Archives of Physical Medicine and Rehabilitation journal homepage: www.archives-pmr.org Archives of Physical Medicine and Rehabilitation 2015;96:578-88

ORIGINAL RESEARCH

Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities Joy Hammel, PhD, OTR/L,a,b Susan Magasi, PhD,a Allen Heinemann, PhD,c,d David B. Gray, PhD,e Susan Stark, PhD, OTR/L,f Pamela Kisala, MA,g Noelle E. Carlozzi, PhD,h David Tulsky, PhD,g,i Sofia F. Garcia, PhD,j,k Elizabeth A. Hahn, MAj,l From the aDepartment of Occupational Therapy, University of Illinois at Chicago, Chicago, IL; bDepartment of Disability and Human Development, University of Illinois at Chicago, Chicago, IL; cCenter for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL; dDepartment of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL; e Program in Occupational Therapy, Washington University, St Louis, MO; fOccupational Therapy, Neurology and Social Work, Washington University, St Louis, MO; gDepartment of Physical Therapy, University of Delaware College of Health Sciences, Newark, DE; hCenter for Clinical Outcomes and Assessment Research, Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Ann Arbor, MI; i Kessler Foundation Research Center, West Orange, NJ; jDepartment of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; kDepartment of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; and lCenter for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL. Abstract Objective: To describe environmental factors that influence participation of people with disabilities. Design: Constant comparative, qualitative analyses of transcripts from 36 focus groups across 5 research projects. Setting: Home, community, work, and social participation settings. Participants: Community-dwelling people (NZ201) with diverse disabilities (primarily spinal cord injury, traumatic brain injury, and stroke) from 8 states. Interventions: None. Main Outcome Measures: Environmental barriers and supports to participation. Results: We developed a conceptual framework to describe how environmental factors influence the participation of people with disabilities, highlighting 8 domains of environmental facilitators and barriers (built, natural, assistive technology, transportation, information and technology access, social support and attitudes, systems and policies, economics) and a transactional model showing the influence of environmental factors on participation at the micro (individual), mesa (community), and macro (societal) levels. Focus group data validated some International Classification of Functioning, Disability and Health environmental categories while also bringing unique factors (eg, information and technology access, economic quality of life) to the fore. Data were used to construct items to enable people with disabilities to assess the impact of environmental factors on everyday participation from their firsthand experience. Conclusions: Participants with disabilities voiced the need to evaluate the impact of the environment on their participation at the immediate, community, and societal levels. The results have implications for assessing environmental facilitators and barriers to participation within rehabilitation and community settings, evaluating outcomes of environmental interventions, and effecting system and policy changes to target environmental barriers that may result in societal participation disparities versus opportunities. Archives of Physical Medicine and Rehabilitation 2015;96:578-88 ª 2015 by the American Congress of Rehabilitation Medicine

An audio podcast accompanies this article. Listen at www.archives-pmr.org. Supported by the National Institute on Disability through a Rehabilitation Research and Training Center on Improving Measurement of Medical Rehabilitation Outcomes grant (grant no. H133B090024); Rehabilitation Research and Training Center on Measuring Rehabilitation Outcomes and Effectiveness (award no. H133B040032); National Institute on Disability and Rehabilitation Research (NIDRR) (Spinal Cord Injury-Quality of Life National Institute of Health R-01 [award no. 5R01HD054659; cofunded by the National Institute of Child Health and Human Development and National Institute of Neurological Disorders and Stroke]; Traumatic Brain Injury Quality of Life NIDRR Field-initiated grant [grant no. H133G070138]; Mobility Impaired Individuals with Secondary Conditions: Health, Participation and Environments [award no. R04/CCR714134]); Centers for Disease Control and Prevention; and the National Center for Complementary and Alternative Medicine and the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health (award no. U54AR057951). Disclosures: none.

0003-9993/15/$36 - see front matter ª 2015 by the American Congress of Rehabilitation Medicine http://dx.doi.org/10.1016/j.apmr.2014.12.008

