CIL-Requested Independent Living Research Priorities

Background

Consumers, service providers, and policy makers have need for independent living and rehabilitation research information.

Purpose and Anticipated Benefits

Study purpose was to identify high priority research information topics that the independent living field needs to assist individuals with disabilities to live independently.

Who

Research and Training Center on Independent Living at the University of Kansas researchers James Budde, Glen White, Amanda Jay, Vivian Chapman, and Ann Branstetter worked with center for independent living staff to identify research needs.

When

1999-2000

Method

The researchers used the Consumer Concerns Report Method (CCRM) in the form of two surveys to identify desired research information. Initial research topics were identified from field literature, field observations, analysis of previous CCRM survey items, and key informants from the independent living field.

Ten key informants helped identify 80 research topics or items with Likert-type rating scales for importance (0 low to 4 high) then put in a survey with seven overall categories. Each category also had blank lines and instructions to add topics/items. In addition, nine items were included for a “Barriers to Research Information” section. A final section was added to allow importance ranking of the research information categories. The initial survey was sent to 27 key informants. In all, 51 of the 96 items met the criteria of a three rating or above (53%). The second survey with the 51 items with two Likert-type rating scales (0 = low and 4 = high) was used to rate importance and satisfaction for research topics/items/categories and barriers and sent to all centers for independent living in the United States and United States territories. The survey had a 40% return rate. In keeping with CCRM procedures, stakeholders were invited to a “town meeting,” during the 1999 National Conference on Independent Living to discuss the CCRM results.

Results

Information of interest included items in the high importance and low satisfaction category. That category, the survey creators thought, best predicted need. Four items were listed as priorities:

1. Advocacy (for example, accessible, affordable housing; rural areas)
2. Independent living services (for example, transition from schools and nursing homes, transportation, reaching underserved populations)
3. Disability policy
4. Health care (for example, rural health care, Medicaid/Medicare regulations for durable equipment)

Participants also ranked positive image and family intervention research as high priorities.

Products

In addition to the town hall meeting and the use of the priorities to create a taxonomy that would be used to identify and produce research reviews for the online RIIL database. Some other outputs were:

Budde, J., White, G. W., & Nary, D. E.  (1999, October). The Consumer Concerns Report Method outcomes on research information for people with disabilities. The Annual Meeting of the Association for Rural Independent Living Programs, Cincinnati, OH.

Budde, J., White, G., Jay, A., Chapman, V., & Branstetter, A. (2000). Research information priorities for independent living. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.