Barriers That Further Disablement: A Study of Survivors of Polio.
A paralytic disease that leaves varying degrees of disability, poliomyelitis struck the world in epidemic proportions in the 1950s and 1960s. The virus infected the spinal motor neurons, brainstem nuclei, or both, resulting in varying degrees of skeletal or bulbar musculature weakness. The degree of paralysis depended upon the number of surviving motor neurons. The surviving neurons re-innervated orphaned muscle fibers. Rehabilitation lasted up to 2 years, and the degree of residual disability was variable. The effects of this disease were both emotional and physical. Children were asked to stay at home as panic spread.
By the mid-1960s, the Salk killed-polio vaccine and Sabin's oral-live vaccine had ended the mass spread of the disease. The medical community rehabilitated those who were infected by the virus and attempted to immunize all others. Even though the vaccine has ended the mass spread of the disease, 100,000 people still become infected every year worldwide, and 10,000 die.
Today, there are approximately 1.63 million Americans living who survived acute poliomyelitis. Most polio survivors are 45-54 years of age. They have survived to be educated, have jobs, raise families, and be productive citizens. But do we know the mental and physical consequences of living with a disability over time?
A review of the literature revealed limited information on poliomyelitis and its sequelae. In the Medline database from its origin to April 2000 under poliomyelitis, there were 418 articles, 334 of which focused on postpolio syndrome. Comparatively, there were 17,313 articles focusing on multiple sclerosis, 6,601 on cerebral palsy; and 124,129 on stroke. A search of the CINAHL database from its origin to 2000 under poliomyelitis generated 248 articles. There were 133 articles indexed under postpolio syndrome. The same index search resulted in 820 articles focusing on multiple sclerosis, 749 on cerebral palsy; and 3,249 focusing on stroke. There was a drastic underrepresentation of research on polio when compared to the amount of research on other chronic neurologic disorders.
As a consequence of this dearth of research, there is little information about the people who have survived poliomyelitis. There have been reports of increased levels of secondary health conditions and comorbidities that may be related to social conditions. According to Campbell, Sheets, and Strong, people with disabilities have survived but have an increased rate of secondary health conditions such as fatigue and chronic pain. Accessibility to services for health has been reported to be a problem for those suffering from chronic disabling conditions. Social conditions such as economic status, stressful life events, social support, coping, occupation, alienation, and perceived control have been reported to be fundamental causes of disease. Continued societal restrictions may act to further the disablement process and increase a person's susceptibility to secondary conditions and comorbidity.
Two possible explanations of the relationship between pathology and social conditions lie in the disablement process model and the allostatic load model. The disablement process model places a strong emphasis on the person-environment fit and consequently greater responsibility on society for prevention of disability. Briefly, the disablement process has four components--pathology, impairment, functional limitation, and disability. Pathology is the molecular, cellular, or tissue abnormalities that signal injury. Impairment is the organ system damage that occurs as a result of the pathology. Functional limitation is the process of not being able to perform certain tasks, and disability is the inability to perform societal roles. Disability can be prevented. It is not a logical step to imply that due to pathology, impairment, or functional limitation, a person will always be disabled. Brandt and Pope argue that it is the interaction of the individual limitations and barriers or lack of support in the environment that result in disability--rather than the condition of the individual alone.
The disablement process in poliomyelitis typically began with infection by the polio virus, which would be considered the initial pathology. Impairment was expressed in the degree of damage to the neurological system and included weakness or paralysis of specific muscle groups. Functional limitation varied depending upon the degree and site of impairment within the neurological system. Disability was established if the pathology, impairment, and functional limitation were unsupported by the environment. An example of this would be the individual who was unable to continue work as a construction worker because of paralysis of the left arm. However, disability would not be seen in the individual with paralysis if assistive devices enabled him or her to continue to work as before.
The model of allostatic load may explain how stressors lead to secondary conditions. Secondary conditions, any physical or mental conditions occurring as a result of the primary condition, are negative outcomes that can be prevented or delayed. These are conditions such as muscle weakness in an already affected muscle, fatigue, or a swallowing difficulty that arises after the polio infection.
