SPINAL CORD INJRY
Individual and Societal Influences on Participation in Physical Activity Following Spinal Cord Injury: A Qualitative Study
+Author Affiliations
- Address all correspondence to Mr Levins at 58017 Plaquemine St, Plaquemine, LA 70764 (USA) (sslevins@cox.net)
Abstract
Background and Purpose. Despite evidence that physical activity, a tool of rehabilitation, affects health and improves functional ability in people following spinal cord injury (SCI), such people are often physically inactive. We used a qualitative method to explore the experiences of individuals with SCI during participation in physical activity. Subjects. The participants were 8 adults (5 male, 3 female), ranging from active to inactive, who were 2 to 27 years post-rehabilitation following SCI (paraplegic). Methods. We used semistructured ethnographic interviews to explore barriers and enablers to participation in physical activity following SCI. Emerging themes were derived from the participants' experiences. Results. Two themes were identified: (1) individual influences, defined as a period of loss of “able identity” and subsequent redefinition of self in which participation in physical activity may be a vehicle or an outcome, and (2) societal influences, which included environmental and attitudinal barriers. Discussion and Conclusion. The participants' experiences offer insight for therapists regarding physical activity following SCI.
A number of authors have reported beneficial effects from exercise, sports, and an overall improved level of fitness in people with SCI. In a study of people with tetraplegia, Dallmeijer and colleagues1 found that, other than nonmodifiable factors, the most important determinant of physical capacity is participation in activity, which was defined in their study as hours of sport participation per week. Similarly, Noreau and colleagues2 reported an influence of fitness status on functional ability in people with SCI. More specifically, it has been reported that individuals with paraplegia who are involved in wheelchair sports are more successful in avoiding major medical complications and hospitalizations.3,4
Stotts3 reported that, among those with paraplegia, nonathletes have a greater incidence of medical complications and a greater number of hospitalizations than do athletes. Krause and Kjorsvig5 reported that a factor contributing to 4-year survival after SCI is level of physical activity. With endurance training, people with SCI can achieve improvements in exercise performance similar to those seen in people without known pathology or impairments,6 with measurable gains in cardiovascular and respiratory function.7,8
A number of studies have examined the less tangible psychological and social benefits of physical activity for people with disabilities. In a study involving individuals with SCI, Taylor and McGruder9 described sea kayaking as assisting in the construction of a positive new identity, noting that, through the new achievement of kayaking, participants were able to redefine themselves in terms of their self-perceptions and their abilities as well as societal perceptions. Participants in that study stated that kayaking provided them with “an overall feeling of high” and that going on the water was “a whole other exciting world.” They also emphasized that they enjoyed the social interaction that the activity provided and stated that the activity provided a discovery of “I can do this!”, challenging their perspectives of their own abilities and enabling a construction of a more positive identity. Trieschmann10 concurred, stating that recreation and athletics provide a rewarding set of “I am's” to offset the frequently negative societal messages. Taub and colleagues,11 in a recent study of male college students with disabilities, found that participation in physical activity and sports had profound potential to bring about improved self-image. Results of other studies have echoed these findings,12,13 with physical activity improving people's perceptions of their abilities, which is of particular relevance for individuals with a negative self-concept.14
With the positive effects of physical activity well documented, numerous investigators have examined barriers to physical activity in the general public, but the degree to which these barriers are relevant for the SCI population is in question. There is a paucity of information on physical activity generally for people with disabilities. Despite the voluminous amounts of research in the general field of exercise science, little is known regarding the barriers to participation in physical activity encountered by those with impairments,15 and even less is known about the barriers for individuals with SCI.
In the general population, many studies have shown time constraints16,17 and a lack of motivation18,19 or “laziness”20 to be the prime reasons for failing to incorporate physical activity into a person's lifestyle. In contrast, for individuals with disabilities, and specifically those with SCI, limitations to activity are often attributed to their disability and inability to perform activities that promote health. More recently, however, some authors have questioned this assumption. Rimmer and colleagues15 found that, for women with disabilities, the reported barriers to physical activity were different from those of the general population. These women cited cost, transportation, and a lack of knowledge of a community or sports facility as the chief barriers to participation from a list of barriers constructed by the authors. Dattilo and colleagues21 cited a number of instances in which participation in recreational activities by individuals with impairments was blocked due to a lack of access or transportation.
Collectively, these studies present broader, societal barriers as preventing participation, rather than placing responsibility on the individual's impairments. These observations are consistent with the social model of disability, which was developed in the 1970s and 1980s by a number of investigators,22–26 who first drew attention to how social and political factors construct disability experience. Instead of emphasizing marginalization due to impairments as the source of disability, the social model examines the way in which society “disables” an individual through social, environmental, and attitudinal barriers.27 Using the lens of the social model to participation, the barriers to people with disabilities becoming physically active shifts from a person's impairments to society and its value system. For example, people with SCI may face architectural barriers, but they also encounter discriminatory public attitudes and presumptions regarding their physical activity based on norms for people without disabilities.
Regardless of the degree to which the mitigating factors can be ascribed to the impairments and perspectives of people with SCI or to the setting in which their perspectives are shaped, the fact remains that people with SCI are not leading as active lives as the general population. Considering that exercise and activity are of prime importance in rehabilitation, we find this paradoxical and of concern to clinicians. In this article, we report on a qualitative study, using in-depth, semistructured interviews, that was designed to explore participation in physical activity after SCI. The aim of the study was to provide an in-depth account of both constraints and enabling factors to participation in physical activity, grounded in the perspectives and experiences of individuals with SCI. Our intent was not to find a means of predicting participation in a representative population, but to gain insight into an issue of critical importance for physical therapists through listening to the varied experiences of a group of individuals living with SCI.