Insider perspective on environmental supports and barriers Merriam-Webster’s Dictionary broadly defines the environment as “the conditions that surround someone or something; the conditions and influences that affect the growth, health, progress, etc., of someone or something”.1 The disability rights movement and social model of disability have long asserted that participation restrictions are created when people with disabilities encounter barriers in their physical, sociocultural, political, and economic environments, pointing to the idea that environmental factors can disable or enable full participation as much or more so than individual impairment or function.2-4 In accordance with the social model, the Social Determinants of Health model used by the World Health Organization and Centers for Disease Control and Prevention broadly conceptualizes environment as “the complex, integrated, and overlapping social structures and economic systems that are responsible for most health inequities. These social structures and economic systems include the social environment, physical environment, health services, and structural and societal factors”.5 Understanding the complex relation between person, environment, and participation and the impact of these factors on health and function continues to be a major challenge and rehabilitation research mandate.6-8 Although theories about the impact of environmental factors on human behavior abound, operationalizing and measuring environmental factors in a theoretically sound yet consumer-responsive manner remains difficult.9,10 The International Classification of Functioning, Disability and Health (ICF) has prompted a resurgence of efforts to measure environmental factors in disability and rehabilitation research.11,12 The ICF provides a taxonomy of environmental factors in 5 categories: products and technology; natural environment and humanmade changes to environment; support and relations; attitudes; and services, systems, and policies. Environmental factors can be facilitators (features that enhance ability to participate) and barriers (features that inhibit participation), depending on the individual’s social role and context.13-16 Although the ICF provides a classification schema, additional research is needed to develop a theoretical conceptualization on which to examine complex relations among environmental factors or the relative contributions of these relations to societal participation. Therefore, the goal of this project was to develop a theoretically grounded, conceptual framework of the relations between environmental factors and participation, grounded in the first-hand experiences of people with disabilities using data from multiple projects and sites.13-18 Results from this project provided the foundation for the development of items and item pools to assess environmental factors.19 This study combined qualitative data from 5 projects that collected data describing the influence of environmental factors on participation and quality of life among people with disabilities. Our intent was to provide a deeper understanding of the dynamic interaction between environmental factors and participation, as reflected in the theoretical article by Magasi et al.10 A richer understanding of the relation between environment factors and participation facilitates development of items to measure environmental influence from a consumerdirected perspective and informs the design of environmental

579 programming, systems, and policies that promote the full participation of people with disabilities.

Methods This study involved secondary analysis of qualitative data from 5 projects,7,13-20 with people with diverse disabilities across different regions in the United States.14-16,21,22 The data served as the foundation for the development of new measures of participation: Community Participation Indicators,13-15 Participation SurveydMobility,18 health-related quality of life (Spinal Cord Injury Quality of Life and Traumatic Brain Injury Qualitaty of Life),17,22 and Facilitators and Barriers Survey.1 Even though most of these projects were focused on conceptualizing and measuring participation or quality of life, focus group participants with disabilities repeatedly pointed to the widespread influence of the environment on their everyday participation.13-15 This influence was identified beyond physical accessibility, which is a traditional focus of rehabilitation. We took advantage of the opportunity to analyze these rich data across projects and diverse disability samples to examine environmental factors critically and develop a theoretical conceptualization of the influence of the environmental on home, community, work, and economic participation. A more fully developed theoretical framework would inform rehabilitation, community, work, and system delivery and supports.

Design Concept elicitation through qualitative data collection is emerging as a best practice for instrument development, particularly clientcentered or consumer-directed assessments.23-27 A grounded theory approach, embedded in the lived experiences of people with disabilities, ensures that instrument content is socially valid and relevant to the lived experiences of the target population.3,4 Grounded theory methods use constant comparative analyses to identify intra- and intergroup similarities and differences related to the phenomena of interest and thereby serve as an ideal mechanism for examining pooled data across studies, in this case multiple sites and diverse disability groups, including traumatic brain injury (TBI), spinal cord injury (SCI), and stroke.23-25 Focus groups provide an in-depth, participatory means of learning how constituents of various groups perceive a phenomenon, in this case, full participation in society, and how the environment affects everyday participation.28-31 Results provide a rich description of environmental facilitators and barriers that are relevant, meaningful, and socially valid. The National Institutes of Health’s Patient Reported Outcomes Measurement Information System initiative developed guidelines for instrument development that includes qualitative focus groups and interviews; investigators have adopted this approach across studies.32-34 This qualitative analysis and grounded theory development processes represent an important step in the rigorous, mixed-methods approach to the development of environmental factors measures.34

List of abbreviations:

Participants

ICF International Classification of Functioning, Disability and Health SCI spinal cord injury TBI traumatic brain injury

Data were available from 36 focus groups conducted with 201 participants. Each project used purposive, maximum variation sampling16,24 to recruit participants with disabilities. The combined sample is diverse in type of disability, time since disability onset,

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580 Table 1

J. Hammel et al Contributing qualitative focus group data sources (see original projects for detailed demographic information)

Research Project

Sample Source

No. of Groups and Participants

Rehabilitation Research and Training Center on Measuring Rehabilitation Outcomes and Effectiveness (grant no. H133B040032), NIDRR, Allen Heinemann, PI SCI-QOL NIH R-01 (grant no. 5R01HD054659; cofunded by NICHD and NINDS), David Tulsky, PI TBI-QOL NIDRR Field-initiated Grant (grant no. H133G070138), David Tulsky, PI Mobility Impaired Individuals with Secondary Conditions: Health, Participation and Environments (grant no. R04/CCR714134), Centers for Disease Control and Prevention, David Gray, PI Total

Illinois, Wisconsin, Ohio, Colorado, District of Columbia

12 groups with 63 people with disabilities (primarily SCI, TBI, stroke) 12 groups with 65 people with SCI

