Barriers to exercise in African American women with physical disabilities

Barriers to exercise in African American women with physical disabilities

182 Barriers to Exercise in African American Women With Physical Disabilities James H. Rimmer, PhD, Stephen S. Rubin, PhD, David Braddock, PhD ABSTRA...

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Barriers to Exercise in African American Women With Physical Disabilities James H. Rimmer, PhD, Stephen S. Rubin, PhD, David Braddock, PhD ABSTRACT. Rimmer JH, Rubin SS, Braddock D. Barriers to exercise in African American women with physical disabilities. Arch Phys Med Rehabil2000;8 1:182-8. Objective: To examine what factors African American women with one or more physical disabilities perceive as barriers to exercise and how they rank them. Setting: Department of Disability and Human Development at a major university. Study Design: Data were collected through telephone interview using a newly developed instrument (Barriers to Physical Exercise and Disability [B-PED]) that addressed issuesrelated to physical activity and the subjects’ disability. Subjects: Fifty subjects were asked questions about their participation and interest in structured exercise. Results: The four major barriers were cost of the exercise program (84.2%), lack of energy (65.8%), transportation (60.5%), and not knowing where to exercise (57.9%). Barriers commonIy reported in nondisabled persons (eg, lack of time, boredom, too lazy) were not observed in our sample. Only 11% of the subjects reported that they were not interested in starting an exercise program. The majority of subjects (8 1.5%) wanted to join an exercise program but were restricted by the barriers reported. Conclusion: African American women with a physical idisability are interested in becoming more active but are limited in doing so because of their inability to overcome several barriers to increasedphysical activity participation. Key Words: Exercise; Disabled persons; Women’s health; Barriers; Ethnic groups; Rehabilitation. 8 2000 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation HE VOLUMINOUS amount of research that has been T published in the field of exercise science over the last two decades has provided little information on the physical activity profiles of persons with disabilities.1*2An important aspect of improving the health of the 54 million Americans with disabilities3 is to emphasize higher levels of physical activity among this population.i*4 Not only is exercise important from the standpoint of promoting a higher quality of life by reducing From the Department of Diiabiity and Human Development, College of Health and Human Development Sciences, University of Illinois at Chicago. Submitted for publication October 23, 1998. Accepted in revised form June 22. 1999. Supported in part by grant RO4CCR514155-02 from the United States Centers for Disease Control and Prevention. Division of Child Development. Disability and Health, Sewndary Conditions Prevention Branch. No commercial party hating a direct 6nancial interest in the results of the research suppmtlng this article has or will confer a benefit upon the authors or upon any orgmdzation with which the authors are associated. Reptint requests to James H. Rimmer, PhD. Project Director, Center on Health FTomotion Reseah for Persons with Disabiities. University of Illinois at Chicago, Department of Diibiity and Human Development (M/C 626). 1640 West Roosevelt Road, ChIcago. IL 60608-6904. 0 UXK) by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation 0003~9993mcVTt102-52$3.oom

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secondary conditions and maintaining functional independence,5.6it is also an essential component of reducing health care expenditures.’ The Institute of Medicine (US) estimates that almost $300 billion is spent annually on health care for persons with disabilities* and emphasizes that health promotion programs must be established for this population if expenditures are to decreasein the future.9 In an effort to reduce health care costs and improve the quality of life in persons with disabilities, health professionals, advocates, and consumers are calling for an expansion of health promotion servicesfor this segment of the population4 Stuifbergen and BeckerlOnoted that the health and health behaviors of persons with disabilities have been overlooked and ways to reduce secondary conditions in this population must become a major focus in the public health community.“.‘* The main thrust for the growing interest in physical activity among the general population started around 1990 with the publication of the report, Healthy People 2000,r3 in which an expert panel developed health promotion objectives for the nation, including specific objectives in physical activity and physical fitness. The forthcoming document, Healthy People 2010, includes a chapter on health promotion objectives for persons with diabilities.r4 Data on the physical activity patterns of persons with disabilities remain scarce.i3-I6 Heath and Fentern” noted that there is a critical need to study barriers to physical activity in persons with disabilities to understand what prevents them from accessingand participating in physical activity programs.” There has been a recent effort to understand the specific health concerns of women with disabilities.‘s The 1992 Census reporti noted that 20% of the total female population has a disability-related work limitation. The proportion of women with physical disabilities is increasing, and minority women, in particular, have a higher rate of physical disability than the general population.20 In an article by Seelman and Sweeney2’ on the “changing universe of disability,” it was noted that disability is disproportionately greater among women and minorities. Fujiura and associates22found that prevalence of disability among African Americans was higher than whites, Latin0 Americans, and Asian Americans and was second only to Native Americans. Several studies23-25have noted that the health status of women with physical disabilities is poorer than the general population, and that more research is needed to better understand this disparity. In a study conducted by Stuifhergen and Roberts,26 women with multiple sclerosis had lower scores on physical activity participation than a normative sample of women without disabilities, and they lacked the knowledge and skills needed to exercise safely. Turk and coworkers27 reported that more research is needed to determine the relationship between health status and barriers to health promotion, including exercise, in women with cerebral palsy. Stuifbergen and coworkers28noted that “barriers [to health promotion including exercise] are a particularly salient topic for people with disabilities*’ since that topic lends insight into the potential causes of health problems among persons with disabilities. In the important report published by the Center for Research on

