The Relationship of Exercise, Psychosocial Factors, and Social Participation Among Adults Aging With Long-Term Physical Disability: A Cross-Sectional Study.

PURPOSE: This study investigated the relationships among exercise engagement, psychosocial factors, and social participation for adults aging with physical disabilities (AAwPD). DESIGN: A cross-sectional study within a community-based cohort study of participation among AAwPD was conducted. SETTING: A comprehensive survey was administered online or via telephone. PARTICIPANTS: Participants were 474 individuals between the ages of 45-65, primarily living in the Midwestern United States, who reported living with a physical disability for at least 5 years. METHOD: Survey questions created based on prior consolidation of activity domains assessed exercise engagement. Psychosocial health and social participation were measured using the Patient Reported Outcomes Measurement Information System. Chi-square tests, t-tests, and a general linear model were used to examine differences between exercisers and non-exercisers. RESULTS: Participants who exercised reported less pain (P < .001), fatigue (P < .001), and depression (P < .001) and greater self-efficacy for management of chronic conditions (P = .002), satisfaction with participation in social roles and activities (P < .001), and ability to participate in social roles and activities (P < .001) compared with non-exercising participants. CONCLUSIONS: AAwPD who exercised reported fewer secondary conditions and greater social participation. Although causal relationships cannot be drawn, and the frequency, duration, and intensity of exercise were not examined, this study lays important groundwork for future research to determine the health and participation benefits of exercise for AAwPD. Future studies should also focus on the development of exercise interventions to support successful aging with disability.

Influence of falls, fall-related injuries, and fear of falling on social participation in people aging with long-term physical disability: a cross-sectional study.

PURPOSE: This study examined prevalence and relationships among falls, injuries, fear of falling, and social participation in people aging with long-term physical disability (PAwLTPD). MATERIALS AND METHODS: A convenience sample of 474 PAwLTPD recruited from community agencies and social media as baseline of a longitudinal cohort study. Inclusion criteria: 45-65 years, self-reported physical disability for ≥5 years, and English-speaking. Self-report surveys of physical/mental health, falls in the past year, fear of falling, and Patient-Reported Outcomes Measurement Information System (PROMIS) ability and satisfaction with participation in social roles and activities measures were collected. RESULTS: Mean age 56.8 years; participants were mostly female (66.7%) and White (61.4%). Nearly 65% reported a fall; 56.6% of falls resulted in injury. Falls and fall-related injuries were associated with worse physical/mental health and presence of >5 health conditions. Seventy-five percent of participants reported fear of falling. Lower ability and satisfaction with participation were found in participants who fell and worried about falls. CONCLUSIONS: PAwLTPD are at increased risk of falls, fall-related injuries, and fear of falling, which affects their ability to engage in social activities. Future research is needed to understand circumstances associated with falls and to develop effective interventions to address falls in PAwLTPD.

Community-dwelling individuals aged 45­65 years who are aging with long-term physical disabilities report increased rates of falls, fall-related injuries, and fear of falling.People aging with long-term physical disabilities who experience falls report decreases in their social participation.Additional work within the rehabilitation field is needed to develop effective, evidence-based interventions to reduce the occurrence of falls among individuals aging with long-term physical disability.

Mobility Disability and Exercise: Health Outcomes of an Accessible Community-Based Center.

Objective: The purpose of this study was to determine how support and guidance provided by trained professionals during a 12-week, community-based transition exercise program, impact health outcomes and continued engagement in physical activity for persons with a mobility disability (PwMD). Design: A single arm pre-post design was used. Setting: Accessible community-based health and wellness center. Participants: The study included 244 PwMD using a mobility device. Interventions: Participants completed a 12-week transition exercise program provided through an accessible community facility that provided education and support to complete endurance and strength related exercises as well as programming to encourage transition to self-directed engagement in exercise. Main Outcome Measures: Bodyweight, BMI, pain, perceived exertion, speed, and distance during cardiovascular fitness testing, and strength were measured pre and post exercise program. The number of participants that signed up for a monthly membership after the program was also monitored. Results: For the total group, average pain reported over previous 30 days decreased significantly (p < 0.01), current daily pain decreased significantly (p < 0.05), perceived exertion at the end of the 9-min endurance test decreased significantly (p < 0.05), and the four upper extremity strength exercises showed large, significant strength gains (p < 0.01) after the program. There was no significant change in bodyweight, BMI, or speed and distance completed during endurance testing. At the completion of the program, 76% of participants enrolled in a monthly membership at the facility with the intentions to continue to exercise regularly. Conclusions: This study provides evidence that an accessible community-based exercise program, with a transitional component supported by trained professionals, can support the exercise goals of PwMD and improve strength, decrease pain, and may promote regular exercise adoption for PwMD.

