Abstract

Background and Objectives: While promoting choice and control for informal carers is recognised as part of the personalisation agenda, carers’ choice in terms of the decision of whether to provide care and the reasons that inform that choice is often overlooked. Carer choice, defined in terms of the carer’s reason(s) for providing unpaid care, has been found to be related to the experience of burden by carers and carers’ psychological health; however, there is limited evidence of whether there is a relationship between reasons for caring and the quality of life of carers. In England, carer quality of life has been identified as a key outcome indicator in the Adult Social Care Outcomes Framework; therefore, it is important to establish whether there is a relationship between choice – in terms of the reasons for providing care – and this key outcome.

Methods: A survey of 387 carers was conducted across 22 English local authorities with adult social care responsibilities between June 2013 and March 2014. Participants completed a face-to-face or telephone interview. Data were collected on carer characteristics and the caregiving situation, as well as carer-reported reasons why they cared for a relative or friend. Carers’ social care-related quality of life (SCRQoL) was measured using the ASCOT-Carer interview. Multiple regression analysis explored the relationship between reasons for caring and ASCOT-Carer SCRQoL, whilst controlling for individual characteristics (e.g. age, sex).

Results: It was found that carer-reported reasons for caring were important predictors of SCRQoL. Carers who reported that they had become carers because adult social services had suggested that they should do so and/or the care-recipient would not want help from anyone else had significantly lower SCRQoL. Carers who reported that they had taken on caregiving because they had the time to provide care had significantly higher SCRQoL.

Conclusions: While long-term care systems rely on informal care, the limiting of carers’ choice of whether to provide care is related to worse quality of life outcomes for carers. Increased awareness of this relationship would be beneficial in developing policy and practice that seeks to improve carers’ quality of life alongside the QoL of care-recipient.