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Aesthetic Plast Surg. 2024 Jun;48(11):2155-2161. doi: 10.1007/s00266-023-03780-7. Epub 2024 Jan 18.
2
Severe Unilateral Microtia with Aural Atresia, Hair White Patch, Stereotypes in a Young Boy with De novo 16p13.11 Deletion: Reasons for a New Genotype-Phenotype Correlation.一名患有新发16p13.11缺失的小男孩出现严重单侧小耳畸形伴外耳道闭锁、白发斑、刻板行为:新基因型-表型相关性的原因
Glob Med Genet. 2023 Dec 4;10(4):370-375. doi: 10.1055/s-0043-1777362. eCollection 2023 Dec.
3
Don't Play It by Ear: Technical Considerations to Optimize Outcome and Procedural Safety of Congenital Microtia Reconstruction in a Dextrocardia Patient With Situs Inversus Totalis, Butterfly Vertebra, and Hemivertebra.不要仅凭经验行事:优化全内脏转位、蝴蝶椎和半椎体右位心患者先天性小耳畸形重建结果及手术安全性的技术考量
Eplasty. 2023 Aug 31;23:e57. eCollection 2023.
4
Anxiety, Depression, Stress, and Self-Esteem in Turkish Parents of Children with Microtia.土耳其小耳畸形患儿父母的焦虑、抑郁、压力和自尊状况。
Cleft Palate Craniofac J. 2024 Dec;61(12):1981-1990. doi: 10.1177/10556656231190046. Epub 2023 Jul 24.
5
[Genetic characteristics of microtia-associated syndromes in neonates].[新生儿小耳畸形相关综合征的遗传特征]
Zhongguo Dang Dai Er Ke Za Zhi. 2022 Jun 15;24(6):614-619. doi: 10.7499/j.issn.1008-8830.2203008.
6
Psychosocial status of patients with unilateral and bilateral microtia before auricular reconstruction surgery.单侧和双侧小耳畸形患者在耳廓重建手术前的心理社会状况。
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7
International Consensus Recommendations on Microtia, Aural Atresia and Functional Ear Reconstruction.关于小耳畸形、外耳道闭锁及功能性耳再造的国际共识建议
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8
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Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers.解释配偶照顾者照顾负担中的性别差距。
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先天性小耳畸形病例中照顾者负担及其影响因素的研究

An examination of caregiver burden and contributing factors in cases of congenital microtia deformity.

机构信息

Department of Plastic and Reconstructive Surgery, Xijing Hospital, Forth Military Medical University, Xi'an, Shaanxi, China.

出版信息

Medicine (Baltimore). 2024 Oct 25;103(43):e40263. doi: 10.1097/MD.0000000000040263.

DOI:10.1097/MD.0000000000040263
PMID:39470541
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11521080/
Abstract

This study aimed to assess the burden and influencing factors among primary caregivers of children with congenital microtia. A total of 153 primary caregivers of children with congenital microtia who underwent auricular reconstruction surgery at a tertiary A-grade hospital in Xi'an between October 2019 and August 2022, were recruited using convenience sampling. The Zarit Caregiver Burden Interview (ZBI) was employed to evaluate caregiver burden. While convenience sampling allowed for the practical recruitment of participants, its limitations include potential selection bias, which may affect the generalizability of the results. The mean total ZBI score was 30.07 ± 12.29. Among the participants, 26 caregivers (17.0%) reported no burden, 102 caregivers (66.7%) reported mild burden, 22 caregivers (14.4%) reported moderate burden, and 3 caregivers (2.0%) reported severe burden. Multivariate regression analysis identified several significant factors influencing caregiver burden, including the location and severity of the lesion, educational level, method of medical payment, monthly household income, communication with others about the child's condition, caregiver self-blame or guilt, and family support (all P < .05). Primary caregivers of children with congenital microtia face substantial burdens, emphasizing the need for targeted healthcare interventions. Strategic approaches are essential to address the psychological, social, and financial challenges they encounter. Future research should focus on longitudinal studies and interventions to enhance caregiver well-being and patient outcomes. However, caution is advised when generalizing these findings due to the sampling limitations.

摘要

本研究旨在评估先天性小耳畸形患儿主要照顾者的负担和影响因素。2019 年 10 月至 2022 年 8 月,采用便利抽样法,选取在西安某三级 A 等医院行耳廓再造术的 153 例先天性小耳畸形患儿的主要照顾者。采用照顾者负担量表(ZBI)评估照顾者负担。便利抽样虽然便于实际招募参与者,但存在选择偏倚的局限性,可能影响结果的普遍性。ZBI 总分的平均值为 30.07±12.29。其中,26 名照顾者(17.0%)无负担,102 名照顾者(66.7%)轻度负担,22 名照顾者(14.4%)中度负担,3 名照顾者(2.0%)重度负担。多因素回归分析发现影响照顾者负担的几个显著因素,包括病变部位和严重程度、文化程度、医疗支付方式、月家庭收入、与他人交流患儿病情、照顾者自责或内疚、家庭支持(均 P<0.05)。先天性小耳畸形患儿的主要照顾者负担较重,强调需要针对性的医疗干预。需要采取策略性方法来应对他们面临的心理、社会和经济挑战。未来的研究应关注纵向研究和干预措施,以提高照顾者的幸福感和患者的治疗效果。但由于抽样限制,在推广这些发现时应谨慎。