RESUMO
OBJECTIVE: Social support is important for health and functional outcomes after traumatic brain injury (TBI), but many adults with TBI report inadequate social support. Little research has examined the social support priorities of adults with TBI or what an optimal social support network should include. The objective of this study was to describe the social support structures and experiences of adults with TBI. SETTING: Community-based rehabilitation program. PARTICIPANTS: Community-dwelling adults with TBI, predominantly from racial and ethnic minority groups. DESIGN: Cross-sectional collection of quantitative and qualitative data. MAIN MEASURES: Number of close social contacts and total social contacts, along with a report of the frequency of social support using the Medical Outcomes Study Social Support Survey. Qualitative interviews were used to examine the quality of social support and participant values and priorities. RESULTS: Participants had an average of 4.3 close contacts (median 3.5, range 1-10), an average of 8.5 total social contacts (median 7, range 2-28), and a low frequency of social support (mean 28.4, SD = 24.7). Interview themes fell under 2 grand themes: structure of social networks (social networks are made up of families; proximity influences the type of support) and quality of social support (commitment vs indifference; doing things with and for others adds meaning; and "they just love me"). CONCLUSION: Participants in this study had small social networks and a low frequency of social support. Findings suggest that people with TBI value committed support partners, social inclusion, bidirectional relationships, and emotional connection, yet experience lower support in these areas compared to tangible support. Future research should examine how to adapt existing models of social support to more closely align with participant values. Rehabilitation services may need to focus more heavily on individual and family training, addressing strategies to develop and maintain relationships, emotional connection, and communication to enhance relationship and social support quality.
Assuntos
Lesões Encefálicas Traumáticas , Apoio Social , Humanos , Masculino , Feminino , Adulto , Lesões Encefálicas Traumáticas/reabilitação , Lesões Encefálicas Traumáticas/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Idoso , Adulto Jovem , Pesquisa QualitativaRESUMO
OBJECTIVE: To examine which 24-hour rest-activity rhythm (RAR) characteristics are associated with depression symptoms in stroke survivors. DESIGN: Cross-sectional observational study examining associations of RAR characteristics with the presence of depression symptoms adjusting for age, sex, race, and medical comorbidity. SETTING: Community setting. PARTICIPANTS: Stroke survivors: (1) recruited locally (N women=35, N men=28) and (2) a nationally representative probability sample (the National Health and Nutrition Examination Survey [NHANES]; N women=156, N men=124). INTERVENTIONS: None. MEASUREMENTS: Objective RAR characteristics derived from accelerometer recordings including activity onset/offset times and non-parametric measures of RAR strength (relative amplitude), stability (interdaily stability), and fragmentation (intradaily variability). The presence of depression symptoms was categorized using Patient Health Questionnaire scores. RESULTS: In both samples, the only RAR characteristic associated with depression symptoms was intradaily variability (fragmentation): local sample, odds ratio=1.96 [95% confidence interval=1.05-3.63]; NHANES sample, odds ratio=1.34, [95% confidence interval=1.01-1.78]). In the NHANES sample, which included both mild and moderate/severe depression, the association between 24-hour sleep-wake fragmentation and depression symptoms was driven by moderate-to-severe cases. CONCLUSIONS: Stroke survivors with higher levels of RAR fragmentation were more likely to have depression symptoms in both samples. These findings have implications, given prior studies in general samples linking RAR fragmentation with future depression and dementia risk. Research is needed to establish the potential consequences, mechanisms, and modifiability of RAR fragmentation in stroke survivors.
