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Long‐Term Care Quality‐of‐Life Scale utility in community home care


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This study aimed to test the utility of the Long‐Term Care Quality‐of‐Life assessment scale within community home care contexts and to compare the scale against the World Health Organization Quality‐of‐Life scale in terms of reliability and validity. Both scales were administered concurrently to 109 older adults receiving home care. Analysis revealed the Long‐Term Care Quality‐of‐Life scale to have good test–retest reliability, modest but acceptable internal consistency, and pairwise comparison between the Long‐Term Care Quality‐of‐Life and World Health Organization Quality‐of‐Life scales' scores suggesting moderate‐to‐strong correlation of criterion validity and comparability between scales. The results showed that the assessment of individual perceptions of life quality within home care contexts can be monitored and recorded, and that Long‐Term Care Quality‐of‐Life scale monitoring in home and residential care can identify opportunities for quality‐of‐life support and care continuity, even with transitions between care services and systems. The implications of the present study lie in having access to a validated quality‐of‐life assessment scale that can be used across care contexts to support evidence‐based practice, continuity of care, and acknowledgement of individual circumstances in services and care planning.
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Long-Term Care Quality-of-Life Scale utility in community
home care
Tracey McDonald PhD, MSc(Hons), BHA, Dip Ed, RN, RM |
Frances Russell BAppSc (Biomed), MPH
Faculty of Health Sciences, Australian Catholic
University, Sydney, New South Wales,
Tracey T.A. McDonald, Department of
Nursing, Midwifery & Paramedicine, Australian
Catholic University, PO Box 968, North
Sydney NSW 2059, Australia.
This study aimed to test the utility of the Long-Term Care Quality-of-Life assessment
scale within community home care contexts and to compare the scale against the
World Health Organization Quality-of-Life scale in terms of reliability and validity.
Both scales were administered concurrently to 109 older adults receiving home care.
Analysis revealed the Long-Term Care Quality-of-Life scale to have good testretest
reliability, modest but acceptable internal consistency, and pairwise comparison
between the Long-Term Care Quality-of-Life and World Health Organization
Quality-of-Life scales' scores suggesting moderate-to-strong correlation of criterion
validity and comparability between scales. The results showed that the assessment
of individual perceptions of life quality within home care contexts can be monitored
and recorded, and that Long-Term Care Quality-of-Life scale monitoring in home and
residential care can identify opportunities for quality-of-life support and care conti-
nuity, even with transitions between care services and systems. The implications of
the present study lie in having access to a validated quality-of-life assessment scale
that can be used across care contexts to support evidence-based practice, continuity
of care, and acknowledgement of individual circumstances in services and care
community care, evidence-based practice, home care, long-term care, Long-Term Care
Quality-of-Life scale, quality-of-life assessment
General awareness of quality of life (QoL), a term first coined in the
early 20th century, has been of ongoing interest to service providers,
health professionals, patients, and their families since the 1960s
(Wood-Dauphinee, 1999). Researchers have refined the concept of
QoL and developed theoretical models to explain how individual mea-
sures, with methodologic rigor and practical applications, can fit within
care servicescontexts (Henchoz et al., 2017). Borowiak and Kostka
(2004) note that policies and programs are increasingly focused on
finding ways to improve life quality, rather than just extending the
length of life. The increasing likelihood of an older person moving
between services to obtain care and support means that reliable tools
need to be available for the consistent assessment of their reactions
to their surroundings across all care contexts. Stakeholders also have
an interest in ensuring that government-funding subsidies are used
appropriately; therefore, most national funding systems include regu-
latory frameworks that assess clinical care quality, and more recently,
report on patient experiences of life quality because of where they
are and the services they receive.
The Long-Term Care QoL (LTC-QoL) scale was developed, tested,
and published to provide a life quality assessment suitable for people
Received: 19 May 2018 Revised: 10 May 2019 Accepted: 19 May 2019
DOI: 10.1111/nhs.12628
494 © 2019 John Wiley & Sons Australia, Ltd Nurs Health Sci. 2019;
living in residential care in Australia (McDonald, 2014). During its
development, the LTC-QoL scale underwent many iterations based on
input from clinicians and managers using the scale. All were closely
associated with the care of people with chronic comorbidities and dis-
abilities who were admitted for care, support, treatment, and protec-
tion. The scale provides clinicians and managers with individualized
information and reliable evidence to inform care planning, resource
allocation, and quality benchmarking of QoL support interventions
(McDonald & Shaw, 2019).
Since the release in 2006 of the LTC-QoL scale within Australia's
residential aged care sector, voluntary feedback from clinicians and
managers is that the scale provides a unique diagnostic opportunity
related to the integrity and strength of the five life-quality pillars
described in the scale: (i) social connection and activity; (ii) acting for
ourselves; (iii) supportive relationships; (iv) taking a positive outlook
on life; and (v) feeling safe and secure (McDonald, 2016). The LTC-
QoL monitors nine factors that can be managed to help the person
improve their level of contentment (Figure 1). As such, the LTC-QoL
scale is unique in delivering information to nurses and others who can
intervene to improve QoL for people with diverse care needs. Ettema,
Droes, de Lange, Mellenbergh, and Ribbe (2005) reported that many
QoL tools lose relevance in the presence of dementia; however, the
LTC-QoL scale was found to be valid, reliable, and reproducible,
irrespective of the dementia status of the older person (McDonald,
2014), and under strict conditions, proxy reporting was also valid.
The current study was prompted by enquiries from LTC-QoL scale
users as to whether they could also use the scale within community
home care environments to monitor patients' reactions to transition
between services.