Method
A qualitative design using in-depth, semistructured interviews was selected for exploring the experience of involvement in physical activity of people with SCI. One of the basic tenets of qualitative research is that multiple realities exist, with these realities deriving, for example, from an individual's age, sex, class, ethnicity, and abilities and disabilities and from how these variables affect their life experiences.28
There are several approaches within qualitative research that adopt an interpretive method. This research was guided primarily by the work of Hammersley and Atkinson,29 whose application of ethnographic principles provides a framework for in-depth interviewing and analysis that focuses on both what people do and how they interpret their actions and experiences. Rather than focusing solely on the meaning of phenomena, the ethnographic approach in interviewing we used also explores where and how activity takes place.
The nature and the type of exercise, sport, or recreation embodied in the term “physical activity” varies greatly among individuals, and a universal consensus as to what constitutes “physical activity” does not exist. Because the goal of our study was to explore the experiences of a number of individuals with SCI with respect to their choice to participate in activities that are physical in nature, no specific criteria for the term “physical activity” were delineated, and a broad conceptualization was encouraged. Rather, “physical activity” was thought of as ranging from participation in competitive sports to informal and unstructured physical activity for fitness or fun. Team and individual activities, as well as recreational activities with family and friends, were included. In this way, there was an acknowledgment of the full spectrum of potential benefits of any physical activity. This inclusive approach anticipated that the impact would not be confined to “physical” health.
The primary focus of the interviews was to explore the experience of physical activity through the perspective of individuals with SCI. The interviews were semistructured, with latitude given for the participants to express their own views and thoughts.
Sampling
The Table provides a summary of the demographic information for the subjects who participated in this study. Pseudonyms are used in this article for all participants. Because this study was exploratory, inclusion criteria were broad. Participants were sought who were physically active as well as those who reported themselves to have been or at the time of the interview to be “inactive.” Subjects were paraplegic, over the age of 18 years, and greater than 1 year post-rehabilitation. This final criterion was set in an effort to increase the likelihood that the participants had sufficient time since their injury to establish a routine. Initial contact was made through a letter outlining the study, which was provided to potential participants by the primary author (SML) or by outpatient physical therapists and recreational therapists at a local rehabilitation facility. In some instances, respondents were asked to recommend others who they felt also would be interested in participating, thereby gathering future participants by a snowball sampling technique.
Table.
Demographic Information for the Subjects Who Participated in the Study
There was a wide range of injury levels in those who participated in the study, from T1 through to low thoracic levels. There were 3 female and 5 male participants; a somewhat higher female/male ratio than typically encountered in the SCI population. The level of “experience” or time since injury ranged from that of individuals who had been injured only 2 years prior to the study to that of those who had been living with their injury for 27 years. The majority of participants were in their early to middle forties at the time of interview, with only 2 participants being younger (ages 24 and 35 years) and 1 participant being older (age 59 years). The mean age of the participants was 42 years (median age=42.5 years). The mean age of at the time of injury for the participants in this study was 25.6 years (median age=21 years). These figures are congruent with those reported in SCI statistics across the United States30 and Canada.31
Most importantly to this study, there were a wide variety of self-described activity levels, from those of participants who had resumed a physically active lifestyle to those of participants who described themselves as currently inactive. Of significance is the fact that every one of the participants, even those currently active, reported a period of inactivity following SCI.
Data Collection
Data collection was performed through semistructured interviews conducted by the primary author. The interviews were designed to probe the issues arising in the participants' lives that acted as barriers or enablers for participation in physical activity. The basic content for the interviews was constructed from the review of the literature as well as the authors' clinical and personal experiences, yet, by design, the topics were sufficiently open and free flowing to adjust to each participant.32,33 The semistructured format allowed for the interviews to be shaped and developed by each participant, depending on individual responses, comments, and thoughts, with the latitude to respond to each topic in his or her own manner and the freedom to elaborate from personal experience. Sample interview questions are provided in the Appendix.
Each interview was conducted in the participant's choice of setting, including a local coffee shop, the participants' home, and a local rehabilitation facility. Prior to each interview, informed consent was obtained from all participants. All interviews were tape recorded, and, subsequent to each session, the interviewer endeavored to record notes on his impressions of the interview and on the progression of the study. Following each interview, the tapes were transcribed verbatim, and the transcript was scanned to look for novel or particularly relevant responses, as well as to identify times during which the questions were misinterpreted or drew no response. Reflecting on these observations allowed the interviewer to reframe and modify the lines of questioning in subsequent interviews. After a thorough review of each transcript, reflections and comments were included in “analytic memos,” as described by Hammersley and Atkinson.29 This technique allows for reflection on the issues arising during the study and to “trace the way [the] intellectual process [is] shaping the research design and emergence of themes.”34(p618) In this way, the process was cyclical and reflective.
