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
From the School of Nursing, University of Texas at Austin.
This project was supported by Grant R01NR03195, National Institute of Nursing Research, National Institutes of Health.
Corresponding author: Heather Becker, PhD, Research Scientist, University of Texas at Austin, School of Nursing, 1700 Red River, Austin, TX 78701.
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?
This analysis uses data collected as part of a 10-year, community-based study of health promotion among persons with chronic and disabling conditions. This study has included a longitudinal study of persons with MS and a cross-sectional study of polio survivors. The MS sample was recruited with the assistance of two chapters of the National Multiple Sclerosis Society in the southwestern United States. The polio sample was recruited from the mailing list of the International Polio Network, an informational support organization representing more than 6,000 polio survivors from all 50 states. Following approval by the institutional review board, potential participants received information about the study from the organizations and if interested, returned forms with their names and addresses to the investigator.
Similar data collection protocols were implemented with both samples. A coded packet containing a cover letter with information related to research participants' rights, the battery of study instruments, and a stamped pre-addressed envelope were sent to all interested respondents. Those receiving the packet were told that research staff was available through a toll-free telephone number to clarify instructions, answer questions, and assist participants. Two follow-up reminders were sent to all participants who did not return their questionnaires. If the questionnaire was returned incomplete, the participant was notified and the missing pages were returned. Once the completed questionnaire was received, a hand-written thank-you and a $10 money order were sent to all respondents.
Initial response rates were high in both samples: 89% of the MS participants returned their initial questionnaire, and 94% of the persons who had polio returned their questionnaires. Participation rates of persons with MS in the longitudinal study have remained high with response rates of eligible participants ranging from 85% to 89% at each time point. The analysis examined responses from the 557 persons with MS who responded to the survey in 2000, the same year that cross-sectional data were obtained from persons who had polio (1,730 reported they were diagnosed with PPS, and 423 were non–PPS).
Background information was collected on each participant's age, ethnicity, gender, education, marital status, number of children, and employment status. In addition, participants were asked about their health history with specific focus on their diagnosis of polio or MS, as well as secondary conditions they had experienced.
The intrapersonal, interpersonal, and environmental factors that inhibit health-promoting behaviors were assessed by the Barriers to Health Promoting Activities for Disabled Persons Scale. 22 Respondents are asked to indicate how often the 18 listed barriers kept them from taking care of their health on a 4-point scale from 1 (never) to 4 (routinely). Higher scores on this summated rating scale indicate greater perceived barriers. Items were generated from a review of literature and interviews with individuals with disabilities. Expert review confirmed the importance of these items and suggested additional items. Internal consistency reliability has been reported above 0.80 in previous studies; 22 test/retest reliability was 0.75. 23 The scale has been found to discriminate between those with and those without disabilities. Significant negative correlations have been reported between scores on the barriers scale and scores on measures of self-efficacy for health-promoting behaviors and frequency of health-promoting behaviors among people with disabilities. 10,23 In the current analysis, the Cronbach alpha reliability coefficients ranged from 0.84 to 0.87 for the three samples.
Severity of impairment
Individual ratings on the Incapacity Status Scale 24 (ISS) provided a measure of functional disability due to MS and polio. This scale was one of two scales developed and validated by the International Federation of Multiple Sclerosis Societies for research involving persons with MS. The original structured interview was modified into a self-administered questionnaire that would provide an assessment of the degree of impairment in 16 aspects of personal functioning that could be influenced by MS. Each one of the 16 items is rated on a 5-point scale with “0” indicating normal or unimpaired functioning and “5” indicating a complete inability to perform the activity (eg, ambulation, dressing, etc.). The content validity of the ISS for persons with polio was reviewed by two experts in polio. Following their recommendation, the last item on sexual function was dropped from the scale. To make the scores for all groups comparable in the analyses reported here, the sexual-function item was also dropped from the MS group's scale. In the current analysis, the Cronbach alpha reliability coefficients for the 15-item scale ranged from 0.80 in the polio samples to 0.88 in the MS sample.
