目的 调查重型β地中海贫血患儿照顾者的负担现状，并分析其影响因素，为医护人员制定干预方案提供依据。方法 采用便利抽样法，于2024年1月—12月选取华南地区5家医院就诊的重型β地中海贫血患儿的主要照顾者作为调查对象，采用一般资料调查表、Zarit照顾者负担量表、中文简化版家庭弹性量表和社会支持评定量表进行调查，并采用单因素分析、相关性分析及多重线性回归探究其影响因素。结果 共发放问卷242份，回收232份，回收率为95.87%。重型β地中海贫血患儿主要照顾者照顾负担的总体平均得分为（36.67±18.63）分。多重线性回归分析结果显示，患儿输血频率、输血相关性皮肤过敏和社会支持是患儿照顾负担的影响因素（P＜0.001），可解释总变异的23.9%。结论 重型β地中海贫血患儿照顾者负担程度以中重度为主。患儿曾出现输血不良反应、输血频率更高，其照顾者负担更重；而主要照顾者具有良好的社会支持水平有助于降低其照顾者负担。医护人员应针对以上因素制定干预方案，以减轻重型β地中海贫血患儿照顾者负担水平。
Objective To investigate the current burden in caregivers of children with β thalassemia major and analyze its influencing factors，so as to provide a basis for medical staff to formulate intervention plans．Methods By using the convenience sampling method，primary caregivers of children with β thalassemia major from five hospitals in South China from January to December 2024 were selected as the survey subjects．The general information questionnaire，Zarit Caregiver Burden Scale，Simplified Chinese Family Resilience Scale and Social Support Rating Scale were used for the survey．And univariate analysis，correlation analysis and multiple linear regression were adopted to explore its influencing factors．Results A total of 242 questionnaires were distributed and 232 were retrieved，with a recovery rate of 95.87%．The overall average score of care burden for primary caregivers of children with β thalassemia major was（36.67±18.63）．The results of multiple linear regression analysis showed that the frequency of blood transfusion in children，transfusion-related skin allergy and social support were the influencing factors of the care burden（P＜0.001），which could explain 23.9% of the total variation．Conclusions The burden level in caregivers of children with β thalassemia major is mainly moderate to severe．The children with adverse reactions to blood transfusion and higher frequency of blood transfusion impose a heavier burden on its caregivers．The primary caregivers who have good social support can help reduce the burden．Medical staff should formulate intervention plans based on the above factors to reduce the burden level of caregivers of children with β thalassemia major．
