Background There has been considerable interest in using the Adult Social Care Outcomes Toolkit (ASCOT), developed in England, to measure quality-of-life outcomes of long-term care (LTC-QoL) service provision in national and cross-national studies. Objectives The aim of this study was to translate and culturally adapt the original ASCOT service user measure into German and to evaluate its content and construct validity in Austrian home care service users. Methods The translation and cultural adaptation process followed the ISPOR TCA guidelines. We used qualitative data from six cognitive debriefing interviews with Austrian recipients of home care services to assess linguistic and content validity. In addition, cross-sectional survey data (n = 633) were used to evaluate construct validity by testing hypothesized associations established in a previous study for the original English ASCOT service user instrument. Results Cognitive debriefing interviews confirmed that the German adaptation of the ASCOT service user instrument was understood as intended, although two domains (‘Control over daily life’ and ‘Dignity’) and selected phrases of the response options were challenging to translate into German. All ASCOT domains were statistically significantly associated with related constructs and sensitive to service user sub-group differences. Conclusions We found good evidence for a valid cross-cultural adaptation of the German version of ASCOT for service users. The analysis also supports the construct validity of the translated instrument and its use in evaluations of QoL-effects of LTC service provision in German-speaking countries. Further research on the reliability and feasibility in different care settings is encouraged.

Non‐kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non‐kin carers (n = 15) and additional in‐depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non‐kin carers had to negotiate personal boundaries continuously over the end‐of‐life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non‐kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non‐kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non‐kin carers providing end‐of‐life care for an older person living alone.

European countries have developed a range of long-term care (LTC) policy responses to support the increasing share of older people. However, little is known about the effectiveness of LTC services and benefits, particularly their impact on older peoples’ quality of life (QoL). This paper investigates the role of personal, care service and environmental characteristics on the effects of home care services on QoL across England, Finland and Austria. We used data from surveys conducted in England, Finland and Austria. In total, 811 older adults were included in the analysis. OLS regression including main effects and country-specific interactions was used to explore variation in gains in long-term care service-related quality-of-life (LTC-QoL). Explanatory variables were derived from the production of welfare framework and comprised home care service user socio-demographics, needs indicators, social support and environmental variables and characteristics of home care service provision. In all three countries, LTC-QoL gains increased with needs, indicating that home care services perform well, with additional gains declining the higher the needs. Also, better process quality contributed to LTC-QoL improvements in all three countries. In addition, the availability of informal care, social contact, financial household situation and living alone, were associated with changes in LTC-QoL only in one or two of the countries. Home care services increased service users’ QoL in all three European countries. The increase in QoL, however, varied across the countries. The results also provide insights into the benefits and limits of home care service provision and areas for future improvements. JEL: I31, I38, J14

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