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Arch Dis Child. 2018 Feb;103(2):192-198. doi: 10.1136/archdischild-2015-310023. Epub 2017 Sep 16.
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J Pediatr. 2017 Aug;187:253-257. doi: 10.1016/j.jpeds.2017.05.006. Epub 2017 Jun 1.
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Pediatric Liver Transplantation.小儿肝移植
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A systematic review of parent and family functioning in pediatric solid organ transplant populations.对儿科实体器官移植人群中父母及家庭功能的系统评价。
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Parents' quality of life and family functioning in pediatric organ transplantation.小儿器官移植中父母的生活质量与家庭功能
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小儿肝移植:照顾者的生活质量。

Pediatric Liver Transplantation: Caregivers' Quality of Life.

作者信息

Bastos Tavares Ana Paula, Seixas Lucas Belém Pessôa de Melo Guerra, Jayme Caren Lopes Wanderlei, Porta Gilda, Seixas Renata Belém Pessôa de Melo, de Carvalho Elisa

机构信息

Department of Pediatric Gastroenterology, Brasília José de Alencar Children's Hospital, Brasília, Brazil.

Department of Pediatric Hepatology and Liver Transplantation, University of Sao Paulo School of Medicine, São Paulo, Brazil.

出版信息

Pediatr Gastroenterol Hepatol Nutr. 2022 Nov;25(6):489-499. doi: 10.5223/pghn.2022.25.6.489. Epub 2022 Nov 2.

DOI:10.5223/pghn.2022.25.6.489
PMID:36451695
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9679308/
Abstract

PURPOSE

The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient's family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it.

METHODS

This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation.

RESULTS

Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; <0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents' perception of the child's health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; <0.05).

CONCLUSION

The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child's care.

摘要

目的

接受肝移植的儿科患者的生存率已大幅提高。尽管如此,移植后的时期仍然复杂,给负责护理管理的受者家庭带来了诸多挑战。最近,人们越来越关注这一复杂过程对护理人员生活质量的影响。因此,本研究旨在评估肝移植患者护理人员的生活质量及其影响因素。

方法

这是一项观察性横断面研究。2020年11月至2021年1月,向接受小儿肝移植的儿童和青少年的主要护理人员发放了36项简式问卷及附加问题。

结果

共完成38份问卷,结果显示与巴西标准相比,生活质量较低,主要体现在精神领域(41.8±14.1对51.1±2.8;<0.001)。它与社会经济或移植相关因素无显著关联,但对父母对孩子健康状况的认知有负面影响。报告孩子健康状况较差的父母,其精神生活质量较低(44.1±13.8对33.3±12.6;<0.05)。

结论

移植儿童的护理人员生活质量低于当地人群。应定期为家长提供心理援助,进行长期随访,以减轻对移植儿童护理的潜在负面影响。