According to the allostatic load model,[10,13,20] early in life the relationship between environment and self can predispose the body to stress and disease over time. McEwen and Stellar define allostatic load as physiologic strains in the human body caused by repeated physiologic demands of environmental stressors that may lead to disease.[l0] As the allostatic load builds, the body must fluctuate to meet the demands of the environment. The increased demands cause neuro-humoral responses that lead to diseases such as hypertension. Higher allostatic load scores have been correlated with poorer cognitive and physical functioning and increased incidence of cardiovascular disease in a cohort of men and women 70-79 years of age.
Patients with polio have central deficits that contribute to muscle fatigue and decline in muscle performance. Psychological fear of abandonment during early childhood and alienation due to altered appearance have left those with polio with altered coping strategies. The physiologic and psychological impairments may have created layers of dysfunction that could be exacerbated if environmental conditions continue to stress the individual. As illustrated in Fig 1, these impairments in conjunction with a demanding environment may build to increase the allostatic load on polio survivors and place them at risk for further functional limitation and disease. A goal of healthcare providers should be to identify the environmental barriers that may lead to an increased allostatic load and actually seek to assist individuals to decrease these barriers.
It has been proposed that through a process of enhancement including biological, environmental, and lifestyle and behavioral modifications, the disabling process can be reversed; that is, the allostatic load created by the environmental barriers could be reduced. Consequently, fewer comorbid illnesses, disability, and secondary conditions would develop. The initial step is to determine the extent of disability, functional limitation, secondary conditions, and barriers to health in a population aging with a specific disability.
In this exploratory study the following research questions were addressed in a sample of polio survivors:
1. What functional limitations, secondary conditions, and comorbid illnesses are reported?
2. What are the perceived barriers to health promotion?
3. What are the relationships among functional limitation, barriers to health, comorbidity, secondary conditions, and disability?
Following approval of the local institutional review board, participants were recruited through notices in a local polio survivor newsletter and at a meeting of a local support group. Thirty-one polio survivors expressed interest in participating, and all completed the study. Each potential participant was mailed a packet containing a letter of information (informed consent), a questionnaire booklet, and a postage-paid return envelope. Privacy of the participants was protected through coded questionnaires that remained confidential. The questionnaires were self-administered and then returned in postage-paid envelopes to the principal investigator. Participants received $10 for completing the study.
Data were entered into SPSS version 9.0 for statistical analysis. Descriptive statistics and Pearson correlation were used to analyze the data.
The questionnaire booklet included 11 instruments that were being pilot-tested for a larger subsequent study of health promotion in persons with postpolio syndrome. The instruments used in this research are described below.
A background information sheet (BIS) was used to collect data on a variety of demographic and disease characteristics. This information was used to describe the sample. Age, ethnicity, educational status, economic status, and employment status were obtained on the BIS.
Additional information was obtained by using a polio-related questionnaire adapted with permission from the Wellness for Women with Polio Program, University of Michigan Medical Center. This scale assessed initial and recent degree of disability, year and age of acute illness, and type of polio paralysis.
Barriers to Health
The Barriers to Health Promoting Activities for Disabled Persons Scale was used to measure barriers--internal and external environmental phenomena--that are perceived as obstacles to health promotion. The barriers scale measures how often the listed barriers keep a person from taking care of his or her health. Responses are scaled from 1 (never) to 4 (routinely). Higher scores on this 18-item summated rating scale indicate greater perceived barriers. Scores can range from 18 to 72. Internal consistency (Cronbach's alpha) in this study was .79. It has been reported that this scale is capable of discriminating between disabled and nondisabled individuals' perceptions of barriers to health promotion.