1.1 |Literature review
Most older Australians receive care in community settings and never
need residential care (Kendig, Browning, Pedlow, Wells, & Thomas,
2010). The Australian Government is responsible for full funding, pol-
icy, management and delivery for a consistent and unified aged care
system covering basic home care through to residential care.(Council
of Australian Governments, 2011, p. 53). The National Health Reform
Agreement also states that national and state governments share
responsibility for providing continuity of care across health, aged care
and disability services to ensure smooth client transitions(p. 54). The
trend toward home care is occurring internationally and it is expected
FIGURE 1 Long-Term Care Quality-of-Life scale
that government spending will decrease with the movement of
patients from institutional to community/home care (Buttke, Cooke,
Abrahamson, Shippee, & Davila, 2018). Research supporting this trend
includes simulation models of patient flows within long-term care net-
works (Keno, 2017), as well as a focus on safety and care outcomes
for people funding their own community care (Kane, Davila, Shippee, &
Abrahamson, 2016). However, despite this policy direction, research
on monitoring the QoL experiences of people transitioning between
home care and government-subsidized residential care has been
Historically, researchers have used many different theoretical
frameworks and processes to examine QoL and have produced a
diversity of definitions and specialist perspectives. Unfortunately, this
range of approaches has delayed the operationalization of QoL as a
factor that can be identified and managed (Clark, Tucke, & Whitlatch,
2008; Felce & Perry, 1995). The approach we have taken centralizes a
person's self-perceived life quality as revealed through their reactions
to interventions delivered in accordance with their location and cir-
cumstances. The home care context is influenced by both functional
and existential variables. Life quality could depend upon such ele-
ments as dependency levels and cultural expectations of the person
and their family, the attitudes they hold toward life and aging, and
whether they are lonely.
International research into the influence of disease and disability
on life quality as well as economic analyses of care approaches has
produced a substantial body of knowledge from various perspectives
(Bulamu, Kaambwa, & Ratcliffe, 2015; Buttke et al., 2018; Castro,
Driusso, & Oishi, 2014; Lucas-Carrasco, 2012). It is generally accepted
that a person's ability to access home care should also be assessed.
Therapeutic strategies around QoL for older adults ought also to
include multi-disciplinary geriatric and psychosocial interventions
(Fassino et al., 2002). Assessments that link QoL with particular ill-
nesses are known as Health-Related QoL (HR-QoL) scales, and some
are used to calculate disease burden (Muldoon, Barger, Flory, &
Manuck, 1998). Most HR-QoL tools approach QoL as a phenomenon
that aligns with changes in physical and mental capacity because of
health changes. Such alignments do not always occur as expected; for
instance, the disability paradox described by Albrecht & Devlieger,
1999. HR-QoL tools are not necessarily appropriate for older adults
living with the functional decline of normal aging or even stabilized
chronic conditions. Kamitani et al. (2017) found that many existing
HR-QoL tools are inappropriate for people receiving home care,
because they live with many comorbid conditions that affect activities
of daily living and opportunities to socialize.
Outlook on life is important therefore, if a person's views of life
quality are assumed by others to be linked to their functional abilities,
it might accidentally trivialize the person's expectations of life and
undermine their self-determination and resilience. Castro et al. (2014)
reported that while changes in health due to aging can affect QoL, it
is how the older person responds to the aging process, rather than
their impairment, that is crucial when assessing QoL. Individually per-
ceived QoL focuses on how people view their own life quality, espe-
cially if facing personal challenges (Levasseur, Tribble, & Desrosiers,
2009). Therefore, if the assessment is to fully acknowledge a patient's
personal issues and lifestyle situations, their views about life and life
quality must be assessed using a reliable and appropriate scale.
A widely accepted approach to testing the reliability of a scale is
to compare it with another established scale (Von Steinbach,
Lischetzke, Gurny, & Eid, 2006). For comparison, we needed another
scale that centralizes a person's reactions to their situation and
remains valid across care levels and location boundaries. As no similar
scale could be found, we searched for one with characteristics in com-
mon with the LTC-QoL.
In 2006, The World Health Organization developed a survey to
assess generic life quality (WHOQOL-BREF) to support epidemiologi-
cal research, clinical trials and for use in clinical treatment contexts
(Skevington, Lofty, & O'Connell, 2004, p. 299). The WHOQOL-BREF
prioritizes the views of individuals about their circumstances and their
self-perceived health status. We selected the WHOQOL-BREF as a
validated scale against which we could test the LTC-QoL's robustness
within the community home care context. Prior to commencement of
concurrent testing of both scales, nurses employed in two community
home care contexts attended a 90 minute group training on the use
of both scales. Following data collection, the group met again to dis-
cuss any issues they wished to raise about the scales and the project.
1.2 |Study aims
The aims of the present study were to: (i) test the utility and reliability
of the LTC-QoL assessment scare within the community home care
context; and (ii) compare the performance of the LTC-QoL with the
WHOQOL-BREF in home care contexts.
The study incorporated two quantitative measures: (i) psychometric
validation of the LTC-QoL for community home care; and
(ii) comparison of LTC-QoL results with WHOQOL-BREF validity and
reliability results.
2.1 |Participants and setting
A priori determination of the sample size required to support statisti-
cal analysis was estimated to be 10 participants for each of the nine
questions in the LTC-QoL scale (Anthoine, Moret, Regnault, Sbille, &
Hardouin, 2014); that is, 90 participants each undergoing two concur-
rent assessments (LTC-QoL and WHOQOL-BREF) during two home
visits with the same nurse. Older adults approved to receive the home
care subsidy provided via the Australian Government Aged Care Act
1997 and admitted for home care were eligible to participate. To
maintain consistency with earlier validation of the LTC-QoL in resi-
dential aged care, no clients were excluded. Two metropolitan service
providers in Australia approved the study and allowed the researcher
access to clients and staff ( Table 1).