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Women with Disnhilities, x the following point was made concerning the exercise habits of women with physical disabilities: “We now have evidence that women with disabilities practice about the same health maintenance behaviors as women without disabilities, with one important exception, exercise. Many factors [barriers] may contribute to this difference, including a lack of accessible equipment, warnings from physicians that exercise may aggravate the disability, or the assumption that there is little benefit to exercise if you have a disability.” Without information on barriers that exist among women who have physical disabilities and are interested in participating in exercise programs, it is difficult to develop strategies that focus on improving their fitness and overall health. Although the literature includes several published studies on barriers to exercise in the general population,‘9-3’ to our knowledge there are none on barriers to exercise in African American women with physical disabilities. Our research question, in view of the dearth of literature, was to determine if African American women with physical disabilities experiences similar or different types of barriers to exercise as the general population. The purpose of this study, therefore, was to examine the barriers to exercise in a cohort of African American women with physical disabilities.

METHODS Subjects A convenience sample of 53 individuals with a severe disability were selected from a database located in the Assistive Technology Unit (ATU) of the Department of Disability and Human Development at the University of Illinois at Chicago. To receive servicesfrom the ATU, subjects had to be diagnosed with a disability by their primary physician. The names in the ATU database consisted of men and women from different racial backgrounds. Information on a person’s race was obtained from these files. A total of I IO persons were identified as African American women who had a physical disability. Of those, 52 were unable to be contacted because of nonworking telephone numbers or could not be reached. Of the remaining 58 persons 5 refused to participate. Three of the remaining 53 candidates were excluded from the data set because they were unable to comprehend the questions asked by the interviewer. Subjects ranged in age from I8 to 64 years (65% were within the ages of 50 to 64yrs; 3 1% were between 35 and 49yrs) and were classified as having a severe disability according to the Americans with Disabilities Act (ADA),19 which defined a severe disability as “unable to perform one or more activities, or as having one or more specific impairments, or as a person who used a wheelchair or who was a long-term user of crutches, a cane, or a walker.” Subjects resided in the city of Chicago and, with the exception of one subject, were not employed. Item Construction We developed the Barriers to Physical Exercise and Disability (B-PED) survey after an extensive review of published physical activity instruments32*33and physical activity methodology34q35found no published instruments specifically for persons with disabilities. After the survey questions were developed, they were reviewed by 12 individuals with physical disabilities. Questions that were ambiguous, unclear, confusing, or otherwise inappropriate were reworded or eliminated. The B-PED consisted of 34 items. Thirty-one items had three choices: “yes, ” “no,” and “don’t know.” The remaining three items were open-ended, two of which were follow-up questions