Codes were assigned to words, phrases, sentences, or paragraphs from the transcripts by the interviewer on an ongoing basis after each interview was transcribed. A total of 43 separate codes were identified and then analyzed for emerging “common threads” or themes. Codes that had commonality were grouped together under a common theme. Analysis was aided by the use of the ATLAS/ti qualitative data analysis computer program,* which allows a researcher to associate codes to segments of text, search these codes for patterns, and construct testable models of the conceptual structure of the underlying data.35
A conceptual framework derived from the developing themes and their interaction was then generated. The common themes were integrated to create an overall description of the experiences of the participants. This was done in an effort to ensure that it was the developing themes, backed by subject-specific quotes, that provided insight into the research question. Saturation of data, the point at which no new themes are emerging and the researcher is confident that his or her interpretations are a legitimate reflection of the range of experience, was reached after 8 interviews. At that time, no new themes were generated by new participant interviews.
Two processes were used in an attempt to ensure that a degree of rigor was established. First, after the interviewer had assigned codes to passages of text, copies of 3 transcripts, without the interviewer's coding, were given to a coinvestigator to assign codes. A comparison of the 2 sets of codes revealed that, although utilizing slightly different wording, similar labels were ascribed to comparable sections of text and the majority of the transcripts were assigned codes similar to those originally assigned.
A second, more direct method of verifying the validity of our interpretation was a follow-up conversation with a number of participants. After the initial interview was completed, participants were invited to participate in a follow-up telephone conversation in which the interviewer would confirm with them the issues gathered from their interview transcript, to ensure that their words were coming through and that the analysis “made sense.” This process was completed with 3 participants. Participants were asked if they felt the conclusions to be an accurate representation of their statements, and they were given an opportunity to comment further on any aspect of the study. All of the participants contacted affirmed the major themes and overall structure of the analysis and stated they felt that their views and experiences were accurately reflected. With their confirmation of the interpretation of their comments and the commonality of independent reviewers' codes, the accuracy and relevance of the coding of the data were affirmed.
Findings
Emerging Themes
Two overarching themes emerged from the data, under which all of the codes were subsumed. These 2 primary themes—“individual influences” and “societal influences”—encompassed a number of subthemes. The first primary theme, “individual influences,” consisted of 2 subthemes: “loss of an able identity” and “redefining self.” The second primary theme was that of “societal influences: environmental and attitudinal barriers,” with its constituent subthemes of “material environment” (including physical access and access to information and resources) and “societal attitudes,” collectively relating to the environment faced by the participants in this study. The role and influence of physical activity are woven throughout these themes.
Individual Influences.
The issues of self-identity and the struggle to re-establish a new identity, consistent with their preinjury identity, appeared to us to be the most frequent and most potent issues to emerge from the transcripts obtained from the participants in this study. Their identity was very strongly connected with how they previously defined themselves in terms of what they could do (an “able identity”) and the role of physical activity in their lives. Participation in physical activity strongly paralleled this adjustment.
Loss of an able identity: “who am I?”
Regardless of their age, circumstances of injury, or level of financial or family support, all of the study participants reported experiencing a personal struggle with their new identity to some degree after their injury. The time period during which this discord lasted varied greatly among participants, yet everyone related undergoing this struggle. John expressed the sense of loss of identity, and the uncertainty experienced, saying, “… you lose that sense of ‘Who am I? Is this the way I have to lead my life now?’” Some participants reported “missing” their previous lives and the activities that had helped define their preinjury sense of self. The loss, or perceived loss, of activities that were meaningful to them appeared to play an important role in their adjustment, as some participants related that physical activity was of substantial importance to them prior to their injuries.
The time during which the participants' former image of themselves was forced to be redefined was also a time when physical activity was put on hold, whether they were still in the rehabilitation setting or not. Most (6 out of 8) participants described a period of relearning and coming to grips with their new self. Adam, whose injury was related to a drug overdose, reported that the time after his injury was a time for “huge changes in my personal and social life.” Mark reaffirmed the notion that there are many personal and social issues beyond physical activity that must be dealt with after such an injury, stating that one of the major issues for individuals in rehabilitation is “getting home and getting your life back together again.” Adam related,
And you're just trying to develop … and you're just trying to make developments with other people, and you are just trying to get back …, to find out what it's like to be …, you know …
Coming to terms with a new sense of self was not an easy process. Six of the 8 participants related having difficulty accepting themselves as an individual with a disability. For the majority of the participants in this study, physical activity was linked to their identity prior to injury. From Beth's and Grant's outdoor lifestyle to Dave's daily golf game and Nicole's daily volleyball practices, physical activity played a large role in the daily lives of most of the participants, and likely in the formation of their former identity. Regardless of their specific life situation and physical activity level at the time of injury, all of the participants in this study related that they experienced a period of time in which they did very limited physical activity.
Well, I didn't do a whole lot, actually, immediately after my accident. For the first 5 or 6 years, … I just kind of fell back into the routine of going to work and … I also … I don't think anybody really starts to get used to life in a wheelchair within the first couple of years. Some people obviously adapt better than others. But I think most people tend to take a few years to really get comfortable with what's happened and kind of come to terms with it. So I didn't do a whole lot for the first few years.–Mark
… especially for the first 4 years. I was in a pretty depressed state of mind. Where I just didn't … I didn't have any interest to do anything, I just … I sat in my apartment … really depressed and … down and … I was … I was just … I wouldn't leave my place.–Beth
Grant, although now appearing comfortable with the subject of disability, related that 27 years previously, when injured at the age of 15 years, he had difficulty with the concept of disability, saying,
… it kept tripping me up. I had an archaic perception of disability, you know. I thought people in wheelchairs with a disability were really disabled people. And I had to redefine that in my head …. It was a steep learning curve.
