Xuan Yan, Ji Ziling, Li Xiaohua, Wang Xiao, Chen Yunfei, Liang Wenjing, Fan Lichun, Hu Xiaojing
Nursing Department, Children's Hospital of Fudan University at Hainan, Haikou, China.
Nursing Department, Children's Hospital of Fudan University, the National Children's Medical Center, Shanghai, China.
Child Care Health Dev. 2025 Sep;51(5):e70145. doi: 10.1111/cch.70145.
Neuroblastoma (NB) is a prevalent malignant tumour affecting children. Due to its insidious onset, malignant nature and poor prognosis, the absence of effective treatments presents a significant challenge, profoundly impacting children and their families. Children embody the core and hope of a family, and when faced with sudden adversity, parents often undergo psychological crises marked by anxiety, depression and severe emotional distress. Fortunately, XXX Hospital serves as a testing ground for novel domestic medications, offering not only therapy but also instilling hope in children with NB and their families. Among these medications, naxitamab (hu3F8) has shown promising efficacy in treating NB. This qualitative study aims to investigate the psychological experiences of caregivers of children with NB undergoing naxitamab treatment at a hospital in China, a specialized institution. Subsequently, tailored psychological support for caregivers will be considered based on the findings.
Employing phenomenological research techniques, we conducted face-to-face semistructured interviews with 14 caregivers of children diagnosed with NB. Colaizzi's seven-step analysis method was employed to analyse the interview data.
The psychological experiences of caregivers of children with NB were categorized into three main themes and 11 subthemes: the pretreatment stage (challenges during diagnosis, shock and collapse upon diagnosis and persistent pursuit of hope); the in-treatment stage (treatment-related worries and fears, significant financial strain, renewed hope and expectations during treatment and reliance on medical staff for trust and hope); and the posttreatment stage (changes in perspectives following treatment, rethinking expectations for children, anticipating the development of novel therapeutic agents and expectations regarding financial support).
Caregivers of children undergoing naxitamab treatment for NB encounter diverse psychological challenges throughout different stages. It is crucial for clinical medical professionals to provide tailored psychological support to both children and their families during various stages of treatment.
神经母细胞瘤（NB）是一种常见的儿童恶性肿瘤。由于其发病隐匿、恶性程度高且预后不良，缺乏有效的治疗方法带来了巨大挑战，对儿童及其家庭产生了深远影响。儿童是家庭的核心和希望，面对突如其来的困境，家长往往会经历以焦虑、抑郁和严重情绪困扰为特征的心理危机。幸运的是，XXX医院是国内新型药物的试验基地，不仅为NB患儿提供治疗，也为他们及其家庭注入希望。在这些药物中，纳昔妥单抗（hu3F8）在治疗NB方面显示出了有前景的疗效。本质性研究旨在调查在中国一家专科医院接受纳昔妥单抗治疗的NB患儿照料者的心理体验。随后，将根据研究结果考虑为照料者提供有针对性的心理支持。
采用现象学研究方法，我们对14名确诊为NB的患儿照料者进行了面对面的半结构式访谈。采用科莱齐的七步分析法对访谈数据进行分析。
NB患儿照料者的心理体验分为三个主要主题和11个子主题：治疗前阶段（诊断过程中的挑战、确诊时的震惊与崩溃以及对希望的持续追求）；治疗中阶段（与治疗相关的担忧与恐惧、巨大的经济压力、治疗期间重新燃起的希望与期待以及对医护人员信任与希望的依赖）；以及治疗后阶段（治疗后观念的转变、对孩子期望的重新思考、对新型治疗药物研发的期待以及对经济支持的期望）。
接受纳昔妥单抗治疗的NB患儿照料者在不同阶段面临着多种心理挑战。临床医学专业人员在治疗的各个阶段为患儿及其家庭提供有针对性的心理支持至关重要。