2.2 |Ethical considerations
Ethics approval was granted by the home care service providers and
University Human Research Ethics Committee (HREC) (no. 2013
257N). The HREC-approved protocol was completed in December
2016. Formal consent was received from all participants. All recorded
data were de-identified and coded, and the results aggregated to fur-
ther protect the privacy of participants. No case could be identified by
location. Permission to use the WHOQOL-BREF was received from
World Health Organization Health Statistics and Health Information
2.3 |Data collection
The LTC-QoL and WHOQOL-BREF scales were used for each con-
senting client, collected by the visiting nurse during a scheduled home
visit, and checked for completeness by the supervising nurse. Both
assessments were repeated after 12 weeks for consistency with the
residential care protocol for LTC-QoL scale usage. All pairwise data
were collated, coded, deidentified, and combined before psychometric
analysis and comparison of scores.
2.4 |Data analysis approach: Testing for reliability,
validity, and sensitivity
Reliability of the LTC-QoL scale in home care contexts was assessed
using testretest reliability and internal consistency measures. Test
retest reliability is a measure of the stability of scores over time when
no change is expected in the concept of interest. A one way random-
effects model was used for inferences concerning P-value. The Bland
Altman test (Bland & Altman, 1986) looked at the distribution of
differences in scores. It was assumed that differences were normally
distributed and that both the original test and the retest were from
the same distribution. Pairwise correlations were used to determine
whether any differences between the two tests were significant.
Internal consistency is a measure of the extent to which scale items
measure the same concept. Internal consistency was measured using
Cronbach's alpha (Cronbach, 1951; McDowell & Newell, 1987; Nun-
nally & Bernstien, 1994), inter-item correlations, and reliability
Validity was assessed using criterion validity; that is, the extent
to which the LTC-QoL scores related to an established scale for a
similar concept (in this case the WHOQOL-BREF scale). Pairwise
correlations between the total scores of the WHOQOL-BREF and
the LTC-QoL scales were produced. A sensitivity analysis was also
conducted by removing any questions that had poor testretest
reliability. All reliability and validity outcomes were reproduced in
this dataset. Values of P< .05 were considered statistically signifi-
cant. All analyses were conducted using Stata MP for Mac (ver-
sion 14).
In total, 109 (43.6%) agreed to participate and were provided with
information and assurances of privacy and confidentiality. Participants
were assessed using the LTC-QoL and WHOQOL-BREF scales. In
terms of sex, 70.6% were female and 29.4% were males. The mean
age was 81 years (Table 1).
TABLE 1 Participant demographics
1 (N = 77)
2 (N = 32)
(N = 109)
Age, years, mean
79.6 (9.0) 86.6 (7.5) 81.6 (9.2)
Female, n(%) 59 (76.6%) 18 (56.3%) 77 (70.6%)
Cultural background
Australian 31 (40.3%) –– 31 (28.4%)
English 9 (11.7%) –– 9 (8.3%)
Other 30 (39.0%) –– 30 (27.5%)
Missing 7 (9.1%) 32 (100%) 39 (35.8%)
Dementia, n(%) 1 (1.3%) 6 (18.8%) 7 (6.4%)
SD = standard deviation.
TABLE 2 Testretest reliability of the
Long-Term Care Quality-of-Life scale in
community care setting
Testretest reliability
Question Correlation Mean difference 95% CI Cases lying within 95% CI (%)
1 .163 .037 1.402, 1.475 103/109 (94.5)
2 .901 .009 1.055, 1.037 104/107 (97.2)
3 .921 .028 1.067, 1.012 105/108 (97.2)
4 .887 .055 .991, .881 93/109 (85.3)
5 .892 .064 1.056, .927 103/109 (94.5)
6 .853 .046 1.417, 1.325 105/109 (96.3)
7 .865 .102 1.085, .882 102/108 (94.4)
8 .814 .167 1.405, 1.071 105/108 (97.2)
9 .900 .101 .959, .757 91/109 (83.4)
CI = confidence interval.
3.1 |Reliability
3.1.1 |Testretest reliability
Good correlation (>.80) was found between the first and second tests
for all but the first LTC-QoL scale question: Participated in social
activities(Table 2). The mean difference in initial and subsequent
tests was not significantly different from zero for any case, suggesting
that knowledge gained from doing the first assessment did not affect
answers for the second assessment (Bland & Altman, 1986).
3.1.2 |Internal consistency
Modest but acceptable reliability (Cronbach's alpha .76) was observed
for the overall scale. Compared to other items on the scale, question
2Participated in self-care activitiesperformed less well, with item-
retest correlations being somewhat lower. However, removal of ques-
tion 2 did not improve the overall alpha significantly, so it was
retained by users as a guide to clinical follow up. Inter-item correla-
tions were low (.3), suggesting that the scale has no underlying cor-
related dimensions in this context (Table 3).
3.2 |Validity
Pairwise correlation between the LTC-QoL and WHOQOL-BREF
scale total scores was .59 (P< .001), indicating moderate-to-strong
correlation and psychometric comparability between the two scales;
that is, the two scales delivered similarly reliable scores for the same
participant with the same assessor on both the test and retest
(Figure 2).
3.3 |Sensitivity analysis
We repeated our analysis removing question 1 to see if the assump-
tion of less relevance held true; however, internal consistency
(Cronbach's α.72) and criterion validity (pairwise correlation .55,
P< .0001) were not altered; therefore, the question was retained.
The overall purpose of the present study was to see if the LTC-QoL
scale could be used in home care contexts and be available to follow
the person from home to residential care or vice versa, providing a
consistent monitoring of life quality factors. Our results for commu-
nity home care contexts indicate that the LTC-QoL scale has modest
but acceptable reliability (Nunnally & Bernstien, 1994), although lower
than that reported in the original residential care validation analysis
(McDonald, 2014). Testretest reliability for the LTC-QoL scale
showed strong correlations between initial and subsequent testing for
all questions, except the one on social activities. This was not an unex-
pected result, as opportunities for social activity differ in different
Home care environments have similarities with residential living,
but with some notable differences (Hwang, Liang, Chiu, & Lin, 2003).