Pilot Study of a Self-Management Program for Parents With Spinal Cord Injury or Disease.

IMPORTANCE: This study lays the groundwork for a self-management program run by occupational therapy practitioners for parents with spinal cord injury or disease (SCI/D). OBJECTIVE: To develop and implement the Parenting Self-Management Program with people with SCI/D and evaluate the potential impact on knowledge, self-efficacy, and participation. DESIGN: A mixed-methods approach was used to develop (Phase 1) and implement and evaluate (Phase 2) a pilot group intervention for parents with SCI/D. SETTING: Community-based occupational therapy settings. PARTICIPANTS: Phase 1 participants were professionals working in the field of disability and SCI/D (n = 11) and experienced parents with SCI/D (n = 9). Phase 2 participants were people with SCI/D who were newly injured or inexperienced in parenting (n = 10). All participants were paid volunteers. INTERVENTION: The 4-wk Parenting Self-Management Program was piloted with 10 parents with SCI/D. Participants attended a weekly program with other parents with SCI/D led by occupational therapists in which they received parenting resources and presentations and set weekly goals. OUTCOMES AND MEASURES: The General Self-Efficacy Scale, a modified version of the Participation Survey/Mobility, and open-ended questions regarding parents' participation in parenting tasks were administered during Phase 2. RESULTS: Significant increases (p < .05) in perceived knowledge were found for the topics of emergency preparedness, home modifications, adapted equipment, fatigue management, pain management, and community resources among Phase 2 participants. CONCLUSIONS AND RELEVANCE: A self-management approach combined with pertinent resources for parents with SCI/D yielded positive outcomes. WHAT THIS ARTICLE ADDS: This research demonstrates that a self-management structure for a specific population (people with SCI/D) in combination with a targeted occupation (parenting) and delivered through group occupational therapy services, improved client outcomes.

Development and implementation of a community-based research network.

INTRODUCTION: People aging with long-term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. MATERIALS AND METHODS: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. RESULTS: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. CONCLUSION: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.

Examination of Community Participation of Adults With Disabilities: Comparing Age and Disability Onset.

Objective: Explore community participation between adults with disabilities ⩽50 and >50 years and between early-(⩽40) and late-(>40) onset disability. Method: A survey examining participation was conducted with a national convenience sample of 692 community-dwelling adults with disabilities. Results: Participants ⩽50 reported presence of more (p < .05) environmental supports for work/volunteer/education and use of transportation. Participants >50 had higher (p < .01) visits to pharmacies; higher (p < .05) evaluative quality of participation (EQOP) at gas stations, exercise facilities, beauty salons/barbers, and use of transportation (p < .01); and more difficulty participating without assistance at grocery stores (p < .05) and gas stations (p < .01). The early-onset group reported higher (p < .05) EQOP at work/volunteer/education and homes of family/friends. The late-onset group reported higher (p < .01) EQOP at exercise facilities; more (p < .05) environmental supports at pharmacies, restaurants, grocery stores (p < .01), doctors' offices (p ⩽ .01), and beauty salons/barbers (p < .01); greater (p < .01) influence of pain/fatigue; and more difficulty without assistance at grocery stores (p < .05) and gas stations (p < .01). Discussion: Understanding these differences can improve interventions to support community participation of individuals aging with disabilities.

Relationships between environmental factors and participation in adults with traumatic brain injury, stroke, and spinal cord injury: a cross-sectional multi-center study.