He also noted the uncertainty of continuing with life's activities:
The outdoor adventure lifestyle was huge to me, and so when I had my accident, it was a major threshold to cross in terms of being able to even see whether that possibility existed or not …
The profound impact of an SCI on an individual's self-identity was prominent in all of the study participants' accounts, and all participants described how their injury served to shatter their perception of themselves. Their stories, however, did not end there. Each person, albeit some sooner than others, reached another stage during which they described moving beyond this period of conflicting identity and moving forward to re-establish a sense of self. Some form of physical activity always played an important role in this transition.
Redefining self: turning points and the role of physical activity.
Several of the participants expressed that, although experiencing a period of time during which they “did nothing,” they reached a point at which they decided that they had to change. For John, there was a dramatic moment at which he realized that he was unhappy with himself and who he had become. Other participants noted a more gradual realization that they did not like who they had become. Physical activity was frequently the defining factor. Dave reported that, after spending a few months “vegetating,” he recognized he had changed in a way inconsistent with his self-image, saying,
I just … I would just go from the bed to the shower to the front of the computer to the front of the television… that kind of stuff. And it's just … it's just not me.
Beth, who was still going through the process of trying to reincorporate physical activity into her life, expressed dissatisfaction with her level of physical activity, stating,
I don't like that … I wasn't like that before.
Adam expressed going through a period of self-evaluation, explaining,
I just sort of tried to … tried to evaluate, sort of, what … what in my life am I missing? Tried to sort of judge for myself what activities … what else … would give me more.
Mark described this process of re-evaluation and reframing:
… the time it takes to accept the injury and accept what is going to happen … what changes it's going to make in your life and then realizing what things it is not going to change. The things you are going to do regardless of the wheelchair.
Eventually, the majority of participants reported achieving a new definition of self in which they realize that, as summarized in Adam's words,
… just because you are in a wheelchair, it doesn't mean that you become a different person … you don't change …
Physical activity was linked to identity for the majority of participants prior to their injury. Physical activity also appeared to play a role in the process of redefining self. Although the participants in this study all spoke of physical activity as having a central role in their lives postinjury, the actual level of physical involvement and way in which it played a role were different for each person. For some participants, the activities themselves were the main vehicle through which they redefined their lives. For other participants, physical activity played a vital role in their life after SCI. However, physical activity was not so much the driving force behind their acceptance of their injury, but an outcome of a rediscovered and re-established life. For the majority, it was difficult to pinpoint the defining moment in which they resumed physical activity. However, for each participant, physical activity played a pivotal role in re-establishing his or her life after SCI. This was eloquently stated by Grant, who recalled,
… wheelchair sport was vital, because it helped me kind of systematically step through …, sport became the metaphor for the disability piece …. And so it helped the more complicated emotional adjustment, and … so that was a tremendous vehicle to build self-esteem, self-confidence, and feel capable as a person. And a disability issue, in general, became secondary in my life. It became more of a practical inconvenience that I had to deal with on a day-to-day basis. Not as a determining factor of who I was as a person or how I felt about myself.
Mark, who worked in the wheelchair industry and is a paraplegic, extended his comments beyond his personal experience to observations of others going through the process with which he was so familiar,
… the one thing that I have noticed working kind of within the industry for the last 6 years, and it really seems to hold true with the young guys that are injured …, is that a lot of the guys that don't get into wheelchair sports tend to flounder a lot more than the guys that do. They tend to … they don't get on track as … back on track as quickly, they tend to … if the surroundings allow them, they tend to slip into alcoholism or drug abuse. You know, if a lot of their friends were doing that, they tend to do that, to try and regain acceptance with that group of people. The guys that I see that have gotten into wheelchair sports seem to get more of a direction in their lives. You see a lot of them, they play competitive sports, and then they'll go back to school, and they'll get a degree, and they will find good jobs.
John's statement illustrates the impact of physical activity for him, on his independence and on his self-image reflected back in those observing him:
I got really, really involved in riding a bike, … I loved it. It felt so good to be pedaling like this, and having a 3-wheel bike, and I was getting noticed by a lot of people. And I just realized that that is something I enjoy doing, I felt my independence coming back. I felt like “Wow! Maybe there is life in a wheelchair.” Maybe there is a lot more I can do than just push myself in a wheelchair. … I just realized then that … you can live. You can do whatever you want in a wheelchair. You just can't stand up.
A few participants even recalled participating in “extreme” sports, such as skydiving, parasailing, and rock climbing, after their injury. Adam and Karen described the motivation as being able to say, “I can do it.”
Nicole remarked that physical activity was a method for her to prove to herself that she was still able, noting,
I might have more of an affinity for trying things. Because it might be more proof that you can do it … I want to try it. Just to prove I can do it.
For Karen, physical activity became a very meaningful way of reconnecting with her family in their activities, as she described being able to go with them on a hiking trip thanks to a specialized cart,
I wanted to do that because [they] hike. They hike all of those mountains, and I can never get there.
Yet, at the same time, she found time to reconnect with herself in solitude:
It was an awesome trip, and you know, I got to sit in a field of daisies, which was one of my dreams, you know [she points to a photo of her sitting in a mountain setting in a field of flowers] and sit by myself. I made everybody else go …
Societal Influences: Environmental and Attitudinal Barriers.
We contend that we cannot gain a full appreciation of the experiences of the participants in this study by examining only their inner turmoil in isolation from the society in which they exist. The participants affirmed the important role of the material environment and societal attitudes as barriers or enabling factors in their adoption of physical activity.
Material environment.
