Objectives: In this paper, we seek to clarify what is known about self-care in chronic illness and the impact of lay-led self-management programmes. The main focus of the paper is the specific `lay-led' interventions developed by Kate Lorig and her collaborators in the USA, and in the context of the English Expert Patients Programme (EPP).
Methods: A systematic search of relevant databases was undertaken.
Results: Seventeen articles and two conference papers met the criteria set. These papers documented the use of condition-specific lay-led self-management programmes and generic lay-led self-management programmes.
Discussion: Despite the potential benefits of enhanced self-management, the review of the literature presented here suggests several possible problems associated with the presentation and implementation of initiatives such as the EPP programme. These include the possibility that advocates of public service improvements have on occasion been tempted to overstate the evidence for the relative and absolute effectiveness of lay-led self-management programmes. In addition, the varied experiences of those living with a chronic illness warn against promulgating rigid prescriptions about what patients —should think and do. The evidence to date is indicative of short-term benefits being derived from the provision of lay-led self-management programmes.
Gray A, ed. World health and disease. Buckingham: Open University Press, 2001.
2.
Taylor DGMedical care in developing countries. London: Office of Health Economics, 1972.
3.
Taylor DG, Bloor K.Health care, health promotion and the future of general practice. London: Nuffield Provincial Hospitals Trust , 1994.
4.
Department of Health Saving lives: our healthier nation. London: Stationery Office, 1999.
5.
Department of Health The NHSPlan, a plan for investment, a plan for reform. London : Stationery Office, 2000 .
6.
Department of Health.The expert patient: a new approach to chronic disease management for the 21st century. London: Department of Health, 2001 .
7.
Donaldson L.Expert patients usher in a new era of opportunity for the NHS. BMJ2003; 326: 1279—80.
8.
Department of Health.Self care: a real choice: self-care support, a practical option. London: Department of Health, 2005.
9.
Department of Health.Supporting people with long term conditions. An NHS and self care model to support local innovation and integration. London: Department of Health, 2005.
10.
Bury M., Newbould J., Taylor D.A rapid review of the current state of knowledge regarding lay-led self-management of chronic illness. London: National Institute of Health and Clinical Excellence, 2005 .
11.
Glaser B., Strauss A.Awareness of dying. Chicago: Aldine , 1965.
12.
Strauss A.America: in sickness and in health. Society1973; 19: 33—9.
13.
Lorig K.Partnerships between expert patients and physicians. Lancet2002; 359: 814—15.
14.
Strauss ALChronic illness and the quality of life. St Louis : Mosby, 1975.
15.
Corbin J., Strauss ALManaging chronic illness at home: three lines of work. Qualitative Sociol.1985; 8: 224—47.
16.
Corbin J., Strauss A.Unending work and care: managing chronic illness at Home. San Francisco: Josey Bass, 1988.
17.
Bury M.Chronic illness as biographical disruption. Sociol. Health Illness1982; 4: 167—82.
18.
Bury M.Meanings at risk: the experience of arthritis. In: Anderson R, Bury M, eds. Living with chronic illness: the experiences of patients and their families . London: Unwin Hyman , 1988: 89—116.
19.
Bury M.Illness narratives: fact or fiction? Sociol. Health Illness2001; 23: 263—85.
20.
Williams SJChronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept . Sociol Health Illness1984; 22: 40—67.
21.
Anderson R.The quality of life of stroke patients and their carers. In: Anderson R, Bury M, eds. Living with chronic Illness: the experiences of Patients and their Families. London : Unwin Hyman, 1988: 14—42.
22.
Canam C.Common adaptive tasks facing parents of children with chronic conditions . J Advanced Nurs1993; 18: 46—53.
23.
Charmaz K.Loss of self: a fundamental form of suffering in the chronically ill . Sociol Health Illness1983; 5: 168—95.
24.
Charmaz K.Experiencing chronic illness. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, eds. The handbook of social studies in health and medicine. London: Sage, 2000: 277—92.
25.
Kelly M., Field D.Medical sociology, chronic illness and the body. Sociol Health Illness1996; 18: 241—57.
26.
Frank AWThe wounded storyteller: body, illness and ethics. Chicago : University of Chicago Press, 1995 .
27.
Pound P., Gompertz P., Ebrahim S.Illness in the context of older age: the case of stroke. Sociol Health Illness1998; 20: 489—506.
28.