PURPOSE: To develop and evaluate a model of environmental factors-participation relationships for persons with traumatic brain injury (TBI), stroke, and spinal cord injury (SCI), and test whether this model differed across three diagnostic groups, as well as other demographic and clinical characteristics. METHODS: A cross-sectional observational study included 545 community-dwelling adults with neurological disorders (TBI = 166; stroke = 189; SCI = 190) recruited at three academic medical centers. Participants completed patient-reported measures of environmental factors and participation. RESULTS: The final structural equation model had acceptable fit to the data (CFI = 0.923; TLI = 0.898; RMSEA = 0.085; SRMR = 0.053), explaining 63% of the variance in participation in social roles and activities. Systems, services, and policies had an indirect influence on participation and this relation was mediated by social attitudes and the built and natural environment. Access to information and technology was associated with the built and natural environment which in turn influence on participation (ps < 0.001). The model was consistent across sex, diagnosis, severity/type of injury, education, race, age, marital status, years since injury, wheelchairs use, insurance coverage, personal or household income, and crystallized cognition. CONCLUSIONS: Social and physical environments appear to mediate the influence of systems, services, and policies on participation after acquired neurological disorders. These relations are stable across three diagnostic groups and many personal and clinical factors. Our findings inform health and disability policy, and provide guidance for implementing the initiatives in Healthy People 2020 in particular for people with acquired neurological disorders.

An Item Bank to Measure Systems, Services, and Policies: Environmental Factors Affecting People With Disabilities.

OBJECTIVES: To develop a measure of perceived systems, services, and policies facilitators (see Chapter 5 of the International Classification of Functioning, Disability and Health) for people with neurologic disabilities and to evaluate the effect of perceived systems, services, and policies facilitators on health-related quality of life. DESIGN: Qualitative approaches to develop and refine items. Confirmatory factor analysis including 1-factor confirmatory factor analysis and bifactor analysis to evaluate unidimensionality of items. Rasch analysis to identify misfitting items. Correlational and analysis of variance methods to evaluate construct validity. SETTING: Community-dwelling individuals participated in telephone interviews or traveled to the academic medical centers where this research took place. PARTICIPANTS: Participants (N=571) had a diagnosis of spinal cord injury, stroke, or traumatic brain injury. They were 18 years or older and English speaking. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: An item bank to evaluate environmental access and support levels of services, systems, and policies for people with disabilities. RESULTS: We identified a general factor defined as "access and support levels of the services, systems, and policies at the level of community living" and 3 local factors defined as "health services," "community living," and "community resources." The systems, services, and policies measure correlated moderately with participation measures: Community Participation Indicators (CPI) - Involvement, CPI - Control over Participation, Quality of Life in Neurological Disorders - Ability to Participate, Quality of Life in Neurological Disorders - Satisfaction with Role Participation, Patient-Reported Outcomes Measurement Information System (PROMIS) Ability to Participate, PROMIS Satisfaction with Role Participation, and PROMIS Isolation. CONCLUSIONS: The measure of systems, services, and policies facilitators contains items pertaining to health services, community living, and community resources. Investigators and clinicians can measure perceptions of systems, services, and policies resources reliably with the items described here. Moderate relations between systems, services, and policies facilitators and PROMIS and CPI variables provide support for the measurement and theory of environmental effects on social functioning related to participation.

Measuring Environmental Factors: Unique and Overlapping International Classification of Functioning, Disability and Health Coverage of 5 Instruments.

OBJECTIVES: To describe the unique and overlapping content of the newly developed Environmental Factors Item Banks (EFIB) and 7 legacy environmental factor instruments, and to evaluate the EFIB's construct validity by examining associations with legacy instruments. DESIGN: Cross-sectional, observational cohort. SETTING: Community. PARTICIPANTS: A sample of community-dwelling adults with stroke, spinal cord injury, and traumatic brain injury (N=568). INTERVENTIONS: None. MAIN OUTCOME MEASURES: EFIB covering domains of the built and natural environment; systems, services, and policies; social environment; and access to information and technology; the Craig Hospital Inventory of Environmental Factors (CHIEF) short form; the Facilitators and Barriers Survey/Mobility (FABS/M) short form; the Home and Community Environment Instrument (HACE); the Measure of the Quality of the Environment (MQE) short form; and 3 of the Patient Reported Outcomes Measurement Information System's (PROMIS) Quality of Social Support measures. RESULTS: The EFIB and legacy instruments assess most of the International Classification of Functioning, Disability and Health (ICF) environmental factors chapters, including chapter 1 (products and technology; 75 items corresponding to 11 codes), chapter 2 (natural environment and human-made changes; 31 items corresponding to 7 codes), chapter 3 (support and relationships; 74 items corresponding to 7 codes), chapter 4 (attitudes; 83 items corresponding to 8 codes), and chapter 5 (services, systems, and policies; 72 items corresponding to 16 codes). Construct validity is provided by moderate correlations between EFIB measures and the CHIEF, MQE barriers, HACE technology mobility, FABS/M community built features, and PROMIS item banks and by small correlations with other legacy instruments. Only 5 of the 66 legacy instrument correlation coefficients are moderate, suggesting they measure unique aspects of the environment, whereas all intra-EFIB correlations were at least moderate. CONCLUSIONS: The EFIB measures provide a brief and focused assessment of ICF environmental factor chapters. The pattern of correlations with legacy instruments provides initial evidence of construct validity.

