The NCRI Cancer Experiences Collaborative: Defining self management

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 HealthOur Health, Our care, Our Say. Department of Health, London2006 Google Scholar ; Department of Health, 2005 Department of HealthNational Service Framework for Long-term Conditions. Department of Health, London2005 Google Scholar ; National Institute for Clinical Excellence, 2004 National Institute for Clinical Excellence. 2004. Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The Manual. National Institute for Clinical Excellence. Google Scholar ) 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 Department of HealthThe Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. The Stationery Office, London2001 Google Scholar ) 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 Foster C. Hopkinson J. Hill H. Wright D. Self-management by People Affected by Cancer: A Review of the Evidence. Macmillan Cancer Relief and University of Southampton, London2005 Google Scholar ) 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 ( National Cancer Research Institute, 2004 National Cancer Research InstituteSupportive and Palliative Care Research in the UK: Report of the NCRI Strategic Planning Group on Supportive and Palliative Care. NCRI, London2004 Google Scholar ).