The participants in our study reflected upon physical access and its impact on their lives and on their ability to participate in physical activity. For a number of participants, including Adam, Grant, and Karen, re-entry into society after a postinjury rehabilitation program occurred almost 30 years before they were questioned for this study. Mark completed rehabilitation more than 2 decades before participation in the study, and for John and Nicole it had been approximately 10 years. Beth and Dave completed their postinjury rehabilitation program only 5
; and 2 years before the study, respectively. Not only were they injured at different points in their lives; the world into which each participant ventured was very different. Yet, they all noted the profound impact of the physical and social environment on their participation, not only in physical activity, but also in society as a whole. Adam reported on the experiences he had soon after his injury, commenting:
; and 2 years before the study, respectively. Not only were they injured at different points in their lives; the world into which each participant ventured was very different. Yet, they all noted the profound impact of the physical and social environment on their participation, not only in physical activity, but also in society as a whole. Adam reported on the experiences he had soon after his injury, commenting:I used to do some swimming right after I was injured. And, of course, there was nothing. There were no lifts, there … often there were stairs to get into the building where the pool was … if I wanted to get out, I needed to get somebody to just give me a hand and pull me out of the water. I can't get out myself.
Karen, who was injured 27 years before participation in the study, recalled that her hometown, “was not set up. It was not wheelchair accessible.” She recalled having to have others assist her with curbs, a barrier also familiar to Adam, who recalled, “all the curbs have really improved. There wasn't anything like ramped curbs [back then].” Despite their early experiences, these participants acknowledged that accessibility is now “pretty good,” and certainly those injured more recently reported little difficulty with physical access to buildings. However, access to society and full participation involves more than curb cuts and other physical planning features of the environment. A number of participants noted that there were additional factors, beyond their control, that had a profound impact on their participation in physical activity.
Although the role of physical activity was described as vital in the re-establishing of self, and despite the fact that a large portion of rehabilitation consists of physical activity, participants remarked that their rehabilitation experiences, for the most part, did not encourage a physically active lifestyle. Karen described her initial rehabilitation as “terrible,” and Nicole and Beth noted the difficulty for women, the minority on an SCI ward, to participate with men in any physical activity that was available. Grant noted that he found that the standard template of treatment, “seemed very mindless and not linked to something practical that was part of who I was.” When he found that he was able to incorporate sports into his rehabilitation process, he became much more excited by the process, particularly as it became much more meaningful and relevant to his identity as an active individual. Grant noted that he used sports as a means of rehabilitation:
I was introduced also to physical activity and sport in a wheelchair as a means of rehabilitation. And so, as a matter of fact, it was the more dominant area of interest that I had, because it was my nature.
Had this discovery of sports and physical activity as a possibility not occurred, the adjustment process, and “rehabilitation,” may have been more difficult.
In order to participate in physical activity, people with SCI require more than just an accessible front door through which they can pass and other means of managing the built environment. A number of other resources, such as equipment, funding, knowledge of resources, instruction, and organization, are often required. For many individuals, these forms of support were found to be inadequate. Several of the men and women in the study reported that, after their injury, they were faced with a great deal of uncertainty as to their physical abilities and their opportunities for participation in physical activities. Adam recalled the overwhelming situation that faced him 27 years previously when he was released from rehabilitation, recollecting,
You're on a … rehabilitation track, and once you are out of that system, there is really nothing … you're on your own.
Rehabilitation, and society, may have evolved since then, and individuals who have been injured more recently should not have to experience the same distress. Beth, however, who was injured approximately 6 years previously, reported a remarkably similar situation. The following excerpts from the researcher's conversation with Beth illustrate her bewilderment with respect to both her capabilities and her access to resources:
I don't know. Can you do that again? I don't know.
Well I don't … I don't know … what can I do? I don't know …
I used to go biking a lot. But I can't do that now. What can you do? Besides just roll around.
What activities are there?
Hmmmm … [long pause], I wonder if there are any sports for me.
I'd like to try to get into doing something more, but I don't know what.
Beth's comments are unsettling because they outline a barrier to involvement in physical activity despite her motivation. When examining her situation, it is apparent that she feels she is on her own, echoing Adam's feelings developed, in part, almost 3 decades earlier.
The participants in our study described a range of experiences regarding the effectiveness of resources in the community to provide information and promote facilities for physical activity for individuals with SCI and to make them available. Some participants felt that opportunities existed and were available to all people with relative ease. They conceded, however, that this is a recent trend and not the case in previous years, nor in all locations. Several participants remarked that they felt it was too frequently a matter of serendipity, reporting instances of running across resources through happenstance and chance encounters with friends. Regardless of the degree to which of these opposing viewpoints is the more common, individuals with stories such as Beth's would indicate that for some people with SCI, information about resources continues to be inadequate. Her lack of knowledge of the opportunities for participation, despite her eagerness to find an activity, highlights the fact that access to information about the availability of resources is definitely a factor in the physical activity levels of people with SCI.
Participation in most recreational or competitive sports requires access to both equipment and financial means. Particularly for people with SCI who might require adapted equipment, the ability to obtain and handle the required equipment can present additional obstacles. Mark observed,
There are probably really good athletes out there that don't have the equipment and don't compete at a level that … of their ability just because they might not be able to afford the equipment. And there's probably guys out there with really, really good equipment that aren't as good as other guys, but can beat them because they can afford better equipment.
Mark's observation was reinforced by Adam's statement,
… finances or money …. Definitely, that is one of the biggest drawbacks or one of the biggest barriers to a lot of activities.