New Jersey, Michigan, Illinois, Washington New Jersey

7 groups with 33 people with TBI

Missouri, Illinois

5 groups with 40 participants with SCI, CP, MS, stroke, postpolio

8 states and District of Columbia

36 focus groups with 201 participants with disabilities

Abbreviation: CP, cerebral palsy; MS, multiple sclerosis; NICHD, National Institute of Child Health and Human Development; NIDRR, National Institute on Disability and Rehabilitation Research; NIH, National Institutes of Health; NINDS, National Institute of Neurological Disorders and Stroke; PI, principal investigator; SCI-QOL, Spinal Cord Injury-Quality of Life; TBI-QOL, Traumatic Brain Injury Quality of Life.

community living status, race/ethnicity, age, sex, and geographic distribution (table 1). The sample was primarily composed of individuals with SCI, stroke, and TBI; however, participants reported a wide variety of coexisting disabilities, including psychiatric, cognitive, neuromuscular, sensory, and other chronic health conditions. Collaborating sites’ institutional review boards approved data collection.

Procedures The contributing projects used a systematic approach to focus group implementation and analyses.14,15,17,21,22,25,34,35 Procedures were adapted to meet the needs of the participants (eg, organizing smaller groups of people with TBI to reduce external stimuli, allowing time to reflect). Researchers and people with disabilities cofacilitated groups. Collaborating disability community stakeholders helped generate focus group questions, analyze and interpret data, and conduct member checks of findings. All groups used a similar set of open-ended questions primarily related to defining what participation means, how it is experienced in everyday life by individuals with disabilities, and examples of barriers and facilitators to participation.

Analysis We used a constant comparative method to code and interpret data.23,25,26,36 This process involved initial descriptive coding of data within projects, with member checking by participants with disabilities. These themes were then shared with the 2 primary qualitative researchers leading the multisite team, via e-mail and teleconferences, who then compiled them into a coding/member checking template, which described the major themes generated, types of wording/language codes representative of them, and a basic description to define and summarize the types of data that were sorted into this theme (table 2). The research team reviewed the coding/member checking template, and then the lead qualitative investigators revised and clarified ambiguous themes. Next, the team synthesized the data to triangulate findings and highlight themes that illustrated similarities and differences among participants and settings. The multisite team investigators developed a conceptual framework to organize themes into domains (fig 1), which later

served as the basis for writing items measuring environmental barriers and supports to participation.19

Results We identified 8 major categories of environmental factors that influence participation: built, natural, transportation, assistive technology, information and technology access, social support and societal attitudes, systems and policies, and economic environment (see fig 1). Participants described these environmental factors as facilitators and/or barriers, enabling and/or disabling participation in different participation contexts (see table 2). In some of the environmental categories, more similarities were seen in the impact on participation across participants with different disabilities (eg, TBI, SCI, stroke). In other categories, some environmental features had specific effects for participants by type of functional need (eg, mobility, cognitive, sensory, communication/social) rather than specific diagnoses (see table 2). Environmental factors often intersected and had cumulative influences on participation. For example, participants using a wheelchair or experiencing balance issues while moving described snow and rain as barriers, pointing to weather as a natural environment factor. In addition, participants identified systems, services, and policy issues (eg, snow removal services), which represent a different type of environmental domain. Participants identified protected shelters at bus and train stations as aspects of the built environment that were important. These examples illustrate how environmental barriers and supports can fall under different environmental domains at the same time, with different implications for interventions, services, and policies. Likewise, multiple barriers and supports can be experienced at the same time, further complicating participation. Participants described how different levels of environmental factors influenced participation (conceptualization in fig 2, direct quotations in table 3). These levels ranged from personal or immediate environmental interactions (micro influences) to neighborhood or community environmental factors (mesa influences) to societal factors (macro influences). These levels closely correspond to the Social Determinants of Health framework used by the World Health www.archives-pmr.org

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Table 2 Summary description of 8 environmental themes found across focus groups with people with disabilities, including similarities or differences found by functional needs (mobility, vision, hearing, communication, social) 4 overarching themes with more similarities than differences experienced by participants with disabilities Theme

