipants reported a higher level of attainment only in the
Family domain (p = 0.04).
Large effect sizes were found in the domain and dimen-
sion factors. However, the effect size of the interaction
was medium. A large effect size was also obtained when
analyzing the differences between domains separately in
the dimensions of attainment and satisfaction.
Construct validity ofFQOLS–ND
Factor structure
Results showed that the hypothesized model, consist-
ing of nine indicators (the nine domain subscales) and
one latent factor presented a moderate fit, χ2(27) = 99.21,
p < 0.001, CFI = 0.84, RMSEA = 0.10.
ese results reflect the cultural values of the society in
our study, in which the families and close relatives of the
person with an ND are characterized by commitment,
solidarity, and the family obligation to provide care to the
dependent relative [44]. e results also show that the
very high economic costs of dementia in Spain are borne
by the family, and highlight the impossibility or difficul-
ties to access social-health resources because they are
either insufficient or economically inaccessible [44]. For
this purpose, an inter-correlation between indicators was
proposed, which means that these indicators are related
to each other because they all share the quality of repre-
senting FQOL. More specifically, correlations were pro-
posed between Others and Values, Family and Values,
and Health and Finances.
e inclusion of the error covariance between the
domains of Health and Finances, Values, and Family, and
of Values and Others improved model fit, χ2(24) = 31.48,
p = 0.14, CFI = 0.984, RMSEA = 0.032.
All the indicators were statistically significant
(p < 0.001), as shown in Fig. 2, Leisure= 0.78) and
Community= 0.70) had the highest factor loadings,
whereas Values= 0.31) Family= 0.36), and Careers
= 0.38) had the lowest factor loadings. Leisure (61%)
and Community (49%) also showed the highest contri-
bution to the variance of the latent factor of the FQOL,
whereas the contribution of the remaining domains was
lower than 30%: Services and Financial (20%), Health and
Others (17%), Careers (14%), Family (13%) and Values
(9%).
Correlations betweenthedomain subscales
Correlations between the domain subscales ranged from
weak (r = 0.06, p > 0.05, the correlation between Finances
and Values, which did not reach statistical significance)
to strong (r = 0.55, p < 0.001, the correlation between Lei-
sure and Community). See Table4.
Convergent validity
Total and subscale (domain) scores were significantly
correlated (p < 0.001) with the Global FQOL score, except
for the Values domain. e correlation coefficient for the
total and Global FQOL scores was large (r = 0.55). e
magnitude of the correlation coefficients of the Global
FQOL score and the domains, in descending order,
were: large for Leisure (r = 0.51); medium for Commu-
nity (r = 0.43), Health (r = 0.42), Finances (r = 0.39), and
Careers (r = 0.31); and small for Services (r = 0.26), Fam-
ily (r = 0.25), and Others (r = 0.21) (Table4).
Reliability
As shown in Table4, the internal consistency of the nine
domain subscales, containing two items each, was satis-
factory, with alphas ranging from Cronbach α = 0.80 to
0.91. Moreover, internal consistency was excellent for the
total 18-item FQOL scale (Cronbach’s alpha = 0.85) and
for the Global FQOL scale, containing two items related
to the overall FQOL (Cronbach’s alpha = 0.87).
Discussion
e purpose of this study was to translate, culturally
adapt, and validate the FQOLS–Dementia that takes into
account the characteristics of the target population, fami-
lies who care for people with NDs in the cross-border
area Spain–Portugal.
e analysis of the scores found almost no ceiling
or floor effects in the dimensions within each of the
domains, with 15% considered the maximum accept-
able. However, on the one hand, the Family and Careers
domains had a ceiling effect in the attainment dimen-
sion. is indicates that the family perceives that can it
achieve quality relationships among the different family
members. at is, the family achieves a high degree of
support, respect, and mutual trust, and can reach agree-
ments and decisions, and remains together. is result is
similar to that obtained by previous studies that consider
that affection and solidarity among family members in
the care of dependents are aspects of great value [11, 19].
