Globally, over 15 million people are living with spinal cord injury (SCI). People with SCI are at risk of developing debilitating and even life-threatening secondary conditions, that causes premature mortality. SCI is associated with lower school enrolment and economic participation rates, carrying substantial individual and societal costs. Effective prevention, treatment, rehabilitation, and ongoing health care are essential to alleviate the global burden of SCI (Facts About SCI - The Spinal Foundation, 2020; Spinal Cord Injury | National Institute of Neurological Disorders and Stroke,).
SCI refers to damage to the spinal cord resulting from trauma (falls and road traffic injuries) or non-traumatic causes like tumors, degenerative or vascular conditions, infections, toxins or birth defects (Spinal Cord Injury | National Institute of Neurological Disorders and Stroke, sem data-b; «What Is Spinal Cord Injury/Disorder (SCI/D)?», sem data).
The extent of SCI related impairment depends on injury severity and location, resulting in complete or incomplete loss of sensory and/or motor functions below injury level. In paraplegia arm functions are preserved; in tetraplegia they are affected. Autonomic nervous system dysfunction affecting diverse functions can occur at any level of injury (Kirshblum et al., 2011). Inappropriate management of SCI related impairments and secondary conditions often causes premature mortality (Spiess et al., 2009).
SCI can diminish the capacity to perform daily activities, including walking, using one’s hands, physiological emptying of bowel/bladder or washing and dressing oneself. Limitations are compounded by misconceptions, negative attitudes and physical barriers to basic mobility, restricting independence and full societal participation (Adriaansen et al., 2013; DeJong et al., 2013a; M. DeVivo & Farris, 2011; Dryden et al., 2004; Gabbe & Nunn, 2016; McKinley et al., 1999). SCI is a major cause of long-term disability, accounting for over 4.5 million years of life lived with disability (YLDs) in 2021.
The 2024 population size in the United States was estimated to be about 341 million people. The most recent estimate of the annual incidence of traumatic spinal cord injury (tSCI) is approximately 54 cases per one million people in the United States, which equals about 18,421 new tSCI cases each year. New tSCI cases do not include those who die at the location of the incident that caused the tSCI. (Jain et al., 2015).
This type of disability has widespread bodily effects, impacting the individual as a whole. Consequently, the chronic nature of SCI can influence a person's sense of identity and overall quality of life. SCI is, as seen, a life-altering condition that significantly impacts an individual’s well-being. Although the clinical aspects of SCI, such as paralysis and secondary health complications, have been widely studied, the transitional experiences of adults with SCI during rehabilitation and beyond remain less thoroughly explored.
This gap is particularly evident in qualitative research, where the subjective, experiences and narratives of individuals crossing the challenges of recovery and reintegration into society are underrepresented. Recent studies highlight the need to explore these experiences, which can provide a deeper understanding of the personal and contextual factors that may influence adaptation. Individuals with SCI face numerous challenges stemming from the sudden onset of disability, which include motor and sensory impairments, as well as systemic dysfunctions. Managing these issues requires continuous clinical care. As a result, it is significant to investigate the experience of living with a SCI and the transition processes associated to better inform healthcare professionals. Although advances have improved clinical outcomes for adults with SCI, little is known about how these individuals experience the processes of transition and community reintegration, what challenges they face during this process, and what strategies, mechanisms and resources they use to adapt to a new life condition. This study seeks to explore these individual experiences (from injury to community reintegration), the perceived barriers and facilitators, what resources and coping mechanisms they have developed in order to promote a new life adapted to the clinical condition, and the impact of social and institutional dynamics on the success of the transition to an adapted life.
Problem: Spinal cord injury (SCI) often leads to permanent disability, posing major challenges in adapting to a new life condition. Little is known about how adults with SCI experience adaptation and the obstacles encountered during reintegration into community life. This study seeks to explore these experiences, identify perceived barriers and facilitators across transition stages (from injury to reintegration), and assess their impact on adaptation. Objective: To develop a grounded nursing theory on the adaptive transition of adults with SCI, from injury onset to community/natural environment reintegration. Methodology: A qualitative study based on Strauss and Corbin’s Grounded Theory. Participants will include adults with SCI at different stages (treatment, rehabilitation, and reintegration), their significant persons/informal caregivers, and members of a national support association. Semi-structured audio-recorded interviews and personal narratives will be collected until data saturation. Locations will be participant-chosen. Ethical approval will be obtained by UICISA:E´s Ethics Commitee. Results: Including three participant groups allows for diverse and complementary insights, enabling a comprehensive understanding of transition. Conclusion: Findings will expand knowledge by contributing to an explanatory theory of adaptation.