Assuntos
Sono , Acidente Vascular Cerebral , Masculino , Humanos , Feminino , Inquéritos Nutricionais , Ritmo Circadiano , Depressão/epidemiologia , Estudos Transversais , Actigrafia , Acidente Vascular Cerebral/complicaçõesRESUMO
IMPORTANCE: Little is known about the severity of participation restrictions among people living in the community with chronic stroke. Even less is known about the association between participation and health in this population. OBJECTIVE: To describe participation among people with chronic stroke and examine the association between participation and physical and mental health. DESIGN: Secondary analysis of baseline data from an intervention study. SETTING: The parent multisite intervention study was conducted in the community, and assessments were administered in participants' homes. PARTICIPANTS: Thirty-one community-dwelling adults with chronic stroke. OUTCOMES AND MEASURES: Participation was measured with the Activity Card Sort (percentage of prestroke activities retained) and the Enfranchisement Scale of the Community Participation Indicators. Health was measured with the PROMIS®-29 Physical Health and Mental Health subscales. We calculated descriptive statistics for participation measures and Spearman's ρ correlations between participation and health outcomes. RESULTS: Participation scores were poor on all measures of participation. Most striking, 94.9% of participants retained less than 80% of their prestroke activities. All measures of participation were modestly correlated with physical health (ρ = .28-.46) and were moderately correlated with mental health (ρ = .42-.63). CONCLUSIONS AND RELEVANCE: Participation restrictions are prevalent among adults with chronic stroke, with potential implications for mental health. Stronger community-based rehabilitation and support services to enhance participation of this high-risk population are warranted. What This Article Adds: This report highlights the severity of participation restrictions among people with chronic stroke. Moreover, this report shows that people with stroke feel a lack of inclusion in the community and that participation is associated with mental and physical health.
Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Adulto , Vida Independente , Acidente Vascular Cerebral/complicações , Participação da ComunidadeRESUMO
IMPORTANCE: Guidance is limited for training protocols that support stakeholders who are new to participating in telerehabilitation interventions using videoconferencing software. OBJECTIVE: To explore stakeholders' experiences participating in a group-based intervention during the coronavirus disease 2019 (COVID-19) pandemic using a videoconferencing software (Zoom). DESIGN: Ad hoc exploratory thematic analysis. SETTING: Community-based telerehabilitation. PARTICIPANTS: Stakeholders included group members (n = 8) who were low-income adults with chronic stroke (≥3 mo) and mild to moderate disability (National Institutes of Health Stroke Scale ≤ 16), group leaders (n = 4), and study staff (n = 4). INTERVENTION: Group-based intervention, ENGAGE, delivered using videoconferencing technology. ENGAGE blends social learning and guided discovery to facilitate community and social participation. OUTCOMES AND MEASURES: Semistructured interviews. RESULTS: Stakeholders included group members (ages 26-81 yr), group leaders (ages 32-71 yr), and study staff (ages 23-55 yr). Group members characterized ENGAGE as learning, doing, and connecting with others who shared their experience. Stakeholders identified social advantages and disadvantages to the videoconferencing environment. Attitudes toward technology, past technology experiences, the amount of time allotted for training, group size, physical environments, navigation of technology disruptions, and design of the intervention workbook were facilitators for some and barriers for others. Social support facilitated technology access and intervention engagement. Stakeholders recommended training structure and content. CONCLUSIONS AND RELEVANCE: Tailored training protocols may support stakeholders who are participating in telerehabilitation interventions using new software or devices. Future studies that identify specific tailoring variables will advance the development of telerehabilitation training protocols. What This Article Adds: These findings provide stakeholder-identified barriers and facilitators, in addition to stakeholder-informed recommendations, for technology training protocols that may support uptake of telerehabilitation in occupational therapy.
Assuntos
COVID-19 , Terapia Cognitivo-Comportamental , Acidente Vascular Cerebral , Estados Unidos , Adulto , Humanos , Aprendizagem , Comunicação por VideoconferênciaRESUMO
OBJECTIVE: This study examined the construct validity of the Enfranchisement scale of the Community Participation Indicators. DESIGN: We conducted a secondary analysis of data collected in a cross-sectional study of rehabilitation outcomes. SUBJECTS: The parent study included 604 community-dwelling adults with chronic traumatic brain injury, stroke, or spinal cord injury. The sample had a mean age of 64.1 years, was two-thirds male, and included a high proportion of racial minorities (n = 250, 41.4%). MAIN MEASURES: The Enfranchisement scale contains two subscales: the Control subscale and the Importance subscale. We examined correlations between each Enfranchisement subscale and measures of participation, environment, and impairments. The current analyses included cases with at least 80% of items completed on each subscale (Control subscale: n = 391; Importance subscale: n = 219). Missing values were imputed using multiple imputation. RESULTS: The sample demonstrated high scores, indicating poor enfranchisement (Control subscale: M = 51.7; Importance subscale: M = 43.0). Both subscales were most strongly associated with measures of participation (Control subscale: r = 0.56; Importance subscale: r = 0.52), and least strongly associated with measures of cognition (Control subscale: r = 0.03; Importance subscale: r = 0.03). The Importance subscale was closely associated with depression (r = 0.54), and systems, services, and policies (r = 0.50). Both subscales were associated with social attitudes (Control subscale: r = 0.44; Importance subscale: r = 0.44) and social support (Control subscale: r = 0.49; Importance subscale: r = 0.41). CONCLUSIONS: We found evidence of convergent validity between the Enfranchisement scale and measures of participation, and discriminant validity between the Enfranchisement scale and measures of disability-related impairments. The analyses also revealed the importance of the environment to enfranchisement outcomes.
