Supporting family carers: International evidence


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Gunn Grande1
1University of Manchester, Manchester, UK

Abstract

This talk considers ‘family' in its broadest sense and uses the NICE (2004) definition of carers as ‘lay people in a close supportive role who share in the illness experience of the patient and undertake vital care work and emotion management'. This presentation will mainly focus on supporting family carers towards the end of the patient's life, but most issues will span the patient's disease trajectory. The work of carers make a substantial contribution to the economy, and carers play a vital role in providing psychological and physical support for patients, negotiating and coordinating their care, and in enabling patients to remain at home towards the end of life. However, many come to this role without any preparation, and care giving can have substantial psychological, physical, social and financial impact on carers. Whilst some demographic and clinical factors may help predict carers at ‘at risk' of adverse impacts, psychological variables such as self esteem and preparedness may be more important and amenable to intervention. When trying to support carers, we face several challenges and gaps in our knowledge. Overall there has been relatively little research on interventions for caregivers and their effectiveness. Furthermore, research to date has given little attention to potential rewards of care giving and how we may nurture these aspects. Carers occupy an ambiguous role both as providers of support and as potential clients requiring support in their own right, and we need to negotiate and address both to provide effective support. Finally, care giving is a dynamic process that evolves over time, and we require more longitudinal research and better theoretical models to understand this process. In the developed world demographic changes pose likely future challenges where more patients with complex care needs are looked after by fewer carers who face increasing care giver burdens.