Interpretive ethnography was used as a framework to examine perceptions of physical activity behavior of 12 adults with mild mental retardation. Four parents and two job supervisors also agreed to participate. Multiple data sources included in-depth interviews, diaries, accelerometry, and informal observations. Participants reported many physical activity barriers, benefits, and leisure choices similar to the general population; however, two particularly salient themes related to negative influences and lack of guidance from support systems were apparently unique to this group. Results suggest that (a) adults with mental retardation need specially designed physical activity education and training programs and (b) supports system providers should be educated regarding the importance of physical activity to health for these individuals.
Researchers have suggested that adults with mental retardation are generally more sedentary than are individuals without disabilities, primarily based on indicators such as obesity (Rimmer, Braddock, & Fujiura, 1993), low cardiovascular fitness (Rimmer, Braddock, & Fujiura, 1994), low bone density (Center, Beange, & McElduff, 1998), and poor blood lipid profiles (Draheim, Williams, & McCubbin, 2002a). As a result, individuals with mental retardation may have a higher risk than the general population for morbidity and mortality from chronic diseases directly associated with inactivity, such as heart disease, diabetes, and osteoporosis.
The few researchers who have examined physical activity as a variable in adults with mental retardation suggest that these individuals are not meeting the recommended health guidelines of accumulating at least 30 minutes of moderate activity on most days of the week (Draheim, Williams, & McCubbin, 2002b; Frey, 2004; Messent, Cooke, & Long, 1999; U.S. Department of Health and Human Services (U.S. Department, 2000), and inactive behavior has been recognized as an important health issue in this population (U.S. Public Health Service, 2001). The consequences of an inactive lifestyle are more serious for people with mental retardation than for the general population because inactivity exacerbates the limitations of a disabling condition (U.S. Department, 2000). Low levels of cardiorespiratory capacity, muscle strength, and flexibility will negatively affect activities of daily living and general functional abilities. Most employment opportunities for adults with mental retardation require some level of physical stamina, which is impaired by sedentary behavior. In addition, the undesirable health outcomes associated with inactivity negatively affect mental function and emotional well-being (Powell & Blair, 1994). The ability of this population to be integrated, productive, and independent members of society is contingent upon their ability to maintain good physical health, which is directly related to physical activity habits.
Although empirical evidence seems to support the consensus that people with mental retardation are inactive, data regarding the influences of physical activity behavior in this population are limited. A variety of biological, social, cultural, psychological, and environmental factors have been identified as factors influencing physical activity in adults without mental retardation. It is difficult to ascertain the relative contribution of these factors because of large individual and group variability and the fact that physical activity is a complex and dynamic behavior (Trost, Owen, Bauman, Sallis, & Brown, 2002).
Physical activity influences may be similar in adults with mental retardation, but the context is likely different due to unique factors associated with the condition (Sutherland, Couch, & Iacono, 2002). To date, Messent et al. (1999) published the only research specifically investigating barriers to physical activity in adults with mental retardation. Informal, semi-structured interviews were conducted with 24 participants residing in various community-based settings and 12 careproviders. Barriers were primarily identified by careproviders and included (a) unclear policy guidelines about activities; (b) financial constraints, including personal resources, transportation, and staffing; (c) limited geographical access to physical activity opportunities; and (d) limited choices and options for community physical activity. Responses from the adults with mental retardation suggested that they had few opportunities for physical activity, little environmental control, and frustration with a lack of leisure choices. These findings are important, but reliance on secondary source information (e.g., careproviders) may not accurately represent primary source perceptions (Finlay & Lyons, 2001). Further, the sample resided in supervised facilities, which limits generalization to those living in less restrictive settings. Other researchers who have specifically addressed physical activity in adults with mental retardation have primarily used careproviders for information (Draheim et al., 2002a, 2002b; Messent et al., 1999), and although possible physical activity influences were proposed, this issue was not specifically investigated.
Previous approaches to examining physical activity behavior in adults with mental retardation have not provided an understanding of the social construction of this issue from the perspective of the actual individual. That is, adults with mental retardation have not been empowered to share their perspectives regarding physical activity. The problems associated with using traditional survey methods to pursue this topic with adults who have mental retardation have been well-documented (Bogdan & Taylor, 1994; Finlay & Lyons, 2001). Qualitative research methods have been successfully used to examine other social constructs with adults who have mental retardation (Biklen & Moseley, 1988; Bogdan & Taylor, 1994; Ferguson, Ferguson, & Taylor, 1992; Mactavish, Mahon, & Lutfiyya, 2000), and we determined that this approach would be an appropriate means of data collection for the current study.
Our purpose in this study was to examine physical activity behavior in adults with mental retardation, focusing on participant rather than careprovider perspectives. This account provides insight into the lived experiences of the participants through description of their daily routines (Denzin, 1997) and the obstacles to and benefits associated with being physically active. Multiple data sources, including in-depth interviews, diaries, accelerometry, and informal observations, were used to “allow the researchers more reflexive moments” (Davis, 2000, p. 194) in an attempt to adequately represent participant views.