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that asked the subjects to explain their response if they responded “yes” to the questions “Would you have any concerns about exercising in a facility like a YMCA?” and “Do you feel that an exercise instructor in a fitness center like a YMCA would know how to set up an exercise program to meet your needs?” The last item on the B-PED was “Can you think of any other reason why you might not be involved in an exercise program or not exercising as much as you would like?” Data Collection All data were collected through a telephone interview. Calls were made by the lead investigator and a graduate research assistant who was trained in administering the B-PED. Five pilot telephone interviews were conducted on women with physical disabilities with a researcheron a third telephone line for the purpose of listening to the administration of the survey and independently rating the items. Data were compared on the B-PED; no major scoring differences occurred. The pretested (pilot) items were used with the remaining pool of subjects. The pilot subjects were included in our study cohort (n = 50). After a brief introduction, informed consent was read aloud to the respondent and the interview did not proceed unless the respondent consented. Respondents were assured confidentiality, told that there were no right or wrong answers, and informed that they could stop the interview at any time. The interview began with three screening items: (1) What is your primary disability? (2) Do you have full, partial, or no use of your arms? and (3) Do you have full, partial, or no use of your legs? If the respondent did not have a physical disability or had full use of her arms and legs, the interview was terminated, ensuring that subjects who were selected to be interviewed had a disability impairing their mobility. Since subjects were selected from a database of individuals who were currently receiving assistive technology services or had been receiving services within the previous 2 years, none of the phone interviews had to be terminated based on this screening item. However, three interviews were terminated early because subjects had difficulty understanding the questions. Although no specific mechanism was in place to screen subjects for a cognitive impairment, the interview was terminated if the examiner was unable to obtain lucid responses to test items and the subject was thanked for her time. After a subject passed the screening items, she was told that an exercise program was participation in some type of structured activity that was done on a regular basis such as walking, lifting weights, doing aerobics, or riding a stationary bike. The items were then administered in sequence. The interviewers were allowed to repeat the questions and provide the respondent with explanations to any of their queries. Both interviewers were in an exercise-related discipline with adequate background howledge of the items they were administering. For example, if a respondent asked “What is a fitness center?” when she was asked “Do you know of a fitness center that you could get to?’ the interviewer responded with a brief description or an example of a fitness center (eg, “. . .like a YMCA”) that would satisfy the respondent. After the B-PED items were administered, the interviewer asked 8 questions to obtain respondent characteristics. no questions related to age and education level were open-ended, and 6 questions related to income, marital status, race, and residence were yes-no or multiple-choice questions. During the interview, the investigator scored the subjects’ responsesusing the B-PED protocol. The Y (yes), N (no) and ? (don’t know) responses were circled in the margin of the protocol to the left of each item. Open-ended responses were written in blank spacesbelow each item. Interviews ranged in Arch

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length from 30 to 45 minutes. At the end of the interview the respondents were thanked for their time and asked if they could be interviewed again in the upcoming weeks. Twenty-six subjects were randomly selected for a second telephone interview 2 to 3 weeks after the first administration. All 26 subjects selected were contacted and completed the second administration. Test-retest stability for the 3 1 categorical items using Cohen’s kappa was .76. Interrater reliability was assessedusing two independent raters and resulted in a kappa of .86. Data on the B-PED were analyzed for descriptive and summary statistics such as means and frequencies and for cohort characteristics. Because of the homogeneity of the cohort and the small sample size, we determined it would be insuf8cient to perform any type of multivariate or factor analyses with our data. The present data are preliminary and should only be used to explore the degree to which African American women with physical disabilities perceive barriers to physical exercise. RESULTS Table 1 highlights the characteristics of the respondents. The majority of the subjects (71.1%) had a household income less than $7,500. The major conditions were arthritis, stroke, and multiple sclerosis.All subjects used some type of an assistive aid to ambulate. The most common assistive aid used was a cane, followed by a walker, wheelchair, and braces. Responding to questions about barriers to exercise (fig 1). the majority of subjects (82%) said they liked to exercise, and the same percentage stated that they would like to begin an exercise program. When asked “Have you ever exercised?” the majority (77%) had been involved in an exercise program at some point in their life. Despite 72% of subjects responding that an exercise program could help them, the same percentage did not know of a fitness center that they could get to. Only 5.3% of our sample believed that an exercise instructor in a fitness center like a YMCA would not know how to set up Table

1: Demographic

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d7,500 $7,500-$14,999 $15.000$24.999 r$25.000

Educational Level Less than high school degree High school degree College degree Graduate degree Disability Arthritis Stroke Multiple sclerosis Diabetes/heart disease Chronic obstructive pulmonary Other Assistive aids* Braces Cane Walker Wheelchair *Some