The finances available to people with SCI, particularly in Canada, are inextricably linked to social and political structures, which determine funding sources and the degree to which individuals with disabilities are able to integrate back into the workforce.
A number of participants reported that, for them, the best resources were other people with SCI. Grant described how, not long after his injury, organized visits by individuals who were involved in the sporting community became a source of information and inspiration:
They also had some key role model linkages where they would, you know, through the paraplegic association or wheelchair sport association try to get people exposed to possibilities in the areas that were compatible with them. In that case, I was exposed to some people who were administrators in wheelchair sport and some athletes who had come in to do some demonstrations, and it … had sort of opened my eyes a fair bit to the possibilities.
John also felt that having acquaintances who use a wheelchair and are actively involved with sports is “something that is going to rub off” and will have a profound influence on newly injured individuals. Karen, despite her difficulties accessing information, also reported gaining information through an organized information day during which individuals could try sporting activities.
Societal attitudes.
The transition into activities, and life in a wheelchair, was often made easier through the help of an “insider.” The participants emphasized that the attitudes of those around them were a large factor in their societal environment and that these attitudes had a strong impact on not only their participation in physical activity but in life overall. Adam remarked on the importance of the impact of the attitudes of others for him,
Mostly it's a matter of getting people to challenge their own perceptions of what it is like to live in a society in terms of a disability. That often the biggest sort of hurdle that people have to get through … it's other people.
When addressing their participation in physical activity, the men and women in this study noted several ways in which the actions and attitudes of others affected their participation in physical activities. Several of the participants noted instances in which they felt the general public either discounted or underestimated their abilities, or even ascribed negative attributes to them based solely on their impairments. Dave noted that he stopped wheeling in a local mall because of treatment received from the general public:
I noticed in the big shopping plazas, I used to go wheel up and down and … people pushing ahead to go on elevators and things like that. You know, it's incredible. Just incredible. The thoughtlessness of people.
Grant recalled an incident in which his abilities in table tennis were severely underestimated based solely on his impairments:
When I went to an integrated competition in the Northern Games, the guy I was playing against, at first when he saw me in a wheelchair, he was taking it easy until when I beat him in the first game, and then he really tried hard. Well, he beat me 3 games to 2, but the point is that he had to try hard and treat me as an equal.
Several participants reported that these views led to an increased level of self-consciousness and affected their confidence in participation. Beth recalled that, although she has become involved in only a limited number of activities since her injury, she did attempt going to a local gymnasium:
I felt that I'd like to maybe try to build up the upper body doing, not aerobics, but weight lifting. So thought “OK, I'll try going to the community gym,” and so I did. But I really felt uncomfortable, because everybody was able-bodied. I really felt uncomfortable. Didn't like it at all. I just … I felt like I shouldn't be here. … So I just stopped going.
Dave related the impact of social attitudes on the efforts to integrate activity into the rehabilitation setting. He recalled an incident when, out of fear of the negative perception of the general public, it was tough for the recreation therapist in rehabilitation “to get the people to participate, because they didn't want to go out.” He noted the heightened sense of self-awareness and vulnerability felt by the individuals with SCI, recalling, “they felt … embarrassed or incomplete or something because they were going out in wheelchairs.” He described vividly the sense he felt at a display of wheelchair basketball for the general public:
Well, all the people where we were sitting, in the wheelchair section, knew what these people were going through. But the crowd … I just got the sense that there was pity. There was all that … those horrible feelings that bug me. I may be imagining it, but I just sensed … they look on people almost as if they were freaks. And that just really disturbs me.
Not only did participants relate being affected by the attitudes of society at large, but also by those of their family and friends. Karen noted that when she first began wheelchair sports, she had relatively little support from her family and friends and often trained alone. She found, however, that their attitudes changed after watching her in competition:
After that though … training. I had people. I had my boyfriend, I had my friends coming out to time me at the track and to help me. I got a bit more support then. They realized that it was serious and that there was a bit more involved in it.
Had Karen not persevered through the difficulties of training alone, she might have never fully achieved her physical activity goals. Furthermore, Karen, Mark, and Grant stressed that the recreational activities they took part in actually became a means of spending time with their family and friends.
Surprisingly, one participant included her physical therapists as among those who sometimes presented barriers rather than facilitating participation. Nicole remarked that when she was in rehabilitation, she found that her therapists greatly underestimated her abilities and passed these lowered expectations on to her. They discouraged her participation in physical activities and were not helpful in finding and adapting activities for her. Only through self-discovery did Nicole say she found her true abilities and discovered that she could participate in activities that she truly enjoyed.
Discussion
The comments and experiences of the men and women in this study would appear to confirm the usefulness of the social model in exploring the issues faced by people with SCI and their participation in physical activity. Several of the participants described a number of factors well beyond their control that had a profound influence, both in positive and negative ways, on their ability to lead an active lifestyle. From inaccessible facilities to a lack of available programs and negative attitudes toward them, participants illustrated the profound capability of society to influence their lives both positively and negatively. The individuals in this study, however, also recognized that there was an impact created by their own attitudes and actions, often stemming from the difficult process of redefining themselves after their injury. The degree to which the participants ascribed responsibility to these internal factors was largely unexpected.