Description

IT access

Information is understood as both usability of knowledge and method of delivering as IT. IT includes devices and technology to transmit and receive information (eg, cell phone or land phone, smart phone, computer, electronic tablet/notebook, e-mail and Internet service). Usability of information includes factors that influence the ability to access, understand, and process information, including reading level, literacy, transparency, user interface, and ease of navigating. More similarities seen in issues with IT availability and overall access; some differences noted in specific accessibility features (eg, sensory, cognitive, and physical accessibility features, or lack thereof). Social support: factors related to the availability and use of informational, instrumental (physical assistance, material support), and emotional supports; networks; and social capital. Also includes issues of companionship, trust, and relational strain. Societal attitudes: factors related to group and societal attitudes about disability and participation, includes both positive and negative attitudes, reactions, and treatments. Issues such as societal marginalization, oppression, and discrimination are included as are positive inclusion, enfranchisement, and empowerment. More similarities in highlighting overall impact of social support and attitudes on participation; some differences noted for people with more visible disability features (eg, use of a wheelchair) compared with more hidden, less detectable disability features (eg, cognitive or communication issues). Availability of and access to systems to support participation, including health care, housing, community living, community participation, educational, employment, transportation, police, emergency response, legal, and social support systems and services within community. More similarities and less differences by groups in overall system availability and access; however, some differences noted at detailed level of specific disability-related systems of delivery or funding in that community (eg, different systems for physical, aging, cognitive, developmental, and mental health disability groups that then influence participation choice and control). Adequacy of economic resources to live and participate in the community across a variety of environmental contexts, and societal economic issues influencing individual participation (eg, economic recessions and cutbacks, system reallocation of subsidies, changes in benefits or policies governing resource allocation). More similarities than differences across disability groups.

Social support and societal attitudes

Systems and policies

Economic

4 themes with differences noted in detailed environmental features by type of functional needs experienced Theme

Description

Built environment

Built or created factors in the human-made environment, includes architectural features of buildings, land development and transitions between them (eg, sidewalks, roadways, stations), and environmental features, such as accessibility (physical, cognitive, sensory, social/communication), noise, crowds, and air quality. Also includes features of community livability (eg, safety/security, lighting, access to resources). Differences in detailed features of built environmental impact noted by functional needs rather than specific diagnosis in the following:  Mobility: physical accessibility features differed primarily related to use of wheeled mobility/wheelchair or not (eg, need for a ramp or not).  Cognitive: cognitive accessibility features highlighted for people with difficulty organizing or understanding complex or written information, navigating directions, or needing alternative or multisensory visual, sensory, and tactile-based accessibility features.  Social/communication: social access features identified related to socially interacting, interfacing, or communicating with other people in the participation space, varying from family and friends to strangers.  Sensory: features and accessibility related to hearing, seeing, and touching/feeling information and features in spaces and places.

Natural environment

Assistive technology

Climate and weather conditions in the natural environment (eg, rain, snow, heat, cold, outdoor air quality). Also includes geographic (urban, rural) and topographic features of the environment (hills, elevation, outdoor spaces, ground cover). See built environment for nuanced functional differences that also apply to the natural environment (eg, physical and sensory access issues). The use and availability of specialized devices/products/tools to facilitate participation in everyday activities (eg, dressing, bathing, eating, personal mobility, work, school, leisure, home management, social communication). These devices are typically specialized and not part of standard environments or regularly built in as features of the environment. Belongs to and/or is used by the individual and may or may not be portable across environments. Types of assistive technology primarily fell into the following categories:  Mobility devices (personal) (eg, wheelchairs, scooters, walkers, canes).  Activities of daily living equipment (eg, reachers, dressing aids, bathing equipment, toileting equipment).

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Table 2 (continued ) 4 themes with differences noted in detailed environmental features by type of functional needs experienced Theme

Description  Home modifications (eg, customized adaptations to the home living environment to facilitate use by person with disability, such as installation of a lift or ramp on a private dwelling or bathroom modifications).  Specialized communication or computer technology access (eg, alternate or augmentative communication devices, screen readers, alternate computer input devices).

Transportation

Functional differences similar to the built environment in sensory, physical, cognitive, and communication access features and types of assistive technology used; however, increasingly participants pointed to the need to also adapt commercially available everyday technologies to fit specific needs. Vehicular travel from one location to another via private (eg, driving self, others drive) and public modes (eg,buses, trains, paratransit or other alternative transit systems, taxis, planes, boats). Includes local, regional, and cross-country(ies) travel methods and their accessibility and systems/policies used within them. More similarities than differences seen in overall access to and availability of transportation resources. Functional differences similar to built environment in sensory, physical, cognitive and communication accessibility of transportation options, services, stations, and navigation aids/systems; however, issues with affordability, availability, and quality of transportation options similar across all groups.

Abbreviation: IT, information technology.