Interpretive ethnography (Denzin, 1997) is the framework we used in conducting this study. Denzin asserted that “experience, discourse, and self-understandings collide against larger cultural assumptions concerning race, ethnicity, nationality, gender, class, and age” (1997, p. xiv). We believe that disability should also be prominent in such a list. A maxim common to all qualitative research is that the perspective of the participants must be held sacred. Societal study of adults with mental retardation through the centuries has evolved from superstition, to clinical medical inquiry, to sympathy based on an assumption of deficit. Disability researchers in the 21st century have finally advanced to recognizing individuals with disabilities as members of a group on the margins, and one similarly impacted by societal structures. Thus, issues of individuals with disability, similar to other groups of marginalized status, dictate particularly careful consideration of representation. To that end, an interpretive approach, augmented by the methods described in the following section, was used for this study.
Participants with mental retardation
Twelve participants were purposively selected (Lincoln & Guba, 1985) from a sample group already participating in a larger physical activity assessment study (Frey, 2004). Potential informants were asked to interview based upon verbal, expressive language skills, and familiarity with the researchers. Specifically, selected participants were able to independently engage in reciprocal conversations using understandable speech patterns. All volunteered to participate and provided informed consent, previously approved by the university review board for the protection of human subjects.
Participants were European American and their average age was 37 years (standard deviation [SD] 6.0 years (range = 23 to 45). Nine were classified as obese and 2 as overweight according to the body mass index (BMI), and several had health problems associated with being obese or overweight (height = 158 cm, SD = 13; weight = 95 cm, SD = 21; BMI =39, SD = 9 kg/m2). The prevalence of overweight or obese individuals was higher than reported in other studies (Draheim et al., 2002a, 2002b). The IQs for most participants were inaccessible, unavailable, or outdated; but all received various levels of intermittent or limited support for job training, transportation, and/or housing through community agencies that served people with disabilities. All had been enrolled in primarily segregated special education classes during school. Additional details regarding participant demographics are presented in Table 1.
Jeff, Clark, Alfred, Taffy, Lenore, and Betsy were all close friends and part of a slightly larger social circle comprised of other adults with mental retardation. They engaged in many recreational activities together, such as dancing on Friday nights at country-western bars, attending concerts, going to movies, eating out, as well as going to Bingo parlors, church, and shopping. Tracy and April socialized together and with a different group comprised of approximately 3 other women with mental retardation. These two social groups were at odds and frequently feuded.
Matt, David, Joe, and Aaron were not typically included in these intact social networks. David sometimes attended self-advocates' functions, but preferred to spend time with his girlfriend, help at his church, or visit his parents' farm. David was not involved in Special Olympics, which was a major social and recreation outlet for other participants. Matt spent most of his time at home with his nondisabled roommate or with family, but also enjoyed Special Olympics. However, he was included in events sponsored by work, and he attended several social gatherings in this capacity. Joe spent most of his leisure time with family and was checked on regularly by his sister who lived in the same apartment complex. He did not appear to have a strong peer social network. Aaron also spent most of his time with family but was welcomed and included at the fitness facility where he worked. His mother commented that individuals at this facility would sometimes take him on outings. Several participants were previously or currently involved with Best Buddies, but the frequency of outings in this capacity were, at best, reportedly intermittent and did not appear to occur during data collection.
Parents and job supervisors
Four parents and two job supervisors were interviewed as additional information resources. Cosmo and Lawrence were both job coaches and supervisors at the local job training facility. Lawrence had extensive experience working with individuals with disabilities and served as a job supervisor at the same facility for almost 10 years. Cosmo was relatively new to the occupation and had worked at the facility for over a year. Both were familiar with all participants, except Matt, David, and Tracy. Darci was Aaron's mother; Elizabeth, Tracy's mother; Martha, Betsy's mother; and Jane, Taffy's mother.
Participants resided in a university community or adjacent town with a combined population of approximately 150,000. The 4 participants affiliated with the university had access to a state-of-the art recreational facility that offered a variety of fitness equipment and activities as well as a specialized fitness program for faculty and staff; however, they were required to pay fees. There were several physical activity options in the communities, including 4 fitness clubs, 2 bowling alleys, 7 golf courses (2 private; 5 public), 6 aquatic facilities, 12 public tennis court sites (typically in parks), and numerous community parks. The community was situated close to a medium-sized lake that offered many recreational opportunities. The existence of bike lanes and sidewalks or walking paths was limited, and the community was not viewed as “bicycle friendly.”
Relationships with informants
We were acquainted with most participants, as well as the broader disability community, for over 3 years, while we directed an on-campus physical activity program for school-age youth with disabilities and served as self-advocates' advisors. We also had other types of informal contact that occurred frequently through various structured and informal community activities. We knew all parents and job supervisors through various community agencies that served adults with mental retardation (e.g., The Arc, Special Olympics). Thus, we had established positive rapport and trust with these participants through prior interactions. This level of familiarity allowed for better understanding of participant views; natural communication during the interviews; and issues related to misunderstanding questions, repeating answers, and pleasing the interviewer could be more easily recognized and addressed (Biklen & Moseley, 1988).
Researchers' values toward physical activity
We have strong views that physical activity is a vital health component for all individuals and that everyone can benefit from engaging in a healthy lifestyle. Based on extensive experiences and interactions with adults who have mental retardation, we felt that physical activity behavior in this population was probably similar to many of those without mental retardation.