In this analysis, two key resources—interpersonal support and financial resources—were expected to lessen the impact of barriers. The Personal Resource Questionnaire (PRQ-85 Part 2) 25 was used to measure the multiple dimensions of social support. Responses to the 25 items were scaled from 1 (strongly disagree) to 7 (strongly agree), with higher scores indicating higher levels of perceived support. The reliability and validity of this instrument has been supported in previous studies. In the current analysis, the Cronbach alpha reliability coefficients ranged from 0.92 to 0.93 in the three samples.
Participants' perception of the adequacy of their economic resources was assessed with the Economic Adequacy Scale (personal communication, Marie Lobo, Associate Professor, Medical University of South Carolina, Charleston; 1992). The 8-item scale included items about financial resources needed for daily needs, housing, food, child care, health care, and recreation. Average item scores were computed on the 8-item scale and ranged from 0 to 4. In the current analysis, the Cronbach alpha reliability coefficients were 0.96 in all samples.
All questionnaires were proofed for missing data and entered into SPSS 10.0 (SPSS, Inc., Chicago, Illinois) for statistical analysis. A random sample of data from each mailing was verified by checking against original questionnaires; error rates were less than 1%.
The average age of the 557 individuals with multiple sclerosis was 52 years. Eighty-four percent were female, 93% were Caucasian, and 48% had some postsecondary education. Twenty-nine percent of the MS group were currently working for pay (either part time or full time), 16% were retired, and 35% indicated they were unemployed due to disability.
Each of the two groups, the 1,730 individuals with PPS syndrome and the 423 individuals who were non–PPS, had an average age of 62 years. The PPS group was 70% female and 97% Caucasian. Sixty percent have some postsecondary education. Twenty-three percent were currently working for pay, 39% were retired, and 24% indicated they were unemployed due to disability.
The non–PPS individuals (n = 423) were 65% female and 98% Caucasian. Fifty-five percent had some postsecondary education. Thirty-nine percent were working for pay, 37% were retired, and 7% indicated they were not working due to disability.
Persons with MS were more likely than those who had polio to be married, living with a significant other, divorced, or separated (89% for the MS group; 80% for those with PPS; 82% for those non–PPS). By contrast, the PPS group (21%) and the others who had polio (18%) were more likely to be never married or widowed than were those with MS (10%). To summarize, the MS group was younger, slightly less educated, and more likely to be female than the other two groups. By contrast, those who had polio, but were not diagnosed with PPS, were much less likely than the other two groups to be unemployed due to disability.
Analysis of perceived barriers among the three groups
Table 1 provides the mean rating for each barrier item, along with total barriers scores, for each group. The three groups differed significantly on 16 of the 18 individual items on the scale. The PPS group had the highest mean item rating on 10 of the items, while the MS group had the highest rating on 6 items. The non–PPS group had a lower total barriers score than the other groups (mean = 30.48 for this group versus mean = 33.12 for the PPS group and mean = 32.54 for the MS group). An examination of the 95% confidence intervals for the means of the three groups revealed that the non–PPS group had a confidence interval that did not overlap with the confidence intervals of the other two groups.
While the three groups did differ significantly in their total barriers scores (F = 18.46, p <.001, df = 2/2699), this difference was associated with a small effect size (eta2 = .01). Since the Levine statistic was statistically significant, the assumption of homogeneity of variance across groups of uneven sizes was violated, and the difference between groups should be interpreted with caution. However, with such a large sample, the Levine statistic will be sensitive to fairly modest differences between groups. It was also noted that the total average item scores for these three groups were all higher than the total average item barriers score previously reported for a group of nondisabled adults attending health fairs. 22
Despite their differences, the top-rated barriers for the three groups were quite similar. Fatigue was the highest rated barrier for all groups (the average across groups was 2.6), followed by impairment (average item rating = 2.43). These ratings correspond to values between “sometimes” and “often” on the rating scale. At the other end of the scale, lack of support from family and friends had the lowest average item rating (X = 1.45).
In the open-ended comments that some participants added, it was noted that those with MS frequently mentioned fatigue as a barrier, as illustrated by the following:
Being tired or feeling exhausted, especially after a day of heavier exercise, is my worst enemy. Not sleeping so well most of the time doesn't help, because without sleep, I'm a complete wreck. Lots of aches and pains from nerve damage in legs stifles my attempts to increase exercise.