Using the ICF's environmental factors framework to develop an item bank measuring built and natural environmental features affecting persons with disabilities.

OBJECTIVES: To develop a measure of natural environment and human-made change features (Chapter 2 of the international classification of functioning, disability, and health) and evaluate the influence of perceived barriers on health-related quality of life. METHODS: A sample of 570 adults with stroke, spinal cord injury, and traumatic brain injury residing in community settings reported their functioning in home, outdoor, and community settings (mean age = 47.0 years, SD = 16.1). They rated 18 items with a 5-point rating scale to describe the influence of barriers to moving around, seeing objects, hearing sounds, hearing conversations, feeling safe, and regulating temperature and indicated whether any difficulties were due to environmental features. We used Rasch analysis to identify misfitting items and evaluate differential item functioning (DIF) across impairment groups. We computed correlations between barriers and patient-reported outcomes measurement information system (PROMIS) social domain measures and community participation indicators (CPI) measures. RESULTS: The 18 items demonstrated person reliability of .70, discriminating nearly three levels of barriers. All items fit the Rasch model; impairment-related DIF was negligible. Ceiling effects were negligible, but 25 % of the respondents were at the floor, indicating that they did not experience barriers that they attributed to the built and natural environment. As anticipated, barriers correlated moderately with PROMIS and CPI variables, suggesting that although this new item bank measures a construct that is related to participation and health-related quality of life, it also captures something unique. Known-groups validity was supported by wheelchair users reporting a higher level of barriers than did ambulatory respondents. CONCLUSIONS: Preliminary evidence supports the reliability and validity of this new measure of barriers to the built and natural environment. This measure allows investigators and clinicians to measure perceptions of the natural environment and human-made changes, providing information that can guide interventions to reduce barriers. Moderate relationships between barriers and PROMIS and CPI variables provide support for the measurement and theory of environmental influences on social health and participation.

Influence of a Consumer-Directed Personal Assistance Services Program on the lives of persons with mobility impairments.

OBJECTIVE: To examine the effects of a consumer-directed personal assistance services (CDPAS) program on the lives of persons with disabilities. METHODS: Thirteen individuals receiving paid agency-directed PAS services before enrollment in a CDPAS program (Agency Group) and 40 individuals receiving only unpaid PAS before enrollment (Informal Group) participated in this prospective study. In-home interviews were conducted just prior to CDPAS enrollment and again 6 months after CDPAS enrollment. RESULTS: Overall choice and satisfaction with PAS improved significantly for both groups after CDPAS initiation (p < .05). Total PAS hours increased significantly for the Informal Group (p < .01) but not the Agency Group. The Informal Group used relatives to provide the majority of its CDPAS hours, while the Agency Group chose to use nonrelatives and nonfriends to provide the majority of its CDPAS hours. Few significant changes in health status were observed for either group after the CDPAS intervention, although most changes were in the positive direction. The CDPAS program did not appear to have a large effect on individuals' personal and community participation, but participants reported a relatively high quality of participation at both time points. CONCLUSION: This study supports other findings that consumers prefer CDPAS to agency-directed care and provides new evidence that this preference cannot be explained by an increase in PAS hours that often accompanies enrollment in a CPDAS program. Although CDPAS appear to have subtle positive effects on consumer health and participation, ways in which CDPAS can maximize health status and participation quality among consumers should be explored.