Organization to examine global health disparities and the influence of the environment on citizenship, social participation, and empowerment.37-39 These findings provide new insights into micro-, mesa-, and macro-level environmental factors for people with long-term disabilities that were not a focus in the Social Determinants of Health framework. Although many of the ICF’s taxonomy of environmental factors were identified and explicated in this study, the ICF schema belies the complex relations that were highlighted by the focus groups. Participants provided details about the relations between the 8 domains and the overarching micro, mesa, and macro levels within and across these domains. For example, participation choice and control were determined by a cluster of built, natural, social, economic, system, and policy factors and the person’s ability to simultaneously manage these factors on a daily basis, as illustrated by the following quote: It’s not about just having a ramp or not. If I want to get out that morning, it’s also about the weather and how that’s handled. If it’s really icy or snowy, the ramp isn’t that safe and I have to figure out whether to cancel or not before I even go outside. Then I have to worry about whether there’s a ramp everywhere I go in the community, and whether anyone has shoveled it and it’s clear, or if the sidewalks are cleared. But even before that, I have to think about what’s all this going to do to transportationdwill I be able to use it, will it even show up? Then backing up from there, I have to worry about whether my PA [personal attendant] will come that day to help me get up and out.Behind all this though, I’m worried about whether my home services benefits might get cut and I won’t have enough PA hours say, next week, then what? It’s one big, messy complex system I have to constantly deal with. The following quotations illustrate the interactive influence that macro-level economic and policy factors have on home, community, and work participation opportunities: There’s all these disincentives to going back to work, you know, with Social Security and all that. I’d love to go back to work, or as you say “participate productively.” But if I make over $12,000 a year, my benefits are cut and I’m left hanging in

the breeze if anything goes wrong. And how do you pay for an attendant or health care on that amount? So I don’t workdit’s really not a choice for me. OK, then I have to try to live on $700 a month or less if I go on disability, and that’s only if I qualify. How do I live on that? Could you live on that? That’s why so many disabled people land up in unsafe neighborhoods and they never leave their apartment. Yeah, you asked me what do I do for fun, or do I go out to eat? I don’t have any money left over to do that. Once I pay rent and utilities and basic stuff, there’s not much left over.I can’t do stuff for fun cause I can’t afford it. Economic environmental factors were consistently identified by participants as a critical influence on their participation. In some cases, they pointed to system-level economic issues (eg, inadequate subsidized income supports, lack of incentives in systems to return to work), grouped under services, systems, and policies. Participants also discussed very specific economic issues in their immediate world that influenced their quality of life and participation. This category still focuses on a critical environmental issue because it was experienced at an immediate individual level (eg, having sufficient income to afford market rent in one’s community, paying for medications and other medical expenses, having resources to dine out and socialize in one’s community). Environmental barriers dynamically vary by setting and within transitions between settings, as illustrated by the following quote: I’ve got my home all set to go; it’s completely accessible. But if I go outside my home, it’s a different story.stores, train stations and bus stops, places to eat, and especially bathrooms; bathrooms anywhere are a big problem. So my wife and I land up calling ahead and they say yes, they are ADA [Americans with Disabilities Act] accessible, but when we get there, there’s no way they are accessible. So we go back home or only go to the places we know are good. So when you asked me do I participate, I’d say back “it depends”; it depends on lots of things.

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Economic Systems, Services & Policies

Social Supports & Societal Atudes

Informaon & Technology Access

Environmental Barriers and Supports to Parcipaon

Transportaon

Natural Environment

Assisve Technology Built Environment

Fig 1 Thematic categories of environmental factors influencing participation, positively or negatively. Barriers and supports can exist at the same time if perceived by the individual to be influencing participation choice, control, and engagement.

Social and attitudinal factors also varied across physical and social contexts: My family’s great; we’ve got it down to a science every morning. It’s when I go out that’s a problem. People stare at me like they are surprised I’m even on the street. They don’t look where they are going and walk right in front of me and I lose my balance, and they get upset if I say anything. The young kids don’t want to give up their seats on the train, and it’s hard for me to stand and not fall. After the stroke, I’ve had problems talking, so people think I’m drunk, that I’m not able to do my job. My boss had to go to bat for me to say “it’s because of my stroke.” I go out to eat with my kids and the waiter asks them what I wantdask me, not them! These are problems in the world around me, not inside my body. Participants repeatedly spoke of the importance of social facilitators, including social relations (micro), social networks (mesa), and communities of support and identity (macro): Having access to the disability community has been a big support for me. Yeah, they taught me how to deal with the system. Not just for me, but for lots of people like me who are going through the same things. That’s how I learned how to participate again, just being with other people, figuring out who to call or where to go. My family doesn’t know this stuff; other people with disabilities do. I lucked out and found out about [a Center for Independent Living (CIL)], and they helped me get out of the nursing home and in my own place. No way I could have done this by myself. But you know, a lot of people getting out of rehab or living in nursing homes don’t even know they [CILs] exist. There’s a whole community of support we don’t know about, and don’t get information about. The critical importance of societal policies (macro) is illustrated by the following quote: There’s been a lot of good things since the ADA [Americans with Disabilities Act]. I am treated better, and I feel like a lot more www.archives-pmr.org

