A review of social and environmental barriers to physical activity for adults with intellectual disabilities

Disability and Health Journal 2 (2009) 57e66 www.disabilityandhealthjnl.com

A review of social and environmental barriers to physical activity for adults with intellectual disabilities Amy E. Bodde, M.P.H.*, Dong-Chul Seo, Ph.D. Department of Applied Health Science, Indiana University, Bloomington, IN 47405, USA

Abstract Background: There is a higher prevalence of sedentary behavior among adults with intellectual disability (ID) compared to the general population. The majority of research on this topic has focused on assessing physical activity (PA) levels and there are relatively few studies addressing barriers to PA (including exercise) in this population. Objective: It is important to analyze the PA barriers faced by adults with ID in order to develop and implement intervention programs. Methods: A systematic research review was conducted to analyze the barriers to PA for adults with ID. Original research articles published after 1980 with primary intention of identifying PA determinants of age 18þ adults with ID were included. Results: In total, 837 citations were returned, and after screening for repeated articles and inclusion criteria, 7 were included in the analysis. The primary barriers that reoccurred throughout the papers were transportation issues, financial limitations and lack of awareness of options. Other salient barriers included negative supports from caregivers and authority figures (e.g. teachers, coaches and parents) and lack of clear policies for engaging in regular activity in residential and day service programs. Conclusion: This study reveals clear barriers to PA to target. Of primary importance is the development of policies among agencies that serve individuals with ID that could help minimize transportation, financial, policy and educational barriers, which are more modifiable than negative supports. Ó 2009 Elsevier Inc. All rights reserved. Keywords: Physical activity; Barriers; Intellectual disability; Mental retardation; Health

Adults with intellectual disability (ID) have a high rate of sedentary behavior, and participate in even less regular physical activity than the general population. This disparity is striking considering the epidemic crisis of sedentary living and its heath consequences facing the general population in the United States today [1]. Adults with ID are also disproportionately affected by overweight and obesity [2] and have high prevalence rates of the chronic health conditions associated with inactivity such as high cholesterol, high blood pressure, and cardiovascular disease [2-4]. Like sedentary living, adults with ID are also affected by these conditions at even a higher rate than the general population [5-8]. This disparity between adults with ID and the general population deserves more attention and research, and there is a pressing need for effectively designed interventions in health promotion practice. The United States government has also taken notice of these health disparities as exhibited through the document * Corresponding author: 1025 East Seventh Street. Fax: (812) 8553936. E-mail address: [email protected] (A.E. Bodde). The authors have no financial disclosures or conflicts of interest to declare. 1936-6574/09/$ e see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.dhjo.2008.11.004

Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation from the U.S. Public Health Service [9] and the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities [10]. Each of these national publications has made a charge to increase health research and interventions for people with disabilities. There is still significantly more to be done to alleviate these disparities and effectively promote health in this population. Because of the contribution of sedentary living to obesity and chronic health conditions [11], it is critical to understand determinants of physical activity (PA) for adults with ID to inform policies and recommendations [6,12-15]. Studying barriers is an essential precursor to the implementation of successful PA interventions for people with ID. For adults, personal barriers to PA include one’s psychological, cognitive, and emotional states and one’s motivation and persistence to be active. Some studies have demonstrated that personal barriers faced by people with ID are similar to those of the general population such as age, lack of self-efficacy, lack of interest, and preference for sedentary activities [6,15-17]. Other types of barriers include availability of resources, safety, or built environment [7,15-17]. These

