The Development of a Quality of Life Scale for Informal Carers for Older Adults.
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SUBMITTER: Maltby J
PROVIDER: S-EPMC7238784 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:IntroductionFamily carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care.MethodWe designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad.FindingsIn a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables.ConclusionThis is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.
| S-EPMC7678960 | biostudies-literature
Project description:BackgroundWe aim to describe the health-related quality of life of informal carers and their experiences of primary care.MethodsResponses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).ResultsInformal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.ConclusionsInformal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.
| S-EPMC4446949 | biostudies-literature
Project description:ObjectivesCarer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A).MethodsValidity and responsiveness were assessed in a UK sample of informal carers of adults with dementia, stroke, mental illness, or rheumatoid arthritis. A questionnaire containing the 5 QoL measures was posted to carers identified through the Family Resources Survey (N = 1004). Hypotheses regarding the anticipated associations between constructs related to the QoL of carers were tested to investigate construct validity and responsiveness.ResultsEach measure exhibited some level of construct validity. In general, larger effect sizes and stronger associations were detected for the ASCOT-Carer and ICECAP-A measures in the pooled sample and across all conditions. The 5 measures did not exhibit clear responsiveness to changes over a 12-month period in care recipient health status or hours of care provided per week.ConclusionThe results of this study provide initial evidence of the validity of care-related, health-related, and generic QoL (capability) measures in informal carers of adults with 4 highly prevalent conditions. Care-related measures were not always more sensitive to constructs associated with QoL of carers compared with generic measures. The performance of the ICECAP-A was comparable with that of the best-performing care-related measure, the ASCOT-Carer.
| S-EPMC7532692 | biostudies-literature
Project description:BackgroundIn the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this.MethodsA systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties.ResultsTen instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer's Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population.ConclusionThe CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.
| S-EPMC5851581 | biostudies-literature
Project description:We describe theoretical background, development, and piloting of a measure for quality of life in older adults that specifically takes into account the subjective perspective. Although quality of life is usually subjectively assessed, normative thresholds for "the good life" are most often set by a third party. The new tool FLQM asks for respondents to name, rate, and weight those domains in life that are most important for their life-satisfaction solely from their own point of view. Construct validity was pilot-tested in two samples of elders (N1 = 44; N2 = 90). Correlations were in the medium range in both studies and support the questionnaire's validity. There were no age or gender differences on total score. However, in Study 1 as well as in Study 2 older subjects named significantly fewer domains than did younger participants. Further, in Study 1 the overall number of distinct domains generated by the participants diminished with age-the "interindividual pool of domains" shrank. Implications of this age-associated narrowing of domainscope are discussed on a background of adaptation theories. Concluding, the new questionnaire seems apt to assess older peoples' quality of life even in a physically very ill population, but needs further testing, especially regarding its reliability. This is currently being undertaken in a larger longitudinal sample to assure psychometric properties.
| S-EPMC5547354 | biostudies-other
Project description:BackgroundProviding unpaid support to family and friends with disabling health conditions can limit a carer's capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically.MethodsThis study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers.ResultsSignificantly more mental health carers were not employed (42.3%, 95% CI: 36.6-48.1) compared to non-carers (24.0%, 95% CI: 23.5-24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8-22.8, vs. non-carers: 11.7%, 95% CI: 11.3-12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5-28.7, vs. non-carers: 15.7, 95% CI: 15.1-16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6-39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2-38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1-21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35-54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed.ConclusionsThese results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.
| S-EPMC6524279 | biostudies-literature
Project description:BackgroundMusic therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement).MethodsEligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration.ResultsA total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes.ConclusionsQualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs.Systematic review pre-registrationPROSPERO [CRD42021244859].
| S-EPMC10898157 | biostudies-literature
Project description:BACKGROUND: Health-related quality of life (HRQOL) is a key outcome in arthritis, but few population-based studies have examined the relationship of specific arthritic conditions, such as osteoarthritis (OA) and rheumatoid arthritis (RA) with HRQOL. METHODS: Older adults in Pennsylvania completed a mail version of the Centers for Disease Control and Prevention (CDC) HRQOL modules. Medicare data were used to identify subjects with OA, RA, and no arthritis diagnosis. We compared HRQOL responses among these groups, and we also examined relationships of demographic characteristics to HRQOL among subjects with arthritis. RESULTS: In analyses controlling for demographic characteristics and comorbidity, subjects with OA and RA had poorer scores than those without arthritis on all HRQOL items, including general health, physical health, mental health, activity limitation, pain, sleep, and feeling healthy and full of energy. HRQOL scores were also lower for those with RA compared to OA. Among individuals with arthritis, all subject characteristics (including age, race, sex, nursing home residence, marital status, income, and comorbid illnesses) were significantly related to at least one HRQOL item. Older age, nursing home residence, and greater comorbidity were the most consistently associated with poorer HRQOL. CONCLUSIONS: Results of this study show that both OA and RA have a significant impact on multiple dimensions of HRQOL among older adults. Results also suggest the CDC HRQOL items are suitable for use among older adults and in mail surveys. Due to the rising number of older adults in many countries, the public health burden of arthritis is expected to increase dramatically. Efforts are needed to enhance access to medical care and disseminate self-management interventions for arthritis.
| S-EPMC324570 | biostudies-literature
Project description:The objectives of this study are to detect the main components of global quality of life (QoL) of community-dwelling older adults from their own perspective and to identify determinants of health-related and global QoL in the same population. This is a cross-sectional study covering a representative sample of 1,106 community-dwelling adults aged 60 years and older residing in Spain. The survey collected information on QoL through a face-to-face interview asking for QoL components in free-format, as well as the completion of two QoL measures, the EQ-5D and the Personal Wellbeing Index. The most important QoL dimensions, according to the participants of this study, were health, family, and finances. Depression was the main determinant of both QoL indices, while functional independence and social support specifically influenced health-related and global QoL, respectively. Based on the perspective of the older adults as well as on statistical analysis, this work emphasizes the importance of health, family, and social support as areas of special interest in aging. There was a discrepancy when comparing findings related to the importance of financial status. Results also support that global and health-related QoL share some common determinants, but with different weights for functional independence and social support.
| S-EPMC5547413 | biostudies-other
Project description:PurposeInformal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure.MethodsWe purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach.Result and conclusionOur comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.
| S-EPMC8567876 | biostudies-literature