杜氏肌营养不良患儿照顾者负担现状及其影响因素分析

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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.

Key words： Duchenne muscular dystrophy caregiver burden social support influencing factors

Received: 16 December 2023

PACS:

R473.72

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http://yxb.hunnu.edu.cn/EN/ OR http://yxb.hunnu.edu.cn/EN/Y2024/V21/I2/118

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