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an exercise program to meet their needs; 26.3% reported that they were not sure. Moreover, 62% of the respondents would not have concerns about exercising in a facility like a YMCA. Not surprisingly, 66% reported that they did not have any exercise equipment at home. Asked if they had a fear of leaving their home, more than half (61.5%) responded “no.” Almost two thirds of the respondents (63%) were told by their doctor to exercise and, of those, more than half reported that they were told to do specific activities. Only 25% of the subjects exercised more after their disability. When asked to rate the importance of exercise on a scale of 1 to 3, with 1 being “important” and 3 being “unimportant,” about three fourths said it was important. Exercise Preferences General preferences of exercise showed wide variability among subjects.When asked where, when, and with whom they would prefer to exercise, subjects reported varying levels of interest. The first question asked subjects if they would prefer to exercise in their home, fitness center, rehabilitation center, where they worked, or any combination of these settings. The majority of subjects (39.5%) preferred to exercise in their home, 15.8% preferred exercising in a fitness center, 13.2% in a rehabilitation center, 13.2% at home or a fitness center, 7.9% in a fitness center or rehabilitation center, and 7.9% said it did not matter where they exercised. The second question asked who they would prefer to exercise with-alone, in a group, both, or does not matter. Once again wide variability was seen among subjects: 39% said they would like to exercise in both settings, 28% preferred exercising in a group only, 23% preferred exercising alone, and 10% said it did not matter. The third question determined the time of day that they would prefer to exercise: 36% said morning, 17.9% said afternoon, 2.6% said evening, and 43.6% said it did not matter. Figure 2 illustrates the specific barriers in rank order. The four major barriers perceived by the African American women participating in our study were cost of the exercise program, lack of energy, lack of transportation, and not knowing where to exercise. Despite the majority belief that exercise will “improve one’s condition,” it was a unique finding that almost one fourth of our small sample were unsure this is true. Similarly, 13% of our sample were unsure about the health benefits from exercise or unsure if exercise would make their condition worse. It is also unique that “lack of time,” a salient barrier in the general population, was perceived overwhelmingly (92%) as not being a barrier among our population. Furthermore, motivation, laziness, or interest were not considered barriers to exercise among the majority of our respondents. DISCUSSION There is a critical need to develop, encourage, and promote physical activity among women with physical disabilities.20*27 Stuifbergen and Roberts26noted that health professionals often focus on treatments, medications, and education on managing the symptoms of a chronic disease or disability, but should focus more on health promotion strategies such as increased participation in exercise programs. Reducing health care costs and increasing physical independence in women with physical disabilities have become important priority areas for several federal agencies4 With growing awareness of the importance of physical activity to overall health,36 researchers must begin to study the specific barriers that prevent persons with disabilities from engaging in physical activity. To develop intervention strategies that have a higher rate of success,barriers that prevent a person with a physical disability from exercising must first be identified.

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like to exercise?

Would you an exercise

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like to begin program?

Have you ever exercised?

Do you feel that an exercise program could help you?

Do you feel that an exercise instructor in a fitness center would know how to set up an exercise program to meet your needs?

Do you know of a fitness that you could get to?

Would you have about exercising like a YMCA?

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Do you have any exercise at home that you use?

Are you ever afraid

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66%

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35% Did your doctor ever tell you to do anything specific? (for subjects who responded “yes” to the previous question?)

Did you exercise “more” after your disability?

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“More”

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On a scale “1 to 3” with “1” being Important and “3” being unimportant, how important is exercise to you?

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BARRIERS

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Lack of energy Lack of transportation Don’t

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Lack of motivation Health

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me from

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I’m too lazy to exercise Lack of interest Exercise

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Lack of time Exercise

will not

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Fig 2. Rank

order

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to exercise

Despite all the attention directed at physical activity and cardiovascular health over the last decade, information on barriers to physical activity in persons with disabilities is still scarce.i5 Understanding why persons with disabilities are not involved in habitual physical activity relates to the number of barriers that exist in the disabled person’s life, any of which can make it difficult or impossible for her to participate in exercise programs. To identify intervention strategies that successfully engage persons with disabilities in exercise programs, it may be important to study culturally, ethnically, and economically diverse groups individually so that findings can be particularized to specific cohorts of persons with disabilities.37 For this reason, our research has focused specifically on low-income African American women with physical disabilities who resided in an urban setting. The barriers to exercise reported in the general population are not congruent with our findings. Godin and colleagues29 reported that sedentary people who intended to exercise, but did not, found exercise too physically demanding and required too much time from their weekly routine. In a survey on fitness in Americans,38 the greatest barriers were not enough time and health reasons. Time constraints as a major barrier to exercise was also reported in two other investigations.39*40Several studies4tA3have shown that lack of motivation is a significant barrier to exercise in the general population. Other reported Arch