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environmental and social barriers for people with ID may be lack of transportation to an exercise facility, unavailability of staff for assistance, or unsafe areas or streets in which to walk. In general, barriers and facilitators to PA fall into five categories: demographic/biological; psychological, cognitive, and emotional factors; behavioral attributes/skills; social/ cultural factors; and physical environment factors [14,18]. It is usually a combination of these personal, social, and environmental factors that determines PA behavior [17,19]. Because it has been consistently documented that most adults with intellectual disability are not participating in the recommended amount of PA as defined by the U.S. government [14], the issue that needs to now be addressed by public health and disabilities professionals is how to improve PA participation to reduce their risk of chronic diseases associated with obesity and physical inactivity. While understanding the barriers to PA is important for any population, the unique aspects of this population warrant special study into their reasons for being inactive. For adults with ID, it is important to focus on the most modifiable social and environmental determinants. Policy-level changes in environmental and social barriers may affect a greater number of people than individual-level PA interventions [20]. These types of barriers are especially pertinent to adults with ID because of the great effect that others have in their lives. Those living in staffed group homes or institutions often lack volitional control over many of their activity choices [12,21]. Social support has been found to be predictive of PA in the general population [20,22], and it is probable that social support is an equal or even more important independent predictor of PA among adults with ID. In addition to social determinants, addressing environmental and structural barriers are critical as well. Messent, Cooke, and Long [7, p. 418], state that adults with ID have ‘‘almost no control over their environment and few opportunities to be physically active.’’ Even for people with ID who live independently, there may still be concerns with transportation, finances, or safety that prohibit them from achieving the recommended amounts of PA [23]. This may be due to the fact that choice making is limited when one lacks these aforementioned resources [24,25]. Because of the lack of volitional control adults with ID often have over their surroundings, these environmental and social barriers must be alleviated as much as possible before (or in conjunction with) attempting to alleviate the personal barriers associated with insufficient PA. Removing perceived barriers does not assure that PA would increase among adults with ID [26, p. 402]. However, there is extensive evidence that barriers are correlated PA behavior [27-30]. Without first addressing modifiable environmental and social barriers, tackling the personal, motivational, or cognitive-emotional barriers would be futile. The study of PA determinants for people with ID has increased in the past decade, and many themes are beginning to emerge that offer better understanding of these behaviors which can guide modifications among direct

service providing agencies. This paper offers an overview of the environmental and social barriers to PA for people with ID identified in scholarly literature thus far.

Methods An in-depth search was conducted using the online databases Academic Search Premier, MEDLINE, Educational Resource Information Center (ERIC), Health Source Nursing/Academic Edition, PsycARTICLES, SPORTDiscus, and CINAHL Plus with Full Text. The key words used were ‘intellectual disabil* or mental disabil* or mental retard* or learning disabil*’ and ‘adult or male or men or man or female or women or woman’ and ‘physical activit* or exercise’. All of the search key words were entered at the same time. The electronic search was supplemented by a review of relevant bibliographies and consultation with experts. Inclusion criteria included original research articles, published after 1980, with a primary intention of identifying PA determinants. Participants had to have intellectual or learning disabilities and be at least age 18. Articles were excluded if they were review articles, commentaries, included children or adolescents, or included subjects with primarily physical disabilities. Those with major physical disabilities were excluded because of the unique barriers they face in achieving adequate PA.

Results The electronic search yielded 837 results. These citations were scanned for irrelevant articles and duplicates, and 7 articles were included in the analysis. The reference list of each article was reviewed, but no more articles were added to the review. Table 1 offers a synopsis of these articles. The strength of each qualitative study was evaluated using Daly et al.’s hierarchy for evaluating qualitative health research [31]. Daly et al. provide criteria to rank qualitative research in terms of potential strength of evidence-for-practice. The ranking ranges from single case studies (level IV), which provide the lowest evidence-forpractice to descriptive studies (level III), then conceptual studies (level II) and finally generalizable studies (level I), which provide the highest level of evidence-for-practice. The two quantitative studies were classified into the following levels of evidence from Eccles et al. [33]: Ia: Evidence from a meta-analysis of randomized, controlled trials Ib: Evidence from at least one randomized, controlled trial IIa: Evidence from at least one controlled study without randomization

Lack of guidance from caregivers and negative supports

Weather, cost, health concerns

Mild and moderate learning disabilities

Down syndrome and mild to moderate intellectual disability Mild mental retardation

Intellectual disability

Direct (n 5 24), Proxy (n 5 12)

Direct (n 5 44), Proxy

Direct

Direct

Level II: Conceptual Study (31) Category III (32)

36

44

12

Messent et al., 2000

Heller et al., 2002

Frey et al., 2005 Temple, 2007

37

36 Messent et al., 1999

Quantitative;survey and scales supplemented by interviews Qualitative; interpretive ethnography Quantitative: Correlational

19 Hawkins and Look, 2006

Qualitative; In-depth interviews

Category III (32)

