Abstract:

Objective To explore the disease experiences and needs of children with idiopathic central precocious puberty（ICPP），aiming to provide more patient-centered medical care and family guidance to improve their quality of life. Methods Using the phenomenological research method，from November to December 2024，convenience sampling was employed to select children with ICPP who were receiving treatment at the pediatric outpatient department of a tertiary hospital in Wuhan as the research subjects. Data were collected through semi-structured one-on-one interviews，and the content analysis method was used to analyze the data and extract the core themes. Results A total of 4 themes and 12 sub-themes were extracted：dual distress of body image and social identity （shame and identity confusion due to body development，anxiety about adult height and disease prognosis，self-restraint and avoidance behavior in social activities），physical and mental burden during treatment（pain and fear caused by injection procedures，sense of control loss over lifestyle in disease management，pressure and burnout from long-term treatment），need for privacy protection and support（strong demand for keeping illness privacy confidential，desire for family support and parental company，hope for skilled and empathetic medical care），the requirement for normative development and future life（expectation of effective control of height and weight，hope for early end of treatment and return to normal life，rebuilding confidence and self-acceptance through treatment）. Conclusion Children with ICPP encounter multifaceted physical and psychological challenges throughout the course of the illness. Hospitals，schools，and families should consider children’s psychological changes from multiple angles，actively guide them in correctly understanding their condition，recognize and respond to their needs，and provide personalized support and emotional care to enhance their self-care abilities and health.

Key words: Precocious Puberty, Disease Experience, Needs, Qualitative Research, Pediatric Nursing

摘要：

目的 探索特发性中枢性性早熟（idiopathic central precocious puberty，ICPP）患儿的患病体验与需求，旨在为其提供更为人性化的医疗服务和家庭指导，为改善患儿的生活质量提供依据。 方法 采用现象学研究方法，于2024年11—12月，采用便利抽样法，选取在武汉市某三级甲等医院儿科门诊接受治疗的ICPP患儿为研究对象，通过半结构式一对一访谈收集数据，采用内容分析法对资料进行分析，提炼核心主题。 结果 提炼出4个主题，12个亚主题：身体意向与社交身份的双重困扰（身体发育羞耻与认同困惑、对疾病预后与身高增长的焦虑、社交活动中的自我约束与回避行为）；治疗过程中的身心体验与负担（注射操作引发的疼痛与恐惧、疾病管理中的生活方式被控感、长期治疗的压力与倦怠）；保护隐私与获取支持的需求（强烈要求病情隐私不被泄露、渴望家庭支持与父母陪伴、希望获得熟练且富有共情的医疗照护）；对正常成长与未来生活的需求（期待身高及体重得到有效控制、渴望回归常态生活、自我接纳与重建自信）。 结论 ICPP患儿在疾病过程中面临着身心双重挑战。医院、学校和家庭应多方面关注患儿的心理变化，积极引导其正确认识疾病，主动识别并回应患儿的需求，提供个性化的支持和情感关怀，以提升其自我照顾能力和健康水平。

关键词: 性早熟, 患病体验, 需求, 质性研究, 儿科护理学