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

Abstract

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.

A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers

“…While the analysis presented in this paper contributes to the existing literature by exploring non-independence within caregiving dyads in the context of community-based long-term care in England, the results also contribute to the literature on the relationship between individual and contextual characteristics and care-related QoL (actor effects) [ 30 , 31 ]. The findings were broadly consistent with this literature, as well as other studies of QoL in relation to caring or long-term care: for example, there were also significant relationships between high intensity caregiving and lower QoL for Control, Social and Occupation, which is consistent with other studies [ 5 , 9 , 69 ].…”

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

“…This can lead to contradictory answers that result in being discarded as invalid responding or supporters people to select an answer and thus potentially creating bias (Antaki & Rapley 1996;Antaki et al 2002). Having help from a care worker has been associated with reporting more favourable outcomes among people with physical and sensory impairments (Elliott et al 2008), and people with intellectual disabilities (Rand & Malley 2016). Reducing the need for help in completing the ASCOT questionnaire was one of the aims of this project.…”

Non‐pharmacological interventions for adults with intellectual disabilities and depression: a systematic review

“…() found a significantly higher QoL in a group of adults with ID without Axis I diagnosis compared with adults with ID in the anxiety/mood disorder diagnosis group. Furthermore, adults with ID with higher levels of anxiety/depression are more likely to report a poor QoL (Rand & Malley ).…”