Moreover, unlike in previous studies, caring functions
performed by the families do not imply giving up the aca-
demic and professional career of any of its members [2,
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Page 9 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
e8
e2
e1
e3
e5
e6
e7
1.00
.41***
.45***
.36***
.41***
.45***
.31***
.38***
.78***
.70***
.41
.32
.44
.71
.79
.58
.33
.41
.27
e9
.24
.21
e4
.36
Fig. 2 Domain structure of total FQOLS–ND
Table 4 Correlation matrix and Cronbachs’s α of FQOL domains
Cronbach’s α of the FQOL domain subscales are presented on the diagonal
* p < .05; **p < .01; p < .001
12345678910
1. Health .82
2. Finances .48*** .89
3. Family .23*** .18** .85
4. Others .12* .15** .16** .80
5. Services .14* .26*** .12* .23*** ,85
6. Values .13* .06 .33*** .31*** .13* .90
7. Careers .20*** .14* .23*** .20*** .08 .24*** .88
8. Leisure .35*** .36*** .26*** .27*** .36*** .23*** .29*** .90
9. Community .26*** .29*** .24*** .33*** .31** .21*** .23*** .55*** .91
10. Global FQOL .42*** .39*** .25*** .21*** .26*** .11 .31*** .51*** .43*** .87
Mean (SD) 3.65
(0.71) 3.56
(0.63) 4.38
(0.71) 3.48
(0.93) 2.97
(0.99) 3.57
(0.80) 3.97
(0.69) 3.34
(0.92) 3.79
(0.71) 3.67
(0.68)
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Page 10 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
45]. On the other hand, the satisfaction dimension had a
ceiling effect in the Family, Others, and Careers domains,
which reflects the family’s high perception of fam-
ily cohesion, support from the close environment, and
opportunities for vocational training and professional
qualification. ese results are similar to those reported
by other authors who point out that the family system
is a platform of essential resources to deal with the car-
ing tasks of a family member with dementia, and family
caregivers who have a greater social support network
reported a better QOL [44, 46].
Likewise, the present study examined two outcome
measures for each of the nine family life domains of the
FQOLS–ND. e attainment and satisfaction means
were similar in all nine domains, albeit the Family and
Careers domains were rated higher, and the Services
and Leisure domains were rated lower. ese results
have been partially confirmed by previous studies that
indicate, on the one hand, the positive effect of qual-
ity family relationships and, on the other hand, the low
effect that caring for the person with an ND has on the
family’s training and work activities. ey also show the
difficulties that the family has to access adequate profes-
sional services and enjoy leisure activities [9, 18]. Also,
the results have shown that the satisfaction scores were
higher than the scores in attainment, and they were sig-
nificant in Finances, Others, Services, Values, Leisure,
and Community. As is well known, satisfaction scores
are often over-estimated because family caregivers tend
to report moderately positive levels of well-being, except
in rare cases where they feel overwhelmed to the point
of not being able to cope with daily challenges [47].
Finally, a noteworthy result was that families reported a
higher level of attainment than satisfaction in the Family
domain. is may indicate that, despite having achieved
good relationships among family members and high lev-
els of co-responsibility in decision-making and problem-
solving concerning their caring functions, this was at
the cost of a reduction in well-being. In short, the caring
family, beyond direct physical care (e.g., administering
medication, assisting in daily grooming, preparing meals,
etc.), must organize and distribute care responsibilities
(e.g., managing health services, care planning, accompa-
niment to doctors, etc.), which can have negative conse-
quences on family satisfaction [44, 45].
e CFA provides empirical support for the construct
validity of the FQOLS–ND for the population of caring
families in the cross-border Spain–Portugal area. e
CFA allowed us to establish the validity of this scale and
supports the FQOL construct proposed by the authors
of the original version of the instrument [31]. e
CFA produced fit indices clearly suitable for the nine-
domain model, better than those obtained by previous
studies [31, 40]. We also found a high contribution of
the Leisure and Community domains to FQOL, a simi-
lar result to that obtained by a previous study on the
psychometric properties of the FQOLS–2006 [40]. at
is, the family’s opportunities to participate and enjoy
leisure activities and free time, as well as their involve-
ment in social life, are factors that lead to better results
of FQOL, results that are confirmed by previous scien-
tific literature [46, 4852]. In short, these results allow
us to conclude that the structure of a latent factor,
FQOL, represented by the nine domains, is replicated.
