Why Research Matters 2023

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More information about this is available on our website.

Acknowledgement of country The Spinal Research Institute acknowledges the Traditional Owners of the land on which we work, the Wurundjeri People of the Kulin Nation.

We pay our respects to Elders past, present, and emerging.

Contents Introduction Disclaimer Acknowledgement of country About the Spinal Research Institute Spinal cord injury facts A message from our CEO 2023 SCI Research Writing Prize Judging panel

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Winning Entries Judges’ Choice Let’s talk about sexuality and intimacy for women with spinal cord injuries Merna Seliman, Canada Using technology, education and outreach to empower people with spinal cord injuries to access urological and sexual health care in the context of low and middle income countries Dr Dinesh Suman, India Reviving hope: innovative approaches to healing spinal cord injuries Leena R. Chaudhari, India Huff, puff, zap! Exciting alternatives to help movement and blood pressure after a spinal cord injury Chiettha Prajnadewie, Australia A new way to look at the spinal cord Juan Pablo Appelgren Gonzalez, Chile Anxiety following spinal cord injury: why we all need to be aware and concerned Dr Jane Duff, United Kingdom The balancing act: life after spinal cord injury Shefali Walia, India Combining spinal stimulation and task practice for recovery of arm function Dr Antonio Capozio, United Kingdom Playing your part: simulation training to enable meaningful conversations with people living with spinal cord injury Alyse Lennox, Australia How do adults who acquired a spinal cord injury in childhood function in their community? What is the status of their physical and mental health?

Bethi Akther, Bangladesh Fallen warriors: lessons from rugby-related spinal cord injury in Australia Dr Nicole Merrick, Australia Afterwords Why Research Matters - Previous Editions The Spinal Research Institute’s Programs

Author locations

Canada Merna Seliman Chile Juan Pablo Appelgren Gonzalez United Kingdom Jane Duff Antonio Capozio

India Dinesh Suman Leena R. Chaudhari Shefali Walia

11 authors 6 countries

Bangladesh Bethi Akther

Australia Chiettha Prajnadewie Alyse Lennox Nicole Merrick

About the Spinal Research Institute The vision of the Spinal Research Institute is to improve health outcomes and quality of life for people with spinal cord injury.

People with a spinal cord injury face many challenging secondary health complications that diminish their quality of life and capacity for independence. By building global collaboration in spinal cord injury research and clinical trials we aim to reduce the length of time it takes to achieve significant and translatable research outcomes.

Our work supports research collaboration and knowledge sharing, and actively involving people with lived experience of spinal cord injury in the research process to improve research relevance.

Effective multi-centre studies

Reduced research timeframes

Improved research relevance

Increased research collaboration Improved health outcomes and quality of life for people with SCI

Our goal

Spinal cord injury facts Every year, around the world, 250,000 to 500,000 people experience a spinal cord injury.

People with a spinal cord injury are two to five times more likely to die prematurely than people without a spinal cord injury. Survival rates are lower in low-and-middle-income countries.

Spinal cord injury is associated with lower rates of school enrolment and economic participation, and it carries substantial individual and societal costs.

The majority of spinal cord injuries are due to accidental or preventable causes such as road traffic crashes, falls and violence.

Spinal cord injuries can also occur due to medical reasons such as tumours, bleeding into the spinal canal and infections.

Secondary health conditions Spinal cord injury affects much more than a person’s ability to walk; there are many secondary health conditions that can impact a person’s life.

This publication illustrates the importance of diverse research in improving quality of life for people with a spinal cord injury.

Mental health issues such as • depression • anxiety

Social issues such as • marginalisation • pressure on relationships • barriers to education and employment

Physical conditions such as • recurrent bronchitis and pneumonia • sleep apnoea • blood pressure fluctuation • recurrent urinary tract infections • muscle wasting • osteoporosis • impotence and infertility • pressure sores • bowel dysfunction

A message from our CEO Welcome to the fourth edition of ‘Why Research Matters’, a compilation of the winning entries from the Spinal Research Institute’s (SRI) Spinal Cord Injury Research Writing Prize 2023.

This edition features a wide range of research interest areas, from sexuality and intimacy for women with spinal cord injury, to virtual-reality based balance training, to 3D-printed spinal cord grafts. Thank you to all the researchers who submitted a piece to this year’s Writing Prize and congratulations to the winning entries.

This year I was part of the judging panel, and I would like to acknowledge and thank my fellow judges, who volunteered their time and expertise to assess the Writing Prize submissions.

The objective of ’Why Research Matters’ is to demystify and share the important and diverse work happening around the world in the field of spinal cord injury research – this year we feature authors from five continents. It provides a forum for researchers to showcase their research outside of traditional academic publications and enables engagement with the community through an accessible, ‘storytelling’ format.

The SRI is continually exploring ways we can share research-related information with a wider audience, and online and digital media is an important channel for this. We’re excited to provide this online publication as a way for researchers to share their work with peers, clinicians, the spinal cord injury community, and the broader public.

Happy reading!

Kristine Hendry CEO, Spinal Research Institute

2023 SCI Research Writing Prize We asked spinal cord injury researchers and clinicians to write up to 800 words about their research in a creative way that would appeal to a broad-ranging, non-scientific audience.

The entries had to be easy-to-understand and compelling pieces about published or in-progress spinal cord injury research for a non-scientific readership.

The written pieces had to answer the following questions: • Why is the research important?

• Why does it interest you (the author)?

• Why should it interest the reader?

The Spinal Research Institute is committed to supporting researchers and clinicians from diverse backgrounds. Since 2022, we have offered special consideration and additional language support to authors from countries with low to very-low English language proficiency based on the EF English Proficiency Index.

We asked the judges to indicate whether they thought these entries would merit publication with additional language support. This publication includes two such entries.

Prize details All shortlisted entrants receive a place in a workshop that explores research translation and impact, facilitated by Australian course provider Research Impact Academy.

All shortlisted entrants have their writing featured in this publication. Their work will be shared and promoted through the SRI’s networks.

Assessment criteria Entries were subject to a blind judging, where the writers’ names were not known to the judging panel.

The judging panel considered the following questions.

• Does the written piece convincingly explain why the research matters?

• Is the research explained in a way that is easy to understand?

• Is the piece compelling to read?

Judging panel Dr Emily Bray Research Fellow, The Hopkins Centre, Griffith University, Australia Emily qualified as a social worker after her experience in rehabilitation following a spinal cord injury over 10 years ago. Since then, Emily has worked in clinical and community-based settings to support individuals with disabilities to thrive in life by addressing their health and psychosocial needs.

In 2023, Emily completed her PhD which used participatory and co-design research approaches to develop an intervention focused on supporting young people with spinal cord injury transition between paediatric and adult healthcare. During this time, Emily worked with young people, their parents and health professionals to develop the SCI Healthcare Transition website.

Emily now works as a Research Fellow at the Hopkins Centre, Griffith University conducting research on rehabilitation trajectories for people with acquired brain injuries and spinal cord injuries. In addition, Emily works as a social worker with Spinal Cord Injuries Australia (SCIA) developing and running their suite of resilience programs.

Stephen Muldoon Independent Consultant, Rehabilitation system strengthening and organisational strategy development and implementation, Ireland A qualified nurse with an MSC in Development Management, Stephen has worked for almost 30 years in low-middle income countries. His focus area has been the establishment and strengthening of comprehensive and sustainable SCI healthcare and rehabilitation services in Nepal, Bangladesh, Sri Lanka, Myanmar, Mongolia and Ukraine.