Multiple, intensive strategies were combined with the aforementioned process of prolonged engagement and persistent observation to augment the credibility and trustworthiness of the data (Ferguson et al., 1992; Lincoln & Guba, 1985; Mactavish et al., 2000). The following data sources were selected to provide us with different insights into physical activity behavior of participants with mental retardation.
Interviews were conducted at sites chosen by participants according to comfort level; and all, except Lenore, Jeff, Cosmo, and Lawrence, were interviewed at their places of residence. Lenore and Jeff chose to be interviewed at Clark's house because they spent a lot of time there. Researchers had been to participants' residences several times prior to the interviews, which increased the comfort level for all parties. As a matter of convenience, Cosmo and Lawrence asked to be interviewed at the job training center.
Spradley's (1979) protocol for ethnographic interviewing was used to guide the process. The researchers were careful to avoid paternal or condescending tones or phrases and to converse with the participants in the same manner as they would with an informant without mental retardation during interviews. An initial interview guide was used to direct the discussion, and questions were revised as appropriate throughout the data-collection process to better reflect the participants' perspectives. Interviews began with conversational icebreaker questions (e.g., How about those Rangers? Do you think it'll ever stop raining?). Interviewers then asked questions such as “Take me through your day from when you get up 'til you go to bed.” Such broad “tour” questions (Spradley, 1979) concerning daily work and leisure activities generated responses from which to prompt and with which to generate further questions concerning physical activity in particular. This type of questioning also helped alleviate potential confusion that could arise from open-ended questions (Biklen & Moseley, 1988). Particular effort was made to avoid leading questions in order to ensure that responses represented participant perceptions of their world. If participants mentioned an issue related to physical activity, then the interviewer used that opportunity to probe the issue and extract further meaning from the response. Participants' responses were frequently repeated by the interviewer as an on-going and modified member check in order to assure understanding and confirm the intent of statements. Interviews with caregivers and job supervisors were more specifically focused on physical activity patterns, use of leisure time, and nature of job responsibilities. These interviews were used as supplementary data sources to the themes generated from interviews with participants with mental retardation.
All interviews, which lasted approximately 30 minutes to 1 hour, were audiotaped and transcribed. The researchers frequently listened to the tapes in order to revisit the tone of the response and confirm that responses were transcribed accurately. A small section of the raw data was archived for the purpose of providing referential adequacy. This process confirmed the fidelity of the interpretations and ensured that participants' voices and accounts remained undistorted as they were re-interpreted in theory (Stringer, 2004). The research team met after the interviews to review the process and share observations.
Additional data sources
Themes were supported by physical activity data from uniaxial accelerometers, 7-day activity diaries, and informal observations. Details regarding these procedures and findings are in press elsewhere (Frey, 2004), but elements are summarized and included in this report. All participants wore a uniaxial accelerometer, which is a small, lightweight device that measures vertical acceleration in a single plane of movement (Model 7164, Manufacturing Technology Inc., Shalimar, FL), during waking hours for 7 consecutive days. The magnitude of the acceleration is represented as an activity count and considered a valid and reliable indicator of regular physical activity (Freedson, Melanson, & Sirard, 1998).
Accelerometer counts were collected every minute during the measurement period and categorized according to time spent in light, moderate, hard, and very hard activity levels (Freedson et al., 1998). Participants also kept a diary of computer/ TV/time and the frequency of every day activities, such as occupation, walking, sport and exercise, house/yard work, personal care, and transportation. Three participants kept their own activity diaries, whereas others were assisted by caregivers or researchers. In cases where we maintained diaries, participants were met in person or contacted via telephone every day for the 7-day assessment period. During these times they were asked about daily activities, and notes were recorded regarding comments about these activities as part of the diaries.
The majority of informal observations were conducted by the first author while interacting with participants as part of the aforementioned larger project. These observations were added to the diary data as were any informal conversations, anecdotes, etc. We also recorded personal observations during interviews. For example, if a participant indicated that there were no safe places to be active, we conducted an informal assessment of the environment, including presence of sidewalks, proximity to busy highways, etc.
Data collection yielded approximately 324 double-spaced pages of transcripts and over 100 pages of diaries/informal observations/field notes. An audit trail was maintained to confirm the process of the research and to verify that the account was grounded in data (Lincoln & Guba, 1985). The data were inductively analyzed according to the interpretive process outlined by Denzin (1989) and expanded upon by Stringer (2004). This protocol involves subjecting the interview data to a process of repeated readings, highlighting of recurring material, and bracketing of the data to illuminate essential features. Each of the researchers bracketed the data independently and constructed preliminary themes. We then revisited the data and the initial themes together. Categories with disconfirming evidence were discarded, and differences in interpretation were submitted to further analysis using supplementary data sources (i.e., accelerometry, diaries, informal observations) until agreement on themes was reached. Themes emerged from the data categories that reflected the perspectives of the participants. Data supporting emergent themes were continually revised to construct a contextualized understanding of the participants' perspectives.