Primary objective
To develop a grounded nursing theory on the adaptive transition process of adults with spinal cord injury (SCI), from the moment of injury to their reintegration into the community and natural environment.
Subsidiary objectives
• To examine the subjective experiences shaping the adaptive transition of adults with SCI, from the onset of injury through to community reintegration.
• To identify and describe the strategies and resources mobilized by adults with SCI during the adaptive transition process.
• To analyze how these strategies are structured, organized, and progressively developed throughout the recovery trajectory to support adaptive transition.
• To determine the adaptive outcomes associated with the transition processes enacted by adults with SCI.
The project introduces methodological innovation by combining grounded theory with a participatory research design, thereby positioning citizens as co-creators of knowledge rather than as passive subjects. This approach allows the generation of a theory-driven framework for understanding adaptation after SCI, moving beyond descriptive accounts toward explanatory and practice-oriented insights. The anticipated impact extends to multiple levels: (i) advancing scientific knowledge on adaptation processes in chronic physical conditions; (ii) informing evidence-based interventions in nursing and rehabilitation; (iii) guiding policy development aimed at reducing social and environmental barriers; and (iv) ultimately enhancing the quality of life and social inclusion of individuals with SCI. The project thus contributes simultaneously to academic progress, professional practice, and societal benefit.
Citizen participation constitutes a central element of this project. Individuals with SCI will be actively engaged throughout the research process, in accordance with the Principles of Citizen Science established by the European Citizen Science Association (ECSA). Their contribution will include the co-creation of research instruments (e.g., interview guides, consent procedures), consultation on recruitment strategies, and participation in the interpretation and validation of findings through member-checking activities. This collaborative approach ensures that the research questions are both scientifically rigorous and directly aligned with the priorities of the study population. Such involvement not only enhances the relevance and inclusivity of the project but also strengthens its methodological robustness and ethical integrity
Adriaansen, J. J. E., Post, M. W. M., de Groot, S., van Asbeck, F. W. A., Stolwijk-Swüste, J. M., Tepper, M., & Lindeman, E. (2013). Secondary health conditions in persons with spinal cord injury: A longitudinal study from one to five years post-discharge. Journal of Rehabilitation Medicine, 45(10), 1016–1022. https://doi.org/10.2340/16501977-1207
Birks, M., & Mills, J. (2011). Grounded Theory: A Practical Guide.
Bogdan, R., & Biklen, S. (2007). Qualitative research for education: An introduction to theories and methods.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa
Charmaz, K. (2006). Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Em Introducing Qualitative Methods (Vol. 1).
DeJong, G., Tian, W., Hsieh, C.-H., Junn, C., Karam, C., Ballard, P. H., Smout, R. J., Horn, S. D., Zanca, J. M., Heinemann, A. W., Hammond, F. M., & Backus, D. (2013b). Rehospitalization in the first year of traumatic spinal cord injury after discharge from medical rehabilitation. Archives of Physical Medicine and Rehabilitation, 94(4 Suppl), S87-97. https://doi.org/10.1016/j.apmr.2012.10.037
DeVivo, M., & Farris, V. (2011). Causes and Costs of Unplanned Hospitalizations Among Persons with Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 16(4), 53–61. https://doi.org/10.1310/sci1604-53
DeVivo, M. J., Chen, Y., & Wen, H. (2022). Cause of Death Trends Among Persons With Spinal Cord Injury in the United States: 1960-2017. Archives of Physical Medicine and Rehabilitation, 103(4), 634–641. https://doi.org/10.1016/j.apmr.2021.09.019
Dryden, D. M., Saunders, L. D., Rowe, B. H., May, L. A., Yiannakoulias, N., Svenson, L. W., Schopflocher, D. P., & Voaklander, D. C. (2004). Utilization of health services following spinal cord injury: A 6-year follow-up study. Spinal Cord, 42(9), 513–525. https://doi.org/10.1038/sj.sc.3101629
ECSA (European Citizen Science Association). 2015. Ten Principles of Citizen Science. Berlin. Http://doi.org/10.17605/OSF.IO/XPR2N). (sem data).