Secondary Conditions and Comorbidity
The frequency of secondary conditions and comorbid illnesses was assessed in our participants by using a questionnaire adapted with permission from the Wellness for Women with Polio Program, University of Michigan Medical Center. This 21-item scale includes a list of secondary conditions and comorbid conditions reportedly experienced by polio survivors. For each condition listed, respondents indicated whether they have ever been diagnosed with the problem by checking yes or no. The number of secondary conditions is added to provide a total score. For this study, secondary conditions are defined as any physical condition that is the result of the primary condition poliomyelitis, and comorbid conditions are diagnosed disease processes that coincide with polio. The list of conditions was divided into conditions that were considered secondary to polio and living with its effect and conditions that were diagnosed as separate disease processes. For example, fatigue was considered a secondary condition and diabetes was considered a comorbidity. Content validity was established by review from a panel of experts.
The Incapacity Status Scale (ISS) was used to provide information specific to the functional limitation and severity of major symptoms present in participants with polio. It is a 16-item scale, with scores ranging from 0 to 64, that assesses degree of function in certain activities such as bathing, dressing, and walking. It is scored from 0 (no difficulty) to 4 (complete dependence or loss of control). Internal consistency (Cronbach's alpha) in this study was .78. This scale, which was originally developed and validated for use with persons with multiple sclerosis, was found to have construct validity in this population. For this study, items were reviewed by two expert consultants and judged to be valid for functional limitations experienced by polio survivors. Functional limitation is defined as the process of not being able to perform common tasks.
Disability is defined as the inability to perform societal roles. Disability was determined by asking employment status. Participants who responded that they were unemployed due to disability were placed into the category of disabled.
Thirty-one individuals with a history of poliomyelitis consented to participate in this descriptive pilot study of health and the effects of polio. All participants reported having physician-diagnosed poliomyelitis. Thirteen percent reported never being hospitalized for the virus; 10%, for 3 days to 3 weeks; 36%, for 3 weeks to 3 months; and 26%, for more than 3 months. The year they contracted polio ranged from 1939 to 1962, and the age at which they contracted the virus ranged from 2 months to 33 years. Fifty-two percent reported having spinal polio; 6%, bulbar polio; 29%, both spinal and bulbar polio; and 13% did not know the type of polio they experienced.
The current mean age of participants was 55.5 years with a range of 41 to 74 years. Most of the participants were female (71%), Caucasian (87.1%), married (71%), and college graduates (58%). Twenty-three percent worked full time for pay, and 23% reported that they were unemployed due to their disability. The participants reported 38 to 61 years since diagnosis of poliomyelitis. They have lived with the effects of polio for a mean time of 49.7 years.
Functional limitations were common among these participants. Scores on the ISS ranged from 4 to 38 with a mean of 17.8. Forty-two percent of participants reported difficulties with speech, hearing, or both that interfered with their communication. Fifty-five percent reported problems with mood, and 26% reported problems with cognition that interfered with activities of daily living. Eighty-seven percent reported problems with fatigue that caused mild to severe problems. Seventy-four percent reported a medical condition that required occasional to regular maintenance, and only 25% were able to walk 50 meters on level ground. Seventy-four percent were not able to get up and down from a chair or toilet seat without assistance, and 6.5% percent of those had to be completely lifted or moved. Only one subject reported being able to walk up and down a flight of 12 steps without holding onto anything or anyone. Thirty-five percent reported changes in their sexual functioning, and 26% were concerned with these changes. Fifty-two percent reported problems with bowel function, and 80.6% reported some problem with bladder function. Fifty-two percent were unable to bathe themselves without assistance; 54.8% were unable to dress themselves without help. Twenty-three percent could not feed themselves without aid. Table 1 lists the comorbid illnesses reported by this sample. The most common comorbid condition was scoliosis/kyphosis/lordosis (71%), followed by depression (58%), and hypertension (52%). The number of comorbid illnesses ranged from 0 to 8 with a mean number of 3.6. Table 2 lists the secondary illnesses reported by this sample. The most common secondary condition was fatigue (84%), followed by sleep disturbances (81%), and chronic pain (65%). The number of reported secondary conditions was 1 to 8 with a mean number of 4.3.