Assuntos
Pessoas com Deficiência , Traumatismos da Medula Espinal , Reabilitação do Acidente Vascular Cerebral , Adulto , Participação da Comunidade , Estudos Transversais , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: This study determined the sensitivity to change of the Enfranchisement scale of the Community Participation Indicators in people with stroke. DATA SOURCES: We analyzed data from two studies of participants with stroke: an intervention study and an observational study. MAIN MEASURES: The Enfranchisement Scale contains two subscales: the Importance subscale (feeling valued by and contributing to the community; range: 14-70) and the Control subscale (choice and control: range: 13-64). DATA ANALYSIS: Assessments were administered 6 months apart. We calculated minimum detectable change and minimal clinically important difference. RESULTS: The Control subscale analysis included 121 participants with a mean age of 61.2 and mild-moderate disability (Functional Independence Measure, mean = 97.9, SD = 24.7). On the Control subscale, participants had a mean baseline score of 51.4 (SD = 10.4), and little mean change (1.3) but with large variation in change scores (SD = 11.5). We found a minimum detectable change of 9 and a minimum clinically important difference of 6. The Importance subscale analysis included 116 participants with a mean age of 60.7 and mild-moderate disability (Functional Independence Measure, mean = 98.9, SD = 24.5). On the Importance subscale, participants had a mean baseline score of 44.1 (SD = 12.7), and again demonstrated little mean change (1.08) but with large variation in change scores (SD = 12.6). We found a minimum detectable change of 11 and a minimum clinically important difference 7. CONCLUSIONS: The Control subscale required 9 points of change, and the Importance subscale required 11 points of change, to achieve statistically and clinically meaningful changes, suggesting adequate sensitivity to change.
Assuntos
Pessoas com Deficiência , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Participação da Comunidade , Humanos , Pessoa de Meia-Idade , Diferença Mínima Clinicamente ImportanteRESUMO
OBJECTIVE: To characterize the intervention elements associated with improvements in activity and participation outcomes for adults with brain injury. DATA SOURCES: PubMed and PsycINFO/Ovid. STUDY SELECTION: We included RCTs that examined interventions for adults with acquired brain injury with an activity or participation outcome measure. DATA EXTRACTION: We classified intervention elements and extracted effect sizes. We examined patterns of effect sizes associated with each intervention element based on time of follow-up and level of outcome (home versus community). DATA SYNTHESIS: Thirty-nine articles were included. Outcomes focused on the performance of home and community activities. There was wide variation in effect sizes across all intervention elements, as well as by time and by outcome level (home versus community). Metacognitive interventions and daily life skills interventions showed the greatest promise for improving performance of home and community activities. Additionally, cognitive training interventions may play a role in improving home activity performance and social skills training interventions may play a role in community activity performance. Physical activity interventions showed the least promise for improving home and community activity performance. CONCLUSION: This study highlights the importance of interventions that incorporate explicit strategies and task-specific training, rather than only addressing specific injury-related impairments.
Assuntos
Lesões Encefálicas , Adulto , Lesões Encefálicas/terapia , Exercício Físico , Humanos , Avaliação de Resultados em Cuidados de SaúdeRESUMO
OBJECTIVES: To develop item banks of social attitude barriers and facilitators to participation and validate them with established instruments. DESIGN: We used the Rasch model to identify misfitting items and rating scale problems, calibrate items, and develop KeyForms and short forms. Correlations between the Social Attitude Barriers and Facilitators item banks with the Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health domain and National Institutes of Health Toolbox Emotional Battery Social Relationships domain were computed to evaluate convergent and divergent validity. SETTING: Community-dwelling individuals traveled to 3 academic medical centers for testing. PARTICIPANTS: Participants (N=558) who had a primary impairment of stroke, spinal cord injury, or traumatic brain injury (mean age, 47.0±16.0y) completed 31 social attitude facilitator and 51 barrier items using a 5-point rating scale. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Item banks to measure social attitude barriers and facilitators for individuals with disabilities. RESULTS: After combining the "never" and "rarely" rating scale categories, 30 Facilitator items fit the Rasch model and demonstrated person reliability of 0.93. After collapsing the "never" and "rarely" rating scale categories, 45 Barrier items fit the Rasch model and demonstrated person reliability of 0.95. Ceiling and floor effects were negligible for both item banks. Facilitators and Barriers item banks were negatively correlated, and these banks were moderately correlated with PROMIS and Toolbox measures, providing evidence of convergent and divergent validity. CONCLUSIONS: Findings support the reliability and validity of the Social Attitude Facilitators and Barriers item banks. These item banks allow investigators and clinicians to measure perceptions of social attitudes, providing information that can guide individual interventions to reduce barriers and promote facilitators. Moderate correlations between the Social Attitude banks and PROMIS and Toolbox variables provide support for the measurement and theory of environmental influences on social health and participation.