Gabbe, B. J., & Nunn, A. (2016). Profile and costs of secondary conditions resulting in emergency department presentations and readmission to hospital following traumatic spinal cord injury. Injury, 47(8), 1847–1855. https://doi.org/10.1016/j.injury.2016.06.012
Glaser, B., & Strauss, A. (2017). Discovery of Grounded Theory: Strategies for Qualitative Research. Routledge. https://doi.org/10.4324/9780203793206
International perspectives on spinal cord injury. (sem data). Obtido 25 de março de 2025, de https://www.who.int/publications/i/item/international-perspectives-on-spinal-cord-injury
Jain, N. B., Ayers, G. D., Peterson, E. N., Harris, M. B., Morse, L., O’Connor, K. C., & Garshick, E. (2015). Traumatic spinal cord injury in the United States, 1993-2012. JAMA, 313(22), 2236–2243. https://doi.org/10.1001/jama.2015.6250
Kirshblum, S. C., Burns ,Stephen P., Biering-Sorensen ,Fin, Donovan ,William, Graves ,Daniel E., Jha ,Amitabh, Johansen ,Mark, Jones ,Linda, Krassioukov ,Andrei, Mulcahey ,M.J., Schmidt-Read ,Mary, & and Waring, W. (2011). International standards for neurological classification of spinal cord injury (Revised 2011). The Journal of Spinal Cord Medicine, 34(6), 535–546. https://doi.org/10.1179/204577211X13207446293695
Malekzadeh, H., Golpayegani, M., Ghodsi, Z., Sadeghi-Naini, M., Asgardoon, M., Baigi, V., Vaccaro, A. R., & Rahimi-Movaghar, V. (2022b). Direct Cost of Illness for Spinal Cord Injury: A Systematic Review. Global Spine Journal, 12(6), 1267–1281. https://doi.org/10.1177/21925682211031190
McKinley, W. O., Jackson, A. B., Cardenas, D. D., & DeVivo, M. J. (1999). Long-term medical complications after traumatic spinal cord injury: A regional model systems analysis. Archives of Physical Medicine and Rehabilitation, 80(11), 1402–1410. https://doi.org/10.1016/s0003-9993(99)90251-4
Rehabilitation in Spinal Cord Injuries. (2020). https://shop.elsevier.com/books/rehabilitation-in-spinal-cord-injuries/reznik/978-0-7295-4320-0
Spiess, M. R., Müller, R. M., Rupp, R., Schuld, C., EM-SCI Study Group, & van Hedel, H. J. A. (2009). Conversion in ASIA impairment scale during the first year after traumatic spinal cord injury. Journal of Neurotrauma, 26(11), 2027–2036. https://doi.org/10.1089/neu.2008.0760
Spinal Cord Injury | National Institute of Neurological Disorders and Stroke. (sem data-a). Obtido 25 de março de 2025, de https://www.ninds.nih.gov/health-information/disorders/spinal-cord-injury
Spinal Cord Injury | National Institute of Neurological Disorders and Stroke. (sem data-b). Obtido 25 de março de 2025, de https://www.ninds.nih.gov/health-information/disorders/spinal-cord-injury
Spinal Cord Injury Facts and Figures at a Glance. (2013). The Journal of Spinal Cord Medicine, 36(1), 1–2. https://doi.org/10.1179/1079026813Z.000000000136
Spinal Cord Injury Outpatient Rehabilitation Program. (sem data). Craig Hospital. Obtido 25 de março de 2025, de https://craighospital.org/outpatient/sci-outpatient-program
Spinal Cord Injury Rehabilitation | SCI Physical Therapy Center. (sem data). Craig Hospital. Obtido 25 de março de 2025, de https://craighospital.org/spinal-cord-injury-rehabilitation
Spinal cord injury—Symptoms and causes. (sem data). Mayo Clinic. Obtido 25 de março de 2025, de https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890
01/03/2025
04/10/2027
QUALIDADE DE VIDA, NECESSIDADES E PROMOÇÃO DA AUTONOMIA DE PESSOAS EM PROCESSOS DE TRANSIÇÃO DE SAÚDE
Self-care and health-disease