How Pain Impacts SCI

April 15, 2024

A nurse attends to a patient at the Craig H. Neilsen Rehabilitation Hospital in Utah. The female nurse smiles as she places a comforting hand on the male patient's shoulder. He is wearing a headband and a clear mask to aid his breathing.
A nurse attends to a patient

Managing pain is one of the highest priorities for the spinal cord injury (SCI) community. When a person loses feeling in part of their body due to a SCI, they might not feel a touch or a pinch, but they may still experience severe and chronic pain in those areas. This kind of pain is the result of changes in the spinal nerves and how the brain interprets them. Scientists are working to understand why these changes create pain as a guide to developing more effective treatment options.

There are many approaches to pain relief. Available drugs help alleviate the pain for some, but they carry risks of side effects or addiction, and, unfortunately, many people with SCI have pain that is drug resistant. Other needed options are being studied, including the use of stem cell-derived grafts to silence pain messages within the spinal cord. These cellular therapies are still being tested only in laboratories, and so these potential solutions are on a longer-term horizon.

Other alternatives to drugs are part of combination treatments in rehabilitation. Exercise therapies and psychological treatments, like yoga and massage, are proving successful. So are some types of nerve stimulation. Hypnosis has been added to the mix, with people finding effective relief from a guided state of relaxation and calm. Scientists are now studying exactly how this helps reduce pain so they can better understand and incorporate hypnosis into therapy.

While these scientists have made strides, there is still much to be done. In addition to funding research to learn more about SCI pain and develop more effective treatments, the Neilsen Foundation also supports work that looks at the effect that chronic pain has on people’s lives and helps them understand and cope with it. Chronic pain impacts both physical and mental health. It can lead to—or worsen—depression, isolation, and anxiety issues that can thwart rehabilitation and progress, destroy hope, and lead to other health issues.

Psychosocial researchers and therapists are helping individuals with SCI and their caregivers learn to cope with pain, and keep it from interfering in an active, healthy lifestyle. Drawing from these studies, Neilsen Foundation grantee partners at the University of Miami have developed educational materials to better inform people about the pain they experience and make them aware of alternative methods of pain relief. New materials have also been developed to inform doctors about the experience of pain after SCI and how best to relieve and manage it. And research at Oakland University and the University of Minnesota is identifying how people with SCI convey their pain to their healthcare providers. The results will help create a shared decision-making tool that will address the needs of patients and their doctors.

Understanding chronic pain and seeking therapies that provide relief are critical. There are opportunities to think creatively, reexamine existing treatments, and we are eager to see new ideas yet to be presented. We are proud to continue with funding to grantee partners who help us to achieve our mission. These researchers are seeking the answers and breakthroughs that will bring comfort to those who need it most.

Thriving on Campus and Beyond

March 15, 2024

Smiling University of Illinois, Urbana-Champaign student on graduation day. Sitting in a wheelchair and posing with her diploma, the student wears spectacles, a cap, a navy blue gown over a white T-shirt, and an orange sash
A University of Illinois, Urbana-Champaign student on graduation day

The Neilsen Scholarship Program (NSP) was built on values and ideals that were important to our Founder, Craig H. Neilsen. During his lifetime, Craig began assisting students living with spinal cord injury (SCI) who had a desire to attend college but may not have had the means to pay for tuition. He also wanted to help those students who struggled to cover the expenses associated with adaptive technology, personal care attendants, or other things they needed to help remove the barriers to a quality of life on campus.

When the NSP was launched, we had to develop a creative way to build support for students because the Neilsen Foundation does not make grants to individuals. The solution was to create partnerships with academic institutions that would identify and provide support to students with SCI on their campuses. These grants help underwrite the cost of tuition and fees, as well as providing supplemental support to offset other costly expenses related to living away from home. And, because attending classes might also include additional barriers for students with SCI, this support could include the personal care attendants and adaptive technology needed to fully participate.

