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Promoting Physical Activity among Persons with Physical Disabilities: Steps towards a Population-based Perspective
Michael Spivock and Lise Gauvin
Abstract
Persons with physical disabilities are less likely than the general population to partake in regular physical activity even though they stand to achieve greater benefits from the adoption of this health behavior than asymptomatic populations. In an effort to contribute to the literature on theory and interventions to promote regular involvement in physical activity among persons with physical disabilities, the aim of this paper is to develop a rationale for viewing persons with physical disabilities as a distinct population with their own distribution and determinants of practice rather than as a high-risk group. In order to achieve this end, we outline selected definitional vicissitudes associated with the concept of disability and populations and we explore implications of defining persons with disabilities as a population for the study of interventions.
Physical inactivity is a major public health concern in industrialized nations due to its prevalence as well as its health consequences. For example, the almost 70% of North Americans who do not engage in regular physical activity (defined as light-moderate activity at least five times per week for at least 30 minutes each time or engaging in vigorous activity at least three times per week for at least 20 minutes; Barnes & Schoenborn, 2003) are at increased risk of developing heart disease, non-insulin dependent diabetes, obesity, osteoporosis, colon cancer, hypertension, and stroke (United States Department of Health and Human Services, 1996). Unfortunately yet not surprisingly, persons with physical disabilities (who are often referred to as persons with disabilities) are even less likely to be active than the general population (Rimmer, Rubin & Braddock, 2000; Noreau, Cantin & Trepanier, 1998) even though they stand to achieve greater benefits from the adoption of this health behavior than asymptomatic populations (USDHHS, 1996). This is especially disconcerting because data suggest that nearly 20% of Americans have a disability and that this population accounts for nearly half of all medical expenditures in the US (Lollar, 2002).
Despite the vast amount of research published on the health benefits associated with physical activity in the past 20 years, only limited work has been directly focused on the determinants of physical activity among individuals with physical disabilities (Heath & Fentem, 1997). Similarly, although the body of research dealing with interventions to increase physical activity is continually growing (Blair & Morrow, 1998; Dunn & Blair, 2002), there is a dearth of research dealing with intervention strategies for promoting physical activity among persons with physical disabilities.
In an effort to contribute to the literature on theory and interventions to promote regular involvement in physical activity among persons with physical disabilities, the aim of this paper is to develop a rationale for viewing persons with physical disabilities as a distinct population with their own distribution and determinants of practice rather than as a high-risk group. An ancillary goal is to begin to tease out implications of this stance for the conduct of research on interventions to promote physical activity.
In order to achieve this end, we outline selected definitional vicissitudes associated with the concepts of physical disabilities, and address the questions of "What is a population?" and "What is a population of persons with physical disabilities?". Next, we explore early implications of defining persons with physical disabilities as a population for the study of interventions. In particular, we focus on the potential of empirically testing the "environmental-press/environmental buoy" hypothesis to understand the impact of population-based interventions on populations of persons with physical disabilities.
Disabilities and populations-- Who and what are we talking about?
Traditional disability definitions have often been based on diagnoses and activity task limitations (Lollar, 2002). In our society, people are often said to have visual disabilities, for example, as if the fact of having limited vision automatically leads to a disabling situation. These clinical diagnostic classifications of disabilities have left the public health community ill-equipped to assess and intervene on individuals with disabilities despite the fact that these individuals are more vulnerable than the general population to a range of problems including fatigue, depression, and social isolation and have more limited access to health care (MMWR, 1998).
More recent definitions have cast disability as resulting from the interaction between an individual with selected functional limitations and an inadequately adapted environment (Fougeyrollas, Cloutier, Bergeron et al 1998, WHO, 2002). That is, there is consensus that disability should be defined as a combined effect of an individual's psychophysical impairment and social and material organizations of space, time and activity (Freund & Martin, 2004). In other words, disability is the result of a person-environment interaction. A person's impairment (i.e., an organic or physiological condition such as lower limb paralysis) can yield a functional limitation (i.e., an inability to perform a specific task such as walking) which can in turn lead to a disability due to a negative person-environment interaction (unable to get around the neighborhood because of a lack of curb cuts at intersections). By placing additional emphasis on the environment as an integral component of the disability process, there is a larger onus placed on effecting changes on environmental factors to ensure that individuals with physical disabilities are able to engage in typical societal functioning rather than experiencing handicapping situations.
