On this page you will find links to the specific research projects that developed the results presented on this site. Each link below is for a specific research project. Following these links is a general introduction to the science of ecology of participation.
- Pain Interference Patterns Longitudinal Survey
- Pain Interference Patterns Ecological Momentary Assessment
- American Time Use Survey
- Ecology of Rural Participation Survey
- Housing Usability
- Generic Research Content and Methods
- Using GPS data for visualizations
- Analyzing EMA data (Bryce)
Ecological Science of Participation & Disability Research
Participation is the “gold standard” of outcome measurement in disability and rehabilitation (e.g., Berland, 2003; Heinemann, 2005; Jette, Jaley, & Kooyoomjian, 2003; Nordenfelt, 2003; Simeonson, Carlson, Huntington, McMillen, & Brent, 2001). The National Institute on Disability and Rehabilitation Research’s (NIDRR) Long-Range Plan (LRP) emphasizes participation as a primary disability and rehabilitation outcome, and highlights the role that participation plays as a goal, as an outcome, and as a metric (NIDRR LRP, 2006, p. 8168). As stated in the 2006 NIDRR Long-Range Plan (p.8174) “Improved statistics on disability and participation are critical to developing policies and strategies that will be effective in addressing barriers to participation faced by individuals with disabilities, and in assessing the Nation’s progress in improving life outcomes for individuals with disabilities.” This view is consistent with the Institute of Medicine (IOM) model of disability that points to participation as the fundamental outcome of the individual-environment interaction (Brandt & Pope, 1997). The growing importance of the concept of participation is tied to the contextual or ecological model of disability (NIDRR, LRP, 2006 p.8169), which suggests that level of participation is a product of the interaction between the individual and his or her environment.
Participation can be limited by a variety of factors including secondary conditions (Seekins, Clay & Ravesloot, 1994), environmental barriers and personal characteristics of individuals (e.g. socio-economic status). While some of these factors are static (e.g., stairs) most are dynamic and fluctuate over time (e.g., pain). Even the rates at which individuals encounter static barriers fluctuate over time. Interventions to increase participation (e.g., vocational rehabilitation) could be more effective with a dynamic model for how personal and environmental factors interact and fluctuate to limit or facilitate participation. Increases in participation allow people with disabilities to pursue their values (e.g., employment, civic participation, leisure travel, etc.).
Participation in Disability and Rehabilitation Research
Historically, the medical model dominated cultural views about disability (Altman, 2001). In particular, disability was defined in terms of specific pathologies or diseases that give rise to functional limitations (Brandt & Pope, 1997). The medical model assumes that disability is primarily a function of pathology and impairment, and that by curing pathology or treating impairment an individual can return to normal life. Accordingly, outcome measurement focused on changes (i.e., improvements) in pathology and function.
The Ecological Model of Disability
The ecological model emerged in the middle of the last century (e.g., Horowitz, 1987). Proponents of the ecological model criticized the narrow focus of the medical model by pointing to the obvious fact that many impairments were chronic or life long, and that for those with disabilities, environmental barriers were the major obstacles to achieving independence (e.g., DeJong, 1979; 1983). This contextual or ecological paradigm defined disability as the product of the interaction between an individual and his or her environment over time (e.g., Brandt & Pope, 1997; Mathews & Seekins, 1987; Pope & Tarlove, 1991; Seelman & Sweeney, 1995; Verbrugge & Jette, 1994).
This focus on the environment contributed significantly to social policies such as Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, and significantly shaped national planning documents such as NIDRR’s 1999-2003 and 2005-2009 long-range plans, and Healthy People 2010 and 2020 objectives. In fact, Healthy People 2020, the national health agenda, includes a specific objective to “reduce the proportion of people with disabilities who encounter barriers to participating in home, school, work, and community activities” (U.S. Department of Health and Human Services, 2010) and highlights “the opportunity to take part in important daily activities….as central to all objectives outlined in this [Disability and Health] topic.”
In 2001, the World Health Organization published a classification system to address both social and medical aspects of disability. The International Classification of Functioning, Disability, and Health (ICF) is divided into four sections including Body Functions, Body Structures, Activities and Participation, and Environmental Factors (WHO, 2001). The classification provides a “standardized common language” for discussing characteristics of the individual, environment, and individual-environment outcome of participation.
The ICF defines participation as “involvement in a life situation” and activity as “the execution of a task or action by an individual” (WHO, 2001, p.10). It blends these two operations within a single section called Activities and Participation, which complements the three other ICF sections (i.e., Body Functions, Body Structures, and Environmental Factors). The ICF Activities and Participation section includes nine chapters or domains (including learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas; and community, social and civic life) that provide a comprehensive framework to evaluate personal capacity to participate.
In combination, the ICF Activities and Participation chapters provide a classification that practitioners, researchers, and policy makers can use to assess patient outcomes. As such, it has provided the framework for several measures of participation including the Craig Hospital Inventory of Environmental Factors (CHIEF), the Craig Handicap Assessment and Reporting Technique (CHART; Whiteneck, Meade, Dijkers, Tate, Bushnik, and Forcheimer, 2004), the Participation of People with Impairments and Limitations Survey (PARTS-G; Gray, Hollingsworth, Stark, and Morgan, 2006), the Facilitators and Barriers Survey (FABS; Gray, Hollingworth, Stark, and Morgan, 2008) and the Survey of Participation and Receptivity in Communities (SPARC; Stark, Hollingsworth, Morgan & Gray, 2007).
Classification schemes like the ICF are static. They represent a high resolution snapshot of factors (e.g., muscle weakness) that influence outcomes (e.g., bathing). As Tate and Pledger (2003) noted, the ICF framework does not account for the dynamic individual-environment interaction, which can “fluctuate depending on condition, time, and setting” (p.290). As such, static measures based on the ICF are very limited in describing processes like participation.
Alternatively, ecological models are dynamic. They posit interactions between personal and environmental characteristics that fluctuate over time. The vocational rehabilitation (VR) process provides a good example of the dynamic nature of participation. Consider a VR client who is successfully employed as a sales clerk in a local department store. All is well until the holidays increase work-related stress that results in increased pain and depression for the client. If these health conditions lead to absenteeism, this client could lose her job. In this example, change in work related duties triggered health conditions that threaten to interfere with participation in employment. The ecological science of participation examines this dynamic relationship of people in their environment.