Abstract
PurposeThe Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), developed in England, measures the effects of long-term care (LTC) services and carer support on informal carers’ quality of life (QoL). Translations of the ASCOT-Carer into other languages are useful for national and cross-national studies. The aim of this paper was to report on the translation and cultural adaptation of the original English ASCOT-Carer into German, to assess its content validity and to test for its construct validity (convergent and discriminative/known-group validity).MethodsTranslation and cultural adaptation followed the ISPOR TCA guidelines. As part of the translation and adaptation process, five cognitive debriefing interviews with informal carers were used for evaluating linguistic and content validity. In addition, a sample of 344 informal carers of older adults, who received home care services in Austria, was used for hypothesis testing as suggested by the COSMIN checklist to assess convergent and discriminative/known-group validity as part of construct validity.ResultsCognitive interviews provided evidence that questions and response options of the German ASCOT-Carer were understood as intended. Associations between ASCOT-Carer scores/domains and related outcome measures (convergent validity) and expected groups of informal carers and the care service users they care for (discriminative validity) supported construct validity of the translated instrument.ConclusionThe German ASCOT-Carer instrument meets the required standards for content and construct validity which supports its usefulness for (cross-)national studies on LTC-service-related QoL-outcomes in informal carers. Research is encouraged to assess further measurement properties of the translated instrument.
Highlights
Policymakers have recognized the crucial role of informal carers in supporting older and frail family members, friends, and neighbors and have since implemented benefits to improve their status and well-being [1]
We report on the results of assessing linguistic and content validity as part of the translation and adaptation process
The translation and cultural adaptation according to ISPOR TCA guidelines aimed to develop a German version of the ASCOT-Carer instruments (INT4, SCT4) that has sufficient linguistic, content and construct validity and can be employed in German-speaking surveys as a measure of long-term care related quality of life (LTCQoL) of informal carers
Summary
Policymakers have recognized the crucial role of informal carers in supporting older and frail family members, friends, and neighbors and have since implemented benefits to improve their status and well-being [1]. To assess the carers’ situation, a range of instruments [2, 3] has been developed, such as the Carer Experience Scale (CES) [4, 5], the Adult Carers Quality of Life questionnaire (AC-QoL) [6], and the Adult Social Care Outcomes Toolkit for Carers (ASCOTCarer), all addressing carers’ quality of life, the Zarit Burden Interview [7, 8], addressing care burden. In comparison to other tools assessing carers’ quality of life (QoL), ASCOTCarer, is the only one to have a corresponding instrument for measuring the QoL of long-term care service. Quality of Life Research (2021) 30:905–920 Domain Definition 1.
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