In a study of hospital outpatients, home-dwelling patients were con-
cerned about recent life events, housing, financial status, and social
isolation (Bilotta et al., 2010). While recovering from acute illnesses,
TABLE 3 Internal consistency of the Long-Term Care Quality-of-Life scale (Cronbach's α)
Internal consistency
Question Observations Sign Item-test correlation Item-retest correlation Inter-item correlation Alpha
1 109 + .68 .56 .25 .72
2 108 + .43 .25 .30 .77
3 109 + .50 .34 .28 .76
4 109 + .58 .43 .27 .75
5 109 + .56 .41 .27 .75
6 109 + .72 .61 .24 .72
7 109 + .61 .47 .26 .74
8 108 + .60 .46 .26 .74
9 109 + .61 .47 .26 .74
Total .27 .76
FIGURE 2 Correlation between total scores of LTC-QoL and
WHOQoL- BREF scale. Pairwise correlation: .59 (P<.001)
participants were mostly concerned about their ability to live at home
with chronic health issues (Kane et al., 2016). Care and support deliv-
ered in a person's home requires engagement with external health
and other home services at pre-arranged times, leaving most of the
day relatively unstructured compared with residential living.
In the current study, home-dwelling patients showed very similar
demographic characteristics to the cohort that participated in the
2014 validation study. To preserve consistency with the earlier valida-
tion study, assessors followed cues devised for question 1 based on
social participation opportunities in residential living. It was antici-
pated that differences in daily routines, self-determination, and types
of assistance available at home would affect scoring among
community-dwelling participants. Following the study, nurses involved
in the data collection developed an alternative set of behavioral cues
for question1 that more accurately describe social activities at home.
Their feedback was that question 1 provides a useful guide to QoL
interventions and they want it retained in the scale.
In terms of comparison of results between the two scales, partici-
pants' responses corresponded for questions on similar topics in both
surveys. This alignment, confirmed by pairwise comparison, estab-
lishes the LTC-QoL scale as equally reliable as the WHOQOL-BREF
scale, despite some differences in questions. The WHOQOL-BREF
scale is psychometrically suitable for assessing people undergoing
time-limited treatments and tests. Differences within home care for
an older cohort of people living with communication and self-care lim-
itations limit the specificity of the scale, despite it being regarded as a
standard against which other scales might be compared to establish
validity (Von Steinbach et al., 2006).
Survey burden is an important consideration for all involved in
monitoring care services. For the older client, lengthy surveys asking
inappropriate questions can be tedious. While generic satisfaction sur-
veys might satisfy a broader management purpose (Gabriel & Bowling,
2004; Felce & Perry, 1995), surveys containing items that many older
people regard as irrelevant increase survey time. Hwang et al. (2003)
reports that the WHOQOL-BREF takes 11 minute on average to self-
complete and that questions relating to sexual activity and work
capacity are frequently left unanswered. Wood-Dauphinee (1999)
reported that people do not tolerate long questionnaires, especially if
they are repeated at regular intervals(p. 358). The ability to express
one's views is also an issue for those in long-term care, where their
input might be limited by cognitive decline and dementia-causing ill-
nesses. Following the current study, verbal feedback from the nurses
who administered both scales was that the LTC-QoL scale was much
faster and more easily completed than the WHOQOL-BREF scale.
4.1 |Study limitations
A convenience sample that might not be representative of the total
population of older Australians receiving home care was selected
because options were limited to organizations that had implemented
LTC-QoL scale assessments and home care nurses being willing to
undertake a considerable amount of work associated with collecting
data using concurrent scales over 6 months. Sample attrition is also a
consideration for this age cohort, making it impossible to retest partic-
ipants following the data-collection period. As the focus of the study
was the testing of the LTC-QoL scale within a new context, rather
than replication of the original psychometric validation of the scale,
some aspects of the previous validation were not repeated.
4.2 |Implications
Now that the LTC-QoL scale can be reliably used in residential and
community aged care, it supports the continuity of assessment and
QoL intervention planning for clients moving from one service to
another or moving between higher or lower levels of long-term
care across contexts. The availability of a single scale that can be
used across service settings supports evidence-based care and services.
The LTC-QoL scale enables services to monitor and assist older adults
transitioning between services as they adapt to changing circumstances.
Theimplicationsofthisresearchliein clinician and manager access to a
QoL scale that legitimizes interventions to strengthen elements of QoL
and maintain those that are robust. The results can be used to inform
management and clinical practice, and to benchmark care interventions
geared to enhancing life quality.
The LTC-QoL scale has acceptable testretest reliability, good internal
consistency, and criterion validity for use with older people living in a
community home care setting. It is reliable for use across residential
and community-based aged care. Good correlation between our scale
and the WHOQOL-BREF scale establishes validity. Our results show
that the continuity of assessment and understanding of individual per-
ceptions of their own life quality within context can be monitored and
recorded. The evidence gathered can be used to identify aspects of cli-
ent reactions that could benefit from supportive interventions as they
transition through different levels of the care system.
Study design: T.McD.
Data collection: T.McD. and F.R.
Data analysis: T.McD. and F.R.
Manuscript writing and revisions for important intellectual content:
The authors thank Belinda Butcher and Jane Hutchinson for statistical
advice and assistance, and the residents, staff, and managers of
ANZAC Village and Calvary Silver Circle Community Care, Australia.
Tracey McDonald
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How to cite this article: McDonald T, Russell F. Long-Term
Care Quality-of-Life Scale utility in community home care.
Nurs Health Sci. 2019;21:494500.
... Therefore, when providing care to these patients, their lives at home should be supported in accordance with their preferences and needs (4,7,8). Other priorities include the maintenance of the quality of life (QOL), covering social and role functioning (3,9), and relieving psychological distress (7). For patients with progressive illnesses, hope is a psychological state considered an inner resource and essential coping strategy for maintaining QOL (10). ...