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barriers have included the convenience of the exercise setting,44.45 medical problems,46,47 and lack of social support. 4548.49 A major barrier reported in the Canada Fitness SurveySoon the general population was laziness. Our data revealed that lazinesswas only reported in 24% of the sample and also fell at the bottom of the barriers, ranking ninth out of 14 barriers. O’Neill and Reid”Oreported barriers data on an older population of Canadians (5.5 to 90yrs).30 They found that 40% of their sample mentioned that an illness or handicap prevented them from participating in exercise. We found the same percentage when our sample was asked if health concerns prevented them from exercising (40%). The only difference, however, was that our subjects were much younger (35 to 64yrs). O’Neill and Reid30 also reported that another common barrier was fatigue (35%). We asked subjects a similar question and found a much higher percentage. When subjectswere asked if a lack of energy was a barrier to exercise, 65.8% responded that it was. This barrier ranked second out of the 14 items asked. An environmental barrier that was reported in 39% of our sample was afraid to leave the home. This finding is similar to what Lee found in a population of older Australian women in which 34% of the sample said that they were reluctant to go out alone.51In a follow-up question to the subjects in our study who

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responded yes. the two reasons given for fear of leaving the home were crime and fear of falling. Several federal agencies including the National Institutes of Health and the Surgeon General’s Office have recommended walking as one of the best modalities for maintaining good aerobic capacity.s”.s’ Unfortunately, for a significant percentage of African American women who have a physical disability, the fear of falling or the high crime rate make it unlikely that they will be able to use this form of exercise to maintain their cardiovascular health. It is necessary, therefore, to develop other strategies to enhance physical activity participation among African American women with disabilities who reside in settings where there is a concern about crime or where physical impairment presents the risk of falling. CONCLUSIONS The findings from this study have a significant bearing on exercise programs appropriate for African American women with severe physical disabilities. Although the homogeneity of our sample precludes us from generalizing to the larger population of African American women with varying types of disabilities, it is clear that for an exercise program to be successful, certain barriers must be eliminated. Since the cost of joining a fitness center and lack of transportation were listed as the first and third highest barriers in our sample, and since many subjects expressed concerns about not knowing where to exercise or not trusting the competence of exercise staff in fitness centers, a home-based exercise program may elicit greater adherence than a communitybased exercise program if fitness equipment were provided to the individual. This strategy would eliminate the need to pay costly membership dues and to provide transportation to the exercise site. The need to purchase exercise equipment, however, would still present a significant barrier for individuals who are on public aid and living at or below the poverty level. The second most common barrier was lack of energy. Many of the women felt that they did not have enough energy to exercise. Although exercise does require some expenditure of energy, research indicates that exercise can improve one’s energy level by enhancing fitness, thus allowing the person to do more physical activity at a lower intensity level.5 It is important for clinicians to educate women with severe physical disabilities that an exercise program tailored to their needs would likely improve their fitness and increase their energy and vigor. Although this is the first published study to assess barriers to exercise among African American women with severe disabilities, more research is needed to determine if these same barriers exist in the general population of women with disabilities. Our sample was limited to African American women who were unemployed, had a low income and education level, lived in an urban setting, and had a severe disability. It would be interesting to determine the association that barriers to exercise have with race and socioeconomic status, as well as with the primary disability and accommodating secondary conditions. What is presently missing in the literature are data on a large heterogeneous sample of women with disabilities in which sociodemographic factors and type and severity of disability and secondary conditions are used to isolate their effects on adherence to exercise programs. Although we developed our instrument (B-PED) based on an extensive literature review and experienced researchers who themselves had a severe disability, it is possible that we may not have listed every possible barrier pertinent to our sample. Future research should address barriers specific to the target

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population. We may be unaware of all barriers that exist among African American women with physical disabilities.

I.

2. 3. 4. 5. 6.

7. 8. 9. IO. II. 12. 13.

14.

15. 16. 17.

18. 19. 20. 21. 22.

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