Accelerometry data indicate that participants did not engage in recommended amounts of physical activity (Frey, 2004). The main source of formal activity for most of these individuals was Special Olympics, although Matt, Jeff, and Aaron reportedly engaged in some type of regular, formal exercise. Matt reported that he exercised to a videotape and lifted weights, and Jeff and Aaron indicated they occasionally rode stationary bicycles. Common leisure activities were watching TV, shopping, eating out, visiting friends/family, and involvement in religious activities. Diary reports and observations indicated that participants led very routine and structured lives, often centered on favorite TV programs. They did not regularly access available recreational opportunities, and only Aaron belonged to a fitness facility.
Five themes emerged to provide an understanding of physical activity behavior from the participant perspective and are organized as follows: (a) perceived barriers, (b) lack of guidance, (c) negative supports, (d) leisure-time choices, and (e) perceived benefits.
Perceived Barriers to Physical Activity
Not surprisingly, adults with mental retardation reported many of the same barriers to physical activity as do people without disabilities, such as job/ life concerns, money, weather, time, safety, transportation, and health concerns/injuries.
David was prompted to describe what he thought prevented him from exercising, and he replied, “I got a lot of things on my mind. I'm still looking for a wife, I'll be 46 in April. I've been by myself for 5 years and my brothers and sisters have gotten married. I feel left out.” Likewise, Tracy indicated her concern over relationship problems interfered with her ability to engage in physical activity. She said “I can't do nothing. I got lots of boy problems.”
Most worked 4 or 5 hours a day, including breaks, in jobs that required various levels of manual labor. They all perceived their work to be physically hard and complained of being tired after work. April said duties made her too tired to be active because, “I have to kind of do both, be over there at the dishwasher and then go to the sink and wash dishes, but at the rest of the school, like Jo-Jo and them, they all get help … and I don't.”
Participant job-related labor would be considered menial, and most received some degree of government and/or family financial assistance. Thus, many of them perceived financial obstacles to physical activity opportunities. Lenore: “I don't have money to join no gym. That's too expensive. There's an exercise bike at the house.” Jeff added that they used to work out at a gym, but that it closed. He expressed that he wished he could afford to join Gold's Gym. Matt indicated that he would like to play tennis because he played in grade school and had seen it on TV. He was asked how much money he could pay in order to participate in a community tennis program and said, “$15. I would pay $15. Any more would be too much.” Lawrence supported these comments and pointed out that many participants had “monetary issues—they've got a limited amount they can spend and they associate recreational activities with having to spend a lot of money.”
Although Lenore liked to ride her bike, she did not like to “when it's cold or raining.” When reminded that it's not often cold or rainy in the region, she referenced the heat: “In July and August, I mean, when it's so hot you wanting to stay in the house underneath the fan or air conditioning, I mean, uhg, too hot for me.” Alfred remarked that “I was supposed to go bicycling but it was too cold last time.” Tracy addressed weather conditions several times in responses regarding Special Olympics golf. She liked golf, but it was “too wet out there.”
Even though most participants had a lot of unstructured leisure time, they still perceived time as a physical activity barrier. Joe said, “I used to be a really fast swimmer, I used to really swim a lot, but I didn't have time to really swim cause I've been kind of busy.” He added that he had been walking his sister's dog, but had stopped. “I just thought I had time, but not anymore. It's like, I didn't forget about the dog, it's just, I've been too busy myself.”
Several participants enjoyed bicycling and walking, but many said they did not feel safe doing either in their respective neighborhoods. Joe was concerned about traffic and automobiles:
Well, I used to [go outside], but I've been staying in at night because there's always too much, like, there's always too many drivers, so I stayed away from the streets. I always stay close by because I don't know what could happen if I walked off.
Lenore had similar concerns about riding her bicycle near her house: “You have to watch out for idiots, especially out there where we live. When you're riding bikes they'll still come close to you in the car.”
Because only 3 participants could drive, transportation to physical activity opportunities was a frequently cited problem. Most used a special public transit bus for people with disabilities for work travel, but none used this resource to access physical activity opportunities. Although some had their own bike, they did not use it for transportation. When asked, “What's stopping you from going to a gym?” Alfred answered pointedly, “Ain't got no way.” Lawrence confirmed the issue of transportation for the participants. When asked what would help these individuals access available community physical activity opportunities, he replied, “There's a lot of transportation issues.”
Many participants had health complaints that interfered with physical activity participation. Lenore said that she did not play Special Olympics basketball because “I have a bad back. My back hurts a lot. They're rough with basketball. I mean, I'm afraid I'd get my glasses broke.” She added that she would not continue Special Olympics bowling because, “I don't really, like, well, my wrist hurts a lot.”
Although Matt liked the social aspects of Special Olympics, he said that he did not particularly like playing basketball “'cause basketball is actually one of those fast sports. You have to run really fast and when I run really fast I feel like I'm going to fall or something.” Aaron said that he would like to do things in the summer such as swim, “when my leg gets better.” Tracy said, “Well, I hurted my hand, and I had arthritis really bad, it was hurting right there, right here, and all my fingers was hurting.”
Caregivers often reinforced these health concerns. When Elizabeth discussed physical activity for Tracy, who was extremely obese, she said, “The doctor has never said that she needs more activity, in fact he's said she really shouldn't do anything that presses her knees. That was the orthopedic doctor said that.”