We submit that this concept can be taken one step further and suggest that persons with physical disabilities who evolve in differing life contexts or environments should be thought of as populations of persons. In terms of involvement in physical activity, these populations can meld into a population of individuals without physical disabilities with appropriate environmental intervention rather than always being seen as a high-risk group of persons who will necessarily be located at the tail-end of the distribution of persons without physical disabilities.
The term population requires some clarification, as different researchers and theorists have chosen to define populations in various ways. Classic dictionary definitions tend to present a geographically-based interpretation of the term population, indicating all the people living in a particular area or place as a population. Medical professionals typically limit population descriptions to intrinsic mental and physical states (Stineman, 2001). The former definition emphasizes the notion of shared environment as the criterion for defining a population whereas the latter emphasizes the notion of similarity of physical/mental health condition. In a research context, populations are often seen as artificial entities created by the observer for the purpose of analysis. For example they are often defined as all the organisms that constitute a specific group or occur in a specified habitat (The American Heritage Dictionary of the English Language, 2004), or the set of individuals, items, or data from which a statistical sample is taken (The American Heritage Stedman's Medical Dictionary, 2002.). These characteristics can be based in demography, geography, occupation, time, care requirements, diagnosis, or some combination of the above. Last's dictionary of Epidemiology defines a population in much the same way, referring to a collection of units from which a sample may be drawn. Interestingly, classic epidemiological textbooks (for an example please see Hennekens & Buring, 1997) are often completely devoid of any formal definition of the term "population", though they are usually understood to involve concepts of location, time, and some individual characteristic. Moving towards a more integrated definition, we propose that a population of persons with physical disabilities should be defined as a group of individuals who live/strive in shared environments and who share one or more functional limitations which differentiates them from other individuals living/striving in the same places.
Adopting an integrated definition of population highlights the inherent limitation of physical activity promotion interventions based solely on health education approaches. That is, health promotion interventions for persons with physical disabilities have traditionally adopted a "high risk approach". Inspired by the age-old question "Why did this patient get this disease at this time" (Rose, 1985), most prevention strategies have been driven by the search for risk factors, usually individual characteristics, which identify certain individuals as being more susceptible to disease than others. For example, a mobility restriction is viewed as almost necessarily leading to a sedentary lifestyle. This has lead to the practice of presenting information on the health benefits of physical activity in clinical or rehabilitation settings, as if all persons with physical disabilities are immediately at high risk for sedentary behavior (Lollar, 2003). Rather than considering them from a population-based perspective which would entail examining environmental influences and person-environment interactions (such as has been done in the field of disability studies), most interventions to promote physical activity for persons with physical disabilities tend to involve clinicians providing health information to their patients upon terminating their functional rehabilitation protocol. For example, over the past 30 years, many authors (Ades, Waldmann & McCann, 1992; Brinkman & Hoskins, 1979; Fletcher, Dunbar, Felner, et al, 1994; Greenlund, Giles, Keenan, et al, 2002; Rimmer, Riley, Creviston, et al, 2000; Weiss, Suzuki & Bean et al, 2000) have studied physical activity prescription and promotion for persons with disabilities from a clinical perspective. Furthermore, a recent scientific statement by the American Heart Association regarding physical activity for stroke survivors went as far as to declare that "The fervor of the physician's recommendation appears to be the single most powerful predictor of participation in an exercise-based risk-reduction program" (Gordon, Gulanick, Costa, et al 2004). Although results of clinical based interventions have been encouraging at times, it is important to consider the limits of this perspective.
Data showing that persons with different medical diagnoses are not all sedentary bring this approach into question. That is, data show that persons with physical disabilities seem to form their own "distribution" in terms of physical activity involvement rather than being at the tail-end of the distribution of able-bodied persons. Figure 1 which depicts the prevalence of leisure-time physical activity among persons with arthritis and other rheumatic conditions (CDC, 1997), illustrates this idea. The data indicate that, collectively, individuals with these physical disabilities are clearly less active than the general population. However, not all persons with arthritis or other rheumatic conditions adopt a sedentary lifestyle. That is, while the distribution of involvement in physical activity of persons without physical disabilities espouses a bell-shaped curve, the same distribution among persons with physical disabilities espouses a Poisson-like distribution. We see in this figure that although there are significant differences in the proportion of persons who are completely sedentary, other portions of the curve present mirror images. This underscores the point that persons with similar physical disabilities form a separate distribution from the general population, rather than being a high-risk group of it. Had persons with physical disabilities been a high-risk sub-group of the general population, they would all be found at the tail-end of the normal distribution. It is important to see this figure not as highlighting differences between the physical activity participation of persons with disabilities, but simply to show that their distribution is different from that of the general population.
