Living with congenital scoliosis: a qualitative phenomenological study of Chinese adolescents receiving corrective surgery.

Abstract

To explore how adolescents with congenital scoliosis receiving tertiary corrective care describe daily life, social relationships, emotional adaptation, and treatment. Qualitative phenomenological interviews were conducted face-to-face in a Chinese tertiary referral hospital (Oct 2023 to Jan 2024). Adolescents aged 12-18 years were purposively sampled. Recordings were transcribed verbatim and analyzed using Colaizzi's seven-step method with team coding and member checking. Eleven adolescents (mean age 14.6 years; 45.5% female) participated; nine had undergone corrective surgery. Four themes emerged: (1) surgery as restoration of participation (schooling, mobility, breathing comfort) despite perioperative fear, pain, and recovery burden; (2) function and quality of life prioritized over scarring, although some voiced appearance-related worries; (3) peer and family life described as largely ordinary, with overt stigmatization infrequently reported and often framed as minor; (4) emotional resilience and rejection of a tragedy framing, including contrasts between adolescent self-appraisal and adult worry. In this tertiary-care cohort, adolescents centered participation and ordinariness more than stigma or sadness. Care and research should prioritize adolescent-defined outcomes and avoid presuming psychosocial distress as a default.