Mild and moderate learning disabilities Direct (n 5 24), Proxy (n 5 12)

Level III: Descriptive Study (31)

Transportation limits, lack of clear policies in day programs, lack of resources, personal financial limits, staffing limits, location, limited options in community leisure Confusion and lack of training on ‘‘ordinary living principles,’’ tension between parents and caregivers, segregated leisure opportunities, age-appropriateness Lack of transportation, cost, inaccessibility of fitness centers, no one to help train them, not knowing where to exercise

Moderate to severe learning disabilities Proxy

40

Qualitative; Diary records and semi-structured interviews Qualitative; In-depth interviews

Level III: Descriptive Study (31)

Lack of support from others, lack of opportunities (some due to lack of funding), lack of money, lack of transportation, lack of clear policies, staff and family member unavailability, staff’s attention directed to another consumer. Lack of awareness of options, financial constraints, risk assessment issues. Intellectual Disability Direct (n 5 9), Proxy (n 5 31)

Level III: Descriptive Study (31)

Significant environmental barriers/facilitators found Type of disability Direct or proxy reports

Level II: Conceptual Study (31)

Ranking N

Qualitative; Focus groups

Quality scores were applied to each study as well. Each study was appraised based on a modified set of Russell and Gregory’s criteria for methodological soundness [33]. They recommend evaluating the validity of studies based on the following questions: 1. Is the research question clear and adequately substantiated? 2. Is the design appropriate for the research question? 3. Was the sampling method appropriate for the research question and design? 4. Were data collected and managed systematically? 5. Were the data analyzed appropriately? [33] Using these guidelines, we gave each study a quality score ranging from 0 to 5, 5 being the highest, based on whether they met each of the guidelines. Quality scoring is outlined in Table 2.

Qualitative Studies

Temple and Walkley, 2007

Methods

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IIb: Evidence from at least one other type of quasiexperimental study III: Evidence from descriptive studies, such as comparative studies, correlation studies, and case control studies IV: Evidence from expert committee reports, opinions or clinical experience of respected authorities, or both [32]

Author

Table 1 Synopsis of Reviewed Articles on the Social and Environmental Barriers to Physical Activity for Adults With Intellectual Disabilities

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The first article describes a qualitative, focus group study conducted by Temple and Walkley in 2007 [34]. Using the Precede/Proceed health promotion model, they interviewed 6 focus groups comprised of individuals with ID, their caregivers, parents and managerial staff. This conceptual study (level II) is based on a sound literature review, usage of a theoretical framework, and rigorous focus group procedures and analysis, meriting a quality score of 5. The analytical strategies were a particular strength of the study, as the authors described the established qualitative techniques used to meticulously sort and code the interview data. Identified environmental barriers included lack of support from others, lack of opportunities, lack of money, transportation limitations, lack of clear policies, staff and family member unavailability, and staff member’s attention directed to other consumers. These barriers were cited from a combination of individuals with ID and proxy reports from caregivers. Most interestingly, the proxy reporters often assigned the barriers to PA to the internal characteristics of the individuals with ID; for instance they stated that the individuals lacked motivation, preferred other activities, or were not persistent. People with ID tended to report environmental and social reasons for low PA such as lack of support from others, lack of options and opportunities, and unavailability of staff and/ or family members. Some staff and parents had the

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60 Table 2 Quality Assessment of Reviewed Studies

Temple, et al., 2007 Hawkins et al., 2006 Messent et al., 1999 Messent et al., 2000 Heller et al., 2002 Frey et al., 2005 Temple, 2007

1. Research question clear/ adequately substantiated?

2. Design appropriate for research question?

3. Appropriate 4. Data collected and 5. Data analyzed Quality sampling method? managed systematically? appropriately? Score

