Spreading Knowledge

Reprinted from PN/Paraplegia News October 2014

Financial support from the PVA Education Foundation once again helps multiple programs assist everyone with SCI/D.

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Paralyzed Veterans of America (PVA) is the nation’s premier organization for helping military veterans who have spinal-cord injury or disease (SCI/D). But the organization’s impact in the SCI/D community doesn’t stop with vets.

PVA is a major force when it comes to helping make life better for all people with SCI/D. The organization assists with medical research, air travel, advocacy and has even been asked to help create more accessible sports venues.

Also key among PVA’s efforts are its research and education grants. Earlier this year, the PVA Research Foundation awarded just over $1 million in grants and now the PVA Education Foundation has awarded more than $250,000 in aid.

The following grants will help fund things such as symposiums, conferences and better websites that will assist both veterans and non-veterans with SCI/D.

Conferences & Symposia

9th Annual Working 2 Walk Science & Advocacy Symposium

Marilyn Smith

Unite 2 Fight Paralysis

$15,000 (one year)

Working 2 Walk (W2W) is a science and advocacy symposium hosted by Unite 2 Fight Paralysis (U2FP).

It was conceived in response to a need voiced by individuals and organizations in the SCI/D community: We must bridge the informational gap between research scientists who are working to restore function and those who live with paralysis on a daily basis.

The SCI/D community must become more visible, vocal and informed in order to advocate effectively for therapies that will restore function and improve lives.

The 2014 symposium will be held in Seattle (Oct. 17–18) and a strong turnout from the local SCI/D community is expected. Presentations will focus on the latest advances in regenerative medicine, including gene therapy, stem cells, progress in clinical trials and nerve bridging. This year’s conference will also feature a larger emphasis on real-time and integrative therapies targeted toward the consumer audience.

The Working 2 Walk Symposium provides a unique opportunity for research scientists, investors, practitioners and consumers to share their hopes, concerns and strategies in a relatively intimate environment. Participants will leave the conference armed with knowledge, strategies and motivation to pursue solutions to the neurological puzzle of SCI/D.

ASCC 2014 SCI/D Conference — “Healthy Minds, Healthy Bodies”

Patti Rogers

Arkansas Spinal Cord Commission

$10,000 (one year)

Patti Rogers

The Arkansas Spinal Cord Commission (ASCC), a state agency, has provided educational conferences for individuals with spinal-cord disabilities, their families, care providers and health care professionals for 24 years. ASCC’s mission is to provide services to meet the unique and lifelong needs of individuals with spinal-cord disabilities and to assist them in living as independently as they choose.

ASCC hosted their 2014 SCI/D conference, “Healthy Minds, Healthy Bodies,” in partnership with the PVA Education Foundation on Sept. 26 in Benton, Ark.

More than 250 clients, family members/caregivers, rehabilitation and independent living professionals, case managers, social workers, nurses and others interested in promoting health and wellness in Arkansas with spinal-cord disabilities attended.

The conference’s primary focus was to address secondary health complications through holistic nutrition and to focus on psychosocial aspects of positive mental health.

Joanne Smith, a certified nutritional practitioner and co-author of Eat Well, Live Well with Spinal Cord Injury, was the conference keynote speaker and also conducted a breakout session called “Eating Healthy on a Budget.”

Scott Richards, PhD, clinical psychologist and Vice Chair of the Physical Medicine and Rehabilitation Department at the University of Alabama-Birmingham was a featured speaker.

Richards also conducted a general session on SCI/D adjustment versus acceptance and a breakout session for caregivers on coping with SCI/D. Other sessions topics included pressure sore prevention, exercise for SCI/D, recreational activities and other health-related issues.

In addition to educational sessions, there was a large exhibit hall, which featured durable medical equipment, assistive technology and other demonstrations of adapted vehicles, activity-based therapy and disability-related organizations and state agencies.

Patient, Consumer, Caregiver & Community Education

Spinal Cord Essentials Phase II: Progression, Promotion and Evaluation of an Individualized Multi-lingual Patient and Family Education Resource

Anthony Burns, MD

University Health Network

Toronto Rehabilitation Institute

$50,000 (one year)

A SCI is a life-altering event, and affected individuals are at risk for many health complications.