things are open to me. I can go lots of places. But that’s because we fought as a community. We are still fighting for those rightsdto live where you want to live, to work, to go to school, to get a ride so you can go downtown or see friendsdthat’s still a problem. I don’t think we would have gotten all this if we just tried to do by ourselves. It’s just too hard and you give up. That’s why we need to know about the disability community advocacy. Participants described how different environmental factors influenced everyday participation; figure 2 provides a grounded theory conceptualization of this layered, transformative influence. The intersection of environmental factors and levels can result in positive participation outcomes, such as improved participation engagement, choice and control, and resiliency/ ability to manage everyday life (micro outcomes); increased social capital, community access, and membership for people with disabilities (mesa outcomes); and increased societal enfranchisement and empowerment (macro societal outcomes) given increased societal opportunities for people with disabilities. Likewise, the influence could be negative or disabling, resulting in disengagement, segregation, social isolation, societal disenfranchisement, discrimination, and oppression. Action to change environmental barriers at any level could result in transformatory participation changes across many levels, potentially benefitting many people rather than only a single individual. Analysis of the focus group themes identified the profound impact that environmental factors have on participation. Focusing in on one example, figure 3 illustrates how social supports and societal attitudes at the micro, mesa, and macro levels can influence participation, coming together to enable or disable participation in different contexts and at different times during the life span and across the life course. Participation choice and control are shown by the center participation fulcrum, which can vacillate from enfranchisement to disenfranchisement depending on the environmental press involved. For example, access to a community of strong support, such as peer mentoring programming in centers for independent living (mesa community support), may override individual, community, and societal barriers and result in positive participation

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Systems, Services & Policies; TransportaƟon Services & Access

Social Supports & Societal Aƫtudes

MACRO

MESA MICRO

Economic Factors

InformaƟon & Technology Access

Home

Built & Natural Environments

AssisƟve Technology

Community ParƟcipaƟon

Work & Economic

Each environmental domain has factors at the micro, mesa, and macro level that can dynamically influence parƟcipaƟon outcomes, either posiƟvely or negaƟvely.

Social

Fig 2 Conceptual graphic showing how environmental factors can influence participation at the micro, mesa, and macro levels as described in the Social Determinants of Health model.37-39

engagement and a sense of enfranchisement. However, if people with disabilities are not introduced to disability and social communities of support in rehabilitation or the community (both mesa items), they may not become aware of or use them to support participation and therefore socially isolate and feel more disenfranchised. These findings inform research to refine person-environment frameworks; to examine relative influences of factors on participation, health, and quality of life; and to study the impact of environmental interventions or systems changes.

Discussion This project fills a knowledge gap by providing a large-scale, multisite, qualitative examination of environmental barriers and supports that affect home, community, work, and economic participation, as assessed by participants with TBI, SCI, and stroke. Use of qualitative methods across studies allowed us to triangulate findings across samples and projects. These qualitative data set the groundwork for the development of items to assess environmental factors on participation and quality of life19,20,35 and fills a measurement gap for people with disabilities and potentially for communities and systems. Across studies, people with disabilities described relations between environmental factors, participation, and quality of life. These focus groups helped us identify 8 environmental categories from which items and rating scales can be developed. We found that everyday participation is influenced by environmental factors at the individual (micro), community (mesa),

and societal (macro) levels, not just the micro immediate level usually focused on in rehabilitation (eg, individualized home modifications, assistive technology). These findings represent rich areas of environmental factors that can guide item development that reflects the lived experiences of people with disabilities.19,20 Participants with a range of diverse disabilities consistently identified macro-level influences (eg, economic resources, systems and policies, societal attitudes). They also identified access to information and commercially available information technologies (eg, smart phones, Internet) as a critical macro-level environmental factor that affected participation. We found that environmental factors can be addressed at the micro, mesa, or macro levels to transactively influence participation engagement, community empowerment, and societal enfranchisement.37 For example, civil rights legislation (eg, Americans with Disability Act) is a macro-level facilitator that can influence mesalevel community changes to building or transportation accessibility and therefore open participation opportunities for people with disabilities in specific communities. Class action lawsuits against Americans with Disability Act violations are a macro-level step to enforce civil rights compliance and to improve the responsiveness of systems and policies that affect many people. Businesses that fail to comply with Americans with Disability Act regulations (mesa influence) may prevent individuals from participating. Disability advocacy group complaints (mesa community factor) about this business or education of the business on how to improve access may enfranchise many people with disabilities. Rehabilitation

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Insider perspective on environmental supports and barriers Table 3

585

Direct quotes illustrating intersection of environmental factors with environmental layers of influence

