Participation Measurement Systems Development and Training: Preliminary Study Design

Over the past eight years, two assessment systems have been developed at Washington University that meet the description in the National Institute on Disability Rehabilitation Research (NIDRR) long-range plan for measurements needed for assessing participation by people with disabilities in major life activities. These include a wide range of activities that measure multiple dimensions of participation; address specific physical or social barriers in a variety of settings; incorporate facilitators that enhance participation; focus on optimal levels of participation among groups individuals with disabilities; examine participation characteristics and environmental factors for specific subgroups of people with disabilities; evaluate strategies for services, interventions, products and modifications to the built and social environment; and identify and evaluate effective services and policies.  

Measurement of participation is essential to fulfilling NIDRR’s goals as exemplified by the following:  “By bolstering understanding of the complex meaning of participation and employing new and improved measures that adequately reflect this concept, NIDRR will build a stronger foundation of research-based knowledge upon which participation-focused services and policies can be based.” (NIDRR LRP, 2006, p. 39)

Proposed project activities. The activities included in R-1 are described in two parts, Part 1: Individual Participation Assessment (CFP modifications and additions), and Part 2: Objective and Subjective Community Assessment (CAS modifications and additions).

PHASE 1
Individual Participation Assessment
The first assessment system provides information on an individual’s subjective view of his or her participation in 20 activities in the context of their home and community. This system includes three measures: Characteristics Of Respondents (CORE); Facilitators and Barriers to Participation Survey by People With Mobility limitations (FABS/M); and PARTicipation Survey in Major Life Activities by People with Mobility Limitations (PARTS/M). Using the CORE, FABS/M and PARTS/M together constitutes an assessment system that will be referred to as the CFP (CORE/FABS/PARTS). The CFP has been used to assess differences in participation by power and manual wheelchair users (Chaves, Boninger, Cooper, Fitzgerald, Gray, & Cooper, 2004) and changes in satisfaction with personal assistant services (Schopp, Clark, Hagglund, Stout, Gray, & Boninger, 2006). Thus, the CFP has been shown to be useful for measuring the effectiveness of interventions aimed at improving participation of people with mobility impairments and limitations.

These studies did reveal that the CFP does not include the detailed questions that may be needed in community-based research projects that study specific environmental factors and a variety of impairment conditions. Revising the CFP measurement component surveys is needed for broader application to other impairment conditions and to improve the detail of the items included.

Study Procedures – CFP Revisions
Item revision process.In RRTC/MICL years 1 and 2, changes will be made in the CFP measurement system. More detailed questions will be added to the Characteristics of the Respondents (CORE) that include deaf, blind and other conditions. The questions on assistive technologies used by survey respondents will be expanded beyond those used by people with mobility impairments. Details of environmental Facilitators and Barriers to Participation Survey by People With Mobility Limitations (FABS/M) will be modified. Additional aspects of PARTicipation Survey in Major Life Activities by People With Mobility limitations (PARTS/M) will be incorporated. The improvement in the details of the CFP system provides a more inclusive measurement of community participation than previous studies, which have examined one intervention for changes in a few domains of participation or activity. Changes in the CFP measures will be made using computer-assisted web-based survey technology. Questions will be layered in a manner that allows the survey respondent to avoid having to answer nonapplicable questions.

Reliability Revision study (R-1.1).The revised CFP measures will be tested for reliability. During the second year, the revised CFP measurement system will be reviewed by Paraquad (a nationally recognized center for independent living) staff for ease of use as an outcome measurement tool for use in the programs offered by Paraquad such as personal assistance services, adolescent and youth advocacy, peer counseling, provision of assistive technologies, health education, exercise and fitness, employment and parenting. Paraquad will use the CFP system in those programs where implementation is feasible. Data collected from such implementations will be analyzed during RRTC/MICL years 4 and 5.
 
Study Procedures – Expansion of the CFP System to Measure Community Participation by People Who Are Deaf or Blind

Development of PARTS/Deaf and FABS/Deaf. The CFP system was developed for use with people with lower limb impairments who have mobility limitations. The framework, items, format, and scoring used in the CFP system will be expanded to include people who are deaf or blind. This will be accomplished using the same types of qualitative and quantitative methods used to construct the first version of the CFP. Key informant interviews will be held with well- informed individuals who are deaf who work for Deaf Way, an interpreter program at Paraquad, and people associated with the Central Institute for the Deaf. A literature review of existing community participation measures found no results. Two focus groups (one oral and one ASL) will be conducted. Thematic analysis will be completed on the transcripts using a process of analytic coding (Krueger, 1994, 1997) until common events and themes emerge. Items based on the focus group themes will be developed. A consultant (Gale Rice, Ph.D.) and the key informants will review these items for inclusion into the CFP system. A CFP/D (Deaf) version will be tested for reliability by 50 deaf people. Because the Central Institute for the Deaf is located in St. Louis and the Paraquad Deaf Way program serves hundreds of deaf people each year, recruiting study participants should be feasible.

Development of PARTS/Blind and FABS/Blind. To develop a CFP version for use with people who are blind, the methods described above for item development will be used. A member of the Paraquad Board and director of the Missouri State Independent Living (association), Sherri Keller, will provide expert consultation during the development of the CFP/B (Blind). Keller will advise the research staff on recruiting participants who are blind. Paraquad has also agreed to assist in recruitment of participants.