To date, we have helped 273 students with SCI pursue their educational goals. Many of them have been inspired to take what the scholarship has given them and give back—creating their own ways of helping others. In that sense, the NSP has become a program that goes well beyond the Foundation and the schools we support.

But none of this would be possible without our partnership with the 17 academic institutions we now work with, including coordination between Disability Services and Financial Aid staff. To encourage discussion and shared planning, Neilsen Foundation staff host webinars that help everyone involved understand the needs of new generations of students with SCI. The schools have been willing to share information about what they’ve been able to do on their campus with other NSP partners and learning from each other’s experiences facilitates the development of practices that most benefit the students. This helps make a college education more accessible—not just in a physical sense—and benefits all students with a disability on the campus by enriching the institutional culture.

Normalizing interactions between able-bodied students and their peers with SCI in the classroom and around campus helps to lessen stigma about disability and boost inclusivity. Participating in adaptive athletics programs also helps students with SCI push their limits, highlight their abilities, and build their sense of school spirit. Many NSP graduates have raved about their experiences as college athletes, with some graduates having moved on to coaching positions to help others achieve an athletic dream. Students enjoyed campus life with the ability to focus on their education without the added financial burden. The NSP gave them all the confidence they needed to follow their educational goals.

To highlight what the students are doing post-graduation and acknowledge their accomplishments, last year we created a Graduates page on the Neilsen Foundation website. We asked them to share a memory of their time in college. Many are thriving, employed in their field of interest, and often striving to make a difference—just like Craig did during his life. One graduate is hoping to establish a scholarship program to help others struggling with the costs of college, while another has returned to the University of Alabama at Tuscaloosa to serve as a coach for the wheelchair tennis team. We are proud that our scholarship program and the institutional partners who help steward it have served as an inspiration for so many brilliant young minds.

The Vision to Pay It Forward

March 15, 2024

Smiling man with short gray hair, a light blue T-shirt and dark blue vest stands with his arms crossed in a rehabilitation setting
Brian Kwon – photo credit: VGH & UBC Hospital Foundation

How do you send the message to someone that you value their ideas, efforts, and vision? In a world where researchers, clinicians, and nonprofit leaders are constantly chasing the next grant, we set out to honor outstanding individuals who are at a mid-point of their career as a way to encourage them to continue with their trailblazing ideas. The Craig H. Neilsen Visionary Prize was launched in 2020 to highlight the legacy of our Founder’s gift to the world of spinal cord injury (SCI). It acknowledges the efforts and influential voices of people who embody the values that were important to Craig during his lifetime. To date, 12 individuals have been awarded the Visionary Prize, which comes with an unrestricted gift of one million dollars. There are no expectations for how the money will be used, but our hope is that the acknowledgement will provide a confidence boost and highlight the importance of their work.

One of the inaugural Visionary Prize recipients was Dr. Brian Kwon, a compassionate surgeon and thoughtful scientist who, in addition to caring for his patients, is dedicated to solving the mysteries surrounding SCI. He is a devoted mentor, sharing his knowledge and experiences with trainees at University of British Columbia’s International Collaboration on Repair Discoveries (ICORD) and he serves as the Director of Research for the Vancouver Spine Research Program.

When awarded the Visionary Prize, Brian used the money to create the SCI Innovation Fund at the University of British Columbia Hospital Foundation. This fund encourages creative thinking by allowing researchers in his organization to test out what he calls “cool new ideas” before beginning the application process for a large grant. “It gives us the ability to think a bit outside the box and take on things that are maybe a little unconventional or risky,” Brian explains. “We have embarked on some really novel things that we wouldn’t necessarily have been able to do. We have discretionary funding that we can draw on to try something new and, all of a sudden, we have data to get a much larger grant. We’ve actually been able to leverage these funds and get an additional $2 million grant.”

But the Visionary Prize has given Brian a much bigger goal than funding research—he hopes his contribution to start this fund expands the discussion about philanthropy and encourages others to invest in his organization: “If funders know that you believe in something enough to put your own money into it, then it’s a much different discussion when you’re trying to raise money to support SCI research,” he states, revealing a vision that mirrors values important to our Founder.