The need to establish a new identity after a SCI has been described by others. Carpenter,34 in her in-depth exploration of the experience of 10 individuals following SCI, noted that redefining self, redefining disability, and establishing a new identity were a common experience. The participants in our study described a similar process as it relates to participation in physical activity. Whether undertaking an extreme activity, such as skydiving and parasailing, or focusing on work, school, and former hobbies, these activities may serve the purpose of, as Nicole stated, proving “I can do it.” They run counter to the popular belief that disability is equated with the inability to do things. Involvement in physical activity also was found to be an important tool by which participants were able to reconstruct their identity in a positive way. Seymour, examining the process of “remaking the body” after an SCI, noted just how difficult a task these individuals faced:
Rebuilding the embodied self after such a disruption is an extremely difficult task. A person's self-image has been developed over a lifetime in relation to particular social ideas and in terms of a body with certain skills, abilities and appearances. To confront, and to gradually let go of, those aspects of self-identity that now can never be consummated is the most difficult task of rehabilitation. To hang on to the past, though understandable as a protective strategy in the early stages of crisis, is ultimately counterproductive because it prevents the person from exploring new subjectives that relate to his or her new body, and to the world within which the person will now live.36(p42)
All participants who described themselves as “active” noted that, whether used as a tool to redefine self or stemming from an already re-embodied self, physical activity currently held a profound meaning for them. They described physical activity as being important for the physical, social, spiritual, and emotional aspects of their life. Re-establishment of a person's identity is a critical process that occurs after such a life-altering injury.34 For the participants in our study, a way of reconnecting with their previous selves and providing an ongoing positive meaning to their lives was considered crucial. Involvement in physical activity was one of the primary ways by which they described doing this.
The participants remarked on how physical activity provided them with benefits far beyond those of physical well-being. The ability to go hiking with her family meant a great deal to Karen, and the exhilaration she felt sitting in a field of daisies in the mountains formed a memory that will last a lifetime.
Individual factors, such attitudes and intentions, are inseparable from the physical and social environment and also were explored as potential influences. An individual's impairments can play a limiting role and were recognized in our study as such. Our results are consistent with those of Kinne and colleagues,37 who, in a recent quantitative study, correlated maintenance of an active lifestyle for individuals with mobility impairments. Although Kinne et al commented that the theoretical literature about disability led to an expectation that external barriers (lack of access, transportation, funds, and social support) would be the most important factors, they contended that the attitudinal factors (self-efficacy and motivation) of the individuals themselves were the only important predictors of exercise maintenance. Kinne and colleagues noted the difficulty in distinguishing between these factors:
Some people [may] class their issue as “being too tired” or “not being interested,” where another would call the same issue “lack of money,” recognizing that with more money, less energy would be spent to participate, and that energy would make it possible to be interested.37(p21)
This comment highlights the difficulty encountered when attempting to distinguish between “individual” and “societal” barriers. Particularly relevant to the issue of self-esteem and self-identity after an SCI, as reported by several of the participants in our study, is the impact of their participation in society and an active lifestyle. Is self-identity an “individual” issue, or is it a broader, societal issue?
Although presented in a linear and discrete fashion, the issues discussed in this article are by no means isolated from one another. On the contrary, the numerous factors affecting participation in physical activity as reported by the participants in our study appear interactive and overlapping. For example, a person's geographic location affects not only the physical accessibility of local facilities, but also the availability of programs and equipment. From another viewpoint, the availability of accessible facilities, programs, and equipment stems from the attitudes and priorities of those in that society. For the purpose of clarity and discussion, internal struggles were separated from physical barriers, and resources were discussed as being separate from the physical environment. Yet, in reality, all of the factors interact and intersect to create the larger picture. A person's age (both currently and at the time of injury), physical environment, and surrounding social environment all appear to play a role. For example, both the internal and external issues faced by Karen, injured at a young age in the 1970s, and those faced by Beth, injured recently as an adult, are very different. Identity, the physical environment, and the social environment are unique to each case, and it is likely a combination of these influences that plays a role in the overall effect of an injury on an individual.
The Perspective of the Social Model
The participants in our study drew particular attention to a number of factors outside of their control that had a profoundly discouraging impact on their ability to be active. A recognition of these societal barriers, as well as enabling factors, helped us gain a full appreciation of the circumstances faced by people with SCI. Crow27 noted that the social model of disability aims to take the focus away from the person's impairments to highlight the environmental, attitudinal, and social barriers that serve to disable an individual. The experiences of the men and women in our study, without exception, supported the relevance of this viewpoint.
While recognizing that the situation is improving, we anticipated that, with time, a number of participants would remark on the persistent inaccessibility of many facilities in their community today. This was particularly true for those in small or rural communities. Participants also reported that even when they could gain entrance to a facility, often the lack of equipment suited to their needs provided yet another barrier. For common recreational activities, and most wheelchair sports, specialized equipment is required. Several participants remarked that a lack of access to this equipment for personal use hampered their ability to be active. Hand cycles, for example, were found to be an important means of developing a sense of freedom and at the same time participating in physical activity, alone or with friends. Due to expense and problems of handling, transport, and storage, however, only 3 participants reported owning one. Chairs designed for playing tennis or basketball, or even enabling a person to go to the beach without sinking in the sand, are all specialized and, in our experience, rare and expensive. Although facilities are becoming more accessible, the priorities of society to extend accessibility to physical participation by this population continue to fall short of their needs.