In this study, we present the domain structure of
the total FQOL as a latent variable that can be meas-
ured using nine indicators for each domain [40]. We
agree with the authors of the scale that the value of
this scale is that it gathers information about a large
number of domains or areas of the family in which the
family’s needs and support resources can be detected,
although some domains are less closely related to the
other domains or to the total or global scores. Also,
the tool is not intended to reduce the FQOL to a single
score, but rather to provide information about each of
the nine domains and to facilitate the identification of
needs at the individual family level, to contribute to the
improvement of the services and supports the families
receive [40].
e convergent validity, tested by the relationships
between the domain scores and the global FQOL score,
showed a strong association of this score with Leisure
and a moderate one with the domains of Community and
Health, like the results obtained in prior research on fam-
ily caregivers of people with dementia [9]. In the face of
care demands required by a person with ND, caregiver
families often restrict their participation in enjoyable
activities and have few opportunities to maintain social
networks, which can affect family well-being [9, 51].
Values was the only domain that was not directly asso-
ciated with the global FQOL score. In summary, the posi-
tive correlations between the different subscales and the
global FQOL score may mean that, in FQOL, satisfac-
tion is measured similarly by the perceptions of the eight
domains.
Internal consistency of the FQOLS–ND subscales was
found to be excellent. Internal consistency of the 20-item
total FQOL scale was also excellent. Internal consistency
results are similar to those found in other studies using
the original version of the instrument in caring fami-
lies of people with DD and dementia [9, 31]. However,
it should be noted that the internal consistency rates of
this study are somewhat higher and especially more sig-
nificant in the Health, Finances, and Services subscales.
e higher Cronbach alpha values obtained in our study,
despite including a lower number of ítems, are explained
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Page 11 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
because all the items included in our scale correspond to
the outcome dimension (attainment and satisfaction).
e practical implications of the results obtained
concerning the levels of evaluation, intervention, and
planning of support services are multiple. us, the
FQOLS–ND allows us to evaluate the FQOL profile of
caring families of people with ND, identifying their needs
and priorities. More specifically, it provides an assess-
ment of the integral needs of the caring family, which
serve as a guide for the design of comprehensive inter-
vention plans, offering the necessary supports for the
family to perform their caring functions with less dis-
comfort and better FQOL. Finally, the FQOLS–ND is a
useful tool for planning, organization, and evaluation
of quality social healthcare services for people with ND
and their families living in rural areas of the cross-border
Spain–Portugal area.
e Coronavirus disease (COVID-19) affected the
data collection for this study. One of the challenges was
to review the contents of the instrument to develop a
shorter version of the scale and facilitate the collection of
the respondents’ data. e translated and adapted Span-
ish version of the FQOLS–Dementia for a population
with ND is an overly long instrument, as the authors of
the original instrument point out [9]. For this reason, as
indicated in the data collection and procedure sections,
we chose to include only the attainment and satisfaction
dimensions for the nine domains of FQOL to analyze the
properties of the instrument.
erefore, this study has some limitations. We could
not analyze the factorial structure at two levels, like the
authors of the original scale. Specifically, we could not
analyze the item-level factor structure of the domains,
the domain subscale aggregated from six dimensions,
because only items corresponding to the dimensions of
attainment and satisfaction were included in this study.
On the other hand, the model we present is a model of
FQOL outcome measures because the explanatory meas-
ures (importance, opportunities, initiative, and stability)
were not included.
Finally, beyond the psychometric properties, a scale
and user manual will be developed for the Spanish ver-
sion to illustrate the scores in an FQOL profile that will
facilitate the interpretation of the scores.