Yes Yes Yes Yes Yes Yes Yes

Yes Yes No Yes Yes Yes Yes

Yes Yes Yes Yes Yes Yes Yes

perception that a number of care-giving staff lacked skills or confidence to promote exercise, and that some fitness professionals lacked the skills to work with people with ID. This indicates that both disability and fitness professionals may benefit from additional training in those respective areas. Many of these same findings were supported by Messent, Cooke, and Long, as they assessed barriers to PA of 24 adults with mild to moderate learning disabilities, using both direct and proxy reports (from 12 care-giving staff) from in-depth interviews. This descriptive study (level III) provided illustrative quotes and described emergent themes, but lacked a rationale for the design or description of the analysis of the interviews. Only interview data was collected; there were no objective PA measures like many of the other studies. Readers could benefit from a better description of interview techniques and content analysis. A quality score of 2 was awarded due to the design, measurement, and analysis limitations. Again, residential staffing ratios were primary barriers to activity. As staff members’ attention was directed toward consumers with higher needs, they were not available to provide opportunities for PA with other residents. The same was true in day care provision settings. A related barrier was resource and funding limitations of the social service agency providing residential care and day program services, which limited the number of staff that could be hired and contributed to staffing constraints and unavailability. The personal financial limitations of people with ID also contributed to lack of PA opportunities, as funds were often directed towards other important priorities. Both personal and agency monetary constraints recur throughout these studies: nearly all identify prohibitive cost as a barrier. It was also identified that there were limited options in community leisure, and that leisure activity services offered in the community were not appropriate, accessible or equipped for adults with learning disabilities [7]. Unclear policy guidelines for residential service providers also contributed to staff’s lack of promotion of PA and leisure. Transportation limits were also noted, and were also closely related to budgetary concerns, staffing limitations, and geographical location [7]. Messent, Cooke, and Long published an additional paper discussing secondary barriers to PA using the same sample. They defined these secondary barriers as ‘‘subtle’’ barriers revealed in qualitative interviews with the residential staff

Yes No No No No Yes Yes

Yes No No No No Yes Yes

5 3 2 3 3 5 5

[35]. It must be noted that these ideas were speculative and not necessarily explicitly stated by the caregivers. It appears that the authors used a content analysis method in this second paper, and applied theoretical concepts to analyze these results; however, it is still a descriptive study (level III) relying on interviewee quotations and a nondiversified sample. The paper lacks a specific explanation of the analysis methods, so it is impossible to know if the data were managed and analyzed rigorously, warranting a quality score of only 3. Yet it illuminates some practical considerations and is hypothesis-generating. The authors inferred from these interviews that some participants disliked segregated PA opportunities, and wanted to be integrated into more activities of mainstream society. They also found that the staff’s striving for age-appropriateness (only encouraging activities that are congruent with a participant’s chronological age) in PA may prohibit participants from finding enjoyable PA options. The authors discussed the delicate balance between the residents’ right to choice-making and the staff’s encouragement of good PA behavior. Balancing the right self-determination of people with ID while promoting good health habits can be difficult for residential caregivers. Themes of parental overprotectiveness also emerged in this study and are supported by Hawkins and Look’s finding of risk-assessment concerns [36] and Frey, Buchannan, and Rosser Sandt’s finding that there are negative supports from parents and caregivers [6]. In this 2005 qualitative study, the authors used an interpretive ethnography framework to conduct interviews with 12 adults with ID about their perceptions of PA. The authors used this particular methodology to emphasize the importance of the perceptions of the adults with ID themselves, instead of their caregivers’ proxy reports, as is often the case. The interview information was supplemented by additional data sources as well: PA data from accelerometers, 7-day activity diaries, and informal observations. This is a conceptual study (level II) with a quality score of 5, due to their theoretical framework which guided purposive sampling, the extensive literature analysis, and sound interview and theory-based data analysis procedures. The authors identified two major themes: lack of guidance from caregivers, and the aforementioned negative supports. Lack of guidance was characterized by the fact that the participants felt they could not participate in PA without outside assistance. Negative supports were negative messages about PA from

