Although the annual incidence of spinal cord injuries (SCIs) is higher among adolescents and emerging adults than any other age group in the United States, the majority of research focuses on the experiences of adult populations, thereby neglecting unique needs of young people with a life-changing injury. After an SCI, individuals experience chronic conditions that necessitate specialized health services and complex daily management of care and life activities, yet insufficient engagement of adolescents with SCIs in research has resulted in little attention to the critical issues for this population. Therefore, the primary aim of this project is to foster a community of stakeholders, including adolescents with SCIs and their families, clinicians, and researchers, to generate and govern meaningful research.
Narratives will be elicited from adolescents with SCIs and their caregivers regarding the transition home from rehabilitation and adaptation to injury, to obtain a high level of detail about their everyday experiences, priorities, and needs—when health, function, and quality of life are significantly affected. The narratives, collected in individual interviews and group councils, will be used to reveal population characteristics and needs; they will be vehicles for optimizing the engagement of this population in research and for identifying priorities for care. The anticipated outcome is for participants to become members of an advisory council for the adolescent community in order to build a strong foundation for reimagining SCI research with a patient-centered approach, designed to overcome known barriers to research participation.