Assuntos
Atitude Frente a Saúde , Pessoas com Deficiência/psicologia , Participação Social , Inquéritos e Questionários/normas , Adulto , Feminino , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , PsicometriaRESUMO
IMPORTANCE: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. OBJECTIVE: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. DESIGN: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. SETTING: ADA-PARC community partners across the United States. PARTICIPANTS: One hundred fifty-three adults with disabilities. OUTCOMES AND MEASURES: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. RESULTS: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. CONCLUSIONS AND RELEVANCE: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. WHAT THIS ARTICLE ADDS: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.
Assuntos
Pessoas com Deficiência , Terapia Ocupacional , Adulto , Participação da Comunidade , Humanos , Institucionalização , Organizações , Estados UnidosRESUMO
As people with intellectual and developmental disabilities (I/DD) age, it is important that I/DD agencies are prepared to support healthy ageing in homes and in communities. This study explored supports and barriers to sustaining community-based health and participation initiatives (CBHPI) for people ageing with I/DD living in group homes managed by agencies. The study utilized interviews and photovoice with 70 participants-35 individuals with I/DD and 35 management/direct support agency staff. Data were analysed through content analysis and triangulation of data where five themes emerged: Agency values and policies related to healthy ageing; resources and staff competencies; communication between management and staff; community/university partnerships; and peer relations. Findings show that I/DD agencies and people with I/DD value CBHPI, but they find them difficult to sustain due to limited resources and lack of training specific to ageing with I/DD. Conducting system-level research within I/DD agencies to include first-person accounts of people with I/DD, staff and management provides insight on how to effectively support the needs of people with I/DD to improve their health and community participation as they age.
Assuntos
Envelhecimento , Participação da Comunidade , Deficiências do Desenvolvimento , Lares para Grupos , Promoção da Saúde , Envelhecimento Saudável , Deficiência Intelectual , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Política Organizacional , Organizações sem Fins Lucrativos , Avaliação de Programas e Projetos de Saúde , Pesquisa QualitativaRESUMO
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.
Assuntos
Lesões Encefálicas Traumáticas/etiologia , Meio Ambiente , Qualidade de Vida/psicologia , Traumatismos da Medula Espinal/etiologia , Acidente Vascular Cerebral/etiologia , Adulto , Lesões Encefálicas Traumáticas/patologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Traumatismos da Medula Espinal/patologia , Acidente Vascular Cerebral/patologiaRESUMO
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.
Assuntos
Serviços de Saúde Comunitária/organização & administração , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/reabilitação , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/organização & administração , Qualidade de Vida , Serviço Social/organização & administração , Adulto , Idoso , Acessibilidade Arquitetônica/normas , Lesões Encefálicas/reabilitação , Serviços de Saúde Comunitária/normas , Estudos Transversais , Bases de Dados Factuais , Análise Fatorial , Acessibilidade aos Serviços de Saúde/normas , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/normas , Pessoa de Meia-Idade , Satisfação do Paciente , Políticas , Psicometria , Pesquisa Qualitativa , Participação Social , Apoio Social , Serviço Social/normas , Fatores Socioeconômicos , Traumatismos da Medula Espinal/reabilitação , Reabilitação do Acidente Vascular CerebralRESUMO
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.
