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The Development of a Quality of Life Scale for Informal Carers for Older Adults.

ABSTRACT: Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Questionnaire with newly added items to define both traditional and nontraditional informal care roles. Results: Findings suggest a 24-item quality of life scale with a six-factor structure to caring for older adults that assesses (a) exhaustion, (b) adoption of a traditional carer role, (c) personal growth, (d) management and performance, (e) level of support, and (f) financial matters. Conclusion: We present a new scale to assess the multidimensional aspects of quality of life among those caring for older adults.

SUBMITTER: Maltby J

PROVIDER: S-EPMC7238784 | biostudies-literature | 2020 Jan-Dec

REPOSITORIES: biostudies-literature

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The Development of a Quality of Life Scale for Informal Carers for Older Adults.

Maltby John J Hogervorst Eef E Stephan Blossom B Sun Xu X Tang Pinyan P Law Effie E Mukaetova-Ladinska Elizabeta B EB

Gerontology & geriatric medicine 20200101

Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Q ...[more]

PMID: 32490040

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Project description:IntroductionInclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community.MethodsA qualitative exploratory design was used with mixed-methods data collection. Seventeen semi-structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community-based advocacy and aged care providers; and eight semi-structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed.FindingsAll carers described the main social challenge that they needed to address in transitional care as 'Needing to sustain family'. Carers reported their social needs across five solutions: 'Partnering with carers', 'Advocating for discharge', 'Accessing streamlined multidisciplinary care', 'Knowing how to care' and 'Accessing follow-up care in the community'. Focus group participants endorsed the findings from the carer interviews and added the theme 'Putting responsibility back onto carers'. All healthcare practitioners described the main social challenge that they needed to address as 'Needing to engage carers'. They reported their social solutions in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'.DiscussionFindings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult.ConclusionsFuture sustainable and high-quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated.Public contributionThis study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community-based organizations providing care and advocacy support to informal carers.

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.

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.

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The Development of a Quality of Life Scale for Informal Carers for Older Adults.

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The Development of a Quality of Life Scale for Informal Carers for Older Adults.

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