Patient and family education can help individuals living with SCI/D manage their condition, prevent health complications and stay healthy. Information needs include the areas of personal care, secondary health complications and re-entering the community.

While patients typically have access to the richest education resources during inpatient rehabilitation, they aren’t always ready to learn new information and think about long-term challenges. In addition, the volume of information that patients and their family members are faced with during shortened lengths of stay in rehabilitation can be overwhelming.

Spinal Cord Essentials was developed at the University Health Network’s Toronto Rehabilitation Institute (UHN-TRI) to deliver essential information in a targeted fashion. The program is a patient and family education initiative comprised of a series of brief self-management and educational handouts.

At admission to inpatient rehabilitation, patients receive a binder organized into eight colored tabs: Planning, Medical, Self Care, Mobility, Community, Finances, Contacts and Other. During the course of inpatient rehabilitation, each binder is individualized by incorporating additional materials relevant to that specific patient.

The end result is that each binder is tailored to each patient’s specific needs. To ensure convenient access for both staff and patients, handouts are available in hardcopy format in cabinets distributed throughout the center. Through the use of these educational materials, it’s hoped that patients will consolidate and implement knowledge related to secondary health complications thus reducing their occurrence and improving quality of life.

In Phase I, 72 handouts were written and made available in four languages (English, French, Chinese and Farsi) online at Phase II of Spinal Cord Essentials will focus on developing additional content, promoting increased use and testing effectiveness as a teaching tool.

Retention of information is a key component of patient and family education, and the program will assess how well patients and family members remember the information contained in handouts.

Additional activities include the development of new content, the translation of materials into Spanish and the review and updating of existing Phase I handouts, as indicated. A web designer will improve the online presence of, and an awareness campaign will promote the resource online, internally at UHN-TRI and to other SCI/D programs in Canada and the U.S.

Abstract reporting on these activities will be submitted to future conferences and evaluation results will be submitted for publication to a peer-reviewed journal. Because it’s a free, online, multilingual resource, individuals living with SCI/D worldwide can access and benefit from the content.

College Education & Wellness for Veterans with SCI/D

Michael Hartley, PhD

University of Arizona

$40,000 (one year)

Building upon the nationally-recognized success of a 2012 University of Arizona camp funded by PVA grant No. 681, this current grant will establish a second education and wellness camp focused on increasing college access and success for veterans with SCI/D.

While the fall 2012 camp emphasized adaptive athletics with minor activities in college learning, follow-up research revealed that the resilience-based, college-learning curriculum had the most influence on participants’ decisions to return to school.

Thus, the present project will institute another college education and wellness camp at the University of Arizona that concentrates on resilience and college learning more acutely. The camp will support up to 18 veterans with SCI/D interested in returning to and/or learning about college.

In addition to replicating the 2012 college-learning curriculum, the camp will expand the role of the campus Veterans Education and Transition Services center as a key feature in easing the initial transition for veterans by providing a social base within the larger university community.

An accompanying follow-up study will focus on unpacking layers of meaning that become embedded into the experience of veterans with SCI/D in the camp.

The Participation and Quality of Life (PAR-QoL) Tool-Kit: Phase II

Luc Noreau, PhD

Universite Laval

$50,000 (one year)

The purpose of this initiative is to enhance the content and capabilities of the Participation and Quality of Life (PAR-QoL) Web-based tool-kit ( The kit supports researchers and clinicians working in the field of SCI/D to critically appraise and select outcome measures for their research and clinical program evaluation activities.

The PAR-QoL website is a unique resource for SCI/D professionals by providing them with not only a ‘tool-kit’ of QoL outcome measures, but it also provides education on QoL constructs. It has interactive features that keep visitors informed of recent developments in the field and enables them to seek feedback on their own research and program evaluation activities.

One of the challenges of assessing the impact of SCI/D on QoL is that aside from the primary impairment of paralysis, people with SCI/D must often contend with associated secondary health conditions such as spasticity, pressure sores, bowel and bladder problems, neuropathic pain, etc.

In order to promote usage and interest in the website, a number of additional features, some with a dynamic or an interactive component (e.g. ask an expert spotlight, newsletter, news and events, etc.), have been built into the website.

At this stage of the PAR-QoL website, our group would like to augment the core content of it by expanding the site to include sections on key life domains, such as housing, transportation, employment and leisure. For developing new content for the PAR-QoL, we’ll follow the same methodology used for developing the existing content.