Assuntos
Serviços de Saúde Comunitária/organização & administração , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/reabilitação , Meio Ambiente , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/organização & administração , Serviço Social/organização & administração , Adulto , Idoso , Lesões Encefálicas/psicologia , Lesões Encefálicas/reabilitação , Serviços de Saúde Comunitária/normas , Estudos Transversais , Feminino , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/normas , Masculino , Pessoa de Meia-Idade , Psicometria , Qualidade de Vida , Meio Social , Serviço Social/normas , Fatores Socioeconômicos , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/reabilitação , Reabilitação do Acidente Vascular Cerebral/psicologiaRESUMO
Community-based health initiatives (CBHI) play an important role in maintaining the health, function and participation of people with intellectual/developmental disabilities (I/DD) living in the community. However, implementation and long-term sustainability of CBHI is challenging. The Promoting Action on Research Implementation in Health Services (PARiHS) is a knowledge translation (KT) framework that is particularly relevant to intellectual/developmental disabilities research as it identifies the barriers and facilitators of implementation and action plans. This framework provides a foundation for understanding how KT can be used to aid the implementation and sustainability of CBHI for people with intellectual/developmental disabilities. The following study explores how KT - specifically the PARiHS framework - can be used to help sustain CBHI for people with intellectual/developmental disabilities.
Assuntos
Serviços Comunitários de Saúde Mental/normas , Deficiências do Desenvolvimento/reabilitação , Conhecimentos, Atitudes e Prática em Saúde , Pesquisa sobre Serviços de Saúde/métodos , Deficiência Intelectual/reabilitação , Pesquisa Translacional Biomédica , Pesquisa sobre Serviços de Saúde/normas , HumanosRESUMO
OBJECTIVE: To develop and evaluate the psychometric properties of an item set measuring economic quality of life (QOL) for use by individuals with disabilities. DESIGN: Survey. SETTING: Community settings. PARTICIPANTS: Individuals with disabilities completed individual interviews (n=64), participated in focus groups (n=172), and completed cognitive interviews (n=15). Inclusion criteria included the following: traumatic brain injury, spinal cord injury, or stroke; age ≥18 years; and ability to read and speak English. We calibrated the items with 305 former rehabilitation inpatients. INTERVENTIONS: None. MAIN OUTCOME MEASURE: Economic QOL. RESULTS: Confirmatory factor analysis showed acceptable fit indices (comparative fit index=.939, root mean square error of approximation=.089) for the 37 items. However, 3 items demonstrated local item dependence. Dropping 9 items improved fit and obviated local dependence. Rasch analysis of the remaining 28 items yielded a person reliability of .92, suggesting that these items discriminate about 4 economic QOL levels. CONCLUSIONS: We developed a 28-item bank that measures economic aspects of QOL. Preliminary confirmatory factor analysis and Rasch analysis results support the psychometric properties of this new measure. It fills a gap in health-related QOL measurement by describing the economic barriers and facilitators of community participation. Future development will make the item bank available as a computer adaptive test.
Assuntos
Pessoas com Deficiência/psicologia , Adulto , Lesões Encefálicas/economia , Lesões Encefálicas/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Traumatismos da Medula Espinal/economia , Traumatismos da Medula Espinal/psicologia , Acidente Vascular Cerebral/economia , Acidente Vascular Cerebral/psicologiaRESUMO
OBJECTIVE: To describe the development of new self-report measures of social attitudes that act as environmental facilitators or barriers to the participation of people with disabilities in society. DESIGN: A mixed-methods approach included a literature review; item classification, selection, and writing; cognitive interviews and field testing of participants with spinal cord injury (SCI), traumatic brain injury (TBI), or stroke; and rating scale analysis to evaluate initial psychometric properties. SETTING: General community. PARTICIPANTS: Individuals with SCI, TBI, or stroke participated in cognitive interviews (n=9); community residents with those same conditions participated in field testing (n=305). INTERVENTIONS: None. MAIN OUTCOME MEASURE: Self-report item pool of social attitudes that act as facilitators or barriers to people with disabilities participating in society. RESULTS: An interdisciplinary team of experts classified 710 existing social environment items into content areas and wrote 32 new items. Additional qualitative item review included item refinement and winnowing of the pool prior to cognitive interviews and field testing of 82 items. Field test data indicated that the pool satisfies a 1-parameter item response theory measurement model and would be appropriate for development into a calibrated item bank. CONCLUSIONS: Our qualitative item review process supported a social environment conceptual framework that includes both social support and social attitudes. We developed a new social attitudes self-report item pool. Calibration testing of that pool is underway with a larger sample to develop a social attitudes item bank for persons with disabilities.
