Delving into the Life Experiences of School-aged Children Afflicted by Tethered spinal cord syndrome: An Interpretative Qualitative Study

Abstract

AbstractTethered cord syndrome in pediatric patients manifests as an intricate interplay of complications permeating educational, familial, and societal contexts, underscoring the necessity of a comprehensive understanding of their subjective emotional states and life experiences. However, the healthcare sector often exhibits a skewed focus on the physical functionality of the afflicted pediatric patients throughout their treatment and post-treatment phases, frequently neglecting the emotional dimensions of their experience. As such, there is a pressing need to enhance our understanding of the lived experiences and perceptions of pediatric patients with tethered cord syndrome upon their reintroduction into familial, educational, and broader societal environments post-discharge. This study was executed at the Children's Hospital in Zhejiang, incorporating twelve tethered cord syndrome-affected participants aged between 8 to 15 years. An interpretative qualitative research design was employed, employing semi-structured interviews as the chief data acquisition tool. Reflexive thematic analysis was utilized for data evaluation, enabling an exhaustive scrutiny of emerging thematic patterns. Four major themes (and seven sub-themes) were identified from the findings: (1) growing pains (a shameful secret, distance between ideal and reality); (2) inappropriate expressions of familial affection (knowing is not understanding, unspeakable guilt); (3) social estrangement (uncomfortable distinctions, familiar stranger); (4) striving for independence and consistency. Pediatric patients with tethered cord syndrome display intrinsic sensitivity and face complexities in personal growth, familial relationships, and social interactions. Their aspirations revolve around future independence and freedom, similar to their developmentally typical counterparts. The findings of this study offer critical insights for healthcare providers, families, and educators, fostering a deeper comprehension of the experiences and challenges faced by children with tethered cord syndrome. Furthermore, the results serve as a foundation for potential interventions promoting self-expression and enabling these patients to perceive life as a meaningful and positive journey.