Stephen is a founding member of the Asian Spinal Cord Network (ASCoN) and has supported the development of regional SCI networks in Africa, Middle East and Latin America – Caribbean.

He Chaired the ISCoS Education Committee for the past six years and was instrumental in establishing major global educational initiatives including www.elearnsci.org.

Kristine Hendry CEO, Spinal Research Institute, Australia Kristine’s role at the SRI draws together her background at a Global 500 technology company, her experience in the not-for-profit sector, and a desire to make a positive social impact. Kristine worked for 15 years at Hewlett-Packard, managing large-scale engagements for clients in a diverse range of industries. She held leadership positions in account management, program management and business development. Prior to joining the SRI, Kristine worked in event management at MS Research Australia; as well as volunteering to provide fundraising, events and marketing services to a number of charities and organisations in her local community.

Let’s talk about sexuality and intimacy for women with spinal cord injury Merna Seliman, Canada Imagine that you are at the hospital. You are told that you have a Spinal Cord Injury (SCI).

Your life is forever changed. Your body feels foreign to you. Your sense of self changes. You wonder how others look at you and perceive you. You wonder if you are still sexy. If you have a partner, you wonder if they still want to be with you. If you do not have a partner, you wonder if you will ever experience the joy of sex and intimacy with someone. None of your healthcare providers bring up the topic of sex with you. You start thinking it must not be possible for you. You start looking for information but resources that meet your needs are nonexistent. Are you the only one thinking about sex? Of course not.

Sexuality is an essential aspect of being human and it is so much more than sexual activity; it encompasses an individual’s sense of self, confidence, and how they feel in their body.

The sexual experiences of women living with SCI have been overlooked. In fact, women living with SCI often report feeling unseen and neglected as sexual beings. Sexuality often plays a minor role in the rehabilitation process compared to other areas of rehabilitation.

So, women leave rehabilitation feeling unprepared for learning how to approach their sexuality after the injury. And if sexual health is brought up during rehabilitation, women are usually told ‘you can get pregnant’ while other important aspects of sexuality such as intimacy, pleasure, and orgasm are never discussed. Practical knowledge and resources about sexuality that target the needs of women with SCI in rehabilitation settings and beyond are sorely lacking. As a result, women often struggle for years and resort to trial and error to explore what works for them. This can sometimes contribute to a sense of frustration, dissatisfaction, and the loss of relationships and marriages after the injury. Many women with SCI decide to give up on intimacy and relationships altogether.

Judges’ Choice

Our research aimed to explore the lived experiences and needs of women living with SCI related to sexuality and intimacy. We also wanted to document the features of the intervention that women with SCI would hypothetically design. We asked about topics important to them, skills they would like to learn, ideal duration of sessions, and who they would like to deliver the sessions as part of the intervention.

To accomplish the aims of this research, we worked collaboratively with an advisory team comprised of women with SCI and clinicians to gather their insights and expertise about sexuality resources and services. We developed the research question as well as the interview questions in collaboration with this team.

We also conducted interviews with women with SCI individually to explore their lived experiences and sexuality-related needs in depth. We recruited women with SCI through community non-profit organizations such as SCI Ontario who is a partner on this study.

Our findings show that sexuality is a critical part of women’s identity and presence in the world. They emphasized that the injury did not define them as women. They also discussed the value of sexuality as a powerful tool to experience deep connection and intimacy in their relationships. Women with SCI expressed a need for practical, ‘non-clinical’ information they could apply in everyday life on topics such as menstruation, birth control, creative ways to explore the body, how to experience pleasure and orgasm after the injury, communication skills in relationships as well as education on assistive devices and sex toys that may enhance their experiences. They wanted this education to be delivered in a series of sessions in a group-setting to allow for learning with and from other women.

What’s next? We will work with the advisory team on designing and implementing an intervention that is informed by the needs and desires that the women expressed during the interviews. Our vision is for the developed intervention to be used as part of a sexual health education program for women at the rehabilitation hospital where the study was based as well as other rehabilitation settings.

We will also share the intervention and accompanying resources with SCI Ontario to make this information readily available to women with SCI in the community. This research represents a major contribution to the area of sexual rehabilitation after SCI since, to our knowledge, our study is the first to involve women with SCI in the development of a sexual health intervention.

We will leave you with this: Every single woman who has participated in the study expressed gratitude that this research was being done.

We have never felt more honoured to be doing work that women with SCI truly value and need.

Acknowledgement: We are deeply grateful to the St. Joseph’s Health Care Foundation for funding this research project.

Image provided by author

Merna is a PhD Candidate in Health and Rehabilitation Sciences at Western University. Her area of research is sexual health after Spinal Cord Injury and other neurological disabilities.

She is interested in developing and implementing sexuality interventions that would contribute to sexual satisfaction and intimacy for women and couples. She completed a Masters of Science at Brock University which focused on the impact of a mindfulnessbased intervention on sexual satisfaction among couples living with neurological disabilities.

Using technology, education and outreach to empower people with SCI to access urological and sexual health care in the context of low & middle income countries Dr Dinesh Suman, India Spinal cord injuries (SCIs) were historically regarded as untreatable afflictions, but lessons from past conflicts across the world during the last Century revealed the importance of addressing urinary issues in SCI patients.

Although strides in scientific understanding have reduced urinary-related deaths in the Western world, India still grapples with alarming rates of neglect. Urinary complications afflict over 75% of SCI patients, leading to repeated illnesses and fatalities in nearly 15% of cases. Additionally, cultural and religious factors, alongside discomfort and lack of awareness, contribute to over 95% of SCI patients not seeking assistance with sexual and fertility concerns. This leads to psychological distress and impaired self-confidence.

At our neurourology department, we have embraced a blend of technology and compassion to transform the lives of SCI patients. Through the education website for SCI bladder care, we have pioneered an innovative approach to addressing urinary and sexual health concerns. By utilizing social media platforms such as YouTube, Instagram, LinkedIn, and WhatsApp, we ensure comprehensive outreach. The center also employs real-time service data and telehealth solutions to overcome barriers to accessing SCI care.

The Role of Technology and Education The Neurourology Department plays a pivotal role in using technology and education to extend its reach. Central to this effort is the scibladder.com website, a hub of information that equips SCI patients with resources to tackle urinary and sexual health matters. The user-friendly interface of the website grants access to articles, videos, and testimonials,

empowering patients to navigate the intricacies of their condition. In an era where information is at our fingertips, scibladder.com transcends geographical boundaries, offering insights into self-care, psychological well-being, and intimacy – often neglected in conventional healthcare settings.

Harnessing Social Media for Outreach Recognizing the power of social media, we strategically leverage platforms like YouTube, Instagram, LinkedIn, and WhatsApp. The YouTube channel hosts a range of videos, from expert interviews to success stories of those who have conquered SCI challenges. These videos provide practical advice, dispel myths, and foster a sense of community, alleviating the isolation SCI patients often feel. Instagram and LinkedIn amplify this effort with bite-sized content that resonates widely. These platforms encourage dialogue, shared experiences, and a nurturing space for patients and caregivers.

WhatsApp integration allows real-time engagement, promptly addressing queries and concerns. This personalized interaction fosters trust and eases anxieties.