Each of the Visionary Prize awardees inspires the SCI community and beyond as they continue their leadership in their chosen fields—be that medicine, the arts, business, research, advocacy, or athletics. We believe that Mr. Neilsen would be proud to see how their bold work and determination are improving the lives of others.

Information With a Wider Reach

February 15, 2024

researchers in white coats sit around a desk during an information session
Researchers at Florida International University

Sharing knowledge can stimulate better and richer conversations. At the Craig H. Neilsen Foundation, we value open communication among our programmatic and scientific grantee partners. We encourage researchers to push in new directions, but the key to advancement is passing on the knowledge gained so others may benefit from what was learned.

Many of our grants involve sharing information from new research that, in the short or long term, will help individuals with spinal cord injury (SCI), their families, and physicians make better decisions about care. Researchers are looking at the strain on caregivers as they assist people with SCI during the first year after injury in one ongoing Psychosocial Research portfolio grant. Interviews being conducted will inform the development and dissemination of an Internet-based guide to assist caregivers. In an effort to move out of the laboratory and use that knowledge in the community, our grantee partners of a Creating Opportunity & Independence project in Philadelphia are creating the Next Step Series—an in-depth resource to inform the SCI community about everything from pressure sores to bowel and bladder problems to accessible housing.

Disseminating information to people living with SCI exemplifies much of the work that has been funded. Just last year, the SeePain guide was developed. This comprehensive tool, created by a group at The Miami Project to Cure Paralysis, is aimed at educating SCI consumers and helping them communicate with their healthcare providers about chronic pain. Learning about research results is vital for individuals with SCI, and there is not a specific type of research grant we focus on. One grantee partner developed information about bowel and bladder management—one of the top priorities for many people with SCI seeking a better quality of life. There is also new information for individuals who are hoping to become parents. One grant enabled researchers to get the word out about their advances and discoveries in sperm motility, and guidelines for breastfeeding are available on the Spinal Cord Injury Research Evidence website.

Some of our funded programs become examples that can be replicated by other organizations. The Nature’s Way wellness program for people with disabilities worked so well at Sunset Hill Educational Institute that its staff is planning to share its experiences as a model for other organizations. And grantee partners at the Oregon Spinal Cord Injury Connection are providing information and resources to peers at Connecticut’s United Spinal chapter after finding success with a community health worker program to reach low-income clients in rural areas.

Grantee partners are encouraged to share not only their scientific papers, but their data via the Open Data Commons for SCI registry—so it can be available for analysis in the future. And, having heard the call for “nothing about us without us,” we also encourage Integrated Knowledge Translation (IKT), the involvement of people with lived experience throughout the research process. IKT is a set of guidelines developed by researchers, clinicians, and members of the SCI community. In addition, the North American Spinal Cord Consortium (NASCIC) has developed a Research Advocacy Course to teach people about the SCI research process so they can become more involved in it.

We hope the knowledge gained by both researchers and those leading new community programs spreads, to help as many people as possible. If sharing becomes an even bigger part of caring, more organizations can use the knowledge and collaborate to improve the lives of people living with SCI.

Pushing Physical and Perceived Limitations

February 15, 2024

the high ropes course among the tree tops in Breckenridge, Colorado on a sunny day
Enjoying the high ropes course at Breckenridge Outdoor Education Center in Colorado

How often are you presented with something your mind immediately tells you is out of your reach? Not just out of your comfort zone, but just not “possible.” We all must face the things we find difficult or frightening from time to time. People with a spinal cord injury (SCI) are faced with many challenges that appear insurmountable—sometimes even activities enjoyed with ease before their injury. Using our mission and values as a guide, the Neilsen Foundation aligns with grantee partners that are encouraging the SCI community to push through perceived physical and mental limitations and embrace a newfound talent or passion waiting to be developed.

