目的: 调查杜氏肌营养不良（Duchenne muscular dystrophy,DMD）患儿照顾者负担现状并分析其影响因素。方法: 本研究属于前瞻性研究,采用便利抽样法选取2019年1月1日—2022年12月30日在湖南省某三甲儿童医院就诊的196例DMD患儿及照顾者为研究对象。采用一般资料调查表、照顾者负担量表和社会支持评定量表进行调查,采用多元线性回归分析DMD患儿照顾者负担状况的影响因素。结果: DMD患儿照顾者负担量表总分为（51.561±17.120）分,其中无负担或极轻度负担者1例（0.51%）,轻度负担51例（26.02％）、中度负担62例（31.63％）,重度负担82例（41.84％）。Pearson相关分析显示,照顾者负担与社会支持呈负相关;多元线性回归分析显示,患儿自理能力、家庭年收入、照顾者学历、社会支持水平是DMD患儿照顾者负担的影响因素,可解释总变异的95.9%。结论: DMD患儿照顾者照顾负担为中重度水平,影响DMD患儿照顾者负担的主要因素是患儿自理能力、家庭年收入、照顾者学历、社会支持水平。医护人员应从多方位、多角度采取多种措施,提高照顾者对DMD疾病的认识,加强社会支持干预,从而降低DMD患儿照顾者负担。
Abstract
Objective To investigate the burden of caregivers of children with Duchenne Muscular Dystrophy (DMD) and analyze its influencing factors. Method This was a prospective study, and the convenience sampling method was used . A total of 196 cases of children with DMD and their caregivers who sought medical treatment at a tertiary children's hospital in Hunan Province from January 1, 2019, to December 30, 2022, as the study subjects. General information questionnaires, caregiver burden scales, and social support rating scale were used for data collection. Multiple linear regression analysis was conducted to explore the influencing factors of the burden that caregivers of children with DMD carried. Results The total score of the burden scale for caregivers of children with DMD was (51.561±17.12), with 1 case (0.51%) classified as having no burden, 51cases (26.02%) as mild burden, 62 cases (31.63%) as moderate burden, and 82 cases (41.84%) as severe burden. Pearson correlation analysis showed that caregiver burden was negatively correlated with social support. Multiple linear regression analysis revealed that the self-care ability of the child, family income, parental education level, and social support were significant factors influencing the burden of caregivers of children with DMD, accounting for 95.9% of the total variation. Conclusion The burden of caregivers of DMD children is at a moderate to severe level. The main factors affecting the burden of caregivers of DMD children are the self-care ability of children, annual family income, education level of caregivers and social support level. Medical staff should take a variety of measures from multiple directions and perspectives to improve caregivers' awareness of DMD disease and strengthen social support intervention, so as to reduce the burden of caregivers of DMD children.
关键词
杜氏肌营养不良 /
照顾者负担 /
社会支持 /
影响因素
Key words
Duchenne muscular dystrophy /
caregiver burden /
social support /
influencing factors
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基金
湖南省自然科学基金一般项目“闭塞性细支气管炎儿童智能化呼吸康复模式的构建及实证研究”（2023JJ60008）; 湖南省科技创新计划一般项目“儿童癫痫患儿家庭管理模式探讨及应用效果研究”（2018SK50412）; 湖南省儿童医院国际化发展与国际化人才培养项目
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