Pain is one of the most commonly reported and limiting secondary conditions reported by people with disabilities (Ipsen, 2006; Seekins, Clay, & Ravesloot, 1994). Interference in participation due to pain has been studied widely over the past two decades (Sperry, 2009). While much of this research has involved individuals with primary pain complaints (e.g., back pain) there is a growing literature about pain as a secondary condition (Jensen, Moore, Bockow, Ehde, & Engel, 2011). Estimates for pain prevalence across diagnostic categories include 50% of people with MS (Brochet et al., 2009; Brochet et al., 2009), 79% of people with spinal cord injury (Cruz-Almeida, Felix, Martinez-Arizala, & Widerström-Noga, 2009), and 67% of people with CP (Jensen, Engel, McKearnan, & Hoffman, 2003). Cross disability research estimates that include people with primary conditions related to pain (e.g., arthritis) suggest a disability population prevalence of nearly 80% (Kinne, Patrick, & Doyle, 2004; Seekins, Smith, McCleary, Clay, & Walsh, 1990). Pain experience among these groups consistently interferes with daily functioning (Jensen et al., 2011);(Raichle, Osborne, Jensen, & Cardenas, 2006). Research aimed at disaggregating interference from spinal cord injury functional limitation versus pain has suggested that “life interference” was more related to pain indices like intensity of pain than functional indices like the Functional Independence Measure (FIM;(Cruz-Almeida, Alameda, & Widerström-Noga, 2009).
Pain interference is complex and related to a variety of factors including locus of control, level of depression, and social support (Brochet et al., 2009); Cruz-Almeida, et al., 2009; (Jensen et al., 2011). Cognition such as beliefs about pain impact (e.g., catastrophizing) is also related to pain intensity and interference across diagnostic groups. There are many behavioral factors associated with pain such as smoking and sedentary lifestyle (Gatchel, 2005). This diversity of factors associated with pain contributes to the dynamic nature of the pain experience. As factors fluctuate, so does the pain experience. In fact, the unpredictability of pain intensity and interference is one of the most limiting features of the pain experience (Gatchel, 2005).
Treatment for chronic pain (i.e., pain with duration greater than six months) is complicated (Sperry, 2009). In general, interventions try to increase the individual’s functional level through pain management techniques (e.g., cognitive behavioral therapy). As the experience of pain decreases through intervention, participation in daily activities increases (Sperry, 2009). Because participation is an important feature of pain management, however, the effect of environmental barriers interacts with treatment approaches, especially for people with disabilities (Motl, Suh, & Weikert, 2010). We turn to environmental factors next.
Participation on interference from environmental barriers
Environmental barriers have an enormous impact on participation. Inaccessible environments that do not allow physical, social or information access can severely limit opportunities for people with disabilities. An ecological perspective on environmental barriers highlights that building accessible environments increases participation opportunities (White, Paine-Andrews, Matthews, & Fawcett, 1995). Developing a detailed understanding of how people with disabilities navigate through and remove environmental barriers can provide valuable knowledge for design and intervention.
For many people, environmental accessibility begins at home. A recent population based study of home visitability (e.g., zero step entry), found that only one third of people who used special equipment for mobility lived in accessible homes (Seekins, Traci, Cummings, Oreskovich, & Ravesloot, 2008). Venturing out into the community often comes with additional challenges. An evaluation of 50 fitness facilities found that none were 100% accessible and only 8% had adequate access to and around fitness equipment (Cardinal & Spaziani, 2003). Clarke et al. (2008) had raters evaluate the quality of streets and sidewalks and found that those with more severe mobility impairments tended to live in areas with poorer street and sidewalk quality. Martin (Martin, 1987) evaluated 13 buildings supported by public funds in New York (e.g., higher education, government agencies) and found compliance with ANSI standards ranged from 55% for a building constructed in 1960 to a high of 97% in a recently constructed facility. Finally, accessibility improvements lead to greater participation. Wheelchair users who acquired ramps increased the mean number of community trips by 60% (White, et al. 1995).
Features of the environment are codified in the ICF as either potential barriers or facilitators in the environment. The ICF Environmental Factors section includes five chapters or domains to measure environmental influences including products and technology; natural environment and human-made changes to environment; support and relationships; attitudes; and services, systems, and policies. This work to conceptualize and codify environmental features is important for understanding the effect of the environment on participation. However, as already noted, there is very little research on the interaction of personal factors like pain and environmental factors, like inaccessible buildings on participation.
The interaction of personal and environmental factors. The degree to which environments interfere with participation depends on the functional ability of the individual. A healthy wheelchair user can exercise as much as someone who is ambulatory, as long as he or she can access the equipment. On the other hand, individuals with no obvious mobility or sensory impairments can be very limited by pain and fatigue in completely accessible environments. Likewise, pain or depression can be as limiting as joint or muscular dysfunction regardless of environmental features (Seekins, Clay & Ravesloot, 1994).
For an individual, experience with environmental barriers may have reciprocal effects on participation and pain. Figure 1 shows how pain, participation, and environmental barriers may interact. As pain increases, participation and environmental barriers decrease at time 1. At time 2, pain interrupts participation. When the pain subsides at time 3, participation increases and barrier encounters increase. Participation continues to rebound at time 4 when pain subsides.
Figure 1: Interaction of Environmental Barriers and Pain
As an example of this dynamic interaction, consider a wheelchair user who attempts to go to dinner with friends only to find the restaurant is inaccessible. What impact does the environmental barrier have on personal factors like pain? If depressed mood is more common in the time periods following experience with an environmental barrier, are there immediate impacts on future choices for participation or further limitations due to pain? The Neuromatrix Model of Pain (Melzack, 1999; Turak and Monarch, 2002) suggests pain would be influenced by a variety of factors related to experiencing environmental barriers.
The foregoing analysis provides an example of how environmental and personal factors might interact to influence participation. The example represents a possible outcome from a dynamic or ecological model of participation. There are many potential variables that could mediate the relationship between environmental barriers including stress, fatigue and depression (Gatchel, 2005). In fact, stress is a major contributor to pain experience and stress management is an essential feature of multimodal treatment (Sperry, 2009). For people with mobility and sensory impairments, environmental barriers can be a significant stressor (White, 1995). It is unknown, however, how encounters with environmental barriers impact stress levels and affect the pain experience.
The longitudinal study queried participants about their experiences with pain, barriers and community participation and associated personal characteristics to begin to examine the relationship among these factors.