Abstract
PurposeThe Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) can be used to assess long-term care-related quality of life (LTC-QoL) of adult informal carers of persons using LTC services. The ASCOT-Carer instrument has been translated into several languages, but preference weights reflecting the relative importance of different outcome states are only available for England so far. In this paper, we estimated preference weights for the German version of the ASCOT-Carer for Austria and investigated the value people place on different QoL-outcome states.MethodsWe used data from a best–worst scaling (BWS) experiment and estimated a scale-adjusted multinomial logit (S-MNL) model to elicit preference weights for the ASCOT-Carer domain-levels. Data were collected using an online survey of the Austrian general population (n = 1001).ResultsTop levels in the domains of ‘Space and time to be yourself’, ‘Occupation’ and ‘Control over daily life’ were perceived as providing the highest utility, and states with high needs in the same domains seen as particularly undesirable. ‘Personal safety’ was the only domain where levels were roughly equidistant. In all other domains, the difference between the top two levels (‘ideal state’ and ‘no needs’) was very small.ConclusionThe paper provides preference weights for the German version of ASCOT-Carer to be used in Austrian populations. Furthermore, the results give insight into which LTC-QoL-outcomes are seen as particularly (un)desirable, and may therefore help to better tailor services directed at informal carers and the persons they care for.
Highlights
Informal care is a major resource in enabling people with long-term care (LTC) needs to age in place [1]
This paper aims to provide preference weights for the German version of the ASCOT-Carer instrument for use in Austria, generated from a best–worst scaling (BWS) experiment, and to shed light on the relative importance of different ASCOT-Carer quality of life (QoL)-outcome-states
Coefficients represent the relative values assigned to the QoL-states and decreased monotonically within each domain, with level 1 having the highest value and level 4 the lowest
Summary
Informal care (care and support provided by relatives or nonkin) is a major resource in enabling people with long-term care (LTC) needs to age in place [1]. In aging societies, limiting direct and indirect costs on family and non-kin carers and improving their health and quality of life (QoL) is key for LTC policy to ensure the long-run availability of informal care. European countries, having recognised the role of informal carers and the impact of the caring role on their lives, have started to set up support systems to assist caring of family members and, but less commonly, of non-kin [7]. LTC policies differ in their logic for providing support to informal carers depending on whether providing care for care-dependent adults is considered a public responsibility or mainly delegated to family members, leading to different service types and arrangements [8]. In order to support Austrian informal carers in their caring roles, a more in-depth understanding of both the QoL-impact of publicly supported services and the desirability or preference of certain carer-relevant QoL-outcomes is needed
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