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Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings-to work, grocery stores, or medical appointments, for example-have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.
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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.
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Pessoas com Deficiência , Exercício Físico , Participação Social , Humanos , Estudos Transversais , Participação Social/psicologia , Masculino , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/estatística & dados numéricos , Feminino , Pessoa de Meia-Idade , Exercício Físico/psicologia , Idoso , Autoeficácia , Depressão/epidemiologia , Depressão/psicologia , Fadiga/psicologia , Meio-Oeste dos Estados UnidosRESUMO
OBJECTIVES: (1) Examine the feasibility of a community-based exercise intervention for persons with spinal cord injury and (2) compare the cardiorespiratory fitness, skeletal muscle strength, and psychosocial well-being of participants in the intervention group versus control group. DESIGN: Community-based pilot randomized controlled trial. Setting: Accessible community-based health and wellness center. Participants: Thirty-two sedentary community-dwelling adults with any level of spinal cord injury. Interventions: Participants were randomized to a 36-session/12-week community-based exercise program (intervention; EG) or to a 36-session/12-week physical activity education group (control; CG). Outcome measures: Primary outcome measures included cardiorespiratory fitness measured by a VO2peak test, a composite score of four upper extremity musculoskeletal strength 1-repetition maximum exercises, and feasibility measured by EG participants' adherence and exercise intensity achieved during the program. EG participants' acceptance of the program was also evaluated using a self-reported satisfaction scale. Self-efficacy, motivation, pain, and goal performance and satisfaction were secondary outcome measures. Adherence and acceptability were also measured. RESULTS: Fifteen participants (n = 15) completed the community-based exercise intervention and seventeen (n = 17) completed the education program. While no statistically significant differences were found, the EG experienced changes of moderate effect size in cardiorespiratory fitness, strength, motivation, and satisfaction with their goals. The EG attended, on average, two sessions per week. The community-based exercise intervention was highly accepted by and satisfying for participants to engage in. CONCLUSIONS: The EG had improvements in the two primary measures, cardiorespiratory fitness and musculoskeletal strength, following the intervention. The community-based exercise intervention was feasible and accepted by participants.
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BACKGROUND: Community participation measures for persons aging with disability were developed and evaluated to support community-based organizations (CBOs) with efficient assessment of change in participation and need for supports/services to facilitate participation. OBJECTIVE: To evaluate a set of nine activity domain measures to broadly assess community participation and change in participation over time. METHODS: A community-based sample (N = 323) of persons ages 45-65 responded to a survey with repeated measures three times annually (T1, T2, T3) between 2019 and 2022. Nine activity domain measures were developed based on extant research and evaluated with assistance from community-based support service providers. Statistical analyses employed T-tests and chi-square tests to assess change in participation over time, perceptions of participation satisfaction, and assistance needed to facilitate participation. Participants were asked if they thought changes were attributable to aging, the COVID-19 pandemic, or other factors. RESULTS: Findings showed varying levels of participation across the nine activity domains, with the lowest participation rate for employment and the highest participation rates for personal leisure and managing medications across T1, T2, and T3. Change in participation over the three-year period was limited; most change was reported as activity reduction. In general, respondents indicated that reduction was due to their aging or the COVID-19 pandemic. Personal assistance, transportation, environmental modifications, and improved health were identified as factors needed to help increase participation levels. CONCLUSION: The activity domain measures demonstrated efficiency in identifying participation rates and change. CBOs may deem them useful for assessing support and service needs to facilitate participation.
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COVID-19 , Pessoas com Deficiência , Humanos , Pandemias , Envelhecimento , Inquéritos e QuestionáriosRESUMO
Background: Nerve transfer (NT) and tendon transfer (TT) surgeries can enhance upper extremity (UE) function and independence in individuals with cervical spinal cord injury (SCI). Caregivers are needed to make this surgery possible, yet caregivers experience their own set of challenges. Objectives: This comparative study explored the perioperative and nonoperative experiences of caregivers of individuals with cervical SCI, focusing on daily life activities, burden, and mental health. Methods: Caregivers of individuals with cervical SCI were recruited and grouped by treatment plan for the person with SCI: (1) no surgery (NS), (2) TT surgery, and (3) NT surgery. Semistructured interviews were conducted at baseline/preoperative, early follow-up/postoperative, and late follow-up/postoperative. Caregivers were asked about their daily life, mental health, and challenges related to caregiving. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Quantitative, single-item standardized burden score (0-100) data were collected at each timepoint. Results: Participants included 23 caregivers (18 family members, 4 friends, 1 hired professional). The surgeries often brought hope and motivation for caregivers. Caregivers reported increased burden immediately following surgery (less for the NT compared to TT subgroup) yet no long-term changes in the amount and type of care they provided. NS caregivers discussed social isolation, relationship dysfunction, and everyday challenges. Conclusion: Health care providers should consider the changing needs of SCI caregivers during perioperative rehabilitation. As part of the shared surgical decision-making approach, providers should educate caregivers about the postoperative process and the extent and potential variability of short- and long-term care needs.