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important others, such as caregivers or coaches [6]. It was noted that some of these discouraging messages came from caregivers with good intentions to protect and nurture these participants. However, it was perceived that such messages about ‘‘being careful’’ or ‘‘not overdoing it’’ actually unnecessarily hindered these adults with ID from being sufficiently active. In addition to these main findings, this article also supplemented the findings of the previously mentioned articles, identifying barriers such as financial constraints and lack of transportation, and non-surprising barriers such as weather and time concerns. The authors determined that lack of guidance and negative supports were the most salient among the various barriers cited; however, it is difficult for the reader to gauge the impact of these barriers relative to the other barriers they identified. Hawkins and Look explored the barriers to PA using proxy reports [37]. In this study, caregivers (house leaders and day support staff) provided information about their consumers living in supported residential settings. This descriptive study (level III) documents the identified barriers and makes practical suggestions for alleviating them, but uses no theoretical framework for analysis. This study is also limited by the fact that they only collected proxy reports and did not include the perceptions of the consumers, and it provides little statistical rationale for the relative importance of the barriers [36]. Further, there was no indication that the measures they used, daily diaries and semistructured interviews, were valid and reliable for this population. The identified barriers were reported as Likert scale scores; however, the authors did not mention or describe the instrument used. The lack of the aforementioned methodological considerations warrants a quality score of 3 for the study.

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adults with ID reported barriers of lack of transportation, prohibitive costs the unavailability of anyone to help train them, and inaccessibility of fitness centers, in that order [37]. This lack of guidance is reflective of the findings of Temple and Walkley [34], Messent, Cooke, and Long [7], and Frey, Buchanan, and Rosser Sandt [6]. The caregivers added that not knowing where to participate in PA was also a barrier [37], which is reflective of Hawkins and Look’s findings as well. Temple explored the determinants of PA in a study of 37 adults with ID. As a correlation design, this study also ranks as a category III level of evidence [32]. Reliability for both measures, a survey and pedometer, were reported as adequate for this population and a quality score of 5 was warranted. Step counts measured by a pedometer were correlated with barriers, enjoyment and preferences; the three tenets of the Behavioral Choice Theory and found that barriers to PA and preference for sedentary behavior were significantly correlated with lower step count. Sedentary groups (!5,000 steps per day) identified different barriers than the active groups (>10,000 steps per day). Not surprisingly, sedentary participants reported ‘‘significantly more barriers and also reported barriers that suggest that they might not be attempting to be active’’ [15, p. 285] such as feeling lazy, feeling like they were prohibited from PA, and weather. Active participants were more likely to cite cost as a barrier, which Temple indicated was likely because they had actually pursued PA opportunities and found them expensive. Temple reported all of the PA barriers identified and although there was a statistically significant difference between the types of barriers identified by the sedentary groups versus those identified by the most active groups, there was only a descriptive analysis of the relative significance of the barriers, making it difficult to assess their importance.

Quantitative Studies Heller, Hsieh, and Rimmer reported on a quantitative study in 2002 that specifically looked at PA determinants for adults with Down syndrome and ID framed by the Social Cognitive Theory. Several survey instruments guided both direct and caregiver interviews. Using the criteria from Eccles et al., this correlation study offers a category III level of evidence [32]. While reliability was reported for the ‘‘adaptive behavior,’’ ‘‘perceived outcomes,’’ and ‘‘barriers to exercise’’ measures, there was no indication that the method of measuring exercise participation (caregiver reports) was valid or reliable. While the analysis was thorough, it may not have been appropriate to run multiple regression analysis with a small sample size of 44. Because of these measurement and analysis limitations, a quality score of 3 was assigned. Results showed that age, outcome expectations, and access barriers were significant predictors of PA participation. The access barriers were determined by Heller et al.’s Exercise Barriers Scale. Factor analysis of this 18-item Likert-type scale determined these access barriers. The

Additional articles Other articles were identified that also discussed social and environmental barriers but were excluded from the review because they did not meet the inclusion criteria. However, they offer some helpful insights into the lives of people with ID. Barriers to PA for people with ID seem to be similar to barriers to general leisure participation. A 2001 article by Beart et al. found that lack of transport and lack of social support were commonly cited by their participants with ID as barriers to leisure [38], both of which were identified as barriers to PA in this review. Neumayer and Bleasedale investigated lifestyle preferences of people with ID and also found that activity participation was hindered by lack of ability to use public transportations and lack of awareness about the leisure activities available to them [39]. These studies both complement the findings of the primary review articles. Heller et al., in 2002, assessed the barriers to PA for adults with cerebral palsy (CP). This article was excluded because

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X X

Location (proximity to fitness centers or open space)

X

X

Lack of awareness of the options

X X X X X

X

X

X X

X X

X X

X X X X

Temple and Walkley, 2007 Hawkins and Look, 2006 Messent et al., 1999 Heller et al., 2002 Frey et al., 2005 Temple, 2007

Lack of transportation

*Messent et al. (2000) were excluded from this table because the secondary barriers identified did not recur with any other study.