Lack of Guidance
A more subtle barrier that arose from the data, on the part of both the participants and their caregivers, was the perceived need for more structured guidance to participate in physical activity, such as specialized programs or facilities. Jeff said that “they have lights out here (where they practice cycling) and we ride in the lighted areas and we have coaches there that are helping us. We are not going to ride by ourselves without the coaches there.” Alfred said that he would never bicycle alone, that he had to have one of the coaches with him “in case I got hurt.”
Participants generally believed that they needed outside assistance to organize or participate in physical activity. Jeff commented that he loved Special Olympics swimming and softball. When asked why he no longer participated, he answered:
I guess somehow it just fell apart. It's hard when you don't have enough coaches from [university] that can come and help out and the coaches are trying to do their best. Sometimes you have to go with the same sport or a different event, whatever comes up. That's what makes it hard on us. Me and Archie (pseudonym”), we love softball. We had a good team and won everything.
These beliefs were also held by caregivers. Darci remarked that Aaron “doesn't get enough outside help in exercise and you know, I can only do so much. He needs outside help of some kind and exercise that would be suitable for his condition.” Lawrence was a job coach in a facility that strongly advocated and facilitated community integration, but he felt that these individuals needed a separate recreation site, “they don't have a facility necessarily that they identify as a place to go and have fun, you know. Specifically in a group setting.”
Martha felt that Betsy could not ride her bicycle alone, even in a protected circular driveway, and expressed frustration that her ex-husband did not help with this: “I've been trying to get him to get on the bike with her. When I can't go he could go.” Lawrence noted that a barrier to their bicycling independently was that
they probably never have mapped out a safe route or measured distance. The only time they get that is at practice. In other words, if they were individually shown a safe route they could ride and encouraged to do it, they would probably do it.
His remarks reinforced the notion that individuals with mental retardation may require external support and guidance to engage in physical activity.
A salient barrier unique to this population was that those who should be most invested in and promoting health for people with mental retardation (e.g., physical education teacher, coach, caregiver, doctor) were actually enabling and reinforcing sedentary behavior. Elizabeth reported that the Special Olympics golf coach did not want participants walking the nine-hole course: “She [coach] said that she just did not see that these kids could play if they didn't ride in a cart.”
Caregivers rationalized sedentary behavior. When asked if seizures were a primary factor preventing Aaron from being active, Darci replied, “Well laziness too. He inherited that from me not from his father.” Interestingly, this observation was contradicted by his job coach. When discussing Aaron's lawn maintenance job, Cosmo said, “Aaron exhibits high-end activity.” Darci had legitimate concerns about Aaron's potential for seizures, but it was unclear how frequent or severe his seizures actually were. It appeared that she was unintentionally inhibiting his activity due to these concerns: “We used to, well we don't let him ride the bike anymore since he took the bike and rode it all over town so we took the bike away from him.” Darci also implied that she needed to be present for him to be active,
When he was younger we would play Frisbee out in the yard and he was pretty good at that if he didn't have to run too far. I was the one that ran but to tell you the truth I'm too old to run like that any more [laughs].
Elizabeth maintained that Tracy preferred not to be active, “to be honest, I don't think she would be athletic if she didn't have problems. She's not interested in that type of thing and never has been.”
Participants recounted that doctors, teachers, and coaches would advise them not to “overdo it.” Jeff said,
I have a 3 day workout program. I don't try to do a 5 day workout cause if you did, you would burn your body out more. You feel more tired and weak and don't have the energy to get up and go like you're supposed to. That's what they call “power outage.” That's what my coach calls it. [His advice is to] try to use caution when you exercise, try not to overdo.
Joe had fond memories of his physical education teacher and remembered that he: “taught me a lot, how to usually be careful, and not to overdo it, so, I try not to overdo it.”
Martha assisted with transporting several participants and their bicycles to Special Olympics practices and competitions. For her convenience, she would maintain possession of the bikes in one central location, rather than having to pick each one up before practices. Participants only had access to their bicycles during Special Olympics practice. When the first author pointed out to Taffy that this would keep her from riding her bike when she chose, she laughed and replied, “Yeah, but it's easier on them [Martha] this way.”
Leisure Time Choices
As previously mentioned, all participants primarily engaged in sedentary leisure activities, and all enjoyed watching TV. In fact, many adhered to a daily routine of TV programs. Few participants engaged in leisure time physical activity beyond Special Olympics as evidenced by the accelerometry data and diaries. Taffy reported that she did not bowl throughout the year, “just during Special Olympics.” It appeared that many were not aware that they could pursue activities independently. When asked if he would consider practicing bowling out of season, Matt replied, “I never thought about doing that. I probably would consider that.”