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Traumatismos da Medula Espinal , Cirurgia Plástica , Humanos , Traumatismos da Medula Espinal/psicologia , Estudos Prospectivos , Assistência Perioperatória , Extremidade Superior/cirurgiaRESUMO
BACKGROUND: Adults aging with long-term physical disabilities (AAwPDs) experience barriers in the built environment that can hinder their participation in meaningful social roles and activities. However, interventions addressing built environment barriers to participation for AAwPD are limited. OBJECTIVE: The purpose of this study was to examine how the built environment and other socioenvironmental factors influence the social participation of AAwPD to inform future interventions and service provision. We hypothesized that social participation would be significantly different between AAwPD using private versus public transportation and living in urban versus rural areas. METHODS: This cross-sectional study of 331 Missouri-dwelling AAwPD reports findings on relationships among transportation mode, urban versus rural residence, and ability to participate in social roles and activities using PROMIS measures. A multivariate analysis of covariance (MANCOVA) explored differences in social participation across transportation mode and residential location. Linear regression examined associations among socioenvironmental factors, individual factors, and social participation. RESULTS: The MANCOVA demonstrated significant differences in social participation across transportation mode and urban versus rural residential location. Specifically, AAwPD using paratransit and living in urban areas reported significantly higher social participation than rural-dwelling individuals and private transportation users (p < .001). The linear regression revealed that individual factors served a larger role in predicting social participation than built or social environmental factors. CONCLUSIONS: Our findings suggest that transportation mode plays a significant role in shaping social participation outcomes for AAwPD. However, compared to built and social environmental factors, individual factors (i.e., physical function, 'aging-with-disability' symptoms) may restrict social participation more.
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Pessoas com Deficiência , Participação Social , Humanos , Adulto , Estudos Transversais , População Rural , Envelhecimento , Meios de Transporte , Características de ResidênciaRESUMO
BACKGROUND: Fatigue significantly affects daily functioning in persons with disabilities. Fatigue management can be challenging, and the information provided during routine physician visits to manage fatigue can be overwhelming. One way to address fatigue is to increase knowledge, skills, and confidence for self-management (ie, patient activation). Self-management programs have shown promising effects in targeting fatigue in persons with disabilities. However, satisfaction with self-management programs is low for persons with disabilities, and tailoring interventions to personalized needs has been recommended. SMS text messaging is increasingly being used to implement health behavior change interventions in a person's natural environment. Little has been done to link mobile health approaches with patient activation and self-management to address fatigue in persons with disabilities. OBJECTIVE: This study aimed to develop and test a mobile phone-based fatigue self-management SMS text messaging intervention targeting patient activation in 3 groups of persons with disabilities: persons with multiple sclerosis, persons who had a stroke, and persons with a spinal cord injury. METHODS: We used evidence-based resources and input from a consumer advisory board (CAB; composed of 2 participants from each of the 3 disability groups) and a neurologist to develop the intervention. The study was conducted using a 4-step process: development of the initial SMS text messaging library and categorization of the content into 9 content areas, review and modification of the SMS text messages by the neurologist and CAB, integration of the content library into a digital platform, and utility testing by CAB members. RESULTS: A total of 6 CAB participants rated SMS text messages covering 9 domain areas of fatigue self-management with good clarity (mean ratings=3.5-5.0 out of 5) and relevance (mean ratings=3.2-5.0 out of 5). Overall, SMS text messaging content was reported by CAB participants as helpful, clear, and well suited for a mobile health intervention. The CAB reached consensus on the time of day that SMS text messages should be sent (morning) and their frequency (once per day). This feedback led the research team to narrow down the program to deliver 48 SMS text messages, 1 per day, Monday through Thursday only, a total of 4 SMS text messages per week, over a 12-week period. The final set of SMS text messages was programmed into a digital platform with a predefined delivery schedule. The usability of the intervention was high, with 55 (83%) out of 66 responses endorsing the highest rating. CONCLUSIONS: This study demonstrates a step-by-step process for developing a fatigue self-management SMS text messaging intervention for persons with disabilities. For this population, whose access to health services is often limited, this intervention provides an alternative delivery model to increase access to fatigue information and deliver content that aligns with the person's needs.