... Providing goal-oriented care aligned with patients' preferences and needs is expected to improve QOL among older patients with terminal cancer and advanced heart failure (10,22). It has also been emphasized as the benchmark for long-term care provided for older patients (3,9,23). However, few studies have examined the association between limited life expectancy, QOL, and hope in diverse populations receiving home medical care (some of whom are expected to have long life expectancies, regardless of severe disabilities, while others have limited life expectancy). ...
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Background Spiritual care should be included in home medical care for patients with limited life expectancy. However, the effect of shortened life expectancy on patients’ quality of life (QOL) and hopes is poorly understood. Methods This multicenter cross-sectional study involved 29 home medical care centers in Japan. Exposures were life expectancy (≥ one year / ≥ six months to < one year / < six months) as assessed by home medical care physicians. The outcomes were QOL in home medical care measured via the Quality-of-Life Scale for Elderly Patients Receiving Professional Home Care (QOL-HC), the domain scores of health-related hope (“health,” “role and connectedness,” and “something to live for”), and decrease in life functioning measured using the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Linear mixed models were fitted for analyses, with the facilities treated as clusters. Results Shorter life expectancy was associated with higher WHODAS 2.0 scores and significantly lower “something to live for” scores (< six months vs. ≥ one year). In contrast, “role and connectedness” scores did not change remarkably with decreased life expectancy, whereas QOL-HC scores were significantly higher with shorter life expectancy. Conclusion Home medical care physicians who engage in spiritual care should facilitate thoughtful dialogue with their patients by recognizing declines in life functions and hope for fulfillment, which are associated with short life expectancy.
... According to relevant studies, community activities, group participation, and friendship networks are beneficial to the elderly's health condition [47]. Therefore, it is recommended that neighborhood committees and other social institutions actively mobilize party members or other volunteers in the community to establish a one-onone assistance mechanism with the disabled elderly, so as to provide psychological care and support, and assist disabled elderly people to receive medications from hospitals and accompany them to receive medical treatment or other services. ...
... Therefore, society should promote the concept of respecting and loving the elderly, attract more enterprises to invest in the elderly care services market, establish a comprehensive regulatory system to encourage benign competition and improve the market climate of home care services. In this way, on the one hand, it can meet the demands of the disabled elderly and their families, thus liberating family labor [47]. On the other hand, a competitive care services market will help companies keep improving and provide better services in home care [48]. ...
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Background Currently, population aging has been an obstacle and the spotlight for all countries. Compared with developed countries, problems caused by China’s aging population are more prominent. Beijing, as a typical example, is characterized by advanced age and high disability rate, making this capital city scramble to take control of this severe problem. The main types of care for the disabled elderly are classified as home care, institutional care, and community care. With the obvious shortage of senior care institutions, most disabled elderly people are prone to choose home care. This kind of elderly care model is in line with the traditional Chinese concept and it can save the social cost of the disabled elderly to the greatest extent. However, home care for the disabled elderly is facing bumps from the whole society, such as lack of professional medical care, social support and humanistic care, and the care resources provided by a single subject cannot meet the needs of the disabled elderly. Objective Based on the demands of the disabled elderly and their families, this study aims to explore the current status of home care service, look for what kind of care is more suitable for the disabled elderly, and try to find an appropriate elderly care mechanism which could meet the diverse needs of the disabled elderly. Methods A total of 118 disabled elderly people and their primary caregivers were selected from four districts of Beijing by using multi-stage stratified proportional sampling method. A one-to-one and semi-structured in-depth qualitative interview were conducted in the study to find out the health status of the disabled elderly, the relationship between the disabled elderly and their primary caregivers, and utilization of elderly care resources, etc. The views of the interviewees were analyzed through the thematic framework method. All the methods were carried out in accordance with relevant guidelines and regulations. Results The results showed that the average age of 118 disabled elderly is 81.38 ± 9.82 years; 86 (72.9%) are severe disability; 105 (89.0%)are plagued by chronic diseases; the average duration of disability is 5.63 ± 5.25 years; most of disabled elderly have 2 children, but the primary caregiver are their own partner (42, 35.6%), and there is an uneven sharing of responsibilities among the disabled elderly's offspring in the process of home care. The disabled elderly enjoy medical care services, rehabilitation training, daily health care, psychological and other demands. However, the disabled elderly and their families in Beijing face a significant financial burden, as well as physical and psychological issues. The care services provided by the government, family doctors, family members and social organizations fall far short of satisfying the diverse care needs of the disabled elderly. Conclusions In order to effectively provide home care services for the disabled elderly, it is therefore necessary to establish a coordination mechanism of multiple subjects and give full play to the responsibilities of each subject. This study proposes a strengthening path for the common cooperation of multiple subjects, which taking specific responsibilities and participating in the home care for the disabled elderly: (1) The government should give full play to the top-level leading responsibilities and effectively implement people-oriented measures to the disabled elderly. (2) Family doctors strengthen their responsibilities as health gatekeepers and promote continuous health management of the disabled elderly. (3) Family members assume the main responsibility and provide a full range of basic care services. (4) Social forces promote supplementary responsibilities of public welfare and expand the connotation of personalized care services. (5) The disabled elderly should shoulder appropriate personal responsibility and actively cooperate with other subjects.
... To assess care management, previous studies used the Quality of Care Management Process Measurement scale, which evaluates the basic process of care management 8 ; care management task implementation and self-assessment scales, which measures the subjective difficulty of managing care 9 and implementation of the minimum tasks required 10 ; a scale that evaluates care management not by CMs, but by patients and medical professionals in hospitals 11 ; instruments to measure disease care management; 12,13 scales that measure factors, such as the burden on informal caregivers 14,15 ; a scale for older adults' perception of quality life of in long-term care 16 ; and instruments focused on palliative and terminal care at hospital. 17,18 However, no scale yet evaluates care management practices from a long-term perspective in the end-of-life period at home, not limited to palliative or terminal care. ...
