RESNA 28th Annual Conference - Atlanta, Georgia
Molly Follette Story, M.S.1, Jill M. W. Winters, Ph.D., R.N.2, Brenda Premo, M.B.A.3, June Isaacson Kailes, M.S.W.3, Erin Schwier, O.T.D.3, Jack M. Winters, Ph.D.2
1Human Spectrum Design, L.L.C., 2Marquette University, 3Western University of Health Sciences
The RERC on Accessible Medical Instrumentation is committed to evaluating and developing methods and technologies to increase accessibility and usability of diagnostic, therapeutic, and procedural healthcare equipment and associated assistive technologies, for people with disabilities. This paper outlines the methods employed in conducting focus group meetings with people with disabilities and activity limitations to explore difficulties they have experienced as patients using specific types of medical instrumentation for healthcare. It explains the types of medical equipment that will be discussed, describes the methods that will be employed to structure the focus groups, and discusses potential implications and planned uses of the results.
Medical devices, medical equipment, medical instrumentation, accessibility, usability, universal design, focus group, needs assessment
The Rehabilitation Engineering Research Center (RERC) on Accessible Medical Instrumentation (AMI) is a five-year project that evaluates methods and technologies to increase the accessibility and usability of diagnostic, therapeutic, and procedural healthcare equipment, and associated assistive technologies, for people with disabilities. As part of its research program, the RERC-AMI is analyzing the medical instrumentation needs of three major constituencies: consumers with disabilities, healthcare service providers, and medical instrumentation manufacturers. This paper focuses on the latest stage of the first project, Project R.1.1 / Healthcare Consumer Needs Assessment, which is conducting activities to identify the nature of obstacles related to medical instrumentation (and related policies) that prevent people with disabilities from receiving healthcare services. The first two stages of the project (a Delphi study and a national survey) were described in previous RESNA papers (1, 2, 3); the third stage is outlined below.
The results of the national survey conducted by the RERC-AMI in 2004 yielded information about common types of difficulties experienced by certain subgroups of individuals with disabilities, using particular types of medical instrumentation. In this project, the RERC will conduct sixteen focus groups with selected subgroups of people with disabilities to investigate some of those difficulties in greater depth, in order to understand the problems and structure subsequent research activities.
The results of the national survey indicated that medical equipment is problematic to use for many people. More than half of the people with disabilities and activity limitations who responded to the survey reported having moderate or greater difficulty with examination tables (75.0%), x-ray (imaging) equipment (68.0%), rehabilitation or exercise equipment (55.3%), weight scales (53.1%), and mobility aids (50.2%). The types of equipment that less than half but more than one-third of the respondents reported difficult to use were: examination chairs (49.6%), medication administration equipment (40.9%), dental equipment (38.2%), and eye examination equipment (37.0%). Less than one-third of respondents reported having moderate or greater difficulty with cardiac stress testing equipment (33.0%), oxygen delivery equipment (28.4%), monitoring equipment (27.7%), pulmonary function testing equipment (25.0%), and hearing testing equipment (11.3%).
The results of the national survey were analyzed to decide what type of additional investigations the RERC-AMI should conduct on which types of medical equipment (see Table 1). For the simpler types of equipment about which a large amount of information was gathered through the national survey (examination tables, weight scales, and examination chairs), the researchers chose to proceed directly to conducting usability testing in RERC Project R2. For some types of equipment (rehabilitation or exercise equipment and mobility and communication aids), staff determined that other organizations were better suited to conduct further research and these results were shared with them. For the more complex types of equipment, particularly those with multiple types of devices within the category (e.g., imaging equipment, which includes devices for performing x-rays, MRI scans, CT scans, PET scans, mammograms, bone density scans, ultrasounds, etc.), the staff is conducting focus group meetings to explore difficulties identified by the national survey but not sufficiently well understood.