Real-Time Service and Empowering Informed Decisions Our endeavor sets itself apart with its commitment to transparency and up-to-date data sharing. The center provides current statistics on services, outcomes, and patient experiences. This information empowers SCI patients and their families to make informed choices about their care. Armed with knowledge of success rates, complications, and patient stories, individuals approach their treatment journeys with confidence.

Telehealth and Teleconsultation Geographical constraints often impede SCI patients’ access to specialized care.

Our neurourology department counters this challenge through telehealth and teleconsultation services. Virtual appointments facilitate direct communication between patients and expert healthcare providers, removing the need for travel and physical discomfort. This approach democratizes quality healthcare, ensuring even those located in remote areas can access specialized medical guidance.

A Team of Dedicated Professionals The success of the neurourology department at our institution hinges on its devoted team, comprising medical experts, content creators, support staff, and more. This collective commitment propels the success of scibladder. com and the center’s social media presence.

Professionals inject empathy, expertise, and a zeal for tangible change into SCI patients’ lives.

Their collaboration ensures the information disseminated is accurate, up-to-date, and truly impactful.

Conclusion The Neurourology Department and the educational website initiative epitomize a transformative healthcare paradigm. By embracing technology, education, and inventive outreach, our neurourology unit tackles multifaceted SCI challenges. Integration of YouTube, Instagram, LinkedIn, and WhatsApp expands its reach, nurturing a supportive virtual community. Real-time service data and telehealth solutions dismantle barriers, while

Image provided by author

Dr Dinesh Suman, a dedicated neurourologist at the Indian Spinal Injuries Centre, India, pioneers transformative healthcare solutions.

Fueled by a passion to bridge gaps in SCI care, Dr Suman harnesses technology for impactful outreach. Through telehealth, education, and awareness initiatives, they empower SCI patients to overcome healthcare limitations. Dr Dinesh Suman’s innovative spirit and commitment to enhancing urological and sexual health redefine care paradigms, creating a brighter future for those navigating SCI challenges. our team`s dedication guarantees holistic care provision.

In a tech-reshaped healthcare era, our neurourology department stands as a pioneering force that recognizes digital tools’ potential to revolutionize patient experiences.

As we evolve, it exemplifies the possibilities at the intersection of technology, education, and compassionate healthcare delivery.

Reviving hope: innovative approaches to healing spinal cord injuries Leena R. Chaudhari, India Imagine a world where spinal cord injuries, one of the most devastating conditions a person can experience, are no longer a life sentence of paralysis. Picture a future where regaining mobility and independence after such injuries is not just a dream, but a reality. This is the exciting promise of our groundbreaking research: the development of spinal cord grafts that can bridge complete spinal cord injuries and facilitate the restoration of connections within the damaged spinal cord. In this article, we will explain the significance of our research and its potential to revolutionize the treatment of spinal cord injuries.

Spinal cord injuries can be life-changing. They often result in paralysis, robbing individuals of their ability to move and carry out daily activities. Unlike some other tissues in our bodies, the central nervous system (CNS), which includes the spinal cord, has limited regenerative capacity. This means that when spinal cord cells are damaged, they struggle to repair themselves, leaving patients with longlasting or permanent disabilities. Just as a lock requires a key to open, cells need signals from neighboring cells to initiate the healing process.

In the case of the spinal cord, these signals are often insufficient, making regeneration challenging. Our research seeks to address this issue by developing innovative spinal cord grafts that can provide the much-needed support and signaling for the healing process to begin.

We have pursued two exciting approaches to develop our spinal cord grafts. The first method involves decellularization, a process that removes cellular components from the spinal cord while preserving the extracellular matrix.

To turn a house into a playground, just like we do with the spinal cord using decellularization, we remove all furniture and decorations, leaving only the walls and floors. This is similar to extracting all cells from the spinal cord, leaving behind the extracellular matrix,

acting as a scaffold for new cells to thrive. It’s like kids transforming an empty house into a playground. This matrix serves as a natural scaffold, providing structural support and crucial signaling cues for cell regeneration.

The second approach leverages 3D printing technology and tissue-specific bioink.

This cutting-edge technique allows us to create grafts that closely mimic the native spinal cord’s structure and composition. By replicating the intricate network of cells and signaling pathways, we aim to provide an ideal environment for regeneration. Creating spinal cord grafts with 3D printing is simple. We begin with a unique “ink,” not for writing, but for 3D printing. This ink replicates the spinal cord’s structure. Using an advanced 3D printer, we meticulously layer this ink, forming a threedimensional structure resembling the actual spinal cord. Think of it as constructing a model house with special Lego blocks. The outcome is a 3D-printed graft mimicking the spinal cord’s shape and structure. When placed in a damaged spinal cord, it serves as a piece of the puzzle, aiding the body’s natural healing process by providing the necessary structure and signals for cell regeneration and repair.

Our research has yielded promising results.

Our spinal cord grafts have demonstrated several key characteristics: Biocompatibility: Our grafts are well-tolerated by the body, reducing the risk of rejection and inflammation.

Biodegradability: Over time, the grafts naturally break down, ensuring that they do not become a permanent fixture within the body.

Regeneration Promotion: The grafts actively promote the regeneration of damaged spinal cord tissue, fostering the reconnection of neural pathways. In animal models, particularly rats, we have observed significant functional recovery within just weeks of implanting our grafts. This exciting development suggests that our alternative treatment approach holds the potential to become a game-changer in

the field of spinal cord injury treatment. The implications of our research are profound. If successful in human trials, our spinal cord grafts could represent a groundbreaking leap forward in spinal cord injury treatment. Patients who were once resigned to a life of paralysis may regain mobility and independence. The burden of care on families and healthcare systems could be significantly reduced, and the quality of life for countless individuals could be greatly improved.

In the realm of spinal cord injuries, hope has often been in short supply. However, our research offers a glimmer of optimism in an otherwise challenging landscape. By developing spinal cord grafts that can bridge injuries, promote regeneration, and facilitate functional recovery, we are on the cusp of a medical breakthrough that could change lives.

While there is still much work to be done, the potential for our alternative treatment to become the future medicine for spinal cord injuries is a beacon of hope that shines brighter than ever. Together, we may unlock a future where paralysis is no longer the everlasting condition it once seemed to be.

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I am a dedicated Ph.D. student and Junior Research Fellow at D.Y. Patil Education Society in Kolhapur, where I passionately pursue cutting-edge research in my field. My academic journey is enriched by the prestigious support of the Lady Tata Memorial Trust fellowship, Mumbai, whose funding has been pivotal in advancing my research endeavors. With a profound commitment to making meaningful contributions to science and society, I am driven to explore innovative solutions and address critical challenges in my field.

Huff, puff, zap! Exciting alternatives to help movement and blood pressure after a spinal cord injury Chiettha Prajnadewie, Australia In a single day, how many groups of muscles do you use to breathe, move and work? From the diaphragm, the biceps brachii, the quadriceps and the rectus abdominis muscles, every single movement you make in a day requires the help of one or more muscles to execute. In the intact spinal cord, neurons, which are like the couriers of the nervous system, ensure that messages are being communicated from the brain throughout the body to coordinate normal body function.

