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SCIRF #2015 P-02

PI: Susan D. Newman, PhD RN CRRN

Grant Title: Development and evaluation of multimedia and technology-enhanced components of a telehealth SCI self-management intervention

Final Technical Report

Study Overview The primary goal of this proposal was to conduct additional, essential pilot work to support the development of a technologically enhanced, peer-supported self-management intervention in partnership with the South Carolina Spinal Cord Injury Association (SCSCIA). Our Peer-supported Health Optimization, Education, aNd Information eXchange (PHOENIX) telehealth intervention, which builds on our pilot in-person Peer Navigator study, is specifically designed to promote self-management after SCI. The broad goals of PHOENIX are to improve participants’ community participation and QOL and decrease occurrence of medically serious secondary conditions and rehospitalization after SCI. The primary modalities of our PHOENIX intervention are: a) Web-based multimedia educational content housed in freely accessible iTunes U, and b) Scheduled televideo interactions for knowledge and skill building, and information exchange between the participants and Peer Navigators with SCI. This 1-year, 2-phase pilot study supported the preliminary development and evaluation of new multimedia and technology-enhanced components of PHOENIX. The primary aim of Phase 1 was to collaborate with the SCSCIA and our PHOENIX Task Force in the development of acceptable, appealing, and appropriate multimedia educational content related to SCI self-management and prevention of secondary conditions. The primary aim of Phase 2 was to evaluate the basic functionality, features, operation, and user preferences for the multimedia educational content and tablet computers. AIM 1: Phase 1: Develop, in collaboration with our community partners, multi-media educational content for 2 PHOENIX modules on prevention of secondary conditions after SCI for delivery through a telehealth platform using tablet computers – Status: Completed

Aim 1a. Produce 2 instructional videos on prevention of common secondary conditions (pressure ulcers and urinary tract infections) – Status: Completed Aim 1b. Build course infrastructure and upload videos and other relevant multimedia content (i.e. website links, etc) in iTunes U platform – Status: Completed

Results: The primary outcome of Aim 1 was the production of two videos and development of iTunes U course content related to secondary health conditions, with a focus on understanding risk factors for secondary complications, strategies to minimize these risks, identifying a problem in the early stages of development, and knowing what to do once a problem has been identified. A critical feature in development, delivery, and evaluation of educational interventions is acquiring viewpoints, perspectives and guidance from stakeholders. Our community partners with SCI made very clear that our videos should be brief, realistic, and relatable, and most importantly, the information should be scripted and delivered by individuals with SCI to keep in

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line with our peer-supported health education approach. To develop the videos, our PHOENIX Task Force worked collaboratively to develop an engaging and entertaining way to deliver targeted information through creative scenarios with actors with SCI (Figure 1). The Task Force worked together on script writing and selecting key information to include, recruiting actors to participate in the videos, and integrating preferences for information delivery (i.e. use of humor), graphics, text, and overall formatting (Figure 2). Dr. Newman, a certified rehabilitation registered nurse, ensured that credible and correct health information was provided with the primary source of information being the SCI Model Systems Knowledge Translation Center Fact Sheet library (http://www.msktc.org/sci/factsheets). We collaborated with Elephant Room Media, with whom the South Carolina Spinal Cord Injury Association has previously worked, for video production. Videos always include a disclaimer.

Figure 1. On the set of the Pressure Ulcer Prevention video

Figure 2. Screen Shot from the Pressure Ulcer Prevention video

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Links to the videos on Vimeo: Pressure Ulcers: https://vimeo.com/180117807/480591fb41 UTI: https://vimeo.com/180117269/522b654ba5 The second component of Aim 1 consisted of building 2 modules of PHOENIX using iTunes U, a well-established platform for the delivery of online educational content that we intend to use during the future implementation of the PHOENIX intervention. The videos were included as the first source of information in each module, followed by supplemental written information and graphics to provide more detailed information, building on concepts introduced in the videos. Additional links to other existing web-based resources, such as videos produced by the National Rehabilitation Hospital showing different pressure relief techniques in both manual and power wheelchairs, were embedded in the content.

Figure 3. iTunes U Skin Care and Pressure Ulcer Prevention content on the iPad

Members of the PHOENIX Task Force reviewed and provided feedback on and approval of the iTunes U content before moving to Aim 2.