Farm or yard work and social dancing were the most commonly reported active leisure choices reported in the interview and supported by diary data. Matt, David, and Joe were the only group members who engaged in recommended amounts of moderate to vigorous physical activity, although not on all days. Aaron belonged to a fitness club and worked there part-time, but did not regularly exercise. Matt acquired the most moderate to vigorous physical activity, and this was attributed to a large amount of walking and stair climbing associated with his job. Matt was also the only participant who attempted to engage in regular exercise, which was often prompted by his nondisabled roommate. David acquired reasonable amounts of moderate to vigorous physical activity because he enjoyed working on his parents' farm: “I get a tractor and the equipment. … we're going to start plowing tomorrow morning. We have corn and cotton. I put hay out, fix barbwire, make sure the fence posts aren't too wobbly or rotten.” Joe would sporadically take his sister's dog for a walk, and he also engaged in yard work:
I've been helping her [mom] out, helping her in the yard cause she needs help so I just go about once a week just going and look and see how the yard's doing, if it's not doing good I'll go over and clean the yard up and make it look better. … The hardest thing is the leaves.
The other 9 participants were largely inactive and did not accrue at least 30 minutes of moderate to vigorous physical activity. Alfred teased the interviewer, “I was watching TV all day until you walked in!” Tracy was very clear about her leisure preferences: “I don't want no exercise. I just don't. I just want to be lazy.” When asked whether given the choice between watching TV or going to dance class, Tracy answered, “I'd just watch TV.” Lenore was asked what she liked to do in her down time, while waiting to pick people up from work and she replied “Watch TV, play my little hand held games, listen to my scanner, read books, I love reading books. I love going to the library. I check out books, I've got like ten books from library.”
Perceived Benefits of Physical Activity
All participants expressed receiving benefits from physical activity, even if they were not regularly active. Similar to people without mental retardation, they liked to be with friends, have fun, and look and feel better. A population-specific perceived physical activity benefit was receiving external awards associated with Special Olympics.
Clark focused his conversations on scoring well and winning. He indicated disappointment when he explained that “we're pretty lousy in basketball. We got 5th place.” Lenore said she preferred bicycling to bowling because she won more medals in bicycling. She further explained that in the state Special Olympics “there was two medals in that, I get two in area, and two in state, that's gonna be six medals.” Albert said he liked bicycling fine, because “I got a first medal.” He was disappointed when he only got a ribbon rather than a medal.
Like many people without mental retardation, these individuals were concerned with looking good and weight control. However, contrary to the general population, the aesthetic benefits of physical activity were more often cited and emphasized by male participants. Matt expected: “Six pack stomach! … Big pecs! … A sexy butt!” Matt's advice for others is “Stay active and if you feel like you don't want to do anything or exercise, that's fine, but you won't get the results you would want.” Jeff liked riding his bike because he said “it builds up muscles.” Clark said that he “might start getting fat” if he stopped being active.
Social support is often cited as a physical activity benefit in people without mental retardation (Biddle & Mutrie, 2001), and this is also true for adults with mental retardation, particularly female participants. Both Taffy and Betsy frequently mentioned the social side of being active throughout their interviews. When discussing mall walking. Taffy stated: “It's a lot of fun. A bunch of us get together, and just walking.” Betsy talked a lot about her fondness for dancing at country-western clubs because, “I want to meet people.” When asked to discuss his friends, Aaron said, “I have a friend at [fitness club].”
The importance of physical activity as a social outlet was reinforced by caregivers. Darci said that Aaron's job at the fitness club was mostly social, “It's a kinda social bit rather than an exercise bit and he will not ride an exercise bicycle,” although Aaron contradicted this statement and said he did like to ride the exercise bicycle. Jane indicated that Taffy participated in Special Olympics because her friends were involved: “If she was the only one of her friends who went, she wouldn't go, I don't think.”
Participants appreciated the physical benefits of physical activity and the way it made them feel. Joe: “I like cycling, cycling keeps me, um, motivated, keeps me pumped up.” David liked walking because it, “makes you feel a lot better. … be happy.” Matt said that when he lifts weights “I feel like I'm about 16. When I'm lifting weights my muscles are stronger. I do it because I know if I don't lift weights, I will lose those muscles.” David also enjoyed the psychological benefits of being outdoors and active. When asked what he liked about working on the farm. he waxed poetic: “Peace and quiet and you see the old tractor going down the road and see the old farmer plowing the field. … and cows mooing and chickens crowing and everything else.”
Careproviders and job supervisors made little mention of the physical or psychological benefits of physical activity for their charges. Elizabeth said, “I know she would feel better if she has some of her weight off,” but this was the only mention of physical activity benefits. Marci acknowledged that exercise would help Aaron's high cholesterol, but felt he had few legitimate physical activity options. Lawrence was skeptical that these individuals even valued physical activity beyond the social aspects, “Well they wouldn't think of exercise or physical fitness as a positive value. It would be something that they would associate having fun.”
This study brings into relief the notion of multiple realities. Foremost, of course, are the perspectives of the participants and the fidelity of the researchers' representation. We grappled in earnest to go beyond the veil of acquiescence that we occasionally encountered as well as avoid any interpretations that may be considered paternal, for example, Taffy's comment that she sometimes rode her bicycle around the neighborhood. Evidence from our field notes and accelerometer data indicated otherwise, and our initial interpretation was that Taffy was trying to please the interviewer. Hindsight illuminated the possibility that Taffy could be struggling with her own perceptions. People without disabilities experience difficulty with accurate recall and often over- or underreport physical activity behavior (Matthews, 2002). It is not a stretch to reason that Taffy may actually perceive her riding activity to be as she reported it.