Those who had polio also frequently mentioned fatigue as a problem for them. The following comment illustrates the dilemmas faced regarding exercise:
I took an exercise class for older people, sponsored by the hospital, for around 15–20 years. It is always given by registered nurses and was, and is, an excellent class. I have been told by medical people connected with polio that PPS patients should not do strenuous exercise. At the time, I was able to do all the exercises. We had aerobic time, and I kept close track of my pulse rate. I felt I needed it, not only for my heart, but for the muscles in my chest, as well as my other muscles. I had to stop because of the pneumonia I acquired a year or so ago. I go now to a rehab center and do very limited exercise, and I miss the activity I had. But then, I do not have the strength to do it any more. I wonder if I did harm to my body and muscles by doing those exercises for all those years. I felt at the time they were doing me good.
An examination of the items that differentiated the three groups suggests that some of the dissimilarity might be due to differences in background characteristics such as age, education, or perceived income. In fact, the MS group was younger (average age was 52 years versus 62 years for the two polio groups), averaged one year less of education, and perceived fewer financial resources. So, for example, it is not surprising that the MS group rated lack of money as more of a problem than the two polio groups did. Consequently, age, perceived economic sufficiency, and education were used as covariates in MANOVAs comparing total barriers scores for the three groups. The results were essentially the same; the addition of these covariates did not change the statistically significant difference among the three groups.
Regression analyses to predict barriers scores
Hierarchical linear regressions were used to address the second research question concerning the influence of resources on the prediction of total barriers scores for each of the three groups. The models with incapacity scores entered first, followed by Personal Resources Questionnaire (PRQ), and the economic adequacy scores were associated with statistically significant F values to predict total barriers scores for all three groups. In addition, resources (defined as scores on the PRQ and perceived economic adequacy) significantly increased the prediction of barriers scores, after perceived impairment was entered into the equation. Table 2 shows the beta weights associated with each component in the final model, indicating that all contribute significantly to the prediction of total barriers scores. However, the adjusted R2 varied considerably across the three groups, from a high of 0.44 for the MS group to a low of 0.29 for those diagnosed with PPS, suggesting that other key factors are associated with the prediction of barriers scores in the latter group. Two background characteristics that have been related to barriers are age and years of education. Although their addition to the models left the adjusted R2 essentially unchanged for the MS group and the group without PPS, the adjusted R2 did increase to 0.31 for the PPS group with the addition of age and years of education. Both demographic variables had statistically significant beta weights in the final model. So, among respondents with PPS, those who were younger, had less education, experienced more incapacity, and perceived fewer social and economic resources reported significantly more barriers to health promotion.
This study confirmed what has been observed in previous research: persons with disabilities face significant barriers that interfere with their ability to promote their health. 3–8,12,22 While the polio sample was recruited nationally and the MS sample was recruited state-wide, these groups do not represent a random sample of people with these diagnoses. Results from this study should be interpreted with caution therefore, because of the self-selected nature of the survey respondents. Future research studies should recruit individuals who do not appear on disability group mailing lists, perhaps locating them through clinics or other community facilities. In addition, the relationship of barriers to health promotion should be explored in other groups of people with disabilities, including those with sensory or cognitive impairments.
A comparison of barriers scores across the three groups of people with disabilities in this study suggests that while there were statistically significant differences, these differences were associated with relatively small effect sizes (eta2 = 0.01 to 0.05). Given the large sample in these analyses, small differences may be statistically significant, but lack clinical or practical significance. Instead, all groups seemed to share some common experiences with barriers. All rated fatigue and impairment as their most significant barriers; these factors were rated at a level that suggests that most respondents saw them, at the least, as sometimes a problem for them. This finding is consistent with previous studies of persons with disabilities. 4,10,12
Even though group differences were generally small, both those with MS and PPS reported that fatigue was a bigger barrier than those not diagnosed with PPS, while those with PPS rated their impairment as more of a hindrance than did the other two groups. In fact, those without PPS reported fewer barriers overall. This pattern of ratings seems consistent with the differences in the three medical conditions and their associated symptomatology. Those with PPS or MS deal with a condition that is much less predictable than do those who had polio but were not experiencing PPS. The latter group had many years to adjust to the impairment, as most had their first experience as children and were not challenged to accept a disabling condition with an unpredictable trajectory.