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AIM 2: Phase 2: Conduct feasibility, usability, and acceptability testing of educational materials developed in Aim 1, and tablet computers for telehealth use – Status: Completed

Aim 2a. Evaluate end users’ perceived usability of and satisfaction with multimedia educational content and tablet computer interface using both quantitative and qualitative approaches - Status: Completed Aim 2b. Evaluate the two-way video capabilities of the tablet computers to support participant-PN interaction - Status: Completed Aim 2c. Evaluate the utility of the native accessibility features of the iPad and additional assistive technology based on participant needs – Status: Completed

Results: We enrolled 10 participants to complete the in-person testing (see Table 1 for participant demographics). In-person testing was conducted in participants’ homes in order to simulate the setting in which they would access and use PHOENIX in a future trial. All

participants owned a mobile device (laptop, tablet, smartphone) and had access to wireless internet in their home, although one individual was only able to access the internet via smartphone. During testing, we connected to the participants’ home wireless internet or used a mobile hotspot in instances where they were unable or reluctant to provide the password to the investigator to access the home Wi-Fi. Participants were offered the choice of using an iPad Air 2 or an iPad mini. 90% of participants preferred the iPad Air 2 due to the larger screen size. After being provided some basic information about accessing the iTunes U and FaceTime apps, and navigating on the iPad through scrolling, swiping, and tapping, participants explored the iTunes U course. All participants reviewed the videos and the written course content. The PI observed them as they navigated the course and provided prompts if requested. The most common navigational challenge was returning to the iTunes U course content after viewing the videos that were housed outside of the course in YouTube. Participants were prompted to locate the small text prompt in the upper left hand corner of the screen to return to the course. After participants stated that they were done looking through the course, a video chat with one of our Peer

Navigators, using FaceTime, was initiated. Connectivity issues precluded one participant from engaging in the video chat. The individual was unable to provide the Wi-Fi password and lack of good connectivity to a cellular network prevented using the mobile hotspot. Notably, this participant lived in the most remote, rural location of all. Once the video chat session was established, the participant and the Peer Navigator engaged in casual conversation during the

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chat session. Upon completion of the hands-on testing, participants were provided with questionnaires evaluating the use of the iPad, iTunes U, and the video chat. They were also interviewed for qualitative feedback. Aim 2a: Evaluate end users’ perceived usability of and satisfaction with multimedia educational content and tablet computer interface. Participants completed an adapted Systems Usability Scale (Brooke, 1996) to evaluate using the iPad, and an adapted Standardized User Experience Questionnaire (Sauro, 2015), originally designed to evaluate usability, trust and credibility, and appearance of websites, to evaluate the iTunes U course. All questionnaire used a 5-point Likert scale (1-Strongly Disagree; 5-Strongly Agree). Means and Standard Deviations(SD) for each item on the scales are presented in Tables 2 and 3.

Table 2. iPad (n=10) Min Max Mean (SD)

Would like to use frequently 4 5 4.70 (.48)

Easy to use 4 5 4.60 (.52)

Able to access needed features 4 5 4.60 (.52)

Accessible to me (with or without AT) 2 5 4.30 (.95)

Very intuitive 4 5 4.70 (.49)

Could use without tech support 4 5 4.50 (.53)

Most people would learn how to use quickly 4 5 4.40 (.52)

Feel confident using 3 5 4.50 (.71)

Could use without learning anything new 2 5 3.90 (.99)

Table 3. iTunes U (n=10) Min Max Mean (SD)

Easy to use 4 5 4.50 (.53)

Information in the course is credible 4 5 4.60 (.52)

Easy to navigate 4 5 4.50 (.53)

Clean and simple presentation 4 5 4.60(.52)

Information in the course is trustworthy 4 5 4.50 (.53)

Course is attractive 2 5 4.33 (.95)

Feel confident using 4 5 4.60 (.52)

During the qualitative evaluation, participants spoke favorably regarding the iTunes U platform and content - “I could use one finger to work it and it was a lot easier than the computers in the library.” The majority of participants liked the online and multimedia aspect of the educational content – “It’s better than a pile of papers and I like that you can interact with it.” All participants spoke favorably of the videos finding the length to be acceptable and the content easy to understand. The majority appreciated that all the actors were individuals with SCI, and found that the humor and style of the videos helped to keep them engaged and interested in the content - “The videos got you motivated and held your attention;” “I liked that it showed them messing with a car, it showed that you can still do stuff in a wheelchair;” “The videos were funny and I liked the sitcom format [of the UTI video].” Suggestions for improvement included increasing the font size of the text in iTunes U, having more people in the videos, and having the actors talk to the viewer, instead of each other, at times.

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Aim 2b. Evaluate the two-way video capabilities of the tablet computers to support participant-PN interaction Participants completed a measure adopted from previous usability testing of smartphone two-way video capabilities (FaceTime app) for potential telehealth use for U.S. military service members (Luxton, Mishkind, Crumpton, et al., 2012). The questionnaire used a 5-point Likert scale (1-Strongly Disagree; 5-Strongly Agree). Means and Standard Deviations(SD) for each item on the scale are presented in Table 4.

