Mrs. A and Mr. B
This project aimed to identify those fundamental changes in the health services and delivery system that are needed to create equitable systems of healthcare for persons with disabilities. Although disparities in healthcare have been researched for many groups within the overall population (e.g., gender, minorities), little research exists about disparities related to disability.
PCORI, the Patient-Centered Outcomes Research Institute, is funding this project. PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.
As a project partner with the University of Pennsylvania, Virtual Ability, Inc. was involved with the Mrs. A and Mr. B project since its planning stages and during proposal writing. Virtual Ability’s main role is to recruit, train and conduct a series of focus groups held with different types of people. In the virtual world Second Life, trained Virtual Ability focus group facilitators conducted focus groups with people with disabilities (or their proxies if they were unable to speak for themselves), with people without disabilities who were not caregivers for anyone with a disability, and with clinicians. Face-to-face focus groups were held by Virtual Ability staff with people in an urban setting.
Text transcripts of all focus group sessions were de-identified of HIPAA-protected data before secure transmission to the analysis team at the University of Pennsylvania. All Virtual Ability staff are CITI ethics trained and certified.
The three-year project started in August 2013, and is now completed. The purpose of the focus group sessions was to aid in interpretation of statistical research. Initial findings indicated several emerging themes, including the importance of self-advocacy, a concern about the impersonal and rushed nature of interactions with primary care physicians, and most prominently, observations that providers are not communicating with each other about their common patient’s care.
The project website, developed and maintained by Virtual Ability, Inc., included sections for researchers and for the general public. The latter, written by Virtual Ability staff in language that is easily comprehended by non-scientists, explained the research process as well as emerging results. A public forum encouraged everyone to respond to questions related to the research. A portion of the website also addressed the needs of clinicians who work with patients who have disabilities.
A published paper, “Patient Satisfaction and Perceived Quality of Care Among Older Adults According to Activity Limitation Stages,” offers emerging quantitative findings from this project.
Alice Krueger, president of Virtual Ability, Inc., notes, “One exciting aspect of this project – and one that directly led to the project winning funding from PCORI – is that many aspects of the work, such as data de-identification and focus group facilitation, are being done by people with disabilities. Virtual Ability is able to bring together people with disabilities both as participants in research and as trained project staff.”
Sister Patrice Colletti, SDS, project director for Virtual Ability, Inc., states, “It has been exciting to involve consumers of healthcare- people with and without disabilities- in directly designing, implementing, and providing data for this research. This project welcomes and integrates insights and ideas from these experts in receiving healthcare. Together, we bring a critical and too-often overlooked perspective to the national healthcare dialogue. Working with our colleagues at the University of Pennsylvania School of Medicine, we are engaging and leveraging expertise from every angle. This is powerful.”
Hillary R. Bogner, MD MSCE, Associate Professor at the University of Pennsylvania, explains, “We worked with Virtual Ability, Inc. as a team dedicated to eliminating disparities in health services related to disability. Our goal was to enhance the understanding and empowerment of populations of people with disabilities. The burden imposed by disability on the population at large will be extreme in the coming decades. Virtual Ability, Inc. empowers and helps persons with disabilities move beyond the barriers separating them from the larger society. People come from many diverse cultures across the age spectrum, and frequently share innovative grassroots solutions to living autonomously, making Virtual Ability, Inc. ideal for community-engaged research. For our project, Virtual Ability, Inc. governed and directed administration of qualitative procedures and data collection within Second Life. Through its existing infrastructure and extensive network of volunteers, the community within Virtual Ability serves as a groundbreaking platform for community-engaged research. Virtual Ability, Inc. continues to help us disseminate our findings on how people with disabilities face accessibility barriers particular to their conditions. Together with Virtual Ability, Inc., we can make a difference.”
Older Person’s Participation in Second Life
For the University of Arkansas in Fayetteville, Virtual Ability, Inc. provided virtual world training and mentoring to support of the “Older Persons’ Participation in Second Life: Implications for Well-Being” project.
In coordination with the Arkansas Area Agencies on Aging, this project aimed to introduce older adults over age 60 who live at home to Second Life and evaluate the efficacy of their participation in SL on improving psychosocial functioning (such as depressive symptoms, loneliness, satisfaction with life, social connectedness, and perceived social support). These adults were compared to a control group who were taught 2-dimensional social networking such as Facebook and email.
The project began in summer 2014 and was completed in spring 2015. Funding for the project was provided by Mather Lifeways Institute.
As a project partner, Virtual Ability’s role was to provide trained “Ambassadors” within the virtual world, who assisted the research participants once they entered Second Life. Virtual Ability also organized trips to interesting sites within Second Life, including dance clubs, beaches, and international venues.
Commenting on this project, Alice Krueger, president of Virtual Ability, Inc., explains, “As an older person myself, I know how important Second Life can be for socialization. It is always helpful to document through research the things we know through our own life experiences.”
Dr. Tim Killian, project director from the University of Arkansas, comments, “There is increasing interest in the use of virtual reality to provide for mental and social needs of people who are physically limited, or otherwise isolated from others. Although not everyone in our study embraced Second Life, several of our research participants reported benefits from visiting new places and meeting new people from all over the world.”
Virtual Ability, Inc. and ADL Company proudly announce the initiation of the AVESS (Amputee Virtual Environment Support Space) Project. AVESS is funded by the Telemedicine and Advanced Technology Research Center (TATRC) of the U.S. Army Medical Research and Materiel Command (USAMRMC).* The purpose of this project is to establish best practices and protocols for the provision of on-line peer-to-peer support services for military amputees and their families. The first phase of this project created demonstration environments in Second Life®. Phase Two will be the creation of a four-sim supportive environment in SL.
