2014 Conference Presentation
In England, it is estimated that over 5.4 million people provide unpaid care and support to sick, disabled or elderly relatives, friends or neighbours (Office of National Statistics, 2012). Although looking after a relative or friend can be a natural and fulfilling part of a relationship (Greenwood et al, 2009), the physical and emotional demands of caring may have a detrimental effect on carers’ own health and wellbeing (Salter et al, 2010, Stenberg et al, 2010). Supporting carers to maintain their own health and wellbeing has, therefore, been a key policy concern in recent years (Department of Health, 2010).
The Care Act (2014) represents an unprecedented legal recognition of the contribution made by unpaid carers to the social care economy, and introduces additional obligations on English local authorities to provide support to carers. Within this context a key question is how to identify the impact of social care support on carers’ wellbeing, so that interventions and policy strategy can be evaluated.
The presentation will describe the development of social care-related quality of life measure for carers and its evolution into the Adult Social Care Outcome Toolkit (ASCOT) Carer. The measure of social care-related quality of life was initially developed through focus groups and cognitive interviews for a local self-completion postal survey for carers (Kent Carers Survey) (Smith et al, 2008), which was further developed for national data collection via the Personal Social Services Survey for Carers in England (PSS SACE) (Fox et al, 2010, HSCIC, 2010, Malley et al, 2010). This 3-response level, self-completion measure provides national benchmarking data for the evaluation of policy initiatives and is a key outcome measure in the English Adult Social Care Outcomes Framework (ASCOF). Further work has developed 4-response level, self-completion and interview instruments, which are comparable to the ASCOT INT4 and SCT4 for service users with long-term conditions. The presentation will highlight differences between the ASCOT and the ASCOT Carer, and why these differences are necessary.
The ASCOT Carer measures could potentially allow comparison of social care outcomes for carers within or across long-term care systems and evaluate care interventions. This is an independent report of research commissioned and funded by the Policy Research Programme in the Department of Health. The views expressed are not necessarily those of the Department.