X X X

Family member or staffing constraints Lack of opportunities/ limited options

Lack of clear policies in home or day program services

Discussion

Risk assessment/ discouragement from others for safety reasons Lack of support from others Lack of money/ financial constraints

Table 3 Recurring Barriers to Physical Activity for Adults With Intellectual Disabilities

the authors measured some unique barriers specific to adults with CP, some of whom did not have ID. The findings are relevant however, and it was found that PA participation was significantly influenced by the caregiver’s perceived benefit of PA for persons with CP. Also significant was the type of residence; those in institutional care were less likely to be active than those living in the community [40]. The findings of this additional article support the results of the primary articles, and echo the need for caregivers to be invested in the health of those for whom they are caring.

X

Weather

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Throughout these studies, there were many common themes among the social and environmental barriers identified. As seen in Table 3, several barriers were repeatedly cited, and the barriers of cost, transportation, lack of support, and risk assessment concerns were found frequently. Each of these main barriers is modifiable with the help of agencies and service providers. It is useful to contrast barriers that adults with ID face to the barriers identified by the general population.

Barriers to PA in the general population There are both similarities and differences in barriers to PA for people with ID compared to the general population. Like people with ID, social barriers such as lack of companionship and support are among the top barriers cited by people in the general population [17,19]. Strong social support from family, friends, and fitness staff is actually one of the best predictors of participating in regular PA [20,41]. Because lack of social support was a commonly cited barrier among adults with ID in this review, it may seem that social support is a determinant common to all people. However, it must be recognized that social support for people with ID often takes on a different form than that for the general population. Social support for people with ID may require tangible aid to facilitate PA participation such as planning and transportation, not simply encouragement or companionship. For those adults with ID who lack reading ability, social support may be needed to even become aware of the available options for PA. This informational support may be necessary for people with ID who lack awareness of the opportunities that exist. So while support and encouragement from others help bolster PA participation in the general population, it appears to be a critically essential factor for adults with ID who have no option but to depend on tangible social support to be able to participate in PA. Further, lack of encouragement may be a barrier for both populations, but discouragement from others (negative supports) is a perceived barrier unique to adults with ID. It has not shown to be a significant barrier for adults in the general population [20].

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Physical environment factors such as lack of access to fitness facilities and outdoor sidewalks, paths and trails are also established barriers to PA in general population [17,19,20]. This review indicates that these are barriers to adults with ID as well. Inaccessibility of these facilities and opportunities may be due to safety or transportation concerns, and seem to affect both populations. While cost of programs has been cited as a barrier for both populations, it actually appears to have a weak overall association with physical activity for the general population [42]. Cost is likely to be even more prohibitive for adults with ID, many of whom live on very limited or fixed resources. Even if cost was not prohibitive for this population, it is likely that transportation and social support would still be necessary to facilitate regular PA participation. Another noticeable difference between these populations is that barriers to PA in the general population are often looked at through a theoretical framework of health behavior [42]. Yet a common assumption among nearly all the popular health behavior models is that individuals have volitional control over their activity choices [7]. However, control over activity choices is not always available for people with ID. Not all of the reviewed articles employed a theoretical framework to understand PA behavior for people with ID. This may be due to the fact that the barriers they face are so prohibitive that a behavioral theory applicable to the general population may be a poor predictor of behavior for people with ID [24]. Alleviating the prohibitive environmental barriers may actually allow for more usage of theoretical frameworks in PA research for people with ID. It may also be important to employ frameworks that take into account social and environmental barriers. Some barriers to PA such as social support, physical environment factors, and cost are common to both populations. Barriers unique to people with ID such as the need for tangible supports, transportation, knowledge of opportunities, and affordability are especially important to target in health promotion efforts for this population.