For instance, the idea of lifting daredevils with SCI into the treetops of Colorado to experience one of the only fully wheelchair-accessible high ropes courses in the world would have seemed impossible some years ago. Now, it’s a summer activity led by creative outdoor enthusiasts. Advances in assistive equipment and technology also help athletic teams compete at the highest level, while enabling grantee partners to lead hiking expeditions and climbing and wilderness programs. Feedback we have received suggests these types of activities offer so much more impact than just trying something new. They can “help reduce anxiety and boost wellness,” while giving individuals with SCI “a sense of community, joy, connectedness, and self-accomplishment.”

Extreme sports and mental toughness may be all the rage, but not everyone is up for that kind of thing. When your physical goals don’t include athletics and adventure, rediscovering the ability to paint or enjoying nature through photography might do wonders to improve your outlook. Accessible arts programs are thriving from Vermont to Texas, and opportunities to expand a love for photography have been supported from California to British Columbia.

Do you still think the “impossible” is so far out of reach?

Resources like peer support can help individuals newly injured overcome barriers that seem overwhelming by envisioning a future with potential rather than limitations. This can start with meeting a friendly stranger in the hospital—someone who has experienced life as you are about to, who can advise you about things you might encounter during your rehabilitation and beyond. Their understanding, guidance, and encouragement can help a person see how to make the most out of life. These peer mentors can introduce individuals with SCI to professional resources that set them on a new course with milestones that lead to greater independence. For some, getting behind the wheel of a car can be freeing, while others might want to get back to an activity they once loved, or even become an advocate or a mentor to others.

At the Neilsen Foundation, we meet so many people who have found a true purpose and a healthy new outlook on life following injury. We are moved by people who push past perceived limitations and encourage others to do the same. Every one of us should follow their example and test what we think are our limits—even for a minute. Then, next time, you might find yourself doing it for two minutes.

Finding Meaningful Connections

January 16, 2024

A researcher with spectacles and a white coat checks information on a computer screen at a desk

In celebrating over 20 years of funding and over 2,500 grants awarded, we also salute the many organizations providing services and conducting research on behalf of the spinal cord injury community. Our grantees are our partners in achieving our mission. Being willing to share ideas and listen to the perspectives of others are ways to enhance these partnerships, so last year, we worked with the Center for Effective Philanthropy to conduct a Grantee Perception Survey. In the feedback we received, there was an increased appetite for connection among fellow grantees and, although the Neilsen Foundation does not convene its grantee partners, we do have a great tool for learning more about who we fund, what we fund, and where we fund.

The Search Funded Grants link on our website was developed to acknowledge the work being done and to build connections between organizations and researchers interested in knowing more about our partners. You can search grants on our website in two places—at the bottom of our homepage or near the top of our Programs page. Both have a bright gold button to make it easy to find. The links take you to a large database of Neilsen Foundation grants.

“But how do I use it?” you may ask. We are happy to provide a few tips. In this day and age, most of us know to look for a magnifying glass icon/search box, but here are a few tips to help search effectively:

  1. The search tool at the top offers users a comprehensive list of Neilsen Foundation grants. Each grant title links to a page with more information about that grant, including information provided by the organization to describe its work.
  2. The web tool is hard-wired to use “research” and “researchers” in the headers, but this listing really is inclusive of Neilsen Foundation grants—programs, education, and research. Each grant is coded by the Neilsen Foundation’s portfolio acronym, COandI (Creating Opportunity & Independence), for programs, SCIMF (SCI Medicine Fellowships) or NSP (Neilsen Scholarship Program) for education grants, and, for research, SCIRTS (SCI Research on the Translational Spectrum) or PSR (Psychosocial Research).
  3. You can enter text in the Search box at the top of the page to focus on any topic. Alternatively, you can use the word ‘AND’ for combinations of interests and portfolios, e.g., ‘pain AND chronic,’ ‘recreation AND COandI,’ or ‘bladder AND SCIRTS.
  4. The menus on the sides of the page are additional tools that allow users to limit the results to specific years, grantees, organizations, or locations. Again, the listing includes all types of grants and collaborations, not just research. The drop-down menus under FILTERS on the left offer suggestions, or you can use the “More” links to search for other people or places. The headers on the right menu allow you to browse all places and organizations included in the search result.