After a spinal cord injury (SCI), however, some of these neurons become injured and disrupt the courier services that help communicate neural messages of the brain, spinal cord, organs and limbs. As a result, different muscles ranging from the legs, the hand and the respiratory muscles inside the chest and abdomen can become paralysed alongside disruptions to other functions in the body including the management of blood pressure.

What does this mean? It means that to a person with a SCI, using the hand to move or hold items can be difficult to coordinate. It can also mean that they struggle to cough, which increases their risk of developing respiratory infections such as pneumonia. It can also lead to experiences of dizziness upon sitting up which can prevent people with SCI from getting through their daily activities.

Now, what if there was a non-invasive, short and simple intervention that could help with these?

Under the supervision and help of Prof Jane Butler, Dr Euan McCaughey, Prof Simon Gandevia, Dr Anna Hudson and Dr Anne Palermo at the Spinal Cord Injury Research Centre (SCIRC) at Neuroscience Research Australia (NeuRA), my research looks at interventions that fulfil the criteria of

being short, simple and non-invasive: acute intermittent hypoxia and abdominal functional electrical stimulation.

Acute intermittent hypoxia is the administration of low oxygen gas mixtures intermittently with normal oxygen gas that acts similarly to high altitude training for athletes.

Yes, you read it right – low oxygen levels (hypoxia), not high oxygen levels (hyperoxia).

As I and many have found intriguing, it appears that despite the role of hypoxia in neuronal death, hypoxia in itself is a two-sided coin that can affect the body both beneficially or detrimentally depending on its time, frequency and dosage. Previous research suggests that by simply breathing in and breathing out periodic, 1-to-1.5-minute episodes of lower oxygen gas mixtures intermittently with normal oxygen gas, the serotonergic system within the body which promotes learning in the nervous system is stimulated to increase excitability in the spinal cord. Simply said, we assist the couriers of the nervous system (neurons) to deliver messages through the disrupted highway (the injured spinal cord) by providing a training regime that ultimately empowers these neurons. The increased excitability in the spinal cord can be translated into greater voluntary muscle control that can help people with a SCI use their hands and legs to hold, grip, push and pull things more effectively. One of the challenges which we currently face is now to finetune the gas mixtures to the quantity that is required for optimal learning in the nervous system. Fortunately for us, testing the effects of the different gas mixtures is relatively simple and non-invasive. Participants are asked to contract their hands or legs against a force transducer that picks up their force while they are given an electrical current during and after the contraction. The current stimulates the nerve that innervates the targeted muscle and

is strong enough to produce a contraction of the entire muscle. By comparing the forces produced by the stimulus during and after contraction, we can estimate the extent which an individual is able to voluntarily tell a muscle to move. By also comparing how well individuals are able to voluntary move their muscle before and after the intervention, we are able to examine how acute intermittent hypoxia affects motor function in people with a SCI. Abdominal functional electrical stimulation is another simple, easy-to-execute intervention which targets nerves of the abdominal muscles.

The abdominal muscles are well-known for their role in expiration and cough production, and due to its innervation points, are commonly affected by a SCI. Abdominal functional electrical stimulation can help these partially or completely paralysed muscles contract through an external source of electrical current that is delivered through electrode pads placed over the skin of an individual’s abdominal area. Interestingly, abdominal functional electrical stimulation appears to not only benefit expiration but also blood pressure management. By assessing how abdominal functional electrical stimulation affects blood pressure during postural changes, we aim to identify its potential as an intervention targeting multitudinous impediments of SCI.

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Chiettha Prajnadewie is a PhD candidate of the University of New South Wales completing her research project under Professor Jane Butler and Dr Euan McCaughey at the Spinal Cord Injury Research Centre at Neuroscience Research Australia. Her projects focus on exploring interventions to improve respiratory, motor and autonomic control in people with SCI. Prior to SCI research, she was involved in neuropathic pain research looking at a microfluidic device to model the effects of algesic factors in the periphery on central microglia.

Huff. Puff. Zap! Hopefully with these 3 simple components, alternative treatment methods can be identified to improve some small but very significant aspects in the lives of people with an SCI.

A new way to look at the spinal cord Juan Pablo Appelgren Gonzalez, Chile Imagine a world where something as simple as a fall or an accident could change your life forever. That’s the reality for millions of people who suffer from Spinal Cord Injuries (SCIs) each year. These injuries can lead to major health challenges and dramatically affect how people live.

But here’s the good news: researchers are working tirelessly to find better ways to understand and treat SCIs. And they’re doing it in a way that’s easy for all of us to understand.

Why Spinal Cord Research Matters You might be wondering, why should we care about spinal cord research? Well, it matters for a lot of reasons. First of all, SCIs can happen to anyone, and they can be life-changing. So, finding better ways to help people who have been injured is a big deal.

Understanding how our spinal cords work is like unlocking a secret code to better health.

Our spinal cords are like superhighways of information between our brains and the rest of our bodies. When something goes wrong with this highway, it can cause all sorts of problems.

In this work, we are using a cool new tool called functional near-infrared spectroscopy, or fNIRS for short, to learn more about our spinal cords. This technique helps us to see what’s happening inside our bodies without surgery or other invasive or painful methods.

How we are doing this We are a multidisciplinary research group from Chile that used fNIRS to study the spinal cords of people who had suffered traumatic SCIs. We applied a gentle electrical stimulation on the surface of the wrist to trigger a response in the spinal cord. Then, fNIRS measures this response by applying light on the patient’s back, so we can watch how the spinal cord reacts.

What we found The results were pretty amazing. We discovered that fNIRS could spot differences between healthy people and those with SCIs. Differences in the magnitude of the response, the latency, which is time that the neural response endure until its basal status, and other exploring and novel parameters.

We also found that the level and location of the injury in the spinal cord made a difference in how it reacted. This information can help rehabilitation teams tailor treatments to each patient, which is a big step forward.

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We discovered that functional near-infrared spectroscopy could spot differences between healthy people and those with SCIs. Differences in the magnitude of the response, the latency, which is time that the neural response endure until its basal status, and other exploring and novel parameters.

Why it’s exciting This research is exciting because it could give us a new way to understand and treat spinal cord injuries in the near future. With fNIRS, health teams can look inside our bodies and see what’s happening in real-time complementing current imaging tools. This means we could make better decisions about how to help people recover from SCIs. In the future, this tool could be used not just for diagnosis but also to track how well treatments are working. Follow up with the medications, and maybe predict how someone’s recovery will go in different settings.

So, remember, even though spinal cord research can sound complex, it’s all about finding better ways to help people who need it most. And that’s something we can all get excited about!

Thanks for reading!

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Juan Pablo is a neurological physical therapist based in Chile. He is a neurorehabilitation specialist, currently director of clinical research at TRAINFES Rehab Center, associated researcher of the Biomedical Imaging Center and invited professor of rehabilitation in Pontifical Catholic University of Chile and University Finis Terrae. He is also a specialist in the use of rehabilitation technologies for the management of neurological sequelae and intensive care. His research interest is the use of precision care and biomarkers in the rehabilitation prescription.

Anxiety following spinal cord injury: why we all need to be aware and concerned Dr Jane Duff, United Kingdom A sense of threat and anxiety can play a significant role in many people’s lives; worries about the future and one’s resources and ability to meet an oncoming demand are common.