Reliability Test of the FABS/Deaf and PARTS/Blind
During RRTC/MICL year 4 the revised CFP/D and CPF/B measurement systems will be reviewed by Paraquad staff for ease of use as an outcome measurement tool for use in the programs offered by Paraquad: Deaf Way, peer counseling, provision of assistive technologies, health education, exercise and fitness, employment and parenting.

Study procedures – CFP Data Analysis and Publications
The CFP data collected in the intervention study on enhancing community participation (R-4, years 3-5) will be analyzed in RRTC/MICL years 4 and 5. In addition, data from other RRTC/MILC studies (R-5 and R-6), Paraquad programs, and other community-based programs that use the CFP measurement system will be collected and analyzed during this time period.

PHASE 2
Phase 2: Objective and Subjective Community Assessment
The CRI, CHEC, and CPPRS will be modified during the first and second years of the RRTC/MILC. The process for collecting the information on essential services to people with disabilities (Community Resource Index) will be put into a computer-assisted survey that is web-based. The revised CRI will be referred to as CACRI (Computer Assisted Community Resource Index).

The CHEC will modified by adding specific building/site features for each of the 17 different sites (e.g., health care, grocery store, religious sites, sports arena) that are also included in the CPPRS. These revisions will be completed by occupational therapy doctoral students. These students will test their capacity to achieve high intrarater reliability and to get good interrater reliability. Reliability testing of the revised CHEC measures will be accomplished as described below:

The CPPRS will add selected site access features that are the same as those contained in the CHEC. Additional items will be added to the CPPRS that indicate the level of receptivity at each of the 17 sites. Community receptivity is defined by Bricout & Gray as “a concept that links the physical and social environment in relation to community readiness to support the public participation of persons with a disability” (2006). Community receptivity refers to the willingness, values, and knowledge of people in the community that facilitate the participation of people with disabilities in valued activities and events, including social events, religious worship, employment, entertainment, and travel outside the home (2006). Survey items have been developed to examine the perceptions of people with mobility impairments’ perceptions of how receptive members of their communities are toward them (Bricout & Gray, 2006).

Additional items will be included that are based on the work of Weasel and Zaidman (2003) that classified community responses into several factors including Imputed Functional Limitations (over generalization of deficits), Generalized Rejection (ignoring and avoidance), Inferred Emotional Consequences (assumed problematic behavioral or emotional co-morbidity with visible impairment), Authoritarian Virtuousness (decision making without input from the person with an impairment), Distressed Identification (anxiety responses when communicating), and Interaction Strain (rude comments or quick dismissal). These changes will allow comparison of the objective CHEC and the subjective CPPRS for sites in the community. The reliabilities of the additions will be tested in RRTC/MICL years 1 and 2. Further, the large sample of people with disabilities who have participated in earlier studies and the large number of people served by Paraquad will allow us rapid access to a sufficient sample to use the CPPRS at the selected community sites. In addition, Paraquad will provide transportation to and from the sites. Finally, the measures are in computer-assisted and web versions that can be modified rapidly and that take less time to complete than paper versions.

In RRTC/MICL year 5, the ECP-1 project will co-host with Paraquad a Summer Institute that will address how the FABS and PARTS can be used to assess outcomes of community-based organizations that provide interventions that have a goal of improving community participation of the people they serve. Space will be provided at Paraquad’s audiovisual accessible auditorium and class room for presentation of the measures. Experiential learning will take place at Paraquad where the FABS and PARTS have been used. Occupational therapy students from Washington University and Paraquad personnel will assist in the instruction of how to implement the measurement system into existing programs. Paraquad will provide accessible transportation to and from hotels and restaurants. The Summer Institute will be open to a maximum of 50 people. Attendees will be drawn from a national pool. A limited number of scholarships will be awarded on a competitive basis.

References
Bricout, J. C., & Gray, D. B. (2006). Community receptivity: The ecology of disabled persons’ participation in the physical, political and social environments, Scandinavian Journal of Disability Research, 8(1), 1-21.

Chaves, E. S., Boninger, M. L., Cooper, R., Fitzgerald, S. G., Gray, D. B., & Cooper, R. A. (2004). Assessing the influence of wheelchair technology on perception of participation in spinal cord injury. Archives of Physical Medicine and Rehabilitation, (85), 1854-1858.
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Krueger, R. A. (1994). Focus groups: A practical guide for research. Thousand Oaks, CA: Sage Publications.

Krueger, R. A. (1997). Analyzing and reporting focus group results. London: Sage Publications.
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Schopp, L. H., Clark , M. J., Hagglund, K. J., Stout, B. J., Gray, D. B., & Boninger, M. L. (2006). Life activities among individuals with spinal cord injury living in the community: Perceived choice and perceived barriers. Rehabilitation Psychology. Manuscript accepted for publication.

Weisel, A. & Zaidman, A. (2003). Attitudes of secular and religious Israeli adolescents towards persons with disabilities: A multidimensional analysis. International Journal of Disability, Development and Education 50(3), 309-323.