Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Rand, Stacey; Malley, Juliette; Netten, Ann; Forder, Julien E.

doi:10.1007/s11136-015-1011-x

Cited by 53 publications

(134 citation statements)

References 49 publications

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“…by telephone or face‐to‐face) because it may result in systematic bias due to social desirability bias or other factors (Bowling, ). In another study based on the sample analysed here, it was found that carers interviewed by telephone reported lower quality of life compared to those who completed the interview face‐to‐face (Rand et al, ).…”

Section: Methodsmentioning

confidence: 80%

“…Carer care‐related quality of life is an overarching outcome indicator, which captures aspects of quality of life valued by carers and that also may be affected by long‐term care support (e.g. carer support groups, short‐term breaks) (Netten et al, ; Rand & Malley, ; Rand et al, ). The focus on carers’ quality of life outcomes reflects the wider repositioning of carers as co‐clients whose own needs and outcomes should be considered by long‐term care services (Rand & Malley, ).…”

Section: Discussionmentioning

confidence: 99%

“…Unpaid carers were identified through a survey of adults with care needs related to physical disability, sensory impairment, mental health problems, or intellectual disabilities and who used community‐based services in 22 English local authorities between June 2013 and March 2014. The survey was part of a study of care‐related quality of life of adults who use care services and their carers in England, which has been reported elsewhere (Forder et al, ; Rand, Malley, Forder, & Netten, ).…”

Section: Methodsmentioning

confidence: 99%

“…The ASCOT‐Carer interview (INT4) is a measure of care‐related quality of life (that is, aspects of quality of life, beyond health, that may be influenced by long‐term care services and are valued by carers) (Rand & Malley, ; Rand et al, ; Rand, Malley, & Netten, ). The ASCOT‐Carer (Rand & Malley, ; Rand et al, ) is an extended version of the Carer CRQoL (Fox, Holder, & Netten, ; Malley, Fox, & Netten, ). It is included as an overarching outcome indicator in the English Adult Social Care Outcomes Framework (ASCOF) (Department of Health, ).…”

Section: Methodsmentioning

confidence: 99%

See 3 more Smart Citations

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

Rand

Malley

Forder

2018

Health Soc Care Community

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In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers' choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care-recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care-related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer-reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care-recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care-giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers' choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care-recipients and also their carers.

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Section: Methodsmentioning

confidence: 80%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

Rand

Malley

Forder

2018

Health Soc Care Community

View full text Add to dashboard Cite

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“…This is a validated instrument for measuring CRQoL of informal unpaid carers who care for adults with a variety of long‐term conditions, disability or problems related to old age (Malley, Fox, & Netten, ; Rand, Malley, Netten, & Forder, ; Smith, Fox, & Holder, ). ASCOT‐Carer covers seven domains: spending time on valued or enjoyable activities, having control over daily life, looking after oneself, feeling safe, having social contact, having space and time to be oneself and feeling encouraged and supported in the caring role (Rand et al, ). Each domain has four response categories from ‘no needs' to ‘high levels of needs'.…”

Section: Methodsmentioning

confidence: 99%

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Longo

Faria

Parker

et al. 2019

Health Soc Care Community

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Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.

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What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the development of the EQ-HWB?

et al. 2021

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Economic evaluation combines costs and benefits to support decision-making when assessing new interventions using preference-based measures to measure and value benefits in health or health-related quality of life. These health-focused instruments have limited ability to capture wider impacts on informal carers or outcomes in other sectors such as social care. Sector-specific instruments can be used but this is problematic when the impact of an intervention straddles different sectors.An alternative approach is to develop a generic preference-based measure that is sufficiently broad to capture important cross-sector outcomes. We consider the options for the selection of domains for a cross-sector generic measure including how to identify domains, who should provide information on the domains and how this should be framed. Beyond domain identification, considerations of criteria and stakeholder needs are also identified.This paper sets out the case for an approach that relies on the voice of patients, social care users and informal carers as the main source of domains and describes how the approach was operationalised in the ‘Extending the QALY’ project which developed the new measure, the EQ-HWB (EQ health and wellbeing instrument). We conclude by discussing the strengths and limitations of this approach. The new measure should be sufficiently generic to be used to consistently evaluate health and social care interventions, yet also sensitive enough to pick up important changes in quality of life in patients, social care users and carers.

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Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Cited by 53 publications

References 49 publications

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the development of the EQ-HWB?

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