Practical Implications Although these articles only reflect the genesis of research in this area, there are practical implications for parents, caregivers, and disability service agencies for modifying these barriers to PA. The most common recurring barrier to physical activity was the barrier of cost. While lack of resources is an often cited barrier for the general population [17], it is especially prohibitive for people with ID whom often have significant financial constraints and are economically vulnerable [43]. Agencies that serve adults with ID can begin to combat this barrier by integrating PA opportunities into their regular day programs and to promote PA during idle time. Adults with ID could be educated about inexpensive options for PA, such as walking or doing in-home callisthenic and strengthening activities. Further, adults with ID could be

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trained on how to incorporate extra PA into daily activities (taking the stairs, doing sit-ups while watching TV, walking with a friend during a break at work, etc.). These simple solutions could be part of an agency’s regular training for residential and day program staff. Fighting the cost barrier is critical and can be easily modified by direct service provision agencies. Inadequate transportation was also identified by nearly every study. This barrier is related to cost, resources, and staffing constraints and is a difficult barrier for adults with ID who cannot drive or use public transportation without assistance. Again, opportunities for PA can be encouraged at the agencies and at home as much as possible. Walking for transport is another option that should be promoted by care providing agencies, unless safety is a concern. Further, when agencies are selecting residential locations for people with ID, transportation considerations could be kept in mind. Residential locations that provide opportunities for PA and availability of walking for transport may partially eliminate the transportation barrier faced by adults with ID. Lack of support from others was another commonly mentioned barrier. Social support is an essential factor for adults with ID, who often heavily depend on caregivers for support in their daily activities. Caregivers could promote and teach PA as a part of all of the services they provide. The need for caregiver support however, is often strained by low caregiver-to-consumer ratios. Caregivers often give time and attention to the individuals with the highest needs, diverting potential opportunities away from other adults with ID who need assistance to participate in PA. To promote health for their service users, agencies could evaluate how these caregiver constraints may be affecting the PA opportunities for their consumers, and modify staffing situations accordingly. Active volunteers could also relieve staff and create PA opportunities for the consumers with ID. One of the most interesting findings across these articles is the discouragement of PA from important others, termed ‘‘negative supports’’ [6]. This was also referred to as ‘‘risk assessment’’ by other studies and emerged in two of the strongest studies [6,15]. Adults with ID may be physically able to participate in PA but are either prohibited from doing so by concerned caregivers, or may have learned over time that they are too be careful to ‘‘not overdo it’’ because they see themselves as fragile when it comes to PA. Battling this perception is critical and caregivers should be trained in promoting PA as a part of normalization and integration. To keep adults with ID from participating in adequate PA may exacerbate their secondary physical conditions.

Implications for Research Adults with ID are a difficult population to access, so relying on convenience or purposive sampling is

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appropriate in these exploratory and nonexperimental studies. For this reason, no study lost points on its quality score for using nonrandom sampling. The quality of these reviewed studies varied. Some studies lacked any theoretical framework by which to guide study design. This element would add to the rigor of future work. Failing to describe analysis procedures hinders the reader’s confidence in the results; in future work, researchers should include these details. Many of these studies did not use objective measures of PA. Doing so in future studies would help researchers to compare identified barriers and may bring to light the barriers which are most prohibitive to actual PA participation. Additionally, future research should use valid and reliable measures when determining exercise barriers; only a few studies mentioned the reliability and validity of the measures they used. Another possible avenue of future research is to analyze the effect of removing barriers to examine whether PA does indeed increase with their removal. In many of the studies [7,34,35,37], both direct and proxy reports were collected. There are benefits and limitations to both direct and proxy reporting methods. Direct reports allow adults with ID to directly relay their own perceptions of PA barriers, which is of great value to researchers and practitioners as they seek to eliminate these perceived barriers. There is an increased emphasis on collecting direct reports from people with ID [35] as they are the experts on their own experiences. Including their reports places value on their perspectives [6] and reflects the general move in the disability field from a medical to social model of disability. Proxy reports, however, may also give objective information that could be missed in a direct report. Further, proxy reports are useful in case the adults with ID have limited verbal skills [7]. Interview bias is a common concern, however, if the proxy responds to the interviewer in a socially desirable way. As mentioned in the results of Temple and Walkley’s study, the direct reports from people with ID differed from the proxy reports. The people with ID indicated that PA opportunities were hindered by environmental and social barriers, whereas the caregivers more often attributed lack of PA to the internal characteristics of the adults with ID. A similar pattern was found in Heller, Hseih, and Rimmer’s 2002 study, where the adults with ID tended to report more access barriers than the caregivers reported [37]. The discrepancy between these perceptions should be further explored in order to best understand the reasons that people are not achieving the recommended amount of PA. Heller, Hseih, and Rimmer’s 2002 study showed that caregivers’ perceptions of the benefits of PA for adults with ID were a predictive factor of PA participation. That is, if a caregiver perceives that PA is beneficial for the individuals for whom they are caring, the individual with ID is more likely to participate in regular PA. Although the regression analysis of this study may not have been appropriate, this finding is substantiated by Temple and