Conclusion
is study has provided evidence of the validity and reli-
ability of the FQOLS–ND to assess the QOL of caring
families of people with an ND in the cross-border Spain–
Portugal area. e findings highlight the importance of
family involvement in leisure activities and community
integration to increase their QOL. is tool’s usefulness
for improving FQOL results is noteworthy, implementing
evidence-based practices and guiding the planning of sup-
port services.
Abbreviations
RHM: Regional Management of Health; CyL: Castille and Leon; CFA: Confirma‑
tory factor analysis; ML: Maximum Likelihood; CFI: Comparative Fit Index; AGFI:
Adjusted Goodness‑of‑Fit Index; RMSEA: Root Mean Square Error of Approxi‑
mation; SMC: Squared Multiple Correlations; λ: Standardized factor loadings.
Supplementary Information
The online version contains supplementary material available at https:// doi.
org/ 10. 1186/ s12955‑ 021‑ 01809‑6.
Additional le1. Escala de Calidad de Vida Familiar: Enfermedades
neurodegenerativas.
Acknowledgements
The authors would like to thank the families of people with NDs and the
health and social services professionals who collaborated in the study.
Authors’ contributions
MB participated in the conception, design, and discussion section of the
study. BO and AA did the statistical analyses and manuscript drafting. IVM
wrote the introduction and method of the manuscripts. EGO and MGV con‑
tributed to the transcultural validation into Spanish. MMD participated in data
acquisition. All authors participated in reviewing the manuscript. All authors
read and approved the final manuscript.
Funding
This study was funded by the Project “NEUROQUALYFAM, Neurodegenerative
Diseases and Family Quality of Life”, funded by the Fondo Europeo de Desar‑
rollo Regional (FEDER) through the program INTERREG V‑A España—Portugal
(POCTEP) 2014–2020.
Availability of data and materials
Data sharing is available upon reasonable request. Kindly contact the cor‑
responding author.
Declarations
Ethics approval and consent to participate
The study was approved by the Bioethics Committee of the University of
Salamanca (Protocol No. 2019/238). All procedures comply with the principles
of the 1964 Declaration of Helsinki and its amendments. Verbal consent was
obtained from all participants prior to data collection.
Consent for publication
Not applicable.
Competing interest
The authors declare that they have no competing interests.
Author details
1 Institute on Community Integration (INICO), Faculty of Psychology, University
of Salamanca, Avda. de la Merced, 109‑131, 37005 Salamanca, Spain. 2 Teacher
Training College of Zamora, University of Salamanca, Avda. Príncipe de Astu‑
rias s/n, 49029 Zamora, Spain. 3 Regional Health Management (RHM) of Castille
and Leon (Spain), Paseo de Zorrilla, 1, 47007 Valladolid, Spain.
Received: 5 March 2021 Accepted: 19 June 2021
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Page 12 of 13
Badiaetal. Health Qual Life Outcomes (2021) 19:172
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... 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 mixedmethods 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. ...
... 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. ...
Article
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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.
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The rural–urban dichotomy is one of the most debated topics by the scientific community in territorial issues. In addition, many public entities and scientific studies have established the distinctive elements of rural and urban spaces by relating the decline of the rural ones with factors such as aging, low birthrate, the primary sector, unemployment, or poverty, among others. Therefore, the purpose of this paper is to spatially study the current model of territorial organization of Spanish urban and rural municipalities as well as their demographic and socioeconomic characteristics. To this end, GIS (Geographic Information System) tools were used to carry out a spatial autocorrelation (SA) analysis and to identify homogeneous groups of the variables considered. In conclusion, there are different demographic and socioeconomic realities in Spain, an urban one located on the coast with a positive situation and, on the other hand, a regressive reality composed of rural municipalities, among which there are villages whose situation is worrying, mainly located in the north of Spain.
Article
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Objective The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers. Design A two‐phase mixed methods study involving qualitative focus groups and a survey. Setting A rural region in Victoria, Australia. Participants People living with dementia, carers and health professionals. Results Focus groups identified 12 areas of need. A follow‐up survey reached consensus on the priority areas for service improvement. These included diagnosis and information access, dementia training, community understanding and carer support. Conclusion Living in a rural region imposes significant challenges on people with dementia and carers. We need to find ways to address gaps in service provision for carers and people with dementia in rural settings and examine their applicability in other rural regions more broadly.