At the Neilsen Foundation, we look for ways to make interactions with those interested in the Foundation’s mission—especially the organizations we support—more meaningful. This tool is intended to be an opportunity for our partners to learn about and connect with one another. We know that searching through long lists can be overwhelming and we understand that no text search is perfect, so we hope these tips get you off to a good start. If you want more information about the Foundation’s funding, or other information on specific topics, our staff are happy to help.

An Evolving Relationship: Grantees as Partners

January 16, 2024

A smiling health worker with long brown hair attends to a gray-haired patient with spectacles

Historically, there is a power imbalance in philanthropy between funders and applicants. The Neilsen Foundation needs its grantees to achieve its mission and, of course, its grantees need financial support to underwrite their programs and research projects. It is a relationship of mutual importance enabling us all to meet our goals. Applying for grants is inherently hierarchical but, over the last few years, we have worked to change our processes as well as our language to highlight that it is the beginning of a partnership. We see our grantees as partners—from application to funding and beyond—and it’s essential that our intentions and actions align.

We are thrilled when we hear that funded projects are going well. But, when they are not, we invite those discussions, so necessary changes can be made to achieve the project’s goals. We want to help our grantee partners succeed by making the best use of grant dollars. Foundation staff is open to sharing ideas, challenging assumptions, and collaborating to help support a grantee’s goals. That doesn’t mean we can be everything to everyone, but a frank conversation in both directions is critically important. These types of partnerships allow us to serve the spinal cord injury community in the best way we can, while encouraging the organizations that we support to be dedicated stewards of their funding.

In an effort to put these values into action, Neilsen Foundation staff try to remove barriers. Communication is encouraged throughout the process, from informational sessions and webinars to setting up one-on-one conversations. These give us the opportunity to clarify how our funding works, help everyone manage issues as they arise, and build better partnerships. These interactions have prompted the Foundation to make very intentional changes—rescheduling application deadlines to align with academic timelines, expanding programmatic grants to include capacity building, and making efforts to clarify or simplify our application processes.

There are also times when we hear ideas from grantees that aren’t right for the Neilsen Foundation. These may be requests that are outside our funding scope or suggestions to shift our grantmaking in directions that are not well-suited to our mission, vision, and values. People’s willingness to raise difficult questions demonstrates how important partnership is, even when, after consideration, we may not change how we make grants.

Partnership is more than just dollars in a grant. The most important thing that develops when grantees become partners is trust. Trust allows us to tackle difficult issues without the fear of impacting funding or the relationship. We acknowledge that the Foundation must take the lead in building trusting relationships, but we hope the organizations we support—and those we don’t—feel comfortable approaching us with hard facts and tough feedback. By working towards the goals we are all trying to achieve, we make ourselves better—together.

Our Words Really Do Matter

December 15, 2023

two boys seated in adaptive sports wheelchairs face each other as they chat on a court

 

When I was little, I remember being taught the nursery rhyme, “Sticks and stones may break my bones, but words will never hurt me.” My younger brother’s favorite was, “I’m rubber and you’re glue. Everything you say bounces off me and sticks on you.”  Well, although these may have been go-to strategies for parents in the 70s and 80s, they no longer apply. Words do hurt and, if you hear something enough times, it’s impossible to just let them bounce off. Words impact how we feel about ourselves and how others define who we are as people. Given the influence this has on our mental health and wellbeing, I have recently reflected on some words and phrases that are newer to my everyday vocabulary and carry a lot of power.