Theme

Level

Built environment

Micro “If I can’t get out of my home, I can’t participate. No one talked about how to figure that out in rehab.” Mesa “There’s so many places in the city that aren’t accessible. I used to go to them before the SCI and haven’t since cause I can’t count on being able to get in the door. Or the bathroom.” “Getting around is really hard. There’s no signs or an easy way to get help if you have a TBI and can’t understand everything. What happens if I get lost or have an emergency?” Macro “So I went out to a restaurant and it wasn’t accessible. I didn’t want to complain or even know who to complain to so we just went back home. And there’s no good way to check out if things are accessible in advancedthey tell you they are and then you get there and they are not. No one’s monitoring this even if it is the law.” Micro “I got a ramp, but if it’s raining or snowing, it’s not safe to use, so I stay inside and don’t go out.” Mesa “I’d like to go to the lake or the park but it’s all gravel or sand and my wheelchair won’t work on it. That’s when I wish had one of those new expensive wheelchairs that worked on sand, or that the city would make more accessible paths.” Macro “It gets really hot here, and I can’t afford air conditioning and my apartment doesn’t have it. Sometimes I just want to get out to go someplace that is air conditioned, but then I don’t have transportation or money to do that.” Micro “If I have my chair, I can do this or I can do that or I can cook dinner but if I’m on my feet I’m less stable and I can’t do all those things.” “I use some assistive technology to get my work done. I use Dragon Dictate which is a voice recognition program which takes your spoken words and prints them on the screen.” Mesa “My house is accessible and my work’s accessible. I really probably don’t think about the wheelchair some days at all.But when you travel, then it becomes every day, every place you go, it becomes an issue again.I’ve been doing this for 20 years and I travel all the time, and every time it’s new cause you’ve got to worry about it and you can’t count on anything anymore.” Macro “As far as the technology and the advancements I tell everybody, if you had to be in a wheelchair, this is actually the best time to be.As much as it’s not fun to be in a wheelchair, this is the best time. You have so many rights, so many legal things, so many people that are aware of it.That makes a huge difference.” Micro “I had no idea there were so many resources out there for people with disabilities. I had to hunt for everything by myself.” Mesa “The one thing I did find is there’s so much literature out there about male sexuality. I’m not saying it’s good. There is hardly anything out there about women’s sexuality and spinal cord injury.We need more of this in rehab settings.” “If I go to X hospital I get lots of information and support but if I go to Y hospital, which is where I go cause I can’t afford to go to X, I got nothing. No one even talked about how to use a computer or cell phone after my stroke in rehab; that’s a problem.” Macro “Information is power, without access to information, disabled people don’t have power. If you can’t afford computer technology or a smart phone, you don’t have power. A lot of disabled people don’t have a voice in society because we don’t have access to information, or to technology like everyone else does.” Micro “I don’t go out cause I don’t have a way to get there. I feel guilty about always asking family to take me somewhere cause I can’t drive. Sometimes people at church pick me up so I can go there on Sundays, but that’s it. What else can I do?” Mesa “Paratransit won’t take me across county lines, so if I want to visit a friend in the next county over, I can’t. There’s no way to do that.After awhile you start losing friends.” “I could take the train, but a lot of the stations aren’t accessible, or you never know when the elevator is broken down at the station I want to go to. What do I do then?” Macro “All I need is money to get an accessible van but it’s just not there, that’s true for a lot of disabled folks.” “I live out in the boonies, in a rural area. We don’t have any transportation options. It’s really tough when transportation doesn’t exist.” Micro “Rents are so high at my place. By the end of the month, everything goes to pay for rent, and maybe utilities. A lot of times I don’t have anything left for food or even my meds, much less to go out and have fun or socialize.that’s not even an option.” Mesa “The city had all these cutbacks. So that meant less services available to me, like transportation, personal attendants, and meals on wheels. Seems there are always cutbacks so you can’t depend on services, so how do you live much less go out? ” Macro “I can’t live on $560/month. No one can, can you? There’s a whole bunch of people with disabilities out there living in poverty, on the edge, a step away from living on the streets or landing up in a nursing home.”

Natural environment

Assistive technology

Information and technology access

Transportation

Economic

Selected Quotes

(continued on next page)

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Table 3 (continued ) Theme

Systems, services, and policies

Level

Micro Mesa

Macro

Social supports and societal attitudes

Micro Mesa

Macro

Selected Quotes “Because none of us have those wheelchairs that go up steps, but they do have them.And they cost a lot of money, too, a lot of money.That gets us back to equity on healthcare, on all of these resource things–not just access, but equity.” “I spend all day troubleshooting the system, that’s my job, even though, technically, I’m not employed.” “I focused on walking and talking in rehab, but not on getting out into the community. I want to go out more now, maybe try to get a job, but they didn’t cover that in rehab and there’s not a lot of help in the community either.” “Because I feel like loss of benefits is a barrier for me. I would love to become a Montessori teacher but I can’t afford to pay for the schooling and Idif I started working full time and then lost my benefits and then had some sort of breakdown, I feel like that’s a huge barrier for me.” “Beyond just all the bullet points, there’s this big support framework, and whether you’ve got housing and medical insurance and funds for food and income, and so all of those things, I think there’s this massive apparatus that you’ve got to assemble before you can get down to community participation.” “My friends are my lifelines.” “Stroke club has been the biggest help.” “People outside think that someone in a chair is mentally retarded or can’t think on their own or anything.” “They get very uncomfortable. They want to be nice. They just don’t know how to deal with the situation. It’s not out of ignorance or sadism or anything like that.” “I think the word on ‘reasonable’ and ‘accommodation’ seems to be changed somewhat because that now means basically ‘well if we have to, we will’ and if we don’t have to, we won’t.” “Society doesn’t always know what needs to be done or what type of help to give to the various individuals.”