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Background Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. Methods We studied family carers of people with dementia and staff working in dementia services iteratively using in‐depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study‐specific advisory group of family carers. Results We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment. Conclusions For carers of people with dementia, the QOL construct was found to include condition‐specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.
Article
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Purpose of Review This article provides an updated review of the determinants of caregiver burden and depression, with a focus on care demands and especially the differential effects of various neuropsychiatric symptoms or symptom clusters. Moreover, studies on caregivers for frontotemporal and Lewy body dementias were referred to in order to identify differences and similarities with the mainstream literature based largely on Alzheimer caregivers. Recent Findings As a group, neuropsychiatric symptoms are most predictive of caregiver burden and depression regardless of dementia diagnosis, but the effects appear to be driven primarily by disruptive behaviors (e.g., agitation, aggression, disinhibition), followed by delusions and mood disturbance. Disruptive behaviors are more disturbing partly because of the adverse impact on the emotional connection between the caregiver and the care-recipient and partly because they exacerbate difficulties in other domains (e.g., caring for activities of daily living). In behavioral variant frontotemporal dementia, not only are these disruptive behaviors more prominent but they are also more disturbing due to the care-recipient’s insensitivity to others’ feelings. In Lewy body dementia, visual hallucinations also appear to be distressing. Summary The disturbing nature of disruptive behaviors cuts across dementia conditions, but the roles played by symptoms that are unique or particularly serious in a certain condition need to be explored further.
Article
Aims: Most caregiving literature focuses on individual-level outcomes, with sparse knowledge on family-level outcomes. Therefore, the purpose of this study was to describe the family quality of life (FQOL) of people with dementia and identify factors that influence their FQOL, as perceived by family caregivers. Methods: A convenience sample of 31 family caregivers of people with dementia was interviewed using a modified version of the Family Quality of Life Survey (FQOLS-2006). Statistical analyses were conducted to examine domain level and global FQOL outcomes. Results: Although caregivers reported the highest level of attainment in the domain of family health, they were also least satisfied with this domain. Global FQOL was significantly associated with caregiver health, care-recipient co-morbidities of psychological and motor problems, and three (health, leisure, community) of the nine FQOL domain level outcomes. Conclusion: Encouraging families to increase leisure participation can improve their health and global FQOL.
Article
Aims: The purpose of this study was to test the psychometric properties of the Family Quality of Life Survey (FQOLS-2006) when used with urban families predominantly from socioeconomically disadvantaged backgrounds. Methods: Data gathered from 193 family caregivers using the FQOLS-2006 were subjected to reliability analyses, confirmatory factor analyses, and correlational analyses to test the internal consistency of the scales (reliability), factor structure of the scales (construct validity), and convergence between the long and short versions of the tool (criterion validity). Results: Internal consistency of the 54-item total FQOL scale was excellent (α = .89), while that of the six-item domain subscales ranged from moderate to strong (α = .46-.81). Although the subscale-level FQOL factor structure demonstrated good fit, some of the item-level factor loadings within each of the domains were low. Correlations between scores derived from the long and short versions ranged from moderate to strong (r = .37-.73). Conclusions: Although the internal consistency of the scales ranged from moderate to strong, the FQOLS-2006 had only a moderate degree of construct and criterion validity when used with a sample consisting predominantly of minorities from socioeconomically disadvantaged backgrounds.
Article
Date Presented 4/8/2016 The aim of this study is to describe the family quality of life (FQOL) of people with dementia using a recently modified FQOL survey. The results suggest occupational therapists should explore ways to enhance FQOL by shifting from medical to community-based models of intervention. Primary Author and Speaker: Rosanne DiZazzo-Miller Additional Author and Speaker: Preethy Samuel Contributing Authors: Erin Skotzke, Hilary Diacono
Article
Background: Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver well-being. Methods: Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998). Results: Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated. Conclusions: The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.