Ableism—This is a big one. Once you are sensitized to it, you will see it everywhere. Simply, ableism is discrimination in favor of able-bodied people. People with disabilities are often underestimated or devalued and their disability is looked at as something that needs to be fixed. There is so much implicit bias in our culture, so to truly combat ableism, people with a disability must have a seat at the table for key decisions. When their lived experience and perspectives are a part of the development of an idea from the start, the impact is much greater. Although I want to believe that people are well intended, most communities weren’t built with people with disabilities in mind and it’s time to evolve.

Inclusivity—It is easy to say “we are inclusive” but to put inclusivity into action, we must be proactive. It can take time, resources, and a hefty dose of humility. Acknowledging that you are not as “inclusive” as you thought can be tough, but that’s NOTHING compared to the hurdles people living with a disability face every day. A great place to begin is for your organization to create an inclusivity policy that provides equal opportunity for people who may have been marginalized in the past. Make an effort to enhance diversity and ensure an employee’s opportunity regardless of background.

People-First Language—This might be a small shift in habit, but it is important to be aware of how meaningful it is. By using people-first language, we put the individual before the description (diagnosis, gender, race, etc.) and describe a characteristic of the person and not what the person is. Saying someone is a spinal cord injured woman is not putting the human being first. Respecting the individual would be to put them first and state, she is a woman with a spinal cord injury. I understand that this can be a little tricky when using the term Disabled—some prefer to use ‘Disabled people,’ referring not to medical impairment, but to barriers set up by society that limit people. This language can serve to bring a diverse group of people together and communicate shared experience with the goal of creating social change.

There are other words or ideas that were once new and are now a part of how I make decisions. Are we creating an environment with equity versus equality? If it’s equal, I have given the same 6” box to everyone to help them see over the fence, no matter how tall you are or if you’re sitting in a wheelchair. If I am focused on equity, then I’d provide each person with a box tall enough, specific to their needs, to see over the fence. What about the word trust? When making decisions for the Neilsen Foundation, we build trust by seeing and working with our grantees as our partners, recognizing that accountability must go both ways. This helps us grow relationships and foster collaboration. In the world of applications, reports, and budgets, operationalizing how organizations can trust each other can be difficult on many levels. It requires a change in thinking, and then, a change in behavior. I hope you will think of how good it felt the last time someone trusted you and find a way to apply that to your institutional or corporate relationships.

I consider myself to be a thoughtful ally. I genuinely care about the people in my community, I am authentic in my interactions, and I do my best to make values-based decisions. But that is not enough. In the process of writing this piece, I’ve learned more about things I didn’t know I didn’t know. In 2024, I encourage you to look harder at the words you’re hearing and find opportunities to let these ideas influence your behavior. No doubt, there is a place where you can use your voice, power, or position to help move us forward in fighting Ableism, building equity and trust, and empowering relationships. So, let’s examine those nursery rhymes. How about “Itsy Bitsy Spider?” Resiliency at its best.

On behalf of the entire Neilsen Foundation family, we wish you a happy and healthy holiday season!

Craig H. Neilsen Foundation staff in a patio setting

 

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Kym Eisner, Executive Director

$7.1 Million Awarded in Creating Opportunity & Independence Grants

November 15, 2023

A smiling blonde woman sits sideways on a wheelchair as she shows off new accessible fashion items, including knee-length brown boots
Funding helped the University of British Columbia realize its FashionABLE event

Over 70 organizations serving people affected by and living with spinal cord injury (SCI) have been awarded a total of $7.1 million in Community Support Grants from the Craig H. Neilsen Foundation’s Creating Opportunity & Independence (CO&I) portfolio.

These grants fund everything from rehabilitation and independent living to assistive technology, education, and arts, sports and recreation. As a result, the breadth of CO&I is vast, and the grants help to underpin the Neilsen Foundation’s mission to support programs improving the lives of those living with SCI. Our grantee partners are offering improved self-sufficiency for people with SCI—for example, by providing them with service dogs and driver rehabilitation programs. Funding also helps to educate medical staff, so they can provide primary-level rehabilitation for the underinsured, and infrastructure that enables organizations to enhance their assistive technology.