Such concerns are significantly greater following an unexpected/unpredictable life event such as spinal cord injuries or disorders (SCI/D) and can challenge people’s basic beliefs and ‘assumptions’ about their ability to cope, sense of who they are as a person, their purpose and societal contribution, their relationship with the world as a safe place, and beliefs in the benevolence and trust of others.

These are just a few of the psychological factors that can be present and influence the development of symptoms of anxiety.

The magnitude of SCI/D and rehabilitation presents new challenges every day, with questions about ‘how do I do X now’ common when people are first injured, which may challenge and reduce someone’s confidence, belief in one’s abilities and increase worry.

If undetected and untreated, symptoms of anxiety with pervasive worries may develop, with risk that these become entrenched over time and could be pivotal in determining someone’s social participation.

Research has shown that people with lived experience of SCI/D consider bladder and bowel management to be areas of significant concern, yet there is a lack of knowledge about how anxiety can impact on developing new skills. Gaining self-management abilities during rehabilitation is one of the greatest contributors to someone’s quality of life. However, research into biological and psychological interactions on rehabilitation gain is in its infancy. I am pleased to be sharing at ISCoS 2023 outcomes from a research partnership which has examined the mediating role that thought processes (appraisals) can have upon symptoms of depression and anxiety in the essential areas of skin and bladder

management. These findings build upon a publication earlier this year concerning the variable impact that psychological need can have upon first-time rehabilitation outcome.

There is a much greater understanding about reduced mood/depression and the role this might play in rehabilitation and transition into community than there is about symptoms of anxiety. This is understandable, as many situations could be seen as ‘normal’ concerns, with the extent of anxiety and its propensity for influencing decisions easily going undetected by healthcare clinicians. An example could be initial hesitancy about going out because of concerns about confidence, and the unfamiliarity of access or toileting facilities.

This could subsequently become generalised to all new and unpredictable places, with worries and excessive planning becoming pervasive, disabling, and leading to the development of an anxiety disorder and vulnerability to major depression. The agreement and recommendation by the ISCoS Psychology Basic Data Set of the Generalised Anxiety Disorder (GAD) scale to assess symptoms of anxiety is a landmark development for psychosocial research, with awareness, knowledge about worldwide incidence, and the impact of treatment becoming possible.

The Data Set has recommended the basic 2-item screen (GAD-2) and, where needed, the advanced 7-item version (GAD-7); these are regularly used by non-psychologists in primary care. It has been my privilege to have been part of this group and recently led a research partnership to share data and publish the first SCI/D paper on GAD clinical thresholds, as well as facilitating agreement for UK psychological health screening using these measures, amongst others. Data from 4 UK services will also be shared at ISCoS 2023.

Another everyday concern, whether someone walks or is a wheelchair user, is fear of falling.

First-time rehabilitation requires someone to relearn how to trust their body and care providers. Many inpatients express their concern about falling during hoisting, transfers, and other activities as they work out these new parameters. Research has found several interconnecting factors contributing to the development of this fear, including biological (balance, spasm, gait, pain, and fatigue) and environmental concerns. Psychological reactions, for example embarrassment and frustration, can confound these factors and result in unintended behavioural consequences, such as inattention, which work to increase the likelihood of falling. There is an absence of research examining the extent to which psychological factors contribute to falls, and I am pleased to be supervising a doctoral dissertation on symptoms of anxiety, fear of falling, and engagement in rehabilitation to aid better understanding of people’s needs.

I believe symptoms of anxiety in rehabilitation are one of the yet unknown contributors to psychosocial adaptation in SCI/D and I am committed to further research. My clinical practice regularly involves cognitive behavioural therapy and mindfulness techniques in the physiotherapy gym and hospital ward. It is my experience that integrated treatment such as this can positively impact upon balance and stride length in walking, and transfer ability in wheelchair users. Examining interventions such as these

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Dr Jane Duff, clinical psychologist, has worked at the National Spinal Injuries Centre, Stoke Mandeville Hospital since 1997. Jane recently established psychological health screening and standards as Chair of the UK and Ireland Spinal Cord Injury Psychologists Advisory Group and currently Chairs the European Spinal Psychologists Association and ISCoS Psychosocial Special Interest Group and is a member of the Psychology Data Set Group. Jane has led national and international research projects and supervises postgraduate research for the University of Oxford.

are one of the many areas for exciting future research, from which we can promote better understanding about anxiety, physical and psychological health for those with SCI/D.

The balancing act: life after spinal cord injury Shefali Walia, India Spinal cord injury (SCI) is globally one of the most life-altering injuries of the nervous system resulting in permanent neurological deficits, functional impairments, and abrupt change in the quality of the person’s life. It may lead to a profound disability with negative physiological, physical, or psychological sequelae and restricted employment opportunities even after the individual has reintegrated into community living. Basic tasks such as standing and walking that most of us perform effortlessly, either become unattainable or significant lifetime goals for individuals with SCI. These physical restrictions profoundly impact emotional well-being, hinder social interactions, impede independence and hence act as a potential threat to the quality of life of those grappling with SCI. Balance is one of the most important factors affecting walking in chronic SCI individuals, other than impairments in muscle strength, sensation, and abnormal muscle tone, and is often ignored during rehabilitation. Research specifying effective balance training protocols for individuals with incomplete SCI is limited with no consensus on the optimal method, timing, intensity, or frequency of balance training. In recent times, virtual reality (VR) has shown promising potential in retraining balance in individuals with neurological impairments.

VR-based rehabilitation programs offer better engagement, motivation and allow the repeatability of virtual tasks that are believed to be the main mechanisms that bring about significant neuro-recovery. In my doctoral work, we have tried to establish the impact of virtual reality-based balance training on muscle strength, Balance, Mobility, and Quality of life of incomplete Spinal Cord Injury patients.

and task-oriented approach was the possible reason for enhancement in muscle strength after VR-based balance training. These findings were not unusual and were also seen in individuals with other neurological disabilities such as Parkinson’s disease and cerebral palsy.

It has been seen that as a result of altered somatosensory tracts, individuals with SCI are less stable and more dependent on visual inputs as it becomes a key source of sensory information to maintain standing postural steadiness. Standing balance shows greater centre of pressure (COP) fluctuations and sway in eyes-closed conditions which might suggest the presence of over-reliance on visual information to maintain balance post-SCI. Virtual reality-based balance training offered the individual greater awareness of the body’s displacements and orientation in space that could have helped him recalibrate the deficient proprioceptive information and compensate for the sensorimotor deficit. The games encouraged exploration and challenged an individual’s limits of stability to a greater extent offering progressive challenge and overload to the postural control system. Participants of VR games experienced greater improvements in Antero-Posterior and Medio-Lateral standing balance.

With the improvements in muscle strength and standing balance, exponential improvements were seen in functional mobility (WISCI II) of all participants in terms of lesser dependency on a device, brace, or physical assistance during walking. Similar gains were seen in the Quality of life scores across all domains (Physical Health Domain, D1; Psychological Health Domain, D2; Social Health Domain, D3 and Environmental Health Domain, D4), We found that four-week-long VR-based thus indicating that VR-based interventions balance training resulted in significant gains in resulted in significant enhancement QOL of muscle strength through targeted exercises and individuals with iSCI. An improvement in the training scenarios. High intensity, repetitive physical health domain of QOL could be due to

the enhancement of lower extremity muscle strength, balance and functional mobility of the individual which in turn further uplifted the psychological well-being of the participant.