It is also important to mention at this point that the factors influencing the distribution of each curve are also understood to be different. Distributions are different likely because persons with physical disabilities encounter different environmental and psychosocial barriers in comparison to the general population with respect to physical activity involvement (Noreau, Cantin & Trepanier, 1998; Rimmer Rubin & Braddock, 2000; Rimmer et al., 2004).
Where to go from here-- Research implications
Appropriate outcomes: Prevalence and distribution
The proposed change in vocabulary from persons with disabilities to populations with physical disabilities is more than a simple question of semantics. In order to understand, monitor, report, and eventually intervene on this population, population-level indicators of functional limitations, disability, and physical activity must be developed. These indicators must be more than simple aggregates of individual data.
There must be population-level indicators of functional limitations and disability with the former being based on medically-diagnosed disease states and the latter integrating person-environment interactions. For example, one can imagine the case of two 35-year olds who suffered similar motor-vehicle accidents where both have a lower cervical spine lesion which necessitates wheelchair use as a primary form of mobility. One of them lives alone, has little social support, and is unable to return to work because the environment is not adapted to accommodate his wheel-chair or his physical disabilities. He has great difficulty in getting around his neighborhood and simply spends more and more time at home, living a completely sedentary life. This situation can easily lead to a spiraling effect of poverty, depression and further isolation. Conversely, the other accident victim could have a spouse at home to help him with activities of daily living and encourage social interactions. His employer may choose to adapt his workspace and allow him to perform many of his pre-accident activities. The streets and businesses of his neighborhood may be more conducive to mobility and independence. In sum, this individual may experience fewer activity limitations therefore a low level of disability despite a major functional limitation. In these examples, both persons have a functional limitation, but only the first person has a disability.
This admittedly caricatured portrayal of the situation illustrates the inadequacy of employing aggregates of medically-diagnosed states in monitoring and assessing population-level disability. The field of disability measurement continues to struggle with a lack of operational clarity on what is being used to measure disability outcomes and limited precision in existing instruments to detect important change in disability in response to physical activity interventions (Jette, 2003). Population-health research would point us in the direction of determining prevalence, incidence, and proportions of indicators. However, additional work on environmental characteristics and their interactions with physical disabilities will be required to achieve significant strides in this area. In fact, a great deal of research has been published dealing with accessible environments and trails in the field of disability studies(for selected examples, please see: Barton, 1996; Connell & Sanford, 1996; Kirschbaum, Axelson, Longmuir et al, 2001; Lantrip, 1996; Swain, French, Barnes & Thomas, 2004). For this reason a large portion of the work that remains to be done may consist of "translating" this information so that it can be more readily usable by physical activity promoters on a population level, and so that the magnitude and direction of the influence of these factors on various physical activity outcomes can be quantified.
Population-based Interventions and an Appropriate Framework
Once individuals with physical disabilities are seen as a different population with separate determinants with respect to physical activity, the need to address them with specifically tailored population-based interventions which take into account their different interactions with the environment becomes easier to conceive (Sallis, 2003). In the case of populations with physical disabilities, much like any other population, this group contains men, women, and children of all races and all socio-economic statuses. Among them are house-bound senior citizens and professional competitive athletes. Some may be particularly motivated; others may be depressed or reticent to change. Some are considered likely to engage in unhealthful behaviors while others are not. It is to be reiterated that this grouping in no way suggests that a one-size-fits-all physical activity promotion strategy will apply. Much the same way that one message or strategy would not work to increase the physical activity levels of all members of a population, it can not be hoped that all members of this specific group will respond to the same intervention.
It is generally agreed upon that "behaviors such as physical activity are influenced by a wide range of biological, psychological, social, cultural, policy and physical environment factors" (Sallis, 2003). A population-based perspective on physical activity promotion for persons with physical disabilities would therefore inevitably involve a broader focus on environmental determinants since data suggest that these persons encounter significantly more environmental obstacles in their pursuit of an active lifestyle than does the general population (Noreau, Cantin & Trepanier, 1998). This avenue requires a significant trans-disciplinary effort involving researchers and front-line workers from fields such as exercise science, rehabilitation, urban planning, and policy studies.
