Saúde da pessoa com lesão medular traumática: um guia interativo para refletir, cuidar e ressignificar o futuro

Abstract

Introduction: Traumatic spinal cord injury (TSCI) and aging are interrelated phenomena that result in functional declines arising from the progressive loss of motor, sensory, and autonomic capacities, representing an increasing challenge to global health. The expansion of healthcare services has contributed to increased life expectancy among persons with disabilities, enabling them to reach old age even in the presence of conditions once considered disabling. However, although individuals with TSCI benefit from advances in care practices and therapeutic strategies, their life expectancy remains lower than that of the general population. The limitations resulting from TSCI affect the performance of identity-related activities that confer social and personal meaning—such as work, education, and family or community support— potentially leading to significant emotional and psychosocial consequences. Studies show that the presence of mental disorders is associated with decreased life satisfaction and more pronounced impairments in the performance of daily activities, particularly those related to compromised physical and mental health conditions. Manifestations of emotional distress and challenges in the mental health domain significantly affect individuals’ coping capacity when facing TSCI, increasing their vulnerability to illness processes. In this context, a central question arises: what is the meaning of aging for individuals with TSCI, considering that they have already undergone complex processes of physical, psychological, and social redefinition and adaptation? This question invites reflection on how these individuals, who have experienced profound transformations throughout their life trajectories, perceive the possibility of new functional losses, particularly in light of studies indicating that aging among people with TSCI presents additional challenges compared to typical physiological aging, characterized by the emergence of secondary impairments at a higher rate than in the general population. The research problem originates from the researcher’s professional practice within the Rehabilitation and Long-Term Care Unit of the Hospital de Apoio de Brasília. Objective: To understand the meaning of aging for individuals affected by the sequelae of TSCI. To this end, the study sought to investigate how TSCI sequelae influence the construction of these individuals’ perceptions of aging; to explore the emotional consequences related to the aging experience among people with TSCI; to discuss the influence of socio-environmental factors on the understanding of the meaning of aging among individuals with TSCI sequelae; to analyze how the rehabilitation process affects the perception of aging among people with TSCI; to foster discussions aimed at improving care practices for individuals affected by TSCI sequelae; and to propose the development of educational materials (an e-book and a printed book) to assist people affected by TSCI in understanding the process of re-signification and in promoting a better quality of life. Methods: This study is exploratory and analytical in nature, employing a qualitative approach. Ten participants aged between 33 and 59 years were interviewed, selected through convenience sampling while adhering to inclusion and exclusion criteria. The interview guide included a brief history of the TSCI, the resulting sequelae, the participant’s level of functionality, and other aspects related to the study theme, aligned with the general and specific objectives of the research. Participant selection was carried out through direct contact with hospitalized patients, phone contact with former inpatients, and dissemination of the study in WhatsApp groups composed of beneficiaries from the Special Physical Education Training Center (CETEFE). In all approaches, potential participants were fully informed about the study and its objectives; upon expressing interest, they scheduled an orientation session, signed the Informed Consent Form (ICF), and subsequently underwent the interview. The interviews were conducted in person, respecting the ethical principles of confidentiality and participant protection. Initially, a questionnaire was applied to identify participants’ sociodemographic profiles (Appendix A), followed by a semi-structured interview for further exploration of the information (Appendix B). The in-depth interviews were conducted individually, in a single session, with an average duration of 1 hour and 7 minutes. After data collection, the material was subjected to Content Analysis, using the thematic categorical approach, enabling the identification of eight analytical categories and the mapping of recurring themes in participants’ discourses. All interviews were conducted in full compliance with the ethical standards governing research involving human beings, following approval by the Research Ethics Committee (CEP), under Certificate of Ethical Appreciation (CAAE) No. 760924.1.0000.5553, and substantiated opinion No. 6.863.105. The development of the educational material *HEALTH OF PERSONS WITH TRAUMATIC SPINAL CORD INJURY: An Interactive Guide to Reflect, Care, and Re-signify the Future* was guided by the principles of health education, humanized care, and communicational accessibility, integrating scientific knowledge with the sensitive listening of people living with TSCI. The development process was structured in two main stages: 1. **Conceptual planning** – definition of target audience, pedagogical objectives, and thematic axes, based on the results of the qualitative study *A Study on the Meaning of Aging for People Affected by Sequelae of Traumatic Spinal Cord Injury*. This stage aimed to align the contente with the specific needs of individuals undergoing rehabilitation and receiving ongoing care. 2. **Content development** – textual production supported by recent scientific evidence on rehabilitation, mental health, quality of life, and aging among persons with physical disabilities, published in high-impact journals in the last five years. The content was designed to be inclusive, clear, and dialogic, promoting accessible and meaningful understanding for the target audience. Developed Products: Product 1 – Technical and Technological Product (TTP) – Book: HEALTH OF PERSONS WITH TRAUMATIC SPINAL CORD INJURY: An Interactive Guide to Reflect, Care, and Re-signify the Future. Final Considerations: The investigation revealed that the aging process in individuals with TSCI is shaped by multiple interwoven dimensions—physical, psychological, social, and spiritual—that converge to construct layers of meaning throughout life. Eight central categories emerged, expressing the daily challenges faced by individuals with TSCI: losses; invisibility and accessibility; dependence and independence; aging; faith and hope; the need to improve health services; and overcoming and re-signification. These dimensions form a mosaic of experiences permeated by feelings of fear, loneliness, shame, and loss of autonomy, but also by the desire for survival, hope, and the search for meaning. The narratives revealed that aging is initially perceived as an amplification of the vulnerabilities associated with TSCI, evoking the fear of becoming a burden to family members. However, as the dialogues deepened, new ways of understanding aging emerged—linked to the maintenance of autonomy, family relationships, sports practice, and the pursuit of personal projects. The tension between dependence and independence proved to be the structuring axis of these experiences, highlighting the decisive role of public policies, accessibility, technological resources, and the quality of health services in shaping the meaning of aging. The results show that aging with TSCI transcends the biological dimension, constituting a process of re-signification supported by faith, social support, and active participation in community life. The study also demonstrated that leisure, sports, work, and family interaction function as key elements that foster hope and belonging, strengthening life projects and reducing fears related to old age. This research culminated in the development of the educational material *HEALTH OF PERSONS WITH TRAUMATIC SPINAL CORD INJURY: An Interactive Guide to Reflect, Care, and Re-signify the Future*, conceived as an instrument for health education and comprehensive care support. The product organizes the thematic axes that emerged from the participants’ narratives and proposes a welcoming and participatory approach aimed at reflection on the body, emotions, and life projects—serving as an applicable resource in rehabilitation programs and within Brazil’s Unified Health System (SUS). The research objectives were successfully achieved, contributing to the advancement of knowledge about aging with TSCI and to the improvement of healthcare delivery for persons with disabilities in the Brazilian context. Future studies are recommended to include greater female representation and to expand national investigations on this subject. Finally, it is emphasized that aging with TSCI can be understood not merely as na accumulation of losses, but as an opportunity for reinvention and empowerment—when supported by inclusive public policies, humanized practices, and networks of solidarity and care.