Virtual worlds can provide military amputees with an opportunity to enhance their overall quality of life, expedite their reintegration into society, and improve their physical and mental wellness. While the rehabilitation goal is for the soldier to return to active duty, many return to their civilian communities. Spouses and family members of military amputees often become their caregivers after they are released from military hospitals and rehabilitation programs.
Peer support groups help recent amputees gain the experience and confidence and practice the skills necessary to proceed with their rehabilitation. Support groups can also assist family members and spouses with their caregiving issues and concerns. A virtual world environment may facilitate ongoing care and support, especially for amputees who live far from rehabilitation facilities.
* This work is supported by the US Army Medical Research and Materiel Command under Contract “W81XWH-09- P-0731.” The views, opinions and/or findings expressed above are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision unless so designated by other documentation.
College Open Textbook Project
For the Community College Open Textbooks Collaborative, Virtual Ability, Inc. evaluated the accessibility of dozens of online textbooks and other course material. The function of the Collaborative is to encourage adoption of open digital textbooks by community and other two-year colleges.
Open textbooks are available for use without restrictions and can be modified and then downloaded or printed from a web site or repository. Since open textbooks are often less costly than the traditional printed books, this move is intended to benefit students. The ability to easily modify open materials allows instructors to match texts to course objectives, thus benefitting curriculum designers and professors.
Virtual Ability, Inc. trained and employed persons with disabilities to evaluate online course materials on the four WCAG Four Principles: perceivable, operable, understandable, and robustness.
Perceivable materials are presented to intended users in ways they can perceive, either with their senses or through assistive technology. As an example, images on websites must have alt text that is accessible to screen reader software.
Operable materials and their navigation systems work with whatever user interface is employed. For example, tables must be described as rows and columns, so that a screen reader does not interpret them as incomprehensible horizontal lines of text.
Understandable materials and their interfaces can be comprehended by intended users. In textbooks, a glossary of new terms is very helpful to students.
Robust materials can be interpreted reliably by users and assistive technologies. Robust materials remain accessible, even as technologies improve. hyperlinks to definitions or explanatory background information are useful in online course materials.
For each of these four areas, specific criteria were developed against which materials were evaluated. A complete report and graphical summary for each textbook evaluated are available for over 100 open digital texts.
The project took place in 2010. Funding was provided by The William and Flora Hewlett Foundation.
Commenting on this project, Alice Krueger, president of Virtual Ability, Inc., says, “This was a great opportunity for persons with disabilities to have input into the education community about accessibility of course materials. Accessibility is not typically on the minds of professors as they design their courses. We need to make the process of creating accessible course materials, including textbooks, easier. Awareness of the need for accessibility is the first step in that direction.”
Universal Design of Virtual Worlds
Accessibility is an issue of increasing interest to residents of virtual worlds. The accessibility of a virtual world is a function of the design of structures and landscapes inside the world.
Virtual Ability recognizes three valid approaches to accessibility of virtual worlds, and has written a paper about this topic published in the Journal of Virtual Worlds Research. In certain circumstances it is appropriate to either ignore or emulate real world accessibility standards. In its builds, Virtual Ability chooses to employ a third approach, which we call Universal Design of Virtual Worlds.
Universal Design (UD) is the construction of environments so that all people may use them without needing specialized designs as adaptations for disabilities. The principles of UD benefit all users by focusing on common needs of all people to the greatest extent possible, not just those with disabilities. UD avoids segregating those who need adaptations, because UD is appropriate for all users.
Consulting services regarding virtual world accessibility provided by Virtual Ability are premised on the concept of Universal Design of Virtual Worlds. For more information, please contact Eme Capalini in Second Life, or contact us.
The Virtual Ability community endorses active learning. To support learning, a varied set of presentations are offered within Second Life® in the accessible cabanas and auditorium on Virtual Ability Island as well as in several other venues. Some presentations are lectures with question-and-answer sessions, some are discussion groups or panels, and some are classes or short activity sessions. Most are one-time events, although some are ongoing.
iSkye Silverweb is the community scheduler for VAI. She is Deaf and enjoys mentoring new residents as well as encouraging those with disabilities to discover, develop and, most of all, share their knowledge and skills, thus enabling themselves and others to be exposed to new experiences and information.
Virtual Ability sponsors at least one community activity each day within Second Life. Our calendar of events includes lectures, classes, and discussions, as well as entertainment, including themed events, art gallery openings, and dance parties.
Virtual Ability community members present at numerous conferences, both in virtual worlds and in the geographic world. We’ve presented at venues such as the Community Convention in Boston, the Second Life Birthday celebration, ISTE (International Society of Technology Educators), and Virtual Worlds Best Practices in Education. Virtual Ability was featured at the Health Information Technology Scholars program at the University of Colorado, College of Nursing.
Virtual Ability community members also present to classes on topics ranging from Universal Design, to assistive technology, to health-related communication in virtual worlds, to artists with disabilities. Our community members participate in focus groups for student nurses and other university classes, where the students question us about many aspects of life for persons with disabilities.
Some Virtual Ability community members have published professional papers, and there’s an awesome video about our AVESS project on YouTube. To find out more about these presentations and publications, please see our Links page.
VAI’s presenters intend to educate others about disability issues, while putting a human face on those issues.
The Virtual Ability community provided input to the US Access Board on the very important issue of new standards being developed about diagnostic medical equipment. Virtual Ability’s input was one of many data points considered by the Access Board, which is the federal agency that establishes standards for accessibility.