Each VR-based intervention session was followed by a 15-minutes of transfer of training to promote the transfer to real-world tasks.

The aim of learning transfer activities practiced at the end of each session was to encourage the stabilization of gain achieved by VR training which could have been a significant contributor to improvements in balance post-intervention and at follow-up.

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We found that fourweek-long VR-based balance training resulted in significant gains in muscle strength through targeted exercises and training scenarios.

Shefali completed her Masters in Physiotherapy (Neurology) and received a Scholarship from the Government of Italy for training at San Raffaele Hospital and the Spinal Injury Unit, Niguarda Hospital, Milan, Italy. She trained at the Human Engineering and Research Laboratory & Centre of Assistive Technology, University of Pittsburgh, USA and is currently working as Associate Professor in Indian Spinal Injuries Centre. Shefali has been involved in more than 40 paper and poster presentations and more than 20 publications in National and International peer-reviewed journals.

Retraining the standing balance is challenging for healthcare professionals dealing with SCI. Virtual reality is a low-cost commercially available therapeutic intervention that offers real-time performance stimulus in a safe environment along with augmenting the participants’ attention and motivation. By application of the findings of this study, the physical therapist may bring about a substantial improvement in the rehabilitation of standing balance for individuals with incomplete spinal cord injuries.

Acknowledgment: This is a part of my doctoral work done under the guidance of Dr. Pragya Kumar, Department of Physiotherapy, Amity Institute of Health Allied Sciences, Amity University Uttar Pradesh and Dr. Chitra Kataria, Principal and Chief of Rehabilitation Services, Indian Spinal Injuries Centre.

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Combining spinal stimulation and task practice for recovery of arm function Dr Antonio Capozio, United Kingdom People living with a cervical spinal cord injury (SCI) rank regaining arm and hand function as their main priority for rehabilitation. However, compared to recent advances made in recovery of walking function, research focusing on arm/hand rehabilitation after SCI is still very limited. Given so, identifying and optimising therapies to promote functional arm and hand recovery is an important clinical, economic and social goal. Functional training, or task specific training of a motor function (e.g. reaching and grasping), is currently the most effective therapy to promote recovery of motor function. In addition, a promising innovative approach is the use of electrical stimulation such as transcutaneous electrical stimulation (TCES) of the spinal cord, which was recently demonstrated to be effective for improving hand grip strength in people with spinal cord injury.

In our study, we compared the effects on hand functions, independence and quality of life of a month of upper-limb task practice completed by itself with a month of upper-limb task practice completed while participants received electrical stimulation at the cervical level. For this study, we recruited a total of five people, all having incurred an injury at least one year before the start of the study (between the levels of C3 and C8).

Participants came to our lab at the University of Leeds for a total of 34 sessions across five months. On the first four sessions, we measured their upper-limb functionality by using the GRASSP (Graded and Redefined Assessment of Strength, Sensibility, and Prehension) tool. We also asked them to complete two questionnaires rating their quality of life and how independent they are in performing a series of daily activities. Finally, we stimulated their brain (with a technique called Transcranial Magnetic Stimulation) and their spinal cord to measure the strength and

efficacy of the connections from the brain and spinal cord to muscles of the upper limb. All these measures taken at the beginning of the study were compared with the same measures assessed half-way and at the end of the study.

Three participants started the intervention with one month (three days per week) of upperlimb task practice and then continued with one month (three days per week) of upper-limb task practice paired with spinal stimulation. The two remaining participants started with upper-limb task practice paired with spinal stimulation and ended with upper-limb task practice alone instead. Upper-limb task practice consisted of completing arm movements and simple activities of daily living such as: drawing shapes, using clothes pegs, grasping and lifting bottles of various weights, gripping ring exercisers.

When electrical stimulation of the spinal cord was paired with task practice, it was delivered with one electrode placed above and one below the level of injury. We asked participants to rate their level of pain while we used stimulation, and all participants could tolerate the stimulation and reported only acceptable levels of discomfort.

After one month of task practice, motor function scores increased by 4 points for the three participants (average increase of 1.7 points per participant) completing task practice alone first. However, motor functions scores increased by 27 points (average increase of 9 points per participant) after one month of task practice paired with stimulation. On the other side, for the two participants for whom task practice was immediately paired with stimulation during the first month, motor functions scores increased by 18 points (average increase of 9 points per participant).

A further month of task practice alone only increased motor functions score by 3 points (average 1.5 per participant). We also observed

functional improvements by the end of our study: one participant could write her signature by hand; one participant reported an increase in core strength; grip force and the amount of weight participants could lift with one hand increased in all participants.

Surprisingly, independence scores decreased by 6 points in the three participants completing task practice alone first but increased by 21 points in the second part of the study after one month of task practice paired with stimulation.

When task practice was paired with stimulation from the beginning, independence scores increased by 2 points and remained constant after one further month of task practice.

Quality of life also increased in 4 out of 5 participants, independently on whether they received stimulation alongside task practice.

Finally, both task practice and task practice paired with stimulation strengthened the connections from the brain to upper-limb muscles.

I am a research fellow at the School of Biomedical Sciences, University of Leeds, UK, where I also obtained my PhD. I am currently investigating innovative applications of non-invasive spinal and brain stimulation to improve arm functions and quality of life in people living with spinal cord injury.

I studied psychology at D’annunzio University of Chieti-Pescara (Italy) and Cognitive Neuroscience at Maastricht University (The Netherlands).

These preliminary findings suggest that combining task practice and spinal stimulation improves manual dexterity and independence more than task practice alone. Non-invasive spinal stimulation combined with task practice

is a promising technique for improving manual dexterity and quality of life in cervical SCI patients.

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Playing your part: simulation training to enable meaningful conversations with people living with spinal cord injury Alyse Lennox, Australia Behavioural researchers work on understanding what drives particular behaviours, and coming up with interventions to produce better behavioural outcomes.

Sometimes, to get better behaviour from others, we need to change our own behaviour, and (most importantly) we need to experience what that feels like.

That experience is the basis of simulation training. We recently worked on a project to enable males under 35 living with spinal cord injury (SCI) to lead their best life. Extensive consultations with young men living with SCI and those who support them found that content is often given to people living with SCI before taking the time to connect and develop a rapport with them.

Who needs to do what differently?

This deceptively simple question is at the core of what we do. Identifying the ‘who’, the ‘what’ and the ‘differently’ all take careful and rigorous research, but in this case, the guiding principle was the phrase, ‘Connection before content’.

In other words, we wanted professionals who communicate directly or indirectly with people living with SCI as part of their role, to develop a genuine connection with and understand what is meaningful to people living with SCI, in order to ensure that relevant information is provided.

So how can we help people gain these skills in dealing with tricky situations? Simulation training.

Real and not real at the same time All forms of simulation training seek to recreate some sensory experience of a given situation in order to practice different skills. Pilots spend many hours in flight simulators before taking off in real aircraft and doctors work with actors trained to present different symptoms

before diagnosing real patients. In both cases, they practice their skills in situations which are both real and simulated; real enough to test themselves, but in a safe context where mistakes provide valuable learnings, not dire consequences.

In this case, we designed an immersive communication skills training workshop, incorporating simulated scenarios and reflective exercises. The workshops were co-facilitated by a trained actor, as well as a creator, director and talented improvisor who also lives with SCI. Participants were placed in simulated scenarios where they re-created a visit to someone living with SCI, but with a complication thrown in. For example, the person living with SCI may have been angry, emotional, distracted by a device or there may have been someone else in the room who was undermining the work of the support person.