A series of systematic reviews of all relevant literature will be conducted using multiple databases. As well, we would like to host a live webinar on QoL outcome tool selection for researchers and clinicians, which would then be archived on the PARQoL site for future visitors to view at their own leisure.

The proposed project meets PVA Education Foundation’s mission of increasing the knowledge and effectiveness of health professionals in the SCI/D community. Meaningful descriptions of the societal and personal burden of living with SCI/D can serve to influence social change and health policy for obtaining the necessary resources for people with SCI/D to maintain their health and well-being.

The target audience for this proposal includes clinicians and researchers working in the field of SCI/D. However, our group strives to make the site attractive to people with SCI/D by using the interactive/dynamic features (such as the blog, news and events) to provide information on current events and resources they may find useful. Given that this proposal is for a web-based platform, it has the potential to reach thousands of people working in the field and at global level.

Professional Development & Education

Improving Patient Medication Management Adherence and Satisfaction

Patrick Kitzman, PhD, MSPT

University of Kentucky

$44,007 (one year)

Multiple medications serve as the common standard of care for management of complications in SCI/D. However, with increasing numbers of medications there is also increased risk for drug complications and decreasing compliance rates.

Therefore, it’s important that individuals with SCI/D are able to talk confidently with health care providers about their medications and be active partners in decision-making about their long-term care.

The purpose of this study is to examine the effectiveness of an innovative Web-based educational tool to help patients better understand their medications in order to more actively participate in their medication management. Specifically we’ll determine: 1) If the use of an innovative Web-based application increases confidence in medication use, improves ability to discuss medication with their doctor, increases satisfaction with medication management and improves adherence with drug management plan, and 2) if the Web-based program is more useful to persons recently injured versus those with chronic SCI/D.

To our knowledge, there are currently no other Web-based applications or educational materials designed to help individuals understand their individual drug treatments by conveying information such as side effects and drug-drug interactions in multiple forms to improve health literacy, self-confidence and medication treatment compliance.

Improving Psychosocial Outcomes following SCI/D with Measurement Resources

Linda Ehrlich-Jones, PhD, RN

Rehabilitation Institute of Chicago

$45,000 (one year)

When working with persons with SCI/D, few rehabilitation professionals routinely measure psychosocial functioning, such as quality of life, life satisfaction and participation in life roles.

However, evidence-based practice requires routine monitoring of functioning through every episode of care. Failure to measure psychosocial functioning regularly may reflect a lack of knowledge of reliable, valid and sensitive instruments to measure these issues, lack of experience or an organizational culture that does not support or require routine measurement. This project addresses these measurement challenges to help clinicians implement evidence-based practice.

The objectives are to:

1. Develop collaborations with university graduate and undergraduate programs that train health care professionals in six disciplines: rehabilitation psychology, rehabilitation counseling, recreation therapy, nursing, occupational therapy and social work and enhance teaching materials on outcomes measurement to apply to psychosocial issues.

2. Enhance the Rehabilitation Measures Database (RMD) by adding instrument summaries that focus on psychosocial, quality of life and employment issues of persons with SCI/D.

3. Provide online outcome measurement education for clinicians who treat persons with SCI/D, focusing on psychosocial and employment issues.

The Rehabilitation Measures Database (RMD) is an educational resource that provides clinicians with free summaries of instruments, including concise descriptions of measurement properties of a variety of instruments applicable to persons with SCI/D and educational resources describing why and how to measure rehabilitation outcomes (

Our initial focus with RMD was on instruments measuring mobility and activities of daily living. This proposal addresses PVA’s Professional Development and Education priority by adding instruments related to psychosocial, quality of life and employment issues that affect persons with SCI/D, and to provide educational resources regarding measurement of these issues.

We’ll engage faculty and students in rehabilitation programs to develop new instrument summaries as part of their curriculum. In addition, we’ll provide two webinars on measurement of psychosocial issues for persons with SCI/D. We’ll work with the editor of Rehabilitation Psychology and other journals to publish instrument summaries from the RMD to broadly disseminate psychosocial measurement information.

Successful completion of this project will increase the number of rehabilitation professionals who are prepared adequately with reliable, valid and sensitive measures to guide treatment and maximize outcomes of persons with SCI/D.


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