The January 7, 1998 edition of PULSE, The Medical Student Section of JAMA was dedicated to a series of articles on “The Americans with Disabilities Act and Afterwards: Disabilities in Medical Education and Practice”. One of the most interesting items in the entire section was the statistic that 8.8% of all college freshman report having a disability compared to only 0.2% of medical school graduates (1, p. 79). Covering topics from mental health to deafness, many of the articles are written from the first-person point of view of the disabled medical student, and while over ten years old is still an important read for any academic health sciences librarian.
(1) Reichgott MJ. The disabled student as undifferentiated graduate: a medical school challenge. JAMA 1998 Jan 7;279(1):79. doi:10.1001/jama.279.1.79
Though the majority of articles on disabilities featured in UpToDate require paid subscription access, there are three that fall within the free patient information division and would be ideal information prescriptions for non-biomedical staff:
A needs assessment survey published in 2005 details the first phase in a partnership with the School of Library and Information Studies at Texas Woman’s University, Houston Academy of Medicine-Texas Medical Center (HAM-TMC) Library, and Family to Family Network (F2FN). F2F provides services and support to families with special needs children in the Houston area. The needs assessment survey was the first phase of a joint effort to increase health information access to Texas families of special needs children. Both the survey methods and questions are detailed in the article, and would be an excellent template for any biomedical library interested in partnering with local resources to increase outreach and education to any special needs population.
Huber JT, Dietrich JD, Cugini E, Burke S. F2F connection: a community health information needs assessment of Texas families who have children with chronic illnesses and/or disabilities and their care providers. J Med Libr Assoc 2005 Apr;93(2):278-281. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1082946/
A 2009 study on the effects of education intervention on health information literacy in low socioeconomic senior citizens explored how information literacy training could improve their online searching skills. The study explained that physical, hearing, and visual impairments, which often increase with age, were some of the barriers to many senior citizens attempting online searches for health information. (1, p. 12)
The NIH SeniorHealth web site (http://nihseniorhealth.gov/) is a prime example of web accessibility. Though the website has colorful images, they are presented in a very uncluttered manner. Not only can the text be magnified, but contrast can also be set to create a black background with yellow writing. Speech can also be turned on to have all text read aloud within the browser. Information is arranged in an easy-to-navigate manner and all text is an easy-to-read level of comprehension.
(1) Chu A, Huber J, Mastel-Smith B, Cesario S. Partnering with Seniors for Better Health: computer use and Internet health information retrieval among older adults in a low socioeconomic community. J Med Libr Assoc 2009 Jan;97(1):12-20. doi: 10.3163/1536-5050.97.1.003
Seeking to improve the health information literacy, the Health Sciences Library System (HSLS) at the University of Pittsburgh partnered with the Western Pennsylvania School for the Deaf (WPSD) in project also supported in part by the National Library of Medicine. Reference Librarians from the University of Pittsburgh worked with WPSD health educators and the learning center director to create health eduction curriculum for the students which covered Internet health searches, health website evaluation, and an introduction to MedlinePlus.
Communication barriers to health information in the Deaf community can arise not only due to the hearing disability proper, but also in translating English to ASL (American Sign Language) and explaining complicated medical terminology. The partnership created a valuable exchange for all involved. WPSD staff educated the University Reference Librarian in techniques to improve communication with the Deaf, while the librarian instructed both staff and students to conduct authoritative Internet searches for health information.
Initially, the term “Universal Design” was coined by architect, Ronald L. Mace, a graduate and affiliate of North Carolina State University. Universal Design (UD) is “the idea that all new environments and products to the greatest extent possible should be usable by everyone regardless of age, ability, or circumstance.” (1) His work eventually led to founding the Center for Universal Design based at NCSU.
The seven principles for Universal Design are:
Flexibility in Use
Simple and Intuitive Use
Tolerance for Error
Low Physical Effort
Size and Space for Approach and Use (1)
A 2009 article by Ann S. Williams, PhD, RN, CDE in Diabetes Education, encourages the adoption of UD principles not only in medical devices used to monitor diabetes, but also in Diabetes Self-Management Education (DSME), emphasizing a strategy to accommodate not just the 90% of average users, but as close to 100% as possible (2, p. 2)
As an illustration, consider a DSME class that contains persons with hearing loss, visual impairment, and ADD, as well as those without current disability. If essential material is simultaneously presented in both audible and visual formats – for example, using colorful illustrations in a slide presentation with detailed verbal description from the instructor – persons with hearing loss, visual impairments, and ADD will be better able to perceive, attend, and understand it. Adding a lively participatory game will enhance the attention of the person with ADD. Making all classroom materials available in printed handouts, and also in audio-recordings or digital format ensures that persons with visual impairment or ADD can review the information at their own pace and in their own way. (2, p. 5-6)
UD presents principles that are applicable to the biomedical field as a whole, and can be integral in overall health literacy and efforts in all biomedical libraries. As William proposes, if we begin new strategies with Universal Design principles in mind, we can potentially eliminate the need to add “adaptations or special design” at a later date. (2, p. 7)
A study of health information needs of rural Oregon nurses published in 2008 indicates that there is a need to expand health literacy resources for the rural special needs population:
In addition to general nursing care resources, home visiting nurses wanted detailed resources for caring for patients with disabilities. (p. 337)
For patients with disabilities that do not live in larger, urban areas access to special needs resources can be extremely limited. This lack of resources can also be extended to the local public health nurses that serve the population. Rural nurses and caretakers face the same barriers as their isolated community, including limited information resources, internet access, and training. (p. 336) Through their interviews, the authors noted that numerous rural public health nurses experienced frustration while attempting to use online database for their information needs. Reasons stated included frustration with restricted login access to databases and patient information that was too advanced for the reading level of their patients. (p. 339).
There is a need to improve access and training to the rural medical community across the board. However, those with special needs already have numerous barriers to health literacy resources and assistive technology. Therefore, when their public health nurses are also facing barriers to information resources, these barriers are magnified.
The Toy and Technology Library in association with the Ohio State University Medical Center is a lending library for adaptive toys for children with special needs. Adaptive toys traditionally are more expensive than standard toys. By providing a free toy-lending service, parents can try out toys prior to purchase and work with a therapist to create an educational play environment.
Toy lending libraries are ideal additions to biomedical libraries in children’s hospitals, and have actually been around for decades in numerous countries. The University of Nottingham’s Toy Library was founded in 1970 while researching the development of play in children with disabilities, and remains active today. Child development case studies are taken when a family applies for membership; and both children and parents are provided with education and referrals to support the entire family. (1)