Type of Equipment |
Percentage* of Participants that Ranked Category as at Least Moderately Difficulty to Use |
Anticipated Follow-up Activity |
|---|---|---|
Examination Tables |
75.0% |
R2 / Usability testing |
X-Ray Equipment |
68.0% |
R1 / Focus groups |
Rehabilitation and Exercise Equipment |
55.3% |
Refer to other organizations |
Weight Scales |
53.1% |
R2 / Usability testing |
Mobility Aids |
50.2% |
Refer to other organizations |
Examination Chairs |
49.6% |
R2 / Usability testing |
Communication Aids |
41.3% |
Refer to other organizations |
Medication Administration Devices |
40.9% |
R1 / Focus groups |
Dental Equipment |
38.2% |
R1 / Focus groups |
Eye Examination Equipment |
37.0% |
R1 / Focus groups |
Cardiac Stress Testing Equipment |
33.0% |
None planned at this time |
Oxygen Delivery Equipment |
28.4% |
None planned at this time |
Monitoring Equipment |
27.7% |
None planned at this time |
Pulmonary Function Testing Equipment |
25.0% |
None planned at this time |
Hearing Testing Equipment |
11.3% |
None planned at this time |
| *Percentages shown as valid percent, i.e., percentage of those with experience with the equipment that rated the equipment as moderately or extremely difficult or impossible to use. | ||
Focus group meetings are being held in three geographic locations, corresponding to the locations of the core staff of the RERC-AMI: the Milwaukee (Wisconsin) area, the greater Los Angeles area, and the San Francisco Bay area (both in California). A detailed protocol ensures that consistent methods are used in all focus groups. The first round of focus groups were held in Milwaukee and explored dental equipment. The next six groups will each focus on the various medical equipment needs of a particular subgroup. Two groups will address the needs of people who are 1) blind or have low vision, and 2) deaf or hard of hearing. Four groups will discuss the needs of people with physical disabilities, in subgroups based on patterns of similar responses to the national survey: people with 3) neuromuscular conditions, 4) stroke or traumatic brain injury or cerebral palsy, 5) chronic pain or rheumatoid arthritis or osteoarthritis, and 6) spinal cord injury or paralysis or amputation. All participants are over the age of 18, and have had experience as well as some difficulty or discomfort using the types of equipment being discussed.
External agencies such as independent living centers, senior centers, and other disability specific community based organizations are assisting in the recruitment and pre-screening of participants. A script provided to these organizations contains explicit instructions on whom to recruit, what to say, and what to do with information received from potential focus group volunteers. A staff member of the RERC-AMI then follows up with each qualified volunteer to explain the focus group meeting in greater detail, answer any questions, confirm eligibility, schedule a time for them to attend a focus group meeting, and determine any alternative format requirements and/or transportation assistance the participant may need. Participants are compensated for their time and reimbursed for reasonable travel expenses.
Each focus group meeting lasts two hours, but is scheduled for three hours to account for arrival activities (such as signing consent forms and partaking in a snack) and departure activities. A detailed question guide is used for all the groups. For the upcoming groups the question guide will cover medical equipment issues relevant to each group, particularly regarding their use of imaging equipment, eye examination equipment, and medication administration equipment. Two facilitators conduct each meeting: one RERC staff member asks the primary questions per the topic guide, and the other staff member asks probing follow-up questions, as needed. The facilitators show the participants photographs of and verbally describe the medical equipment, then ask about people’s experiences using them. Each focus group meeting is recorded on audiotape. The tapes are transcribed verbatim, with participant names replaced with three-digit identifying numbers to protect confidentiality.
As of this writing, focus groups are underway. The majority of the planned focus group meetings will be complete before the June 2005 RESNA conference and results will be reported at that time.
While the scope of the problem of access to and utilization of healthcare services by people with disabilities is vast, one of the major barriers identified is the accessibility and usability of medical instrumentation. Unfortunately, the scope of problems resulting from inaccessible equipment has not been documented. To date, there have been few studies focusing on access, utilization, usability and safety of the medical instrumentation used by and for people with disabilities. Carefully structured national needs assessments are needed in order to (a) improve access to healthcare services and utilization of these services by individuals with disabilities, (b) improve access to healthcare equipment and, consequently, (c) increase employment in healthcare professions by individuals with disabilities as healthcare providers.
The results of the focus groups described in this paper will be used to structure usability testing of some of the types of medical equipment discussed. In RERC-AMI Project R2, subjects with ability characteristics similar to those of the patients and/or healthcare providers who reported having difficulties with specific medical equipment will use that equipment in its normal environmental context. The researchers will observe and videotape the activity, and then conduct structured interviews with the subject(s) about their experiences. In a subsequent development project, the RERC-AMI will develop recommendations for improvements to current equipment and demonstration prototypes of potential future equipment designs. These types of research and development activities must be planned carefully to make most efficient use of the resources of the RERC-AMI, and to maximize the RERC’s impact on the medical device industry and the quality of healthcare that people with disabilities receive.
This work was supported by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, under grant #H133E020729. The opinions contained in this manuscript are those of the authors and do not necessarily reflect those of the Department of Education.
Molly Follette Story, M.S. / Human Spectrum Design, L.L.C.
3717 Deauville Place, Santa Rosa, CA 95403-0980
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E-mail: molly@humanspectrumdesign.com