Similar to other studies on adults with mental retardation living in the community (U.S. Department, 2000), participants in the current study were generally sedentary and the majority already experienced associated health problems, primarily overweight/obesity (Frey, 2004). We found that adults with mental retardation report similar physical activity experiences and perceptions as those without mental retardation, albeit with some differing contexts and details. It is difficult to identify the relative importance of themes that emerged from the multiple data sources, but it appears that the most salient occurrences influencing all other aspects of physical activity behavior for these individuals were negative supports and lack of guidance from careproviders. The following discussion focuses primarily on these distinctive themes.
Matt, who was the most active participant, was the only one who did not indicate that he directly or indirectly received negative messages regarding physical activity from careproviders. His nondisabled roommate Carl (pseudonym), who also served as a careprovider, was formerly in the military and clearly valued physical activity. He also modeled physically active behavior by exercising regularly and using a bicycle for transportation. Carl encouraged activity in several ways, such as reminding Matt to exercise, teasing him about getting rides instead of walking approximately one mile to work, and providing a set of weights that were kept at the apartment. Other participants reported receiving messages from careproviders, parents, coaches, teachers, and doctors that resulted in perceptions of disempowerment, physical fragility, fear, overreliance on supports, and incompetence with regard to being physically active. They also received health information from these sources that was misleading or inaccurate, such as when Martha actually encouraged Betsy, who was obese, to drink regular soda every day because it gave her energy. These negative messages permeated many other aspects of physical activity participation. For example, those who engaged in Special Olympics bicycling believed they could not practice without supervision, and most of them were not allowed access to their bicycles out of convenience to the coaches. Almost all participants were constantly told not to “overdo it” or over exert themselves. Accounts of doctor, teacher, and coach statements may not be accurate or were misinterpreted, which is irrelevant because authority figures introduced the pervasive belief that participants should be careful with regard to physical activity participation.
The influence of authority figures seemed extremely powerful because many participants remembered this advice from when they were in school, which for most was 15 to 20 years earlier. Researchers have found that physicians and other healthcare providers play an important role in promoting physical activity behavior, but many do not provide this type of counseling to patients (Trost et al., 2002). Health promotion for adults with mental retardation has largely been ignored (Sutherland et al., 2002), and there is little doubt that this population receives little or no physical activity counseling. Overly cautionary messages regarding physical activity from individuals in positions of authority suggest an area requiring further investigation.
Negative messages were also confirmed in parent interviews and informal observations. For example, Elizabeth rationalized that Tracy could not play nine holes of golf unless she rode the cart because the Special Olympics' coach and Tracy's nondisabled golf partner felt that she could not participate if she walked. Elizabeth viewed walking the course as not being good for Tracy and was adamant that her daughter, who was not accustomed to walking, would rebel if no cart were provided. Social support from family and friends has a strong, consistent, and positive impact on physical activity behavior in people without disabilities (Trost et al., 2002). People with mental retardation who have strong supports experience greater autonomy, yet, it is these very associates that often hinder independence in individuals with disabilities (Davis, 2000; O'Brien & O'Brien, 2001). O'Brien and O'Brien observed that parents and careproviders sometimes collaborate to control the lives of people with mental retardation in a variety of ways, such as limiting, hindering, or denying opportunities and desires. This seemed to occur in the current study, but attempts to discourage independent physical activity participation were interpreted as well-intentioned efforts to protect individuals commonly perceived as vulnerable (O'Brien & O'Brien, 2001). This perceived vulnerability may be reinforced by societal attitudes that people with mental retardation are unhealthy or sick because of their disabling condition (Sutherland et al., 2002). The consequences of this well-intentioned overprotection are a high risk for developing certain chronic diseases and secondary conditions associated with inactivity.
Parents in this study were aware of the health problems of participants with mental retardation and acknowledged that physical activity was needed, but actually promoting this concept was rarely mentioned. Perhaps of most concern was that parents rationalized, ignored, or encouraged sedentary behavior rather than viewing it as undesirable. Perceived importance or valuing of physical activity is a significant component of parent support (Trost et al., 2003). The 4 parents interviewed in this study recognized the importance of physical activity, but it is unclear if this was a strongly held belief or verbal compliance in response to highly visible health and physical activity promotion campaigns. Considering the critical amount of influence that parents have on physical activity behavior, this issue necessitates further examination with adults who have mental retardation who may exhibit levels of dependency similar to youth.
Lack of guidance was expressed as a need for specialized programs or facilities to enable these adults to be physically active. Independently engaging in physical activity beyond segregated programs, primarily Special Olympics, was not considered possible by most participants and caregivers. Matt was an exception because he exercised at home to video tapes; however, he also received very constant, positive social support to be active from his roommate. Other participants may have exhibited physical activity levels similar to Matt if they had this type of resource. A variety of environmental factors, such as access to and satisfaction with facilities, positively influence physical activity in people without disabilities (Trost et al., 2002). This issue is somewhat more complicated for the current participants because they had actual access to community facilities, but the fact that they felt specialized programs were needed suggests a lack of perceived access. The need for guidance to be physically active expressed by these individuals was perplexing because they were clearly competent and confident in so many other facets of their lives, including leisure pursuits (e.g., shopping, going to the library, going to dance clubs). Although all had received training in activities of daily living and vocational skills and were capable in these areas, they probably were not taught to access community physical activity opportunities. As a result, they did not develop the requisite abilities needed to feel confident and successful engaging in nonspecialized physical activity programs.