Table 1. Frequency of Cormorbid Illnesses Reported by Persons with Poliomyelitis Persons with Poliomyelitis Comorbid Illness Percentage Number Scoliosis/kyphosis/lordosis 71.00 22 Depression 58.10 18 Hypertension 51.60 16 Osteoporosis 38.70 12 Bladder dysfunction 35.50 11 Contractures 29.00 9 Bowel dysfunction 29.00 9 Carpel tunnel syndrome 22.60 7 Anemia 22.60 7 Asthma 19.40 6 Obesity 19.40 6 Visual problems 12.90 4 Chronic obstructive pulmonary disease 3.20 1 Emphysema 3.20 1 Diabetes 3.20 1 Table 2. Frequency of Secondary Conditions Reported by Persons with Poliomyelitis Persons with Poliomyelitis Secondary Condition Percentage Number Fatigue 83.90 26 Sleep problems 80.60 25 Sensitivity to temperature 71.00 22 Chronic pain 64.50 20 New muscle weakness PIM(*) 58.10 18 New muscle weakness PUM(**) 51.60 16 Swallowing problem 35.50 11 Isolation 12.90 4 (*) PIM = previously involved muscles. (**) PUM = previously uninvolved muscles.
Results from measurement of barriers to health promotion, using the Barriers to Health-Promoting Activities for Disabled Persons Scale, are shown in Table 3. The scores ranged from 20 to 49 with a mean of 35.2 and an SD of 7.8. Of the 18 barrier items on the scale, fatigue and impairment had the highest mean scores. Inconvenient buildings, feelings of helplessness, lack of safety, and lack of support from healthcare providers were also perceived to be frequent barriers to health promotion in this sample.
Table 3. Barriers in Order of Mean Score as Reported by Persons with Poliomyelitis Rank Barrier Mean Score 1 Fatigue 2.77 2 Impairment 2.66 3 Inconvenient buildings 2.32 4 Helplessness 2.20 5 Lack of safety 2.13 6 Lack of help from healthcare providers 2.12 7 Interferes with other responsibility 2.00 8 No interest 1.98 9 Lack of information 1.97 10 Lack of time 1.97 11 Poverty 1.94 12 Embarrassment about appearance 1.90 13 No help 1.74 14 Feeling inadequate 1.68 15 Bad weather 1.55 16 Lack of support from friends and family 1.54 17 Difficulty with communication 1.52 18 Lack of transportation 1.45
Pearson correlations were used to measure the relationships among functional limitation, barriers, comorbidity, secondary conditions, and disability and are listed in Table 4. The total barriers score was significantly correlated (0.41) to disability at the 0.05 level. Disability was not significantly correlated with the total number of comorbid illnesses or secondary conditions or with functional impairment score. Scores on the measure of functional impairment were significantly correlated with the number of comorbid illnesses (0.56) and with the secondary conditions (0.60) at the 0.01 level. The number of years that the individual has lived with the disability was significantly correlated (0.46) with the number of secondary conditions at the 0.01 level but not with the number of comorbid illnesses.
Table 4. Correlations Between Major Variables in the Model of Disablement UDD FI YSD Number of comorbid illnesses (CMI) -0.06 0.564(**) 0.344 Number of secondary conditions (SC) 0.17 0.597(**) 0.344 Barriers to health promotion (BHP) 0.409(*) 0.338 0.183 Years since diagnosis with polio (YSD) 0.2 0.14 1 Functional impairment (FI) 0.338 1 Unemployment due to disability (UDD) 1 BHP SC CMI Number of comorbid illnesses (CMI) 0.335 0.70(**) 1 Number of secondary conditions (SC) 0.123 1 Barriers to health promotion (BHP) 1 Years since diagnosis with polio (YSD) Functional impairment (FI) Unemployment due to disability (UDD) (*) Significant at p = .05. (**) Significant at p =. 01.
Results from this study must be interpreted with caution because of the small convenience sample and the use of self-report data. However, findings do indicate a low level of function and high incidence of comorbidity in an aging population with an existing disability. According to the National Health Interview Survey, high blood pressure is found in 22.2% of normal 45- to 64-year-old Americans, which is less than half the rate of our sample. Asthma, which can be found in 5.1% of the 45- to 64-year-old American population, was present in 19.4% of our group. Low levels of function combined with high comorbidity place the disabled at further risk and create questions about access to health care.