The ‘Hot Spot’ In one instance, a participant created a scenario in which they were not only having to communicate with a person living with SCI, but their partner who was in total denial about the true extent of the injury itself. The scenario was simply taking place in a room with chairs in it, but the situation was both real and awkward – how do they communicate with the newly injured young man, but also manage the other person in the room?

After years of experience facilitating these workshops, we know that the true value of simulation training lies not just in being in the ‘hot spot’, but also seeing how others deal with it. They are structured so that solutions are crowd-sourced from the rest of the participants, all of whom have suggestions or insights from their lived experience. We start the role play to simulate the problem, stop

to discuss potential solutions, and give the participant the opportunity to try out their own solution or someone else’s suggestion.

It’s incredibly effective to both see and feel a change in your own behaviour.

This is just the beginning While this was just a pilot study, 100% of participants said they would recommend the workshop to their colleagues and 78% of participants had reported implementing learnings into their current practice. They enjoyed the interactive nature of the workshop and emphasised the importance of having a facilitator with lived experience of SCI, which made the scenarios feel ‘real and natural’.

Just real enough Most of us have had to perform some kind of role play at some stage – and yes, we all feel that it is awkward and ‘unreal’. But when it’s facilitated well, with a group keen to learn and explore solutions, it can provide moments of true revelation and breakthrough. When people agree to push themselves and each other – just enough – the risks pay off.

It doesn’t have to be complicated, but it does have to be real enough for participants to feel the adrenalin kick in, knowing of course that it can stop at any time. It prompts a unique set

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Alyse Lennox is a Senior Research Officer at BehaviourWorks Australia.

She has 12 years of experience in health systems research. She is passionate about qualitative research, particularly applied to the spinal cord injury space and has worked on multiple projects in this area, including exploring experiences with secondary complications following SCI, implementation of a new bladder management model in the rehabilitation setting, and optimising the health and wellbeing of young males living with SCI.

of insights and reflections that may be hard to come by any other way and its impact is real enough to bring about actual change.

How do adults who acquired a spinal cord injury in childhood function in their community? What is the status of their physical and mental health?

Bethi Akther, Bangladesh Spinal Cord Injury (SCI) is a condition that changes a person’s whole life. Their daily lives, education patterns, working ways and possibilities, values at home and in society, self-confidence require a new start and a new approach following SCI. Adults who acquire an SCI may have spent the previous 18 years of their lives typically in the community. They could have moved here and there, gone to school, made friends, visited relatives, played in the playground and done everything that a typical individual does before injury. Suddenly after SCI everything changes. On the other hand, imagine a child who never went to school or maybe just started school and everything is bound by the wheelchair. Some children are bound at home in bed. Imagine a child who was supposed to be exploring play and making friends in the community but is instead being taught to manage pressure sores while in a wheelchair during rehabilitation. How difficult it would be to spend the whole childhood like this before stepping into adulthood. They must be psychologically very strong, right? And they also need to have physical strength to manage themselves in the wheelchair within the community, yes? These things made me think of exploring the “Health Status and Community Functioning of Adults with Paediatric Onset Spinal Cord Injury”.

Centre for The Rehabilitation of the Paralysed (CRP) has been dedicated to rehabilitating persons with SCI for more than 40 years.

Children (18 years or younger) who underwent rehabilitation from CRP from 2013 to 2018 and were adults (19 years or older) at the time of interview in 2022 were selected as the study population. There were 46 participants who joined the study. They all were living in rural

areas of Bangladesh and living with SCI for about 7-8 years.

So, how was their Health Status?

I have used a culturally validated scale named “SF-12 Health Survey Version 2” to understand the physical health status and mental health status. I found that only 4.7% of people had good physical health status while 65.2% people had good mental health status. The remainder were suffering from a range of complications such as joint pain, anxiety, depression, sleeplessness and were dependent on their caregivers for daily activities such as eating, bathing, and dressing. But did you notice one thing? They were physically dependent but had good mental health. How is that? Isn’t it interesting? I feel this gives me another dive to explore the reason behind the physical dependency in a broad range of population and also another dive of how to use that good mental health in their productive life. So, research matters, doesn’t it?

What about their Community Functioning?

The term “Community Functioning” refers to six different domains. They are: physical independence, cognitive independence, mobility, occupation, social integration and economic self-sufficiency. These domains belong to another standardized questionnaire named “Craig Handicap Assessment and Reporting Technique (CHART)- Short form” by which the study explored the status of independence among the selected population.

The study aimed to explore how many of them were independent in the community to function in the above-mentioned domains. Sadly, the number of independent participants was not very significant. The most prevalent domain

was cognitive independence (73.9%), where the least prevalent domain was mobility (13%).

Why does this research matter to me?

Rehabilitation of children with SCI is very important, but community-based rehabilitation needs to expand in Bangladesh. It is very important to follow up the children regularly and address their needs, and barriers toward community participation. This research showed that pediatric onset adults have good cognition but poor mobility. Poor mobility may become a great barrier toward physical health, mental health, community participation and productivity. This research showed that there is a lot to do after institutional rehabilitation. It is also necessary for rehabilitation professionals to advocate for their patients, their needs and the rights of people with SCI living in the community. So research matters a lot.

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I am Bethi Akther, B.Sc. OT, at Dhaka University. I am working as a Clinical Occupational Therapist at Speech Aid Bangladesh, Dhaka, Bangladesh. I have recently graduated from Bangladesh Health Professions Institute (BHPI).

I have become interested in research from the time of clinical placements during my undergraduate study. I want to continue doing SCI research so that I can make a difference in the lives of people with spinal cord injury. I am particularly interested in children, women and older people with SCI.

Fallen warriors: lessons from rugby-related spinal cord injury in Australia Dr Nicole Merrick, Australia ‘You never stop adjusting’ is what one participant told me during interviews for my PhD research. The experience of adjusting after rugby-related spinal cord injury (SCI) continues over the lifetime. While there are important factors which support adjustment after rugby SCI, many also applied to the wider SCI community.

Why is this research important?

Rugby union (also known simply as rugby) is a sport known to have a risk of spinal cord injury (SCI). When a SCI occurs in rugby, it affects the entire rugby community. Though they are a rare occurrence, the level of impairment and the permanence of SCI make them a priority for the sport. Even one is too many.

Rugby governing bodies and those with an interest in the sport have contributed a lot of research to the evidence base around SCI prevention. Less is known about the longerterm outcomes. For my PhD, I interviewed people with rugby SCI to understand the injury experience, longer-term outcomes and highlight opportunities where better support could be provided following injury.

How did we go about the research?

This research sought the injured player’s voice. An advisory group comprised of people who had sustained SCI playing rugby was developed. This group assisted with developing the interview schedule and understanding the results. There were 12 participants with rugby SCI who took part in interviews about the injury experience and longer-term outcomes after SCI.

enjoyed sport for social and physical reasons and considered themselves to be athletic prior to injury. Sometimes this made the process of adjustment after SCI difficult, with many participants describing feelings of grief and loss after being so athletic prior to injury.

Wheelchair sport provided a chance for some people to continue to be athletic and use the skills they gained from rugby participation.

