Purpose – The purpose of this paper is to consider the experiences of carers caring for an adult child, particularly as they affect the transition from midlife into older age. It explores aspects affecting the vast majority of carers, such as accessing information and services, but focuses on the specific concerns of those caring for a child with a life-long disability or a child who acquires a long-term health problem in adolescence or adulthood. In the context of the introduction of the Care Act (2014) in England, the paper highlights ways in which support for carers could be improved.
Design/methodology/approach – This paper draws on interview data which consisted of 86 face-to-face interviews with purposefully selected participants based in four local authorities. At the end of the study in 2014 the authors held a series of five focus groups for practitioners and carers to explore how the emerging findings chimed with their experiences and to refine the study’s messages for practice. The data from interviews are set in the context of policy and practice developments in social care in England.
Findings – The paper draws attention to the need for practitioners to find ways of involving carers in decision making without compromising the rights to autonomy and choice on the part of the person cared for. Both those commissioning services and practitioners need to acknowledge that parent carers need assurances about the long-term viability and quality of the plans that are developed for the person they support.
Research limitations/implications – This paper is drawn on interviews with carers and practitioners in four areas of England; most of the carers interviewed were white British and female. The implications of planning research and conducting research with family carers are explored and their similarities with practice encounters identified.
Practical implications – The key practice point in this paper highlights the necessity of talking about the future with parent carers, making plans for possible and highly likely events, addressing mortality, and being aware of the potential for a deeply held sense of pessimism and unspoken distress among carers. Some participants seemed to feel that practitioners conveyed a sense that they were inadequate or unwilling to discuss these matters and practitioners who suspect this may apply to them or their team could usefully consider seeking skills development to improve their practice.
Originality/value – This paper is the first to consider practice perspectives in the context of the Care Act (2014) and personal budgets in England relating to parent carers.