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Aim: To develop an end-of-life care management scale to assess care for older adults who wish to remain at home, and examine its reliability and validity. Methods: An item pool was created based on a literature review, and the 46-item, tentative version of end-of-life care management scale was developed. Next, a cross-sectional survey was conducted with 2583 care managers using a self-reported questionnaire. An exploratory factor analysis was used to evaluate the scale's internal consistency using Cronbach's alpha. Intra-rater reliability was evaluated using the correlation with a repeat test. Construct validity and criterion-related validity were determined using a confirmatory factor analysis, and correlations between this scale and previous scales, respectively. Results: Valid responses were obtained from 477 care managers. Exploratory factor analyses identified 23 items from four factors: "further the teamwork to realize the individual's wishes," "rapid care planning that anticipates changes in the situation," "support to family members preparing for end-of-life care at home" and "support to become familiar with the older adult's views of life, death and suffering." Cronbach's alpha was 0.819 for the entire scale and ≥0.709 for each factor. The intraclass correlation coefficient of the test-retest ranged from 0.756 to 0.863. The correlation coefficients between the previous scales and the entire scale ranged from 0.569 to 0.795 (P < 0.001). Conclusions: The scale showed acceptable internal consistency and concurrent validity. Care managers' use of this scale might improve quality of care management and fulfil older adults' wishes to remain at home during the end-of-life period. Geriatr Gerontol Int 2022; ••: ••-••.
... Therefore, society should promote the concept of respecting and loving the elderly, attracting more enterprises to invest in elderly care services market, establish a comprehensive regulatory system to encourage benign competition and improve market climate of home care services. In this way, on the one hand, it can meet the demands of the disabled elderly and their families, thus liberating family labor [37]; on the other hand, a competitive care services market will help companies keep improving and provide better services in home care[38]. ...
Full-text available
Background: Currently, population aging has been an obstacle and the spotlight for all countries. Compared with developed countries, problems caused by China’s aging population are more prominent. Beijing, as a typical example, is characterized by advanced age and high disability rate, making this capital city scramble to take control of this severe problem. Moreover, influenced by traditional culture, disabled elderly people prefer to stay at home rather than go to nursing home. Home care for the disabled elderly is facing pushback from the whole society, such as lack of professional medical care, social support and humanistic care, and the care resources provided by a single department cannot meet the needs of the disabled elderly. Therefore, in order to meet the diverse needs of the disabled elderly and improve their quality of life, it is urgent to strengthen joint efforts of the government, society, family members, etc., and establish a collaborative mechanism to provide home-based care resources more efficiently and accurately. Objective: Based on the demands of the disabled elderly and their families, this study aims to explore the current status of homse care service supply process that multiple subjects involved in, and to give some advice on how to build a multi-subject coordination mechanism of home care for the disabled elderly in Beijing. Methods: A total of 118 disabled elderly people and their primary caregivers were selected from four districts of Beijing by using multi-stage stratified proportional sampling method. A one-to-one and semi-structured in-depth qualitative interview study was conducted in the study to find out the health status of the disabled elderly, the relationship between the disabled elderly and their primary caregivers, and utilization of elderly care resources, etc. Thematic framework analysis was utilized, the researchers summarized six aspects to express. All the methods were carried out in accordance with relevant guidelines and regulations. Results: Multiple subjects (such as the society, government, family doctors, family members and the elderly themselves) play a large role in the home care. But there is a lot of space need to improve, including a lack of high levels of interaction. In internal factors, the qualitative research results showed that the average age of 118 disabled elderly is 81.38±9.82 years; 72.9% (86) is severe disability; 89.0% (105)is plagued by chronic diseases; the average duration of disability is 5.63±5.25 years; disease is the principal cause of disability(95, 80.51%); the psychological problems of the disabled elderly are prominent; and the disabled elderly are not aware of the relevant pension policies; most of disabled elderly have 2.56±1.44 children, but the primary caregiver is their own partner (42, 35.6%), and there is an uneven sharing of responsibilities for the disabled elderly among their offspring in the process of home care. In external factors terms, the demands of the disabled elderly in home are not yet met; the disability subsidy is low and not in full coverage. As a result, establishing multi-subject coordination mechanism of home care for the disabled elderly has further to run. Conclusions: In a nutshell, the disabled elderly and their families in Beijing grapple with heavy financial burden, physical and psychological problems; however, the current home care provided by multiple subjects is insufficient and is short of a multi-subject coordination mechanism. Therefore, more home care services should be considered and better cooperation among multiple subjects should be set up for the disabled elderly and their caregivers. Specifically, family members act as the guardians of the disabled elderly, they should take more responsibility for the daily lives’ care, like creating a warm and family-friendly atmosphere and giving more time to stay together and so forth; family doctors should provide professional technical guidance and assist other subjects to participate in the process of home care; the government should establish relevant pension policies, and unveil more incentive policies to encourage more family doctors and social groups to create a concerted effort ; social groups as a supplementary role to provide care services at need and promote the development of the service industry. Multi-subject coordination mechanism represents different subjects bearing respective responsibility for the disabled elderly, reducing the financial burden is the top priority to solve. Keeping consistency in the goals of multiple subjects, expanding the participation and health care service and enhancing cooperation is essential, the cooperation among multiple subjects exert each other’s advantages on home care leading to providing home care resources more efficiently and accurately. Multi-subject coordination mechanism working well and closely ensures a positive future for the disabled elderly.
