Joy Hammel

What does participation mean? An insider perspective from people with disabilities

Purpose. Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Method. Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites. Results. Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership. Conclusions. No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for ‘full’ participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.

Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities

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.

Measurement of participation: Intersecting person, task, and environment

The goals of this article are to describe participation as a transaction and issues involved in measuring and intervening using this transactional approach; describe ecologic and systems-based theoretic approaches for conceptualizing person-task-environment transactions; and illustrate examples of an exploratory strategy, radar plots, as a clinical tool for rehabilitation professionals to show this interaction and use it to inform participation-focused interventions with people with disabilities in rehabilitation settings. Participation necessarily occurs at the intersection of what the person can do, wants to do, has the opportunity to do, and is not prevented from doing. It is a transaction that occurs at the nexus of the person-task-environment. Measurement of participation should capture this transactive nature. Radar plots are part of a group of graphic displays frequently referred to as exploratory data analysis. In situations in which theory is not well developed, exploratory techniques such as radar plots may hold promise as ways to explore better the relationship among variables. This article describes strengths and limitations of radar plots and presents an example with data from the Community Participation Database.

Examining Barriers and Supports to Community Living and Participation After a Stroke from a Participatory Action Research Approach

Abstract This participatory action research study focused on identifying community participation goals, barriers, and supports/strategies in partnership with people who have experienced a stroke. Goals demonstrate that participation is more than activity performance in context; instead, it relates to “being a part of” the community and having access to participation opportunities and supports. Results of community site audits from the first 20 participants document environmental (physical, cognitive, social) and system level barriers, as well as effective strategies for promoting participation via environmental modification and systems level changes. A consumer-directed, Web-based tool for documenting participation barriers and sharing strategies is discussed.

The impact of assistive technology and environmental interventions on function and living situation status with people who are ageing with developmental disabilities

Purpose : A longitudinal study of 109 people with developmental disabilities, age 35 and older, was done to study the additive impact of mid to later life assistive technology and environmental interventions (AT-EI) on function and living situation status. All subjects were trying to transition out of institutional settings to community settings. Method : Functional status were measured at two times (Time 1 baseline and Time 2 an average of three years post intervention) on 32 functional activities under two conditions: without AT (person only) and with AT (environment adjusted). Rasch analysis was performed to convert ordinal functional scores to equal interval measures, with 95% confidence intervals computed to compare differences in function, with and without AT, across time. Results : Results indicated that over 70% of subjects had better function with AT versus without AT at both time points. Over time, function did not change when rated without AT; however, when rated with AT, 13.6% had better function at Time 2. Subjects living in the community at Time 2 had significantly higher functional scores as compared to subjects in institutions, regardless of AT condition. Additional quantitative and qualitative data on AT-EI use, needs, and barriers and supports to its integration into everyday activities are reported. Conclusions : Results suggest a beneficial impact of later life AT-EI assessment and programming for people who are ageing with developmental disabilities, and qualitatively point to the influence of the social and physical living context upon AT-EI use and relationship to community living decisions long term.

Educating Scholars of Practice: An Approach to Preparing Tomorrow's Researchers

SUMMARY Occupational therapys scholarship too often fails to result in a cumulative body of knowledge that is directly relevant to practice, and links theory and research to practice. This problem has its basis in how therapists are prepared to make scholarly contributions to the field. This article describes an educational strategy for preparing scholars of practice whose work will contribute to building a knowledge base that examines and enhances practice. The strategy is based upon social learning theory, employs principles of situated learning and cognitive apprenticeship, and involves students as members of an ongoing community of scholars. Steps to and benefits of creating this scholarly community and implementing this educational strategy are discussed.

Theoretical Foundations for the Measurement of Environmental Factors and Their Impact on Participation Among People With Disabilities

The ascendance of the World Health Organizations 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.

Measuring Participation Enfranchisement

OBJECTIVE To reflect the perspectives of rehabilitation stakeholders in a measure of participation enfranchisement that can be used by people with and without disabilities. DESIGN Survey. SETTING Community settings. PARTICIPANTS We pilot-tested a draft instrument with 326 adults who had sustained stroke, spinal cord injury, traumatic brain injury, or other disabling condition, as well as a general population sample. We administered a revised version of the instrument to a statewide sample drawn from the 2006 Colorado Behavioral Risk Factors Surveillance System that included persons with (N=461) and without (N=451) self-identified activity limitations. INTERVENTIONS None. MAIN OUTCOME MEASURE Participation enfranchisement. RESULTS We used multidimensional scaling, exploratory factor analysis (EFA) and confirmatory factor analysis (CFA), followed by rating scale analysis to evaluate the psychometric properties of the instrument. EFA identified 3 participation enfranchisement factors that describe perceived choice and control, contributing to ones community, and feeling valued; the factors were supported marginally by CFA. Rating scale analysis revealed marginal person separation and no misfitting items. CONCLUSIONS Participation enfranchisement constitutes a new, previously unmeasured aspect of participation-one that addresses subjective perceptions rather than objective performance-with items that are clearly distinct from more generalized satisfaction with participation. The 19 enfranchisement items describe aspects of participation that may prove useful in characterizing longer-term rehabilitation outcomes.

Environmental factors item development for persons with stroke, traumatic brain injury, and spinal cord injury.

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.

Measuring Enfranchisement: Importance of and Control Over Participation by People With Disabilities

OBJECTIVE To evaluate the psychometric properties and validity of an expanded set of community enfranchisement items that are suitable for computer adaptive testing. DESIGN Survey. SETTING Community setting. PARTICIPANTS Individuals with disabilities (N=1163) were recruited from an online panel generation company (51%), former rehabilitation inpatients (18%), disability community organizations (13%), a registry of rehabilitation patients (10%), and Traumatic Brain Injury and Spinal Cord Injury Model System facilities (8%). Inclusion criteria were a self-identified disability, aged ≥18 years, and the ability to read and speak English. INTERVENTIONS None. MAIN OUTCOME MEASURE Community enfranchisement. RESULTS Exploratory and confirmatory factor analyses of the 48 enfranchisement items suggested 2 distinct subsets of items: (1) importance of participation and (2) control over participation. Principal components analysis of the residuals suggested that the 2 item sets are unidimensional. Rating scale analysis provided evidence that the 2 item sets fit the Rasch model. Importance and control were moderately correlated with each other and with disability severity. CONCLUSIONS Importance of participation and control over participation define 2 distinct sets of participation enfranchisement. Preliminary evidence supports their validity.