The NCRI cancer experiences collaborative: Defining self management

Description/Abstract

Many people want an active role in managing problems associated with cancer and other potentially life limiting conditions as part of their daily lives. UK policy aims to enhance the practice of patient centred care, patient choice and patient involvement in care decisions and service development (Department of Health, 2006; Department of Health, 2005 Department of Health, National Service Framework for Long-term Conditions, Department of Health, London (2005).Department of Health, 2005; National Institute for Clinical Excellence, 2004) including people at the end of life (UK End of Life Care Strategy is in development). Policy initiatives also promote patients as experts in their own care and management (Department of Health, 2001) but there is little evidence regarding how best to support this, particularly in supportive and palliative care. A systematic literature review explored the empirical evidence of what people do to help themselves following a cancer diagnosis (Foster et al., 2005) and concluded that self-management is poorly defined and lacks a theoretical framework. Few studies specifically explore what patients do to help themselves, what enables them to do so, and how this can be supported. There is also insufficient evidence to determine whether helping people to help themselves live with cancer actually enhances their physical and psychological well being. Limited knowledge and approaches for helping patients to help themselves, commonly called ‘self-management’, indicates that attention should be directed at supporting individuals to manage problems associated with their illness themselves, even while dying. However, to achieve this, there is a need to enhance good quality research in supportive, palliative and end of life care and also increase the number of skilled researchers in this field.