Assuntos
Pessoas com Deficiência/psicologia , Meio Ambiente , Autorrelato , Meio Social , Lesões Encefálicas/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Psicometria , Apoio Social , Fatores Socioeconômicos , Traumatismos da Medula Espinal/psicologia , Acidente Vascular Cerebral/psicologiaRESUMO
The ascendance of the World Health Organization's International Classification of Functioning, Disability and Heath (ICF) as the global standard for describing and characterizing aspects of disability has refocused attention on the role that environmental factors (EFs) have on the health and participation of people with disabilities, both as individuals and as a group. There has been a rise in the development of instruments designed to measure EFs alone and in relation to participation. Some instrument developers have used the ICF as a theoretical base for instrument development and to substantiate content validity claims. We contend that this is a misapplication of the ICF. There is a need to step back and reexamine the role that environmental theories can play in developing a conceptually driven approach to measuring the interaction between EFs and participation. For this review, we draw on the fields of social, community, and developmental psychology; disability studies; gerontology; public health; and rehabilitation. We discuss different approaches to the measurement of EFs. We suggest that given the complex nature of EFs and their influence on participation, there is a need for a fresh approach to EF measurement. The thoughtful application of theories and the use of advanced psychometric, measurement, and e-technologies and data visualization methods may enable researchers and clinicians to better quantify, document, and communicate the dynamic interrelationship between EFs and participation and health outcomes for people with disabilities at the individual, group, and population levels.
Assuntos
Avaliação da Deficiência , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/reabilitação , Meio Ambiente , Especialidade de Fisioterapia/organização & administração , Participação Social , Sistemas de Informação Geográfica , Nível de Saúde , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Psicometria , Capital Social , Determinantes Sociais da SaúdeRESUMO
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 (N=201) 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.
Assuntos
Pessoas com Deficiência/psicologia , Meio Ambiente , Qualidade de Vida , Participação Social , Acessibilidade Arquitetônica , Pessoas com Deficiência/reabilitação , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Pesquisa Qualitativa , Características de Residência , Tecnologia Assistiva , Apoio Social , Meios de Transporte , Estados UnidosRESUMO
OBJECTIVES: To describe methods used in operationalizing environmental factors; to describe the results of a research project to develop measures of environmental factors that affect participation; and to define an initial item set of facilitators and barriers to participation after stroke, traumatic brain injury, and spinal cord injury. DESIGN: Instrument development included an extensive literature review, item classification and selection, item writing, and cognitive testing following the approach of the Patient-Reported Outcomes Measurement Information System. SETTING: Community. PARTICIPANTS: Content area and outcome measurement experts (n=10) contributed to instrument development; individuals (n=200) with the target conditions participated in focus groups and in cognitive testing (n=15). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Environmental factor items were categorized in 6 domains: assistive technology; built and natural environment; social environment; services, systems, and policies; access to information and technology; and economic quality of life. RESULTS: We binned 2273 items across the 6 domains, winnowed this pool to 291 items for cognitive testing, and recommended 274 items for pilot data collection. CONCLUSIONS: Five of the 6 domains correspond closely to the International Classification of Functioning, Disability and Health taxonomy of environmental factors; the sixth domain, economic quality of life, reflects an important construct that reflects financial resources that affect participation. Testing with a new and larger sample is underway to evaluate reliability, validity, and sensitivity.
Assuntos
Lesões Encefálicas/psicologia , Pessoas com Deficiência/psicologia , Meio Ambiente , Traumatismos da Medula Espinal/psicologia , Acidente Vascular Cerebral/psicologia , Lesões Encefálicas/reabilitação , Avaliação da Deficiência , Pessoas com Deficiência/reabilitação , Grupos Focais , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Políticas , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Meio Social , Traumatismos da Medula Espinal/reabilitação , Reabilitação do Acidente Vascular Cerebral , Inquéritos e QuestionáriosRESUMO
Trends in policy, practice, and research point to the need for a community-engaged Scholarship of Practice (SOP) model that can be used to inform the development of occupational therapy practitioners, educators, and researchers. This article describes a community-engaged SOP model, the evidence justifying the need for such a model, and strategies to effectively create community-engaged practitioners, educators and career scientists within occupational therapy. We highlight several examples of community-based participatory research to further inform this model, and in turn, translate this knowledge back to communities for action and systems change that can affect the lives of people with disabilities and the communities in which they seek to live and participate long term.