A survey of demographic traits and assistive device use in a ...
Gaps in AssistiveTechnology for the Blind: Understanding the Needs of the Disabled Amy C. Nau, O.D., F.A.A.O University of Pittsburgh UPMC Eye Center McGowan Institute for Regenerative Medicine Fox Center for Vision Restoration Technology provides endless possibilities for improving the lives of the visually impaired BUT Hitting the mark and actually serving the needs of the blind requires -----that you understand the stakeholders. Who are the Stakeholders?
The blind person Their family or caregivers Clinicians Occupational therapists CMS/government Insurance companies Manufacturers/Vendors Collaborators Background- Sensory Substitution BrainPort Vision Device (Wicab, Inc.) Uses a mini camera that sends an image to an 400 array electro-tactile tongue display KDKA video Studies 2009-present Veterans Study (n=10) First home use Device Feedback Safety Outcome Outcomes Study (n=30) Design and validate outcomes
test PET/MRI FDA Safety Study 70 subjects @ 8 sites, 18 subjects @ UPMC Device safety Behavioral outcomes Telerehabilitation Study (n=10) Remote/virtual low vision rehabiltation Enhancing Device Study (n=20) Hardware upgrades Software upgrades CMU/RI Facial/object recognition Mobility enhancement fMRI SS in Aging fMRI in the acquired blind (n=20) Outcomes Assessments
BaLM BaGA FrACT Visual field (TS) Object recognition Word recognition Depression Screen QoL (VFQ-25 and AI) Obstacle Course
EMR Flash VEP MRI (DTI/tractography) PET Purpose- understand the gaps In conjunction with the CMU QoLT, we were seeking information about how AD for the totally blind could be improved and further developed. Investigate usage patterns of assistive devices (AD) Investigate satisfaction with current AD Provide information regarding perceived deficiencies in AD Provide insight about desired AD attributes and functions Relate this information to demographic status Methods Single center, cross sectional telephone survey 114 mixed, open ended questions Demographics Nature of blindness Education
Health status Exercise status Living situation Adaptation to Blindness Use of other senses Methods to compensate +/- aspects of AD Activities of Daily Living Ability to perform activities as relate to blindness Self reported level of independence Work/Recreation Gaps in Current Technology Ability to adapt to novel AD Wish lists for future AD Subjects
Duration of Blindness Recruited from SS Lab research registry n=76 blind male and female adult subjects (LP or worse bilaterally from any cause) Average age 52.3years (range 20-80 years) congenital; 20.00% <1y ; 2.50% 1-5y; 20.00% >10y; 35.00% 6-9 y; 22.50% Results Educational Attainment
95% at least some high school 25% high school diploma 15% associates degree 12.5% bachelors degree 5% some grad school 7.5% masters degree 10% doctorate degree 60% Braille literate *** Results- Lifestyle 37% live alone Self Reported Health Status % 13% of these receive daily assistance from caregiver
87.% exercise regularly 57.1% exercise outside the home In 2001, 45.4% of adults in the general population of the United States engaged in activities consistent with physical activity recommendations 38.5 33.3 25.6 2.6 excellent very good good fair poor 0 How often do they leave home?
Leaving home (number of times per day) 20% leave < once 40% leave once 40% more than once Degree to which our respondents felt they were able to function independently for the listed activities Activity totally independent somewhat independent dependent Eat Bathe Get dressed Trim nails Brush teeth Distinguish medications Walk on sidewalk
Cross a street Navigate stairs Find a building Find a room within a building Read directional/informational signs Identify currency Identify products Use a computer Reach for an object Locate a person 90.00% 95.00% 92.50% 70.00% 97.50% 57.50% 60.00% 40.00% 92.50% 33.30% 32.50% 0.00% 37.50% 32.50%
never once a year once a month once a week daily RESULTSTRANSPORTATION 100.00% 80.00% 60.00% 40.00% 20.00% 0.00% Gaps in Mobility 87.2% rely on a cane for ambulation 39% of those surveyed maintained that they walked as their main mode of transport. 9.9% of our respondents said their mobility device (i.e. cane)
was their most useful technology 60% of our subjects cannot cross a street without assistance 97.4% are totally dependent on others to interpret directional or other signs 66.7% rely at least partially on others to find a building 17.4% reported that mobility was an issue inside the home 60.0% reported mobility problems outside the home. Insert video of blind person using the BrainPort (Lighthouse then Jose Neto) Results- Employment 50% were employed 31 % office 30% management 15% professionals 10% educators 20% laborers Results - Employment 33% reported no problems at work because of blindness
