Family & Community Health

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Family & Community Health:

What Makes It So Hard? Barriers to Health Promotion Experienced by People With Multiple Sclerosis and Polio

Becker, Heather PhD; Stuifbergen, Alexa RN, PhD, FAAN

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Perceptions of barriers to health promotion were examined in three groups of individuals with disabilities: (1) those with multiple sclerosis, (2) those with postpolio syndrome, and (3) polio survivors without postpolio syndrome. While there were small statistically significant differences among the three groups, all rated fatigue and impairment as their most frequent problems. For all groups, financial and interpersonal resources contributed significantly to the prediction of barriers, after accounting for perceived impairment. The findings suggest that health professionals should explore thoroughly the nature of individuals' perceived barriers to staying healthy, so that they can target their health-promoting interventions most effectively.

BARRIERS HAVE BEEN identified as a major influence on a person's ability to engage in health-promoting behaviors. In the Health Belief Model, 1 barriers are defined as the subjectively perceived costs inherent in undertaking health behaviors. Numerous barriers to health promotion and disease prevention have been identified, including cultural barriers resulting from differences between practitioners and patients in perceived etiology of disease, language, health beliefs and practices, and communication patterns. In addition, demographic characteristics, such as educational level, income, transportation, access to care issues, orientation to preventive health services, and insurance status, can negatively affect a person's ability to take care of his or her health. 2

The impact of barriers is especially pronounced for people with disabilities. Healthy People 2010 3 cited data from a Colorado Behavioral Risk Surveillance System survey indicating that 55% of adults with disabilities, compared with 43% of nondisabled adults, reported that they regularly encounter very problematic barriers. Rimmer 4 has pointed out that the environment is often the barrier to good health practices—not the disability itself. Inaccessible equipment at exercise facilities and lack of awareness of fitness professionals inhibit participation in exercise programs, and inaccessible equipment in providers' offices—even something as simple as a scale to weigh wheel chair users—make it difficult for people with disabilities to get the preventive screenings they need. Cardinal and Spaziani 5 found that although entrances of physical activity facilities in western Oregon were generally accessible, only 8% provided adequate accessibility to and around exercise equipment. Inaccessible environments also take a toll on emotional well-being. For example, Putnam and her colleagues 6 reported that the individuals with disabilities they interviewed identified physical activity as an important component of their emotional well-being; barriers to staying physically active diminished their mental, as well as their physical, health.

Another major barrier has been the attitudes of health professionals toward persons with disabilities. 6–9 Health professionals tend to focus on the disability, rather than viewing the individual as a whole, with a need to engage in good health practices. Consequently, people with disabilities sometimes do not receive the preventive health screening services they need. In addition, problems with finances and insurance keep many individuals from getting appropriate health care services. 8

Since people with disabilities risk secondary disabling conditions, health promotion is especially important for them, and factors that impede their ability to live a healthy life merit particular attention. People with disabilities have reported more problems with weight control; 4,6,8 therefore, they need exercise and nutrition counseling tailored to their special needs. Unfortunately, people with disabilities may find that financial limitations prevent them from practicing good nutrition habits or accessing fitness facilities. 4,6 Smoking rates for younger women with disabilities were found to be nearly double the rates for nondisabled women, a finding that Nosek 8 attributed to their stressful life situations. As many persons with physical impairments already have compromised cardiovascular and respiratory systems, smoking cessation may be especially important for them.

Previous research with people with disabilities has found that barriers are one of the most powerful predictors of engaging in health-promoting behaviors. 10–11 People with disabilities have consistently rated impairment, lack of money, being too tired, lack of convenient facilities, and interference with other responsibilities as impediments to their health-promoting behaviors. 10–12 Rimmer 4 reported that in addition to these barriers, women with disabilities indicated that a lack of transportation and a lack of knowledge to find information about available programs created barriers to their participation in physical activities. Clearly, persons with disabilities need support and encouragement to overcome the barriers that impede their ability to lead more healthy lives.

Even though we are beginning to understand the critical role of barriers in health promotion, more specific information is needed to guide interventions to lessen the impact of these barriers for specific groups of individuals with disabilities. The purpose of this article, therefore, is to examine the barriers to health promotion experienced by three different groups of people with three chronic disabling conditions: (1) those with multiple sclerosis (MS), (2) those who are experiencing postpolio syndrome (PPS), and (3) those who had polio but did not report postpolio syndrome (non–PPS).

In MS, the cells of the immune system destroy the myelin-insulating axons, thus interfering with the efficiency of electrical conduction within the central nervous system. Recent research has revealed that severing and death of axons in the brain also occurs in MS 13 and may account for the wide disparity in symptoms and impairments. Primary symptoms include weakness, fatigue, numbness, gait disturbances, visual disturbances, dizziness, ataxia, bladder and bowel problems, changes in sexual functioning, pain and muscle weakness, spasm, and spasticity. 14–15 For some of the estimated 350,000 persons with MS in the United States, the disease may be relatively benign, resulting in only mild neurological dysfunction. 16 For others, the disease may progress or exacerbate, causing major neurological losses and disability.

Poliomyelitis reached its peak in the 1950s and has now been virtually eradicated in developed countries. 17–18 During the initial acute infection, the polio virus infected spinal motor neurons and/or brainstem nuclei, resulting in a widely variable distribution of weakness in skeletal and bulbar musculature, and residual impairment and paralysis ranging from minor muscle weakness to total paralysis requiring ventilatory support. 18 In a typical case of acute paralytic poliomyelitis, 95% of the motor neurons were infected with the virus and 50% of these motor neurons died, leaving muscle fibers without innervation. Polio survivors regained some strength and function over time, as surviving motor neurons “sprouted” additional axons to innervate “orphaned” muscle fibers. 19–20

Presently, there are an estimated 1 million polio survivors in the United States, with an average age of 55. 17,20–21 While many of these polio survivors have lived with a stable level of residual impairment and/or disability over time, 28% to 40% have developed new pain, muscle weakness, and fatigue in skeletal or bulbar muscles unrelated to other known causes. 19 This constellation of symptoms, labeled as PPS or “the late effects of polio,” has resulted in increases in impairment and disability for many aging polio survivors. The etiology of PPS is thought to be a continuing dysfunction in the spinal cord motor neurons resulting in ongoing muscle denervation and reinervation. Symptoms of PPS are related to attrition of oversprouting motor neurons that eventually fail to support all their axonal sprouts leading to a failure of re-innervation.

The similarities and differences of these three conditions (MS, polio without PPS, and PPS) are ideal for exploring differences in barriers among persons with chronic disabling conditions. Polio survivors (with and without PPS) are typically older than persons with MS and have lived much of their life at a time when few accommodations were available for persons with disabilities. Polio survivors without PPS have lived a lifetime with their residual impairment. However severe that impairment might be, it has been relatively stable and nonprogressive—unlike the experiences of those with MS and PPS, who must face an uncertain and usually progressive course. Although persons with PPS share many common experiences with persons living with MS, they are unique in that they have been living with some degree of disability for most of their lives and now must adjust to new symptoms and related disability. This article addresses how perceived barriers differ among these three groups and what factors are associated with barriers to health promotion in each group. The research questions that guided the analyses are as follows:

1. How do persons with multiple sclerosis, persons experiencing PPS, and persons who had polio but do not have PPS differ in their perceptions of barriers to health promotion?

2. For each group, how much do perceived interpersonal and financial resources add to the prediction of barriers to health promotion after accounting for perceived impairment?

© 2004 Lippincott Williams & Wilkins, Inc.



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