Table 4. Video Chat (n=9) Min Max Mean (SD)

Easy to establish the video chat 4 5 4.44 (.53)

Able to see the other person clearly 4 5 4.56 (.53)

Easy to see facial expressions of the other person 4 5 4.67 (.50)

Easy to hear 4 5 4.67 (.50)

Comfortable to hold IPad 2 5 4.22 (.93)

Size of image was adequate 4 5 4.44 (.53)

Looking at the screen made me dizzy 1 2 1.33 (.50)

Feel comfortable using 4 5 4.56 (.53)

Interested in using to interact with peers 4 5 4.67 (.50)

During follow up questioning, participants expressed positive perceptions of the video chat experience. “[The video chat] was cool. He could be in New York and we could still connect.” Another participant appreciated the opportunity to talk to “others in a chair, who’ve been through it and know what it’s about.” No one expressed any unease or discomfort with using the video chat feature to connect with someone remotely. FaceTime worked well once connected with no “dropped chats” or other video or audio issues. Aim 2c. Evaluate the utility of the native accessibility features of the iPad and additional assistive technology based on participant needs Only one participant, C4-5 incomplete injury, required adaptive equipment to use the iPad. The participant was able to tap the screen in the appropriate place with his knuckle but was unable to apply enough pressure to activate the iPad. We provided him with an adaptive stylus (Sixth Digit Ring Stylus) and using this he was able to navigate the iPad effectively. Other participants with impaired hand function used their knuckles as well, but were able to apply adequate screen pressure, however they did “play with” using the Sixth Digit. Overall it was reviewed favorably other than it sometimes slipped around the finger. Additionally, those with impaired hand function found it easier if the investigator held the iPad up for them during use, indicating that we will need to provide some type of wheelchair mounts for the iPads in the future. Final Outcome & Value to South Carolina: Completion of this pilot project positions us well to pursue additional funding for further development and implementation of PHOENIX. We have established that our team can work collaboratively to produce multimedia educational content that is appealing and acceptable to our targeted participant population. Based on the results of this pilot, we have demonstrated that the iPad and iTunes U are a usable, acceptable, and functional platform for delivery of PHOENIX. It is likely that we found few technical usability issues as the iPad and iTunes U are well established and widely used. Based on feedback from our participants, we will develop an introductory video that provides basic information on using and navigating the iPad and iTunes U.

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The pilot work provided foundational development and testing of the technology components of PHOENIX that will support future implementation in SC. Our long-term objective is to develop a structured, technologically enhanced PHOENIX program that can be implemented statewide through the SCSCIA with potential for dissemination nationwide through the United Spinal network. The long-term goal of this research reflects the mission of SCIRF to support research initiatives that improve the health and quality of life for residents of South Carolina with SCI. Grants funded: We were awarded an MUSC Center for Global Health Pilot Grant program in May 2016 to support a one-year exploratory study, using a community-engaged research (CEnR) approach in partnership with the Empowering Spinal Cord Injured Persons Trust India (ESCIP) transitional living program, grounded in a peer-mentoring model for individuals with SCI, in the Kailash Colony district of Delhi. This study is currently in progress. Using mixed methods, we are exploring the personal and environmental assets and challenges affecting the health and participation of individuals with SCI in Delhi, India. Data collected in this exploratory study will guide future collaborative efforts with our ESCIP partners to develop and implement a structured SCI Peer Navigator intervention, similar to PHOENIX, and to conduct future investigations evaluating the effect of Peer Navigation on health, participation, and quality of life after SCI in India. Our plan is to use this pilot to apply for an R21 through the NIH Fogarty Center. Grants submitted: We re-submitted a Research FIP (Field Initiated Project) grant application to the National Institute of Disability, Independent Living, and Rehabilitation Research in February 2017 to support further development and expansion of PHOENIX educational content, and a subsequent randomized, waitlist pilot trial of the full PHOENIX intervention. The previous version was reviewed favorably with addressable concerns. We will know a funding decision in September 2017. We intend to resubmit our R01 that supports a trial of PHOENIX to NIH in June 2017. We submitted an application to the Paralyzed Veterans of America Educational Foundation in February 2017 to complete our PHOENIX library of educational videos through the production of 5 brief, engaging instructional videos on: 1) Problem solving bowel management issues, 2) Being an empowered consumer, 3) Engaging community resources 4) Self-advocacy in the healthcare setting, and 5) Evaluating credibility of online information. Our community partners with SCI will continue to be actively engaged in scripting, acting in, and directing the videos, keeping in line with our peer-supported health education approach. We plan to conduct focus groups with up to 40 individuals with SCI to evaluate the educational videos. Anticipated results will provide direct user feedback on the online educational content of PHOENIX, which is essential information to guide further refinement and testing of PHOENIX in a future trial. Abstracts submitted: Our team submitted an abstract in Feb 2017 for a poster presentation, titled PHOENIX: Translating an SCI self-management intervention for telehealth, to the Academy of Spinal Cord Injury Professionals (ASCIP) annual educational conference. If accepted we will present at the conference in September 2017. Other Dissemination: The SCSCIA highlighted our partnership’s production of these videos in their Fall 2016 newsletter, Outspoken (see Appendix).

