School of Nursing and Midwifery Self management and cancer Claire Foster, PhD, CPsychol Jane Hopkinson, PhD, RN Heidi Hill, PhD David Wright, PhD Liz Roffe, BSc Macmillan Research Unit, University of Southampton

School of Nursing and Midwifery Background  Mortality associated with cancer remains high  Advances in diagnostic techniques and treatment  Macmillan Listening Study [2005] #1 Impact on life; how to live with cancer  Many people want active role in managing problems  NHS Plan and NICE guidance  Workshops with Macmillan Stakeholders [2003] Supporting self management Brennan, J. (2004). Cancer in context: A practical guide to supportive care. OUP. Hopkinson, J & Corner, J. (2006). Helping patients with advanced cancer live with concerns about eating: A challenge for palliative care professionals. Journal of Pain and Symptom Management, 31 (4),

School of Nursing and Midwifery Focus of systematic review Supporting self management: Things people do to help themselves when living with cancer How can people be helped to ‘live’ with cancer and its consequences?

School of Nursing and Midwifery When you leave the clinic, you still have a long term condition. When the visiting nurse leaves your home, you still have a long term condition. In the middle of the night, you fight the pain alone. At the weekend, you manage without your home help. Living with a long term condition is a great deal more than medical or professional assistance [DoH, 2005] Dept of Health (2005) Supporting people with long term conditions: An NHS and Social Care Model to support local innovation and integration. The Stationery Office: London.

School of Nursing and Midwifery Self management Self management of long term/chronic conditions Monitor/manage signs and symptoms Protect and promote health Manage impact on functioning, emotions, interpersonal relationships Adhere to treatment Empower Build confidence Enhance QoL Self management program Barlow et al. (2005) Self-management training for people with chronic disease: A shared learning experience. Journal of Health Psychology, 10, Lorig et al. (2001) Effect of a self-management programme on patients with chronic disease. Effective Clinical Practice, 4,

School of Nursing and Midwifery Approach Systematic review of empirical evidence Defining the search Strategies used by adults living with cancer Patient initiated Databases: BIDS, BNI, Cancer.gov, CINAHL, Medline, PsychINFO, Web of Science independent coders

School of Nursing and Midwifery The evidence base Initial scoping Titles and abstracts (where available) that appeared to meet criteria Full papers retrieved Papers included in review

School of Nursing and Midwifery Self initiated strategies Self care & Self management usual everyday behaviour to manage or prevent symptoms medical management of cancer, symptoms or disease process by patient Self help additional activities engaged in to enhance physical and/or psychological well-being

School of Nursing and Midwifery Key findings Focus of studies Self care/management (symptoms) Self help (CAM; support etc) Lack of theoretical base Few UK studies (N=3) Heterogeneous groups Site Stage Age Gender

School of Nursing and Midwifery Summary  Research evidence is limited  Need to build an understanding of what people do to help themselves and how this can be supported  Need to develop theoretical framework  Methodological difficulties  Self initiated action: term to encompass all activities that individuals engage in to help themselves when living with cancer

School of Nursing and Midwifery Our research programme  Conceptualising self management/action  Building evidence base  Strategies people use to manage problems/change following treatment  Patients with advanced cancer living with weight loss and change in eating habits  Working in partnership with health care providers  Working in partnership with people affected by cancer

School of Nursing and Midwifery Further information