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本文引用的文献

1
The impact of dialysis modality on quality of life: a systematic review.透析方式对生活质量的影响:一项系统综述。
J Ren Care. 2011 Dec;37(4):190-200. doi: 10.1111/j.1755-6686.2011.00244.x.
2
Peritoneal dialysis in children with end-stage renal disease.儿童终末期肾病的腹膜透析。
Nat Rev Nephrol. 2011 Sep 27;7(11):659-68. doi: 10.1038/nrneph.2011.135.
3
A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions.慢性病患儿的医生、家长及患儿自身对健康状况及健康相关生活质量报告的比较。
Child Care Health Dev. 2012 Mar;38(2):186-95. doi: 10.1111/j.1365-2214.2011.01240.x. Epub 2011 Jun 8.
4
Characteristics of dialysis important to patients and family caregivers: a mixed methods approach.对患者和家属照护者而言重要的透析特征:混合方法研究。
Nephrol Dial Transplant. 2011 Dec;26(12):4038-46. doi: 10.1093/ndt/gfr177. Epub 2011 Apr 11.
5
Peritoneal dialysis in infants and young children.婴儿和幼儿的腹膜透析。
Semin Nephrol. 2011 Mar;31(2):213-24. doi: 10.1016/j.semnephrol.2011.01.009.
6
Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure.慢性肾衰竭患儿父母的健康相关生活质量、心理社会压力和应对方式。
Pediatr Nephrol. 2010 Aug;25(8):1477-85. doi: 10.1007/s00467-010-1540-z. Epub 2010 May 12.
7
Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study.父母对照顾慢性肾病患儿的看法:一项深入访谈研究。
Child Care Health Dev. 2010 Jul;36(4):549-57. doi: 10.1111/j.1365-2214.2010.01067.x. Epub 2010 Apr 15.
8
Quality of life in children with chronic kidney disease (with child and parent assessments).儿童慢性肾脏病患者的生活质量(包括儿童和家长评估)。
Pediatr Nephrol. 2010 Aug;25(8):1487-96. doi: 10.1007/s00467-010-1486-1. Epub 2010 Apr 10.
9
Individual quality of life in chronic kidney disease: influence of age and dialysis modality.慢性肾脏病患者的个体生活质量:年龄及透析方式的影响
Clin J Am Soc Nephrol. 2009 Apr;4(4):711-8. doi: 10.2215/CJN.05191008. Epub 2009 Apr 1.
10
Quality of life in children with end-stage renal disease: does treatment modality matter?终末期肾病患儿的生活质量:治疗方式有影响吗?
Perit Dial Int. 2009 Feb;29 Suppl 2:S190-1.

儿童及其接受自动化腹膜透析治疗的家庭的心理社会方面。

Psychosocial aspects of children and families of children treated with automated peritoneal dialysis.

机构信息

Department of Paediatric Nephrology, Wrocław Medical University, ul. Borowska 213, 50-556, Wrocław, Poland,

出版信息

Pediatr Nephrol. 2013 Nov;28(11):2157-67. doi: 10.1007/s00467-013-2532-6. Epub 2013 Aug 16.

DOI:10.1007/s00467-013-2532-6
PMID:23949628
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3824203/
Abstract

BACKGROUND

The aim of this study was to analyze psychosocial aspects of chronic kidney disease (CKD) in children treated with automated peritoneal dialysis (APD).

METHODS

The study assessed 41 children > 2 (range 2.1-18) years of age and their parents. Data concerning the illness and sociodemographic parameters were collected. Patients completed the Paediatric Quality of Life Inventory (PedsQL) and their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and Caregiver's Burden Scale (CBS).

RESULTS

Parents rated their children's overall health-related quality of life (QoL) as well as their physical and emotional functioning lower than the patients themselves. The majority of primary caregivers had a medium level of the total burden index in the CBS and higher values in the scales need for support and perceived available support than in the received support (BSSS). In the GHQ-12, 51.2% of primary caregivers had scores >2 points, which indicated the possible occurrence of abnormal mental functioning.

CONCLUSIONS

Financial support for patients' families is necessary. Parents who provide primary care to children on PD require, above all, emotional support and assistance in self-fulfilment. More than half of them may have impaired mental function. There is the strong need to provide continuous psychological care for caregivers. Differences in perception of the children's activity in varied areas by the patients themselves and their caregivers may contribute to further problems within families.

摘要

背景

本研究旨在分析接受自动化腹膜透