“Our partner organizations are working hard to improve opportunities for individuals with SCI.”  CO&I Program Officer Darrell Musick explains. “We received a strong cohort of applications with impressive project outcomes.”

Seeking to build relationships, Foundation staff works to establish easy communications and we welcome questions from applicants. We want everyone applying to propose work that advances their mission and ours. Recognizing that preparation of an application costs an organization time and energy, we aim to provide detailed instructions and support throughout the process. Staff-led webinars offer organizations in the process of applying an opportunity to reach out if they have questions or concerns.

In 2020, with the help of the Center for Effective Philanthropy, the Neilsen Foundation conducted its first grantee perception survey. Grantee comments about the limitations of single-year funding led to a program shift the following year when we extended the allowable grant length—inviting both one- and two-year applications. This option not only offers flexibility, but it also enables organizations to propose high impact projects that may be of broader scope or duration, while cutting back on administrative time. As a result, we have seen a significant uptick in the Independent Living category.

Darrell adds, “The two-year option is helping organizations focused on independent living to increase support for people with SCI by providing ongoing care during their early transition from rehabilitation to home, as well as transportation and accessibility to their living spaces.”

Community Support Grants are focused on enhancing an individual’s quality of life on a daily basis. Whether it’s a project to acquire new technologies or provide equipment, or an arts program that allows for greater accessibility, these grants are incredibly meaningful for the people they touch. Understanding life through the lens of SCI can be difficult for some, but the passion coming from our grantee partners paints a beautiful picture of what’s possible.

Understanding Psychosocial Research

November 15, 2023

Two women laugh as they discuss an exercise schedule at a table.
Health and wellbeing counseling

The Neilsen Foundation first invited Psychosocial Research (PSR) applicants in 2013. Since then, we have awarded over 130 grants for a total of nearly $36 million. But what is psychosocial research? And what impact could it have on people with spinal cord injury (SCI)? As we celebrate the 10-year anniversary of the portfolio, let’s take a deeper dive into this multi-faceted idea to better understand what PSR is.

When thinking about research, laboratories full of test tubes and scientific instruments come to mind—but PSR is different. It’s about understanding what people face after SCI and how their social interactions and participation in daily activities change. As this is a scientific area, the terminology can be pretty mysterious, for example, “studies of the ways in which psychic experience and social life are fundamentally entangled with each other” is one definition found on the internet. But what exactly does that mean?

Put more simply, this kind of research attempts to identify where people are in their journey and what barriers they face. Our grantee partners focus on mental health concerns that people living with SCI may face, like depression or loneliness, but also the mindsets that give a person resilience and coping skills. The “social” part of the research looks at the interpersonal and environmental factors that influence people’s wellbeing—the ability to fully participate in one’s chosen activities being key. The goal is to discover methods to help individuals with SCI by looking at the whole person, identifying ways to ease the transition back into daily life in an unfamiliar body, and to find ways to help them meet personal goals.

PSR scientists are led by input from the people living with the injury and their caregivers. Their studies often involve interviews and focus groups that allow people to express how they experience the impact of SCI—everything from health behaviors to lifestyle, as well as interactions with family members. Researchers ask questions about what is important to the SCI community, try to identify societal and physical barriers to full participation, and observe reactions to new approaches designed to help overcome physical or emotional challenges.

Topics of study in PSR are far-reaching. They include affordable and accessible housing, intimacy with partners, disability identity, employment, social isolation, pain management, and much more. When focusing on physical health, researchers also delve into concerns about pregnancy, weight gain, bowel care and bladder management, sleep disorders, and blood pressure regulation.

The goals of research supported by the Neilsen Foundation go beyond studying the issues. The aim is to develop strategies, tools, and therapies that will help people with SCI gain the confidence and skills they need to reach their personal goals. The hope is to help people take the best care of themselves as they navigate and overcome the barriers SCI puts in their path.