Sanders C., Donovan J., Dieppe P.The significance and consequence of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociol Health Illness2002; 24: 227—53.
29.
Carricaburu D., Pierret J.From biographical disruption to biographical reinforcement: the case of HIV-positive men. Sociol Health Illness1995; 17: 65—88.
30.
Lawton J.Lay experiences of health and illness: past research and future agendas . Sociol Health Illness2003; 25: 23—40.
31.
Barlow J., Wright C., Sheasby J., Turner A., Hainsworth J.Self-management approaches for people with chronic conditions: a review . Patient Educ Couns2002; 48: 177—87.
Robinson A. , Thompson DG, Wilkin D., Roberts C., Northwest Gastrointestinal Research Group. Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial. Lancet2001; 358: 976—81.
34.
Kennedy A., Nelson E., Reeves D., et al. A randomised controlled trial to assess the impact of a package comprising a patient-oriented, evidence based self-help guidebook and patient centred consultations on disease management and satisfaction in inflammatory bowel disease. Health Technol Assess2003; 7: 1—126.
35.
Lorig K., Feigenbaum P., Regan C., Ung E., Chastain RL, Holman HRA comparison of lay-taught and professional-taught arthritis self management courses. J Rheumatol1986; 13: 763—7.
36.
Lorig K., Mazonson PD, Holman H.Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis Rheum1993; 36: 439—46.
37.
Bandura A.Social foundations of thought and action. Upper Saddle River, NJ: Prentice Hall, 1986.
38.
Bandura A.Self-efficacy. In: Ramachaudran VS , ed. Encyclopedia of human behavior. Vol. 4. New York: Academic Press, 1994: 71—81.
39.
Barlow JH, Turner AP, Wright CCA randomized controlled study of the Arthritis Self-Management Programme in the UK. Health Educ Res2000; 15: 665—80.
40.
Lorig KR, Ritter PL, Laurent DD, Fries JFLong-term randomized controlled trial of tailored-print and small-group arthritis self-management interventions. Med Care2004 ; 42: 346—54.
41.
Weingarten SR, Henning JM, Badamgarav E., et al. Interventions used in disease management programmes for patients with chronic illness — which ones work? Meta-analysis of published reports. BMJ2002; 325: 925—33.
42.
Chodosh J. , Morton SS, Mojica W., et al. Meta-analysis: chronic disease self management programs for older adults. Ann Intern Med2005; 143: 427—38.
43.
Lorig K.The integration of chronic condition self-management into health systems — a world view. Paper presented at Guiding Us Forward — National Chronic Condition Self-Management Conference, November, Melbourne, Australia, 2003.
44.
Stanford University website: http:// patienteducation.stanford.edu/programs/psmp. html (accessed May 2005).
45.
Sobel DR, Lorig KR, Hobbs M.Chronic disease self-management program: from development to dissemination . Permanente J2002; 6: 15—22.
46.
Lorig K., Sobel DS, Stewart AL, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization, a randomized trial . Med Care1999; 37: 5—14.
47.
Lorig KR, Ritter P., Stewart AL, et al. Chronic disease self-management program, 2-year health status and health care utilization outcomes. Med Care2001; 39: 1217—23.
48.
Expert Patients Programme website: http:// www.expertpatients.nhs.uk/ (accessed July 2006).
49.
Wright CC, Barlow JH, Turner AP, Bancroft GVSelf-management training for people with chronic disease: an exploratory study . Br J Health Psychol2003; 8: 464—76.
50.
Kennedy A., Rogers A.The process of implementing a self-management policy within the English national health system. Paper presented at Guiding Us Forward — National Chronic Condition Self-Management Conference, November, Sydney, Australia, 2003.
51.
EPP Evaluation Team.Process evaluation of the EPP — Report II. University of Manchester: National Primary Care Research and Development Centre, 2005.
52.
Tattersall R.The expert patient: a new approach to chronic disease management for the twenty-first century. Clin Med2002; 2: 227—9.
53.
Fu D., Fu F., McGowan P., et al. Implementation and qualitative evaluation of chronic disease self management programme in Shanghai, China: a randomized controlled trial . Bull WHO2003; 81: 174—82.
54.
Griffiths C. , Motlib J., Azad A., et al. Randomised controlled trial of a lay-led self-management programme for Bangladeshi patients with chronic illness. Br J Gen Pract2005 ; 55: 831—7.
55.
Department of Health.Our health, our care, our say: a new direction for community services. London: Department of Health, 2006 .