Walkley’s finding of the concerns about staff confidence and ability to promote PA participation. Heller et al. suggest that caregivers must be ‘‘informed and educated about the benefits of exercise’’ [37]. This has been found in other care giving situations as well [40]. Because of the influence that caregivers have on the lives and daily activities of adults with ID, research on the influence of caregivers in relation to PA could be explored further. Messent, Cooke, and Long’s 1999 article offered practical suggestions to alleviate these PA barriers. In their conclusions, Messent, Cooke, and Long suggest that there must be a ‘‘mandatory commitment and appropriate resources’’ for service providers to make opportunities available for adults with ID to become physically active and relieve the disparity that exists between the health of adults with ID and that of the general population. This introduces the notion of mandating PA policies and the potential role of policy in the promotion of PA for people with ID. Future research could analyze the various PA policies of direct service agencies to measure whether there is a significant difference in the PA levels of the individuals served at agencies with those policies compared to those without. Measuring PA levels and quantifying the identified barriers to explore their relative importance is a possible avenue for future studies. Many of these studies did not objectively measure PA in relation to barriers; rather, most relied on perception of barriers to PA. With this groundwork of these studies, the potential correlates of physical activity should be studied further using objective, reliable, and valid measures of PA and of barriers to PA. A general limitation of the research in this area is the lack of congruency in the terminology. The terminology for the disability of the participants may be confusing, as the terms mental retardation, ID, and learning disability were all used in these articles. Although there are some conceptual distinctions between some of these terms, especially between the two former terms and the latter, they were all included because of the commonalities in support needs and living situations. ID is the term accepted internationally, and U.S. disability professionals and organizations are moving toward the adoption of the term ID as well, to reduce the stigmatization of the word ‘‘retarded.’’ This was recently demonstrated by the American Association on Mental Retardation’s name change to the American Association on Intellectual and Developmental Disabilities [44]. There is no guarantee that the removal of barriers will result in a direct increase in PA, especially given that PA is a complex behavior with multiple determinants [17,19]. However, barriers appear to have a substantial role in determining PA and are frequently identified as determinants of PA [27-30]. Although there were only 7 articles available for review, the health consequences associated with physical inactivity in this population are too great to ignore. Identifying and addressing these barriers is important because many recurring PA barriers are modifiable at the

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agency level, are under the control of staff, service providers, and policy makers, and can potentially improve the health of people with ID. In an age where people with ID are encouraged to be self-determined and make informed choices, residential staff, managers, service providers, and policy makers can collaborate to alleviate barriers so that people with ID are able to make choices about their health. As Messent et al. state, the lack of adequate resources and policies ‘‘deny many people with learning disabilities real choices to live a physically active healthy lifestyle’’ [7, p. 409], and Heller et al. expressed that ‘‘social-environmental barriers play a key role in determining the exercise participation of adults with Down syndrome’’ [37, p. 172]. Further, Bechtel and Schreck emphasize that people with ID deserve the right to remain healthy by making informed choices about their health [45]. Frey et al. echo this sentiment by commenting that even if adults with ID make the choice to be inactive, ‘‘at least this choice will be based on the same information, skills and opportunities available to the general public’’ [6]. It is an effort in vain to have a movement of self-determination, choice-making, and independence for people with ID without allowing them the opportunity to make choices because of removable barriers. Based on this preliminary evidence, eliminating modifiable barriers such as lack of money, transportation, lack of clear policies, lack of awareness, and lack of support should be tackled by service providing agencies as a commitment to the health of their consumers.

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