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What It Means to Self-Manage a Disease

More Articles in This Series

ASA's Healthcare and Aging Network is discussing chronic diseases and their management. These recent articles cover a variety of care management and health improvement ideas and practical programs.

Why Measure Patient Engagement?
By Judith Hibbard

The Health Legacy Project: Reducing Obesity and Diabetes among African-American Women
By Robin McConney

What It Means to Self-Manage a Disease 
By Sarah O’Leary

SHARE-ing Resources and Education for Those with Early-Stage Dementia and their Caregivers
By Carol J. Whitlatch

By Sarah O’Leary

The concept of self-management when it comes to illness may be confused with programs or classes designed to assist people in managing a disease. But self-management is what people do to manage everyday life within the context of a disease—usually a chronic condition. Self-management assumes the person is active in the process. Though self-management often is related to chronic disease, it can be applied to acute illnesses, as well as to prevention and wellness.

Disease self-management may best be described as a collection of tasks an individual undertakes to live well with one or more disease conditions. Lorig and Holman in their 2003 Annals of Behavioral Medicine article, “Self-management Education: History, Definition, Outcomes, and Mechanisms,” refer to three sets of tasks: medical management, changing or maintaining meaningful behaviors and roles, and dealing with the emotions of having an illness—including fear, anger, depression and frustration. Such tasks include gaining an understanding of the disease, developing the confidence to manage treatment regimens, learning problem-solving skills, making and maintaining necessary lifestyle changes and coping with emotions that may accompany the condition, including seeking professional help.

Self-management can also be viewed across a continuum, from wellness to advanced disease. A person is self-managing when they make regular medical visits and take medications as prescribed. Self-management frequently becomes more complicated as a disease progresses. This may require more changes or greater efforts in order to manage daily life, such as changing usual activities that one can no longer do, or finding additional support to manage the disease, such as classes and counselors.

Enhancing and supporting self-management can happen through resources such as disease self-management programs and classes, medical team consultation, including consulting with chronic disease case managers, or counseling for emotional issues related to life changes or loss caused by the disease.

Chronic disease self-management programs or supports systematically provide education and support interventions, often linked to healthcare staff. These types of programs focus on increasing the patient’s skills and confidence in managing their health problems, goal-setting and problem-solving support. More specific goals may focus on aspects of a particular disease, such as pain management for arthritis.

Considering that self-management is active, the focus of self-management programs is on the individual and their definition of their needs and problems—what do they need to do to manage the challenges of their disease in their daily life?

As the population ages, more people are living longer with chronic diseases. Self-management alone cannot improve the course of chronic disease, but needs to be part of the framework. A good example is the Chronic Care Model that Wagner et al. wrote about in their 2001 Health Affairs piece, “Improving Chronic Illness Care: Translating Evidence into Action” (PDF).

This model includes the patient, the healthcare system and the community. Here the person is viewed as an informed and active partner with their healthcare provider; the healthcare system has ways to support the provider and the patient; and there are links with the community that support self-management.

This type of model actively promotes and supports healthy self-management and links to community resources for people with chronic disease.

Sarah A. O’Leary, M.P.H., M.A., has worked for more than 25 years in the social service field in hospitals, schools and community settings with all age groups. Since 2004 she has worked in public health in chronic disease prevention, as well as child injury and suicide prevention.

This article is brought to you by the Editorial Committee of ASA’s Healthcare & Aging Network (HAN)

Photo: iStockPhoto.com

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