R1.1: Consumer Needs Assessment

Progress

Stage 1: Delphi Study

The Delphi Study for R1.1, an iterative process involving over 20 consumers that was used to help fine-tune the national survey, was completed in Year 1 of the RERC (summer 2003).

Stage 2: National Survey

Approval was obtained from the IRBs at Western University of Health Sciences and Marquette University for the R1.1 National Survey and for the process of recruiting participants.

The National Survey was posted to an Internet web site as an online form and also as a downloadable document in four formats: as a Word form and as a text document (to be completed on computer and submitted via e-mail), and in PDF and large-print PDF (to be printed, written on, and submitted via surface mail). Hard copies could also be requested by e-mail or telephone, which were mailed out accompanied by postage-paid return envelops, or the survey could be completed over the phone with one of the researchers.

Participants were initially recruited through an invitational flyer, beginning in August 2003. The flyer was distributed via e-mail to a large number and range of disability-oriented list serves and personal networks. These included independent living centers, organizations, support groups, directories, Internet chat rooms, etc. The message included a request that recipients forward the message to anyone they thought might be interested in participating.

The flyer was sent to the members of the RERC’s National Advisory Council for them to distribute as they saw fit. It was also distributed at several national and local conferences, primarily meetings that were disability-focused, such as American Public Health Association (APHA), National Council on Independent Living (NCIL), RespectAbility, etc. Announcements based on the content of the flyer were published in several newsletters, such as Muscular Dystrophy Association (MDA), United Cerebral Palsy (UCP), etc.

As seen in the list of publications, papers on the preliminary results of this national survey were presented in 2004 at the annual RESNA conference in Orlando FL in June 2004, the Academy Health Annual Research Meeting in June in San Diego, and Human Factors and Ergonomics (HFES) conference in New Orleans LA in September 2004. These papers disseminated results from the preliminary analysis of over 300 respondents.

The study was closed in July 2004, with 457 individuals having created accounts on the website or contacted the investigators to complete the survey in an alternative format. Of these 457 prospective subjects, 408 participants provided usable data. Participants ranged in age from the 18-25 range to the over 75 years of age category. The majority of participants were between the ages of 26 and 64. The majority of participants were female (66.1), Caucasian (90.2%), had at least a bachelor’s degree (59.1%), worked full time (79.9%), and used at least one form of assistive technology. The sample represented a wide variety of sensory and physical disabilities, and a vast array of medical diagnoses.

Overview of Results

• Categories with 30 or more: 156 with orthopedic impairment, 130 with visual impairment, 119 with chronic pain, 103 with arthritis, 95 with high blood pressure, 92 with paralysis, 87 with spinal cord injury, 69 with a degree of depression, 62 with hearing impairment, 45 frequent anxiety, 36 with multiple scherolis, 33 with latex allergies, 31 with muscular dystrophy, 30 with cerebral palsy, 30 with speech.
• Categories with 65 or more functional limitations: reach 197, grasp 178, pinch 128, hot-cold 113, sharp-dull 103, twisting-wrist 98, tremor 80, push-buttons 69

All participants were asked to indicate their level of experience with each of the 15 categories of equipment. If they had experience with the equipment, they were asked to rate their degree of difficulty with using the equipment on a scale of "none" (0) to "impossible to use" (4).

Tables are also available that break down all of the equipment categories (exam tables, exam chairs, dental equipment, eye exam, hearing test, x-ray, cardiac stress, pulmonary function, rehab-exercise euqipment, medicine administration, oxygen equipment, weight scales, monitoring equipment, communication aids, mobility aids) as a function of disability and functional limitations.

When all types of disabilities and diagnoses were analyzed together, the top four categories of medical equipment that participants indicated they had moderate or greater difficulty using were exam tables (75.0%), x-ray equipment (68.0%), exercise and rehabilitation equipment (55.3%), and weight scales (53.1%). When each category (n=39) of disability or diagnosis was examined separately, all categories except for individuals identifying themselves as having cerebral palsy identified exam tables as their most difficult type of equipment to use.

Results are being disseminated through a publication that has been submitted and submittions to journals that are in preparation.

Stage 3: Focus Groups

IRB approval was obtained from Marquette University for focus groups about dental equipment, which started in July 2004. IRB approval for focus groups about other types of equipment has been granted, and the next four focus groups will occur during the Spring 2005, at the University of California at Berkeley and Western University, respectively.