Evidence to support this suggestion was generated from comments regarding physical education instruction during school. Participants typically reported negative physical education experiences where they were excluded, ridiculed, and/or marginalized. Many recounted programs that emphasized traditional sports, calisthenics, and elimination games such as dodgeball, activities that do not promote success for most students, particularly those with disabilities. Lack of proper physical education instruction may have prevented participants from developing the physical and emotional skills needed to independently and successfully access integrated community physical activity options. Thus, they felt most comfortable in segregated programs, where the potential for achieving performance-based success and receiving positive social support from peers was likely to occur. This perceived need for segregated programs requires further examination.
The circumstances surrounding certain physical activity influences was somewhat different for these participants compared to people without disabilities. An interesting example that was embedded within the theme of perceived barriers was job/life concerns, which primarily consisted of life stress and feelings of job-related physical fatigue. The limited available literature suggests that there is weak evidence of a lack of association between life stress and physical activity (Trost et al., 2002). Bramston and Mioche (2001) proposed that individuals with mental retardation are less equipped to cope with stress than are others in the general population because of cognitive characteristics that limit problem-solving abilities. Physical activity was proposed to participants as a way to deal with life stress (e.g., when you have a lot of things on your mind, take a walk to help clear things up). Although initially enthusiastic, most did not independently pursue these options. Participants acknowledged the aesthetic and mental benefits of physical activity (look good, feel good), but provided more reasons to be inactive than active (perceived barriers and leisure-time choices). Similar to people without disabilities, they simply preferred to use leisure-time for sedentary activities (“I'd rather watch TV”). Sedentary activities could also have been viewed as an easier or more relaxing form of leisure. Matt was active during the week and wanted to “veg out” on the weekends. Inactive behavior in this population may be more attributed to an exertion of lifestyle choices and preference than poor problem-solving abilities.
Although decision-making, self-determination, and choice for adults with mental retardation has received increased attention in the last 10 years (Stancliffe, 2001), these constructs have been largely ignored with regard to physical activity. The community placement of participants in this study should have afforded them opportunities for expanded physical activity choices compared to their more supervised counterparts (Stancliffe, 2001). We propose that not engaging in physical activity may have occurred with this sample because (a) they did not have the information or training needed to make good physical activity choices, (b) they were often discouraged from participating in physical activity by their support systems, or (c) they chose to use their leisure time for sedentary activities. The relative importance of each theory requires additional inquiry.
The perceived social and physical benefits of physical activity reported by participants were consistent with studies on people without mental retardation (Biddle & Mutrie, 2001). A benefit unique to this group was receiving awards. Eleven participants were engaged in seasonal Special Olympics activities, and almost half of these individuals emphasized the importance of awards as a physical activity benefit and motivator. Shapiro (2003) also found that awards were the top-ranked participation motive for adult Special Olympics athletes, regardless of age or gender. Although Special Olympics has received criticism for not promoting normalized activities, the organization has significantly evolved to include programs that encourage transition skills, such as athletes becoming coaches, as well as lifetime leisure skills (e.g., golf and bicycling). However, awarding ribbons or medals, despite actual performance or skill, may reduce the development of normalized adult behaviors.
The findings are strengthened by the use of multiple data-collection methods and the intimate relationships between researchers and participants, which facilitated interpretation of the data within a broader context of the participants' lives. This study offers provocative new insight into the daily lives, choices, perceptions, and physical activity behavior of adults with mental retardation. We suggest that future researchers utilize a larger, more diverse participant group, with a focus on differences between active and inactive individuals. Further exploration of the psychological, behavioral, and social factors (particularly family, careprovider, and Special Olympic influences) related to physical activity in this population is also recommended. Health promotion programs that address physical activity benefits and barriers should be designed specifically for individuals with mental retardation and their support systems and emphasized in both community and education settings. Even with education and training, adults with mental retardation may choose to be inactive in accordance with the majority of adults without mental retardation, but at least this choice will be based on the same information, skills, and opportunities available to the general public.
This research was conducted when the first and third author were affiliated with Texas A & M University, College Station, and was supported by a National Institute on Disability and Rehabilitation Research Mary Switzer Fellowship, Contract H133F980012. The authors thank all participants, parents, careproviders, job coaches, and agency and organization personnel who participated in and provided support for this project.
Authors: Georgia C. Frey, PhD (email@example.com), Associate Professor, Department of Kinesiology, HPER 179, 1025 E. 7th St., Indiana University, Bloomington, IN 47405. Alice M. Buchanan, PhD, Associate Professor, Department of Health and Human Performance, 2087 Memorial Coliseum, Auburn University, Auburn, AL 36849. Dawn D. Rosser Sandt, PhD, Assistant Professor, Department of Physical Performance and Development, MSCO4 2610, Johnson Center Rm. 112b, University of New Mexico, Albuquerque, NM 87131