It is not surprising that fatigue is seen as a major barrier to taking care of one's health for all groups in this study. Chronic fatigue is an ongoing challenge for people with MS. While some fatigue may be due to the underlying pathology, it is further complicated by fatigue due to de-conditioning. Both the individuals with MS and those who have had polio must deal with the de-conditioning that accompanies mobility impairments and must learn to pace themselves. They need guidance from fitness experts who can help them tailor an exercise program to their special needs, particularly since many polio survivors were told to avoid exercise in the past. Symptoms of MS (eg, spasticity, ataxia, muscle weakness, impaired sensation) may require adjustments of the type and the pattern of exercise; self-monitoring of body symptoms (eg, heat and fatigue) is essential to achieving the delicate balance of exertion that promotes health and “helps them avoid” adverse responses. Several investigators have documented how carefully designed and monitored progressive resistance exercises and cardiopulmonary conditioning can decrease general weakness and fatigue, increase muscle strength, improve cardio-respiratory fitness, and enhance the efficiency of ambulation in those with PPS. 26–30 However, persons with PPS must avoid overfatigue of muscles during exercise, as it may weaken and atrophy muscles. 28
Other health-promoting strategies may also help control the effects of fatigue. For example, people with MS have reported that nutritional strategies, such as scheduling meals to avoid low blood sugar and eating a well-balanced diet, helped them maintain their health and manage their fatigue. 15
The findings suggest that while personal resources add a significant unique variance to the prediction of barriers scores for all groups, the pattern of predictors differs slightly across groups. The data analysis revealed that age and education appeared to play a more prominent role in the prediction of barriers among those who have been diagnosed with PPS than for the other two groups. Perhaps age and education provide some protection against the negative impact of increasing incapacity on barriers for those who now find themselves dealing with the added complexity of PPS. These findings suggest that not only the diagnosis, but other aspects of the individual's life, must be considered when assessing a person's barriers to health promotion. To this end, it is interesting to note that the non–PPS group was much less likely to report they had become unemployed due to disability compared with those who had PPS or MS, perhaps reflecting the more stable nature of their disability. Health care providers should explore thoroughly the nature of the barriers individuals perceive to taking care of their health, so that they can target their interventions most effectively.
Since resources appear to influence the relationship between perceived incapacity and barriers, helping individuals with disabilities bolster their resources may lessen the negative impact of incapacity to barriers. Although it may be more difficult to alter a person's financial situation, it may be possible to work with them to increase his or her interpersonal supports. Families will obviously be a major support for many persons with disabilities, as attested to by the many comments the participants made about the positive impact of their family members. Nurses and other health care providers need to continue to find ways to educate and involve family members in promoting healthy lifestyles.
Concurrently, other sources of support should also be made available to people with disabilities. Resources, such as the toll-free number and online newsletter of the National Center on Physical Activity and Disability, provide the information and encouragement that persons with disabilities and chronic health conditions may need to overcome barriers to exercise. 31 Centers, such as the Health Promotion Center for Persons with Disabilities at the University of Illinois at Chicago and independent living centers around the country, are providing much-needed support to help persons with disabilities live more healthy lives. The Access Women's Outpatient Wellness Center in St. Louis, Missouri, is an example of a health care facility that provides holistic health care services for women whose mobility impairments make it difficult for them to position themselves on regular examining equipment. The center focuses on promoting wellness within the context of women's disabling conditions. 32 Health care facilities around the country should be encouraged to take similar steps to meet the wellness needs of their patients with disabilities and chronic health conditions. Nurses and other health care providers can also play a key role in providing the information and support needed to overcome barriers for many persons with disabilities. However, it should also be noted that due to the phenomenal success of the polio vaccine in the last century, few health care providers now have professional preparation—or contact—in treating people with polio. Providers will need to spend time educating themselves about this group's health care needs, by listening to the persons with polio—who have truly become the experts in living with this disease.
Many barriers for persons with disabilities exist at the community level and must be addressed with policies that target the community as a whole. A goal of Healthy People 2010 3 is to reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities. Nosek 8 and Harrison 33 have pointed out that full implementation of the ADA would eliminate many environmental barriers that individuals with disabilities experience in accessing good health care. In addition, health care providers must be educated about the attitudinal barriers that prevent persons with disabilities from leading healthy lives. Also, providers can make a critical contribution by advocating for the full inclusion of people with disabilities in all health-promoting activities and health care services.
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