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Background Quality of life (QoL) outcomes are used to monitor quality of care for older adults accessing aged care services, yet it remains unclear which QoL instruments best meet older adults’, providers’ and policymakers’ needs. This review aimed to (1) identify QoL instruments used in aged care and describe them in terms of QoL domains measured and logistical details; (2) summarise in which aged care settings the instruments have been used and (3) discuss factors to consider in deciding on the suitability of QoL instruments for use in aged care services. Design Systematic review. Data sources MEDLINE, EMBASE, PsycINFO, Cochrane Library and CINAHL from inception to 2021. Eligibility criteria Instruments were included if they were designed for adults (>18 years), available in English, been applied in a peer-reviewed research study examining QoL outcomes in adults >65 years accessing aged care (including home/social care, residential/long-term care) and had reported psychometrics. Data extraction and synthesis Two researchers independently reviewed the measures and extracted the data. Data synthesis was performed via narrative review of eligible instruments. Results 292 articles reporting on 29 QoL instruments were included. Eight domains of QoL were addressed: physical health, mental health, emotional state, social connection, environment, autonomy and overall QoL. The period between 1990 and 2000 produced the greatest number of newly developed instruments. The EuroQoL-5 Dimensions (EQ-5D) and Short Form-series were used across multiple aged care contexts including home and residential care. More recent instruments (eg, ICEpop CAPability measure for Older people (ICECAP-O) and Adult Social Care Outcomes Toolkit (ASCOT)) tend to capture emotional sentiment towards personal circumstances and higher order care needs, in comparison with more established instruments (eg, EQ-5D) which are largely focused on health status. Conclusions A comprehensive list of QoL instruments and their characteristics is provided to inform instrument choice for use in research or for care quality assurance in aged care settings, depending on needs and interests of users.
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We aimed to develop a graphical procedure for benchmarking quality of life care results using the Long‐Term Care Quality of Life (LTC‐QoL) scale. While clinical care quality benchmarking is now well established, similar research for quality of life (QOL) aged care benchmarking has received scant attention. Data from 10 facilities utilizing the LTC‐QoL scale were analysed to establish baseline statistics for developing a graphical procedure for QOL benchmarking. Client LTC‐QoL records were tested with varimax rotation factor analysis revealing three viable benchmarking themes: B1 (Self‐efficacy), B2 (supporting relationships), and B3 (outlook on life) were selected for benchmark development utilizing Analysis of Means to generate graphical outputs using Minitab version 17.3.1. In this way, in the absence of verified industry standards, it is possible to compare organizations providing similar services using the same indicators, against group averages. In conclusion, the benchmarking protocol produced comparative information on three benchmarks for 10 facilities. Similar analysis is feasible for a single facility over time. The results of these analyses provide evidence for on‐site discussion of quality of life care quality performance.
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Minnesota’s Return to Community Initiative (RTCI) is a novel, statewide initiative to assist private paying nursing home residents to return to the community and to remain in that setting without converting to Medicaid. The objective of this manuscript is to describe in detail RTCI’s development and design, its key operational components, and characteristics of its clients and their care outcomes. Data on client characteristics and outcomes come from the Minimum Data Set, staff assessments of clients and caregivers, and Medicaid eligibility files. Most clients transitioned by the RTCI had entered the nursing facility from a hospital. Clients overwhelmingly wanted to return to the community and fit a health and functional profile making them good candidates for community discharge. Most clients went to a private residence, living alone or with a spouse; yet, adult children were the most frequent caregivers. At one year of follow-up 76% of individuals were alive and living in the community and only a small percentage (8.2%) had converted to Medicaid. The RTCI holds promise as a successful model for states to adopt in assisting individuals who are at risk to become long stay nursing home residents instead to return to the community.
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Purpose: The aim of this study was to identify modifications in health, economic and social determinants of quality of life (QoL) in community-dwelling older adults when using different cut-offs to defining favorable QoL. Methods: Data of year 2011 annual assessment in 1003 older men and women from the Lc65+ cohort study were used. Overall QoL was self-rated as 'excellent,' 'very good,' 'good,' 'fair,' or 'poor.' To identify significant health (self-rated health, SF-12v2 physical and mental health), economic (financial situation), and social (living with others, being socially supported, emotional support, group activities participation) determinants of QoL, a cut-off was set at three different positions to define favorable QoL on the 'excellent' to 'poor' spectrum: at least 'good' (model 1); at least 'very good' (model 2); and 'excellent' only (model 3). Results: In all three models, bivariable analyses indicated significant associations between QoL and at least one variable from each health, economic, and social dimension. In multivariable analyses, only health-related variables remained significantly associated with QoL in model 1. Model 3 additionally retained financial situation. In model 2, QoL was positively associated with physical health [odds ratio (OR) 1.10, p < 0.001], mental health (OR 1.12, p < 0.001), self-rated health (OR 2.43, p < 0.001), group activities participation (OR 1.43, p = 0.037), being socially supported (OR 1.58, p = 0.024), and not reporting financial difficulties (OR 1.76; p = 0.036). Conclusions: Using different cut-offs to defining favorable QoL results in important changes in the number and type of significant health, economic and social determinants. A cut-off between 'good' and 'very good' appears to best reflect the multidimensional nature of QoL.
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Background This paper describes the methods and results of a systematic review to identify instruments used to measure quality of life outcomes in older people. The primary focus of the review was to identify instruments suitable for application with older people within economic evaluations conducted in the aged care sector. Methods Online databases searched were PubMed, Medline, Scopus, and Web of Science, PsycInfo, CINAHL, Embase and Informit. Studies that met the following criteria were included: 1) study population exclusively above 65 years of age 2) measured health status, health related quality of life or quality of life outcomes more broadly through use of an instrument developed for this purpose, 3) used a generic preference based instrument or an older person specific preference based or non-preference based instrument or both, and 4) published in journals in the English language after 2000. Results The most commonly applied generic preference based instrument in both the community and residential aged care context was the EuroQol - 5 Dimensions (EQ-5D), followed by the Adult Social Care Outcomes Toolkit (ASCOT) and the Health Utilities Index (HUI2/3). The most widely applied older person specific instrument was the ICEpop CAPability measure for Older people (ICECAP-O) in both community and residential aged care. Conclusion In the absence of an ideal instrument for incorporating into economic evaluations in the aged care sector, this review recommends the use of a generic preference based measure of health related quality of life such as the EQ-5D to obtain quality adjusted life years, in combination with an instrument that has a broader quality of life focus like the ASCOT, which was designed specifically for evaluating interventions in social care or the ICECAP-O, a capability measure for older people.
