Identity disruption, fear of progression, and avoidance in postoperative adaptation following vestibular schwannoma surgery in China: An interpretative phenomenological analysis.

BACKGROUND: Vestibular schwannoma is a benign intracranial tumour with a generally favourable prognosis. However, many patients continue to experience persistent postoperative symptoms, functional limitations, and long-term medical follow-up after surgery. These experiences extend beyond physical recovery and may affect patients' sense of self, social roles, and everyday life. Limited research has examined how patients experience and make sense of these changes during long-term postoperative adaptation. OBJECTIVE: To explore how Chinese patients experience, interpret, and cope with bodily changes and uncertainty about future health during long-term adaptation after vestibular schwannoma surgery. DESIGN: A qualitative study using interpretative phenomenological analysis. SETTING(S): Online patient communities on Chinese social media platforms. PARTICIPANTS: Nine adult patients who had undergone surgery for vestibular schwannoma were recruited through purposive sampling. The sample included six women and three men, aged 24-72 years. Time since surgery ranged from 7 to 76 months. METHODS: The study was approved by the Medical Ethics Committee of Tianjin Medical University, China. In-depth semi-structured interviews lasting 60-90 min were conducted via encrypted video conferencing or telephone between March and April 2025. Data were analysed using interpretative phenomenological analysis. RESULTS: Three interrelated themes were identified: identity disruption amid bodily changes, fear of progression in the context of uncertainty about future health, and avoidance as self-protection. Persistent bodily symptoms and functional limitations undermined participants' trust in their bodies and disrupted their self-identity, confidence, and sense of social roles. Concerns about functional decline, tumour regrowth, and future health uncertainty persisted throughout long-term adaptation. These concerns were reactivated by follow-up reminders, medical encounters, waiting for results, and symptom fluctuations. Some participants reported avoiding situations related to follow-up care, illness-related information, socially demanding environments, and long-distance travel. These avoidance responses appeared to help manage distress in the short term, but could also limit engagement in ongoing care, rehabilitation, and social participation. CONCLUSIONS: Postoperative adaptation after vestibular schwannoma surgery involves not only physical symptom recovery and functional restoration, but also a long-term psychosocial process shaped by identity disruption, fear of progression, and avoidance responses. Healthcare professionals should attend to patients' subjective experiences and coping strategies during postoperative follow-up and long-term care. Identifying avoidance responses may help support more patient-centred rehabilitation and long-term adaptation. REGISTRATION: Not registered.