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Brooke, J. (1996). SUS: A "quick and dirty" usability scale. In P. W. Jordan, B. Thomas, B. A. Weerdmeester, & A. L. McClelland (Eds.), Usability Evaluation in Industry. London: Taylor and Francis. Luxton, D., Mishkind, M. Crumpton, R., Ayers, T., Mysliwiec, V. (2012). Usability and feasibility of smartphone video capabilities for telehealth care in the US Military. Telemedicine and e-Health, 18(6), 409-412. Sauro, J. (2015). SUPR-Q: A comprehensive measure of the quality of the website user experience. Journal of Usability Studies, 10(2), 68-86.

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There’s nothing funny about a urinary tract infection.

Yet a new video on UTI prevention after spinal

cord injury resembles a TV sitcom, complete with

a laugh track.

Inappropriate? Insensitive? Ineffective? Researcher

Susan Newman doesn’t think so. Dr. Newman,

a certified rehabilitation registered nurse, is an

Associate Professor in the College of Nursing at

the Medical University of South Carolina and a

board member of the South Carolina Spinal Cord

Injury Association. The video is one of two that

were recently produced through a study funded

by the South Carolina Spinal Cord Injury Research

Fund. “It’s a serious topic and we wanted to take

potentially pretty dry information and present it in a

way that’s engaging. Could it be done in a way that’s

entertaining?” she said.

The second video starts off in black and white with

a narrator speaking inside of an old-fashioned

TV screen. The scene then shifts to two men with

spinal cord injuries working under the hood of

a sleek Mustang. As their conversation turns to

pressure ulcers, humor is also incorporated in

unexpected ways.

The videos were produced through a collaboration

between the South Carolina Spinal Cord Injury

Association and the PHOENIX program. PHOENIX

is an acronym for Peer-supported Health Outreach,

Education and Information eXchange, which

represents Dr. Newman’s research focus for the past

Humor and Health Education? Really?six years. “The core of PHOENIX is reaching out and

providing people with spinal cord injuries with health

education and community resources through peer

navigators,” she explained.

In prior studies Dr. Newman paired up men and

women with spinal cord injury with trained peer

navigators (individuals successfully living with spinal

cord injury). Navigators met one-on-one in people’s

homes to address common secondary conditions and

factors that kept them from being more engaged in

life post-injury. “Driving to people’s houses was very

time-consuming and it limited our reach,” Newman

said. So she applied for and received a $28,000

grant to explore an online and telehealth approach

to peer navigation. This means that instead of

using educational materials in a three-ring binder,

all content will be provided through an iPad. In

addition to key points on UTIs and pressure sores

included in the videos, more detailed information

will be available online, separated into manageable

segments. Visits with navigators will be conducted

through video chat.

The focus of her current grant is evaluating

participants’ ability to access the videos and written

materials and communicate with the peer navigators

on the iPad. “We want to know what kind of

assistance they would need in order to be able to use

the iPad on their own,” Newman said. She will also

Continued on Page 4.

John Bryant reacts to photos of worsening pressure ulcers in the video on skin care.

Continued from Page 3.

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South Carolina Spinal Cord Injury AssociationA Chapter of United Spinal Association 136 Stonemark Lane, Suite 100 Columbia, S.C. 29210 803-252-2198 info@scspinalcord.org www.scspinalcord.org

PRSRT. STD.US POSTAGE

PAIDPERMIT NO. 706COLUMBIA, SC

Facebook.com/scscia @SCSpinalCord

be soliciting feedback on the videos. This information-

gathering process will help her determine what needs

to be fine-tuned for her ongoing research.

Dr. Newman is currently seeking funding to support

her next step: a telehealth peer navigation program

delivered through the iPads. “I’d like to see that the

PHOENIX program has an impact: that quality of life

improves, secondary conditions are reduced, and

people get out more in the community.” She’s excited

about the prospect of producing more videos

on a range of secondary conditions. “Everyone had

a sense of ownership from the very beginning,” she

said of a committee of volunteers that wrote the

UTI and pressure sore scripts. A couple of the

committee members were also recruited as actors,

with Sherwood Toatley and John Bryant taking on

the two on-screen roles.

Marka Danielle served as narrator. A former

professional ballerina before two spinal cord

injuries, Danielle has a special affinity for the

performing arts. “I love the theatre and

I love to teach. To put those together with the

videos was the perfect scenario for me. The

best way I can help others is through sharing

what I’ve learned living in a chair.”

Sherwood Toatley (left) and John Bryant cut up in the video on urinary tract infections.