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NCHPAD - Building Healthy Inclusive Communities

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Background


A secondary condition is defined as "a condition that is causally related to a disabling condition and can be either a pathology, an impairment a functional limitation or an additional disability". Examples of secondary conditions include mobility problems, skin problems, physical deconditioning, arthritis, carpal tunnel syndrome, fatigue, weakness, pain, obesity, osteoporosis, depression and respiratory problems. They also can include problems such as injury from adaptive equipment and orthotic devices and environmental issues like lack of access to physician offices. Secondary conditions not only ultimately threaten an individual's accustomed level of independence and quality of life, they can also cause repeated hospitalizations and staggering re-rehabilitation costs.

As the probability of developing secondary conditions increases, the focus for consumers with a disability, their advocates and their helping professionals becomes one of prevention. People with disability "justly desire and deserve to maintain lifestyles that are as fully functional, diverse and independent as possible". And in light of threatening secondary conditions, educated consumers are beginning to ask "what can I do to feel good? Could I ever feel as well as an athlete looks? Must I be condemned to struggle from one medical crisis to the next in future years, or is there something I can do along the way to prevent new problems? Can I possess a sense of harmony and pleasant satisfaction with who I am and the life I am living? Is it possible to have a disability, feel less pain, be more rested and have more energy for the activities I want to participate in?".

"The challenge is to identify effective interventions that can help maintain quality of life throughout each person's lifetime". In a 1990 report, Seekins et al. relay that in a consumer-generated list of secondary conditions, "8 of the 12 items receiving the highest problem index scores involve behavioral components, including pain, depression, isolation, fatigue, sleep disturbances, weight control, and physical conditioning problems. Elements of these problems are amenable to self-management strategies". Through the Institute of Medicine's Model of Secondary Conditions, Pope and Tarlov elucidate lifestyle and behavior as a risk factor for new disablement. Based on this model, it follows that to prevent expensive and independence-threatening secondary conditions and to encourage mid- and late-life well-being, people with disabilities may benefit from participating in health promotion activities. In fact, "practices that promote general well-being and good health... may be more important to the population of people with disabling conditions, given their elevated risk for secondary conditions..."

Pender defines health promotion as "activities directed toward increasing the level of well-being and actualizing the health potential of individuals, families, and communities and societies". Health promotion activities can lead to a higher state of wellness. "The objective of wellness is not merely to avoid illness or prolong life; rather its objective is to enhance the quality of a person's life through activities that are designed to improve the state of his physical, mental, emotional, and spiritual well-being. In theory, wellness is as achievable by the aged, the chronically ill, or the handicapped as by anyone else".

In the past, however, the terms wellness and health promotion were not often associated with persons with disabilities. The wellness and fitness paradigm in the U. S. has left people with chronic disabilities out. Integration into community programs has not taken place, especially for individuals with a severe disability. Fitness centers are not often prepared to integrate disabled customers with safe, accessible programs and equipment. Weight loss centers usually have no way for a wheelchair-user to weigh in. Safe, barrier-free swimming pools with individualized swimming programs are difficult to find in many communities. Researchers in the U.S. are just beginning to investigate the most effective tactics in health promotion programs that are designed to address the prevention and alleviation of secondary conditions. For example, the Universities of Montana and Kansas have successfully co-developed and evaluated a succession of thirty-two eight-week health promotion workshops provided at nine Independent Living Centers around the country. This collaborative work is philosophically supported by the 1993 amended federal Rehabilitation Act, which decrees that independent living center services should include "appropriate preventive services to decrease the need of individuals assisted under this Act for similar services in the future". These wellness programs highlight the importance of preventing secondary conditions, as well as the importance of good health and its impact on improving life satisfaction, and increasing one's ability to engage in enjoyable and "meaningful" activities. Sponsored and presented by selected Independent Living Center staff members, the workshops, titled "Living Well with a Disability," "continue to demonstrate good effects." These cognitive/experiential health promotion programs cover the following topics: goal setting, problem solving, healthy reactions (dealing with setbacks); depression, healthy communication, information seeking, physical activity, nutrition, advocacy and maintenance. They are empowering participants to improve their wellness levels.

Growing out of the American civil rights movement, the Independent Living (IL) philosophy and conceptual model promote self-empowerment among persons with disabilities. A life filled with "pride, power and personal style" has become the vision-turned-reality for many IL consumers in the '90s. Gerben DeJong describes the independent living paradigm as one that is characterized by consumerism, self-help and demedicalization/self-care. He further elaborates that "implicit in the argument for demedicalization is the assumption that individuals can and should take greater responsibility for their own health and medical care...The self-care movement encourages people... to avert potential complications arising from chronic health conditions". Based on this classic description and on DeJong's conclusions, it follows, then, that it is well within the philosophical framework and reflective of the IL spirit that ILCs focus on their ever-aging consumer-base, supporting and promoting their self-initiated prevention of secondary conditions--with the goal of optimum wellness and quality of life well-envisioned.


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