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Purpose: New patient reported outcome (PRO) measures are regularly developed to assess various aspects of the patients' perspective on their disease and treatment. For these instruments to be useful in clinical research, they must undergo a proper psychometric validation, including demonstration of cross-sectional and longitudinal measurement properties. This quantitative evaluation requires a study to be conducted on an appropriate sample size. The aim of this research was to list and describe practices in PRO and proxy PRO primary psychometric validation studies, focusing primarily on the practices used to determine sample size. Methods: A literature review of articles published in PubMed between January 2009 and September 2011 was conducted. Three selection criteria were applied including a search strategy, an article selection strategy, and data extraction. Agreements between authors were assessed, and practices of validation were described. Results: Data were extracted from 114 relevant articles. Within these, sample size determination was low (9.6%, 11/114), and were reported as either an arbitrary minimum sample size (n = 2), a subject to item ratio (n = 4), or the method was not explicitly stated (n = 5). Very few articles (4%, 5/114) compared a posteriori their sample size to a subject to item ratio. Content validity, construct validity, criterion validity and internal consistency were the most frequently measurement properties assessed in the validation studies. Approximately 92% of the articles reported a subject to item ratio greater than or equal to 2, whereas 25% had a ratio greater than or equal to 20. About 90% of articles had a sample size greater than or equal to 100, whereas 7% had a sample size greater than or equal to 1000. Conclusions: The sample size determination for psychometric validation studies is rarely ever justified a priori. This emphasizes the lack of clear scientifically sound recommendations on this topic. Existing methods to determine the sample size needed to assess the various measurement properties of interest should be made more easily available.
Issues of life quality and what that means for the very old in the population who are ageing and becoming frail in large numbers require new thinking regarding a practical application of quality of-life theory to enhance the experience of living in aged care contexts. Quality of life also has importance for care providers wishing to judge the quality of their services. Assumptions that disease and disability dictate life quality undermine the centrality of individual experiences, and assumptions regarding spirituality and religion can confuse approaches to services offered to a cohort of people whose focus is on spiritual well-being. Information gathered on aged care residents’ experiences of life quality can focus attention on supporting positive experiences during late age. If the potential for quality of life is strengthened, individual pursuit of higher meaning may be fostered. Appropriate support and care within care services can be enhanced through reliable assessment of factors that sustain quality of life. It is argued that quality of life can exist separately from disease or disability, that spirituality and religion are not synonymous, and that concepts of life quality and spirituality are not causally related and are therefore more reliably assessed as separate phenomena.
Aim: To develop and validate a scale that assesses quality of life in patients receiving home-based medical care. Methods: A new quality of life scale was developed and evaluated in four phases: (i) item generation; (ii) first field study with a 14-item questionnaire; (iii) preliminary validation study, to reduce the number of items to four; and (iv) second field study comprising 40 patients, to evaluate the validity of the final version. Participants were requested to answer both the final version of the scale and the Short Form-8, to enable identification of any relationship between the two. Results: Items were generated after discussions with doctors and care managers, and 14 items were selected for the draft version. In the preliminary validation study, 10 items were deleted, based on the results of statistical analysis of the data from the first field study. A psychometric analysis showed that the final four-item questionnaire had internal consistency (Cronbach's α = 0.7), and a significant association with the Short Form-8. Conclusions: We created the first quality of life scale for patients receiving home-based medical care. The scale's internal consistency was confirmed, as well as its external validity. This scale can be used independently of factors such as a patient's age, sex, level of independence in the presence of dementia or disability, swallowing function, hearing ability and communication ability, and can be used with ease in routine clinical practice. Geriatr Gerontol Int 2016; ●●: ●●-●●.
One effect of rising health care costs has been to raise the profile of studies that evaluate care and create a systematic evidence base for therapies and, by extension, for health policies. All clinical trials and evaluative studies require instruments to monitor the outcomes of care in terms of quality of life, disability, pain, mental health, or general well-being. Many measurement tools have been developed, and choosing among them is difficult. This book provides comparative reviews of the quality of leading health measurement instruments and a technical and historical introduction to the field of health measurement, and discusses future directions in the field. This edition reviews over 100 scales, presented in chapters covering physical disability, psychological well-being, anxiety, depression, mental status testing, social health, pain measurement, and quality of life. An introductory chapter describes the theoretical and methodological development of health measures, while a final chapter reviews the current status of the field, indicating areas in which further development is required. Each chapter includes a tabular comparison of the quality of the instruments reviewed, followed by a detailed description of each instrument, covering its purpose and conceptual basis, its reliability and validity, alternative versions and, where possible, a copy of the scale itself. To ensure accuracy, each review has been approved by the original author of each instrument or by an acknowledged expert.
The issue of life quality for older people admitted for long-term care is of concern to those keen to provide services that support an acceptable quality of life. This study investigates measurement characteristics of the long-term care quality of life (LTC-QoL) assessment scale developed to address a gap in quality in life assessment in such contexts, i.e. an easy to use single scale generating summary information on the life quality experienced by all older adults in care, indicating aspects requiring attention from direct care personnel and providing management information on individual and care unit outcomes in supporting residents' experiences of life quality. Analysis of repeated LTC-QoL data for 62 long-term residents in an Australian aged care facility establishes the instrument as having good reliability and validity. Exploratory factor analysis of nine items revealed high internal consistency, good test–retest reliability, and validity across age, gender, and cognitive capacity of participants. Findings establish that the LTC-QoL has adequate reliability and dimensionality. Content validity and management utility were verified by experts using and refining the scale over 7 years in long-term care contexts, resulting in an easy to use and reliable assessment tool for long-term care recipients.