The findings from this study are consistent with the model of disablement described by Brandt and Pope. Disability--inability to perform social roles--was related to perceived barriers but not to functional limitation, comorbidity, or secondary conditions. This suggests that the inability to work may be due to perceived environmental barriers and not to functional limitations, comorbid illnesses, or secondary conditions. Further research with larger samples is needed to test this model using more robust statistical methods.
We were not able to provide a direct measurement of allostatic load within this study. Allostatic load may affect health over time because the number of years lived with a disability was related to the number of secondary conditions. This provides support for the theory that stress over time creates conditions that are a result of the primary impairment. Allostatic load is a multidimensional physiologic variable that may be influenced by variables within the environment other than barriers to health promotion. A larger sample with direct measurement of allostatic load, as well as a longitudinal design, may be needed to capture the effects of allostatic load within the environment. This could be accomplished by measuring catecholamine and blood pressure levels over time and comparing them to levels of perceived barriers.
The Barriers to Health Promoting Activities for Disabled Persons Scale includes perceptions of secondary conditions as barriers to health. The barrier with the highest mean score was fatigue, which can be considered a secondary condition. However, although secondary conditions were not correlated with disability, barrier were. This indicates that not only the perception of the secondary condition as a barrier but also the presence of the secondary condition interact to create the disability.
Barriers to health promotion activity have been studied in other disabled populations[4,14,15,16,18,19] and have been related to participation in health-promoting activities. Mean scores on the barriers to health promotion activities scale for nondisabled populations were significantly lower than those for disabled populations. In a group of individuals with a wide range of disabilities, scores ranged from 18 to 63 with a mean of 33.5 and SD of 8.86. Health-promoting behaviors may be a mediator that influences the rate of secondary conditions and comorbidity. By perceiving fewer barriers, the person may practice more health-promoting behaviors and, therefore, develop fewer secondary conditions and cormorbid illnesses. In our population of polio survivors, one of the top barriers to health (6 of 19) was lack of supportive healthcare providers. This may indicate a frustration with the current level of care being provided to patients who have survived the initial effects of polio and are currently seeking care after years of living with a disability. In a population of disabled participants with multiple sclerosis, barriers were assessed in an urban and a rural population. The barriers to health promotion reported by urban populations were fatigue, impairment, lack of time, other responsibilities, and lack of money. The rural population reported lack of convenient facilities, fatigue, lack of money, impairment, and feeling that health-promoting activities would not help as barriers. Lack of support from healthcare providers was ranked third from the last for both the rural and urban populations. The frustration with healthcare providers reported by the polio survivors may contribute to their high level of comorbidity and secondary conditions.
Nurses have traditionally focused attention on the individual in their efforts to reduce disability and secondary conditions. Findings from this study suggest interventions that aim to promote the health of this population should also consider environmental barriers. Little research has been conducted on the experience, needs, and possible interventions that are appropriate to persons living with late effects of polio; thus, effective interventions remain unknown. Environmental barriers may create obstacles that make traditional health promotion efforts less effective.
Further research into the disablement process and the perceived barriers to health is a fundamental step in attainment of successful aging with disability. The necessary direction for research is to explore all barriers that may limit the health of those living with polio and its effects. With this research, interventions can be developed that guide practice. Health care can affect all aspects of a person's life. Supportive care can promote a good quality of life; nonsupportive care can create barriers, which may lead to further disability and decreased function.
This project was supported by Grant R01NR03195, National Institute of Nursing Research, National Institutes of Health, and the Dean's Fund for editorial services, the University of Texas at Austin School of Nursing.
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Questions or comments about this article may be directed to: Tracie Harrison, MSN RN FNP, PO Box 344, Thorndale, TX 76577, or e-mail firstname.lastname@example.org. She is a doctoral student at the University of Texas at Austin.
Alexa Stuifbergen, PhD RN, is the associate dean for research, University of Texas at Austin.
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|Author:||Harrison, Tracie; Stuifbergen, Alexa|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Jun 1, 2001|
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