Several authors have expressed a need for community-based physical activity interventions for persons with disabilities (Durstine, Painter, Franklin et al, 2000; Edwards 1996; Hogan McLellan & Bauman, 2000; Maher, Kinne & Patrick, 1999). Understanding the processes underlying the action of specific environmental determinants (e.g., quality and width of sidewalks, presence of curb cuts, proximity of adapted parks and recreational paths, accessibility of a variety of destinationsÉ) on specific physical activity outcomes is an essential ingredient in guiding future research and eventual interventions. The situation is further complicated by the fact that this population of persons with physical disabilities is not necessarily geographically contained in specific areas or neighborhoods. If the goal is for this population to be physically active in a variety of situations and locations, adaptations must be implemented boarding numerous settings.
Emerging Perspectives
The need to act is clear; the way to do so is not as obvious. In transferring our vocabulary from persons with physical disabilities to populations with physical disabilities, the need to explore environmental interventions becomes more pressing. In much the same way that the public health community has begun to examine populations as more than just than aggregates of individuals and to develop ecological interventions to promote the adoption of healthful behaviors, so too must researchers interested in the concept of disability widen their focus or target to include environmental considerations. Furthermore, with a recent emphasis on the environment in the disability creation process, a clear point is made Ð a disability is no longer a personal characteristic but more accurately the result of the interaction between the person's functional limitation and an inadequate environment.
If the public health community can follow the lead of the disability studies community in seeing people with physical disabilities as a population which exists in fine balance with its environment, this will likely open the door to a vast array of interventions at different levels of life settings as well as at the individual level. The goal must always be to prevent functional limitations from becoming physical disabilities or handicap situations. This being said however, the implications of such a viewpoint present many conceptual challenges. Understanding disabilities, populations and particularly disabilities from a population-based perspective are concepts which remain at an embryonic stage of development.
Glass and Balfour's Causal model of neighborhood effects (2003) may provide a more concrete foundation on which to lay environmental interventions for persons with physical disabilities. An extension of Lawton and Nahemow's (1973) Ecological model of ageing, this model posits that the health and functioning of an individual in any given neighborhood is a function of the balance between personal competencies and a notion dubbed as "environmental press/buoy". An environmental buoy is defined as a facilitating element of the environment which serves to support a person's activities despite the presence of physical disabilities. Examples of environmental buoys could be physical adaptations of surroundings (e.g., access ramps) or the availability of resources (e.g., adapted transport). Environmental press, on the other hand, refers to barriers in the environment which interact with personal physical disabilities and have the effect of hindering activity. Social stress (e.g., feeling uncomfortable at the grocery store) or physical barriers (e.g., very steep hills) are two examples of environmental press. Although this notion of facilitators and barriers is not a new one, their differential effect on persons depending on their personal competencies is rarely examined at the community-level, particularly in terms of physical activity. It is proposed that very small barriers (such as a two inches of snow on the ground) may have little effect on the activities of the general population but represent a significant environmental press for persons with physical disabilities in terms of mobility. Conversely installing automatically-opening doors in a fitness facility may not necessarily attract new customers from within the able-bodied population but may act as a significant buoy to support access to persons with lower- or even upper-limb impairments.
The stated goals of this paper were to develop a rationale for viewing persons with physical disabilities as a distinct population and to begin to outline implications of this stance for the conduct of research on interventions to promote physical activity. In addressing these points, it is important to mention that this paper is in no way designed to present a research agenda for interventions in the field. Much more humbly, the ideas presented are intended contribute to a greater interest in the health promotion needs of persons with disabilities on the part of all community researchers.
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Figure 1-- Illustration of distribution of physical activity practice in the general population and in persons with functional impairments (from http://www.cdc.gov/mmwr/preview/mmwrhtml/00047588.htm)
Level of Activity
Submitted by
Michael Spivock MSC & Lise Gauvin, PhD, The Lea-Roback Research Centre on Social Inequalities of Health in Montreal
Email: Michael Spivock
Phone : 514.343.6111 EXT 0604
Fax : 514.343.2207
Address:
University of Montreal
Department of Social and Preventive Medicine
Interdisciplinary Research Group on Health (GRIS)
P.O. Box 6128, Downtown Station
Montreal, Quebec
Canada
H3C 3J7
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