The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care-related QoL of people receiving publicly-funded adult social care. This study explores relationships between QoL and non-care related factors to identify relationships that could inform social care policy and practice. Cross-sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self-rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT-QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk-adjustment of scores to account for variation outside of the control of social care support

What does an outcomes-based perspective bring to an understanding of care and caring?

It has been argued that a relational perspective is vital for an understanding of care and caring. This is difficult to contest, since care and caring exist in and through relationships. Yet the direction of public policy in the UK, and elsewhere, has been to emphasise outcomes-based policy-making. This approach draws upon evidence of the effectiveness of policy, service delivery and/or practice-based interventions drawn from evaluation of their impact on outcomes for individuals. This paper critically explores the potential contribution, as well as the limitations, of an outcomes-based perspective

Issues and Challenges in comparing Carers' Quality of Life in England and Japan: Lessons from developing a Japanese-version of the ASCOT-Carer

Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This paper discusses issues and challenges in conceptualising and comparing carers’ quality of life in England and Japan, based on developing a Japanese-version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting carers in employment is a key concern in both countries, we particularly focus on this group of carers

Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)

Background: This paper reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. Method: The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results: Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions: The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however its limitations must be recognised