EMPLOYEMENT PROBLEMS RELATED TO BLINDNESS 40.00% 35.00% 30.00% 25.00% 20.00% 15.00% 10.00% 5.00% 0.00% Difficult tasks Impossible tasks Results Device Usage/Adaptation Would you sacrifice an intact sense? 50% yes 21% no 29% not sure How do you identify objects? Touch 97.5% Smell 20%
Sound 15% How do you identify people? vocal cues 97.5% Smell 20% How do you identify places? Sound 56.2% Touch 28% Smell 28% Attitudes towards Technology 60.0% of respondents use text to speech 12.5% use a cell phone or smartphone 56.4% denied that technology makes them nervous or apprehensive 23.1% reported being uncomfortable with technology. Is it better to have one device or many devices? General Use 42.4%- more versatile, less expensive fewer devices Special purpose 36.4%- best performance, less superfluous functionality No preference 21.2%
53.8% claimed that the number of tasks a device could be used for was very important. Technology Advantages Literacy Communication Recreation Other Object ID interface Portable Desired Improvements Smaller Consistency Reliability Interface Other Disadvantages
Interface Not tailored to blind Inaccuracy Not portable Technical Issues Battery life Other Method for determining type, functionality, advantages, disadvantages and possible improvements for devices that respondents were currently using. Advantages of Current Assistive Devices 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% ).20.00% 10.00% 0.00% y e
n n n t cy ce v i o o o l a a ti ti r bi ati eati rf a a e a t
c c e i t li fi r rm ecr n nt ti i o o u f n r r p n e m e
i s id m l/ u t o a e c x n pl o t- e n im ati s o c n u ed
Currently Used Ever Used er h ot Disadvantages Not user friendly Too hard to learn Unreliable Cost Cosmetically unacceptable Proposed Improvements other blind friendly interface more consistent/ reliable smaller
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% Ever Used Currently Used Describes more subtle features of a device that might lead to commercial success or failure. How well technology meets needs Versatility Ease of use Cost Attractiveness Noticeable How hard it is to learn to use Frequency of personal maintenance Frequency of Professional maintenance Not at all Somewhat
important unimportant Neither Somewhat unimportant nor important important Very important 0.00% 0.00% 3.10% 9.40% 87.50% 0.00% 6.20% 15.60% 25.00% 25.00%
2 Course Number 2 3 3 3 3 3 Month f/u--Lessons Learned Once they get home.. Core skills acquired are quickly forgotten Intimidation Boredom Transportation / access is the barrier to returning for additional rehab training
= Loss of interest Device abandonment Barriers to Follow up Capacity -not enough LVOT or providers to provide ongoing rehab sessions Transportation and reliance on others to get to appointments Perceived failure of devices due to confusion Geographic barriers It is often not known by the clinician whether the patient accepts the recommendations and/or correctly implements them in their home environment. Telerehabilitation A solution?? TR refers to the delivery of rehabilitation services via information and communication technologies . Rehabilitation services include assessment, monitoring, prevention, intervention, supervision, education, consultation, and counseling. Cost Considerations Would you pay
for an AD? no 5.3% yes 89.5% unsure Amount would pay for an AD? 5.3% 0 - 100 .0% 101 - 1000 5.6%
1001 - 10000 .0% 10000+ .0% as much as could afford 11.1% unsure/budget 83.3% Summary Current assistive devices do a fairly good job at facilitating literacy enhancing mobility or interpretation of the environment (i.e. signs) are a huge gap. The blind seek devices that are tailored to their needs, reliable, easy to use and are not prohibitively expensive
Summary Engage with the blind community Each stakeholder plays a vital role in the success of your project Get continuous feedback from everyone all the time You want to hear that you are wrong!! Joel Schuman Kevin Chan Chrissie Pintar Christopher Fisher Jacki Fisher Valeria fu Dongsheng Yang Rich Hertle Aimee Arnoldussen Rich Hogle Charles Laymon Vincent Lee Matthew Murphy Yaser Sheikh Yair Movshovitz-Attias
Amy Rebovich Ken Wojznik Mark Kislan Deborah Fenton Pam Howe Melissa Lowalkowski Judith Shanahan Wendy Chen Tobin Vijayin Jenna Sembrat Julie Steinbrink Alex Keifer Cody Wolfe Kathleen Janesco David Moffa Myles Nightingale Courtney Elvin Daniel Chen Acknowledgments National Institutes of Health CORE Grant P30 EY008098 Eye and Ear Foundation of Pittsburgh, PA Unrestricted Grant from Research to Prevent Blindness, New York, NY Defense Medical Research and Development Program (DM090217), Department of Defense, USA
Fine Foundation DCED State of PA Louis J. Fox Center for Vision Restoration- OTERO Lions Club Aging Institute University of PIttsburgh
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