Attitudes of others affected the likelihood of the participants adopting physical activity. Family and friends are part of our social context, and, although these individuals were, by and large, portrayed as supportive and encouraging of the participants' endeavors, they also required time to come to terms with the changing identity of the participants. This was frequently influenced through the medium of physical activity. The participants noted that there were occasions when close friends and family mirrored society's stereotypical views of disability, influencing the degree of support they received after injury. The participants, in relating their stories, also acknowledged that their own attitudes could largely be a barrier constructed by their perception of a public attitude. Society, however, may play a role in the situation because our own identity is likely constructed largely through social relationships. There is a need for further study in this area.
The stereotypical view of people with disabilities as being unable to be truly athletic continues today. Yet, many of the participants in our study identified the potential for their participation in physical activity as an important mechanism to change societal views of their abilities. Karen's experience with her friends, who did not take her goals seriously until after they saw her compete, is a prime example of this effect. It seems that by observing individuals with disabilities participate in physical activity, others can gain a sense of ability that counters the stereotype of someone who is “disabled.”
Several authors11,38,39 have noted that involvement in physical activity and sports is a possible method of altering the stereotypical image of a person with a disability. The potential for physical activity to have an influence on perceptions of disability of both individuals with the disability and society at large is clear from the words of the participants in our study. Witnessing the athletic endeavors of other people with disabilities was noted by the participants in our study to have influenced themselves as well as those around them, creating a more “able” view of those with disabilities. A number of participants, however, cautioned that it is important to not create an elite class of people with disabilities who are accepted, while leaving others further stigmatized.
Relevance to Rehabilitation Professionals
As Carpenter34 noted, rehabilitation programs have often focused primarily on instructing individuals in the necessary techniques of mobility and activities of daily living while losing focus on the long-term, broader health needs, including those related to healthy aging with a disability. Judging from the experiences of participants in our study, our attitudes as rehabilitation professionals and the influence of the rehabilitation setting generally could be revisited. We contend it is not only important that we recognize and help prepare our clients for the attitudinal barriers that they will face in society, but also that we be cognizant of the influences of our own attitudes and actions.
Societal attitudes shape our physical and social environment and affect the perception of self, regardless of whether it is the rehabilitation setting in which individuals with SCI begin the process of adjustment to their injury or the society to which they will return. With the vital role that the rehabilitation setting inevitably plays in this process and the subtle messages it imparts, we suggest that it is essential to understand more fully the factors that enable or discourage participation in physical activity. Individuals with SCI depend on rehabilitation professionals to be sensitive to these changes and to assist them in achieving their goals, often viewing a physical therapist as an “expert” and the therapist's views on ability as “fact.” Lowered expectations, as described by Nicole, could lead to patients striving only for those goals we envision for them. Increased knowledge of which factors contribute to the likelihood of an individual incorporating activity into his or her life after an SCI can assist a rehabilitation professional in promoting a healthy lifestyle after discharge, as well as assist in the development of appropriate programs to achieve such goals.
In our experience, individuals injured many years ago were less likely to have had the same degree of recreation opportunities presented to them during their rehabilitative stay as they would encounter today. Why does this problem continue to exist? One explanation may be the timing with which these programs are introduced. Currently, rehabilitation times are becoming shorter, health care funding is decreasing, and approaches to intervention are changing. During the short time in rehabilitation, there is little time to comprehensively address issues of physical activity. Furthermore, most of the participants in our study related that there was a considerable period of time during which larger issues were of primary importance and the main goal was just to progress out of rehabilitation and re-establish their lives. Although for some, physical activity was described as a method of re-establishing a positive identity, for others it was not until years later that physical activity became a priority. Therefore, we contend it is important that we consider the timing and structure with which physical activity is presented to individuals with SCI. We think it appears that resources and opportunities are needed early and that they need to be maintained through the life span.
Summary and Conclusions
We studied the multifaceted and complex interaction of factors that are present as barriers and enablers to participation in physical activity after an SCI. Uncovered through our qualitative research method as a predominant factor is the loss of an able identity and the process of rediscovering and redefining self, which can be facilitated by participation in physical activity. We have highlighted various societal influences that either enable or constrain participation in physical activity and that the need to view the environment as much more than a physical setting. Through shedding light on the complex reality that faces individuals with SCI who are trying to incorporate physical activity into their lives, we believe we can provide these individuals, their families and friends, and rehabilitation professionals with a greater understanding of the needs of people with SCI.
Through the words of those for whom adjustment to SCI has been a personal experience, we sought to provide a better understanding of the enablers and barriers to participation in physical activity. By listening to their words, friends, family, and rehabilitation professionals may be able to devise more appropriate ways to enable individuals with SCI to have opportunities for physical activity that can provide them with improved health as well as create a full and meaningful life.
Appendix
Appendix.
Sample Question List
Footnotes
- This study was completed in partial fulfillment of the requirements for Mr Levins' Master of Science degree in the School of Rehabilitation Sciences, University of British ColumbiaAll authors provided concept/idea/research design and writing. Mr Levins provided data collection, and Mr Levins and Dr Redenbach provided data analysis and project management. Dr Redenbach provided institutional liaisons. The authors thank Lyn Jongbloed for consultation (including review of manuscript before submission).Ethical review for client recruitment and participation and conduct of this study was provided by the Behavioral Research Ethics Board, University of British Columbia, and the GF Strong Rehabilitation Centre Research Advisory and Review Committee, Vancouver, British Columbia.This work was funded, in part, by a University Graduate Fellowship from the University of British Columbia.
- ↵* Scientific Software, Berlin, Germany.
- Received April 4, 2003.
- Accepted December 12, 2003.
- Physical Therapy
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