professionals can be actively involved in this environmental accessibility consultation, not only on the individual level, but also on the community and systems/policies levels. Current rehabilitation interventions typically focus on the micro level of a client’s immediate physical or social environment, which may be insufficient to enable full participation of people with disabilities after rehabilitation. The Social Determinants of Health framework37 and social ecological theories10,40,41 highlight the influence of the environment on participation and the need to change environmental factors or environmental press, not just individuals’ behaviors. It is important for rehabilitation service providers, funders, and policymakers to understand that environmental changes at the mesa and macro levels can influence participation outcomes as much or more than individual interventions. For example, built environment features in the community (eg, nonadjustable medical examination tables, physically inaccessible workout spaces in a community Young Men’s Christian Association) have a profound effect on health access and participation access for people with mobility impairments. People with visual and cognitive impairments may be more affected by inaccessible information and technology access or inhospitable or disparaging social attitudes that disable their full participation and lead to social isolation. People with physical disabilities (eg, wheelchair users) may evoke different societal attitudes than people with hidden cognitive disabilities (eg, TBI, stroke). Both groups identify societal attitudes and supports as important environmental factors influencing their participation, representing an environmental issue that could be strategized during rehabilitation and lead to more systematic social networking connections that would follow a person after they leave rehabilitation and return to the community. Social networking may also provide an umbrella of support for navigating difficult and complex environmental

systems (eg, those involved in transportation, housing, employment, economic/financial, and community living). For example, if people with disabilities are connected to accessible and affordable transportation options or home and community-based waivers that provide supports to live in the community, they then have the potential to more fully participate in their communities and social worlds; without knowledge of these environmental supports, that potential is left untapped and unrealized. Across environmental factors, rehabilitation professionals also could more actively and intentionally incorporate consumer direction, empowerment, and activation strategies into rehabilitation services so people with disabilities become more informed consumers and feel empowered to navigate and manage systems, services, and resources needed to live and participate in the community long term, including the integration of peer mentoring and social learning selfefficacy building groups into rehabilitation delivery.

Study limitations This project has several limitations that affect transferability of the findings. First, the 5 projects did not use the same question guide or facilitators and were not all focused primarily on environmental features of participation; however, environment was raised as a key discussion topic across all groups. Second, the sample sizes and inclusion criteria varied. Although some participants identified sensory and psychological disabilities, physical and cognitive disabilities were inclusion criteria across groups. Therefore, the findings may not describe the lived experiences of all people with disabilities. We did not sample participants from all geographic, climate, and built environments, which may limit scope and breadth of environmental themes. The results also focus on the lived experiences of people www.archives-pmr.org

Insider perspective on environmental supports and barriers

Barriers

Supports Societal (Macro)

Societal & cultural aƫtudes regarding disability & parƟcipaƟon

587

Corresponding author Joy Hammel, PhD, OTR/L, Professor and Endowed Chair, Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago, 1919 W Taylor St, Room 311, Chicago, IL 60612. E-mail address: [email protected].

RecogniƟon of civil rights Inclusion policies & resources to support Levels of discriminaƟon and social oppression Community (Mesa) Social networking & capital opportuniƟes Inclusion, voice & respect in community groups Aƫtudes from people in community Willingness of people & businesses in community to accommodate Disability community idenƟty, pride & resources to promote networking Personal (Micro) Existence & Strength of immediate social supports (family, life partner, friends) RelaƟonal strain Emergency/crisis social & emoƟonal supports Immediate support views of disability & parƟcipaƟon Awareness & access to disability parƟcipaƟon supports & resources

ParƟcipaƟon Enfranchisement Fulcrum

Fig 3 Based on Ecological40-41 and Social Determinants of Health36 theories, an example depicting how different social environmental factors and levels can influence participation, resulting in increased or decreased participation engagement (individual), social capital or community membership (community), and/or enfranchisement for citizens with disabilities as a social group (societal). Factors can have a transactional influence in tipping the participation fulcrum toward a balanced perception of full participation or a negatively skewed perception of participation restrictions or disparities.

with disabilities from their insider perspectives, not objective audits of environmental features. Additional qualitative and quantitative research is needed to further describe environmental factors and their impact on everyday participation for diverse people with disabilities.

Conclusions This study highlights immediate, community, social, and societal environmental features that influence individual participation and societal enfranchisement of people with disabilities. Identification of these factors allows the development of a comprehensive, consumer-focused assessment of the environment that measures the impact of environment barriers and supports on participation and also could be used to then evaluate the effectiveness of environmental interventions and policies designed to support the full participation of people with disabilities in society.

Keywords Environment; Focus groups; Qualitative research; Rehabilitation; Social determinants of health; Social participation www.archives-pmr.org

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