Wheelchair sport also offered other, general benefits to support long-term adjustment.

It facilitated social connections with other people with SCI and informal peer mentoring opportunities. Participants described the value of wheelchair sport in learning how to move on, how to travel and how to navigate life as a person with SCI, from people they met during wheelchair sport. Peer mentoring was considered important to adjustment after injury.

Gaps in support were also identified.

Coordinated, SCI-informed healthcare is important for people with SCI and many participants said the transition from inpatient rehabilitation to home could be improved so that people do not feel like they must figure it all out on their own after discharge.

‘You finish your rehab, they send you on your way... you’re supposed to try and figure everything out which can be hard.’

Participants felt there was a focus on the physical and not enough mental health support provided. There was ample reproductive health support but a lack of sexual health support and participants felt there was a stigma around this aspect of life at times.

What did we find?

After SCI, many participants talked about an adjustment period from the moment of injury ‘For any young man, losing sexual function feels like to the reconstruction of self-identity. Coming your life’s kind of over. I guess – that was definitely from an athletic background impacted this a pretty big blow for me.’ adjustment process after SCI. Most participants

‘Society’s attitude towards disability... it just gets drummed into you that people in wheelchairs don’t have sex.’

The importance of the rugby community was highlighted by almost every participant in this research. When a SCI occurred, rugby clubs rallied; they raised huge amounts of money, built and modified homes, provided equipment, chaplaincy, and support to the families. Many participants continued to find social connections around the sport after injury, maintaining links with their old clubs and meeting up with friends to watch local and professional games.

‘The rugby community is pretty special in terms of rallying as a community. It’s something about the sport that is pretty amazing to be honest.’

Conclusions People who sustain a SCI playing rugby experience a range of physical and emotional concerns, many of which are consistent with the general SCI population. Support which acknowledges the loss of athletic identity and facilitates continued connections with the rugby community is important for these injured players. Further, wheelchair sport may offer important opportunities to pursue athleticism, social connections and informal peer mentoring. Gaps in support offer opportunities

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Nicole Merrick is a physiotherapist and research fellow at the University of Melbourne. Nicole’s PhD via Edith Cowan University, used community engaged methods to explore and understand spinal cord injuries in Australian community level rugby union.

This research investigates outcomes after rugby-related SCI, the long-term consequences and the culture around safety in sport. If you would like to know more, you can contact Nicole at nicole.merrick@unimelb.edu.au or via LinkedIn. to improve support for people with SCI. Future, community engaged research to understand how best to provide this support and translate this knowledge into practice, are some of the next steps for this work.

Why Research Matters - Previous Editions The Spinal Research Institute has published the work of 44 authors from 18 countries in four editions of Why Research Matters!

The 2020 edition of Why Research Matters contains 12 written pieces.

The 2021 edition of Why Research Matters contains 8 written pieces.

Contributing researchers are from 8 countries.

Contributing researchers are from 5 countries.

View Edition 1, 2020

View Edition 2, 2021

The 44 authors are from Australia, Norway, Ireland, USA, The Netherlands, China, England, South Africa, New Zealand, Canada, Denmark, Pakistan, Sweden, India, Malaysia, Germany, Bangladesh, and Chile.

The 2022 edition of Why Research Matters contains 13 written pieces.

The 2023 edition of Why Research Matters contains 11 written pieces.

Contributing researchers are from 11 countries.

Contributing researchers are from 6 countries.

View Edition 3, 2022

The Spinal Research Institute’s Programs Spinal Cord Research Hub (SCoRH) The Spinal Cord Research Hub (SCoRH) is the world’s first online platform for spinal cord injury research collaboration. This Australian innovation was developed by the Spinal Research Institute, with support from leading local and international experts in spinal cord injury research, and launched in 2018. SCoRH enables researchers and clinicians to connect, share and collaborate in one easy-to-use online space, and to work across health disciplines and geographic boundaries to impact greater numbers of health outcomes for spinal cord injury.

SCoRH members have access to two free services (outlined below) developed to remove barriers to collaboration and consumer engagement in the research process.

Research Group Facilitation This service supports established groups to overcome obstacles that prevent or hinder their progress. Researchers globally are time-poor, and administrative tasks such as organising meetings with group members in a range of international locations can be prohibitively timeconsuming. Additionally, as group members are concurrently working on other projects and managing conflicting priorities, it can be difficult to maintain momentum, leading to a lack of clarity about group actions and goals. Research Group Facilitation provides structure and focus that can assist with these issues.

Consumer Engagement Consultation Service This service supports researchers who would like to know more about how to include consumers in the design and implementation of their research. Including the perspectives of consumers is best practice in SCI research and is increasingly required in order to secure funding through grants. However, it is not always clear how researchers might approach this in their own projects.

The Consumer Engagement Consultation service provides guidance about the ways in which consumers might be involved in different stages of the research process.

Mentor Program The Spinal Research Institute’s Mentor Program was established in 2021 after being successfully piloted in 2019. The program has four aims: • Progress the research careers of talented emerging researchers.

• Provide guidance and support to strengthen their specific research projects.

• Produce the next generation of leaders to advance spinal cord injury research more broadly.

• Enhance international collaborations in spinal cord injury research.

Mentoring in research equips individuals with skills that might not be available within their own organisation or institution. The mentor/mentee relationship is not bound by geographical limits, and supports growth beyond the mentee’s physical location to help develop their networks .

SCI Research Collaboration Grants In 2017, the SRI commenced offering SCI Research Collaboration Grants to facilitate early to mid-career researcher attendance at the International Spinal Cord Society Annual Scientific Meeting, with a particular focus on researchers from middle and low income countries. The objective of this grant is to support researchers to build their collaboration networks and develop future leaders for the next generation of researchers. Over the past seven years, the Spinal Research Institute has offered nearly 100 grants to researchers from 24 countries

including 12 low and middle income countries. Five grantees had lived experience of SCI, and nearly 50% have been awarded to female researchers.

The grant enables recipients to exchange knowledge, and to build relationships with other researchers, institutions and countries involved in spinal cord research. Recipients of the grants represent diverse areas of research such as Psychology, Physiotherapy, Occupational Therapy, Nursing, Medical and Science backgrounds. Research focus areas have included health integration, electrical stimulation, trunk control, food nutrition and epidemiology.

Consumer Engagement Program In Australia, 20,800 people live with a spinal cord injury. They are key stakeholders in the research process and it is vital that their voice is heard to ensure that research meets their needs and priorities.

For the past two years the Spinal Research Institute has been actively progressing our innovative Consumer Engagement Program. This flagship program is working to transform the spinal cord injury research field by, for the first time in Australia, supporting people with lived experience of spinal cord injury (‘consumers’) to become involved in co-design and co-delivery of research projects. It does this by improving knowledge and understanding of the research process and upskilling members of the spinal cord injury community so that they can participate as partners in research.

The program also engages researchers, championing the inclusion of lived experience in research, and we aim to create a set of world first protocols to formalise and guide the consumer engagement process.

Increased collaboration between researchers and consumers will result in more relevant research, to improve outcomes for people with spinal cord injury in areas such as: respiratory and cardiovascular health, bladder and bowel function, sexual function, pain management, upper limb function (for people with quadriplegia), treatment of pressure sores, and management of sleep apnea - all secondary health complications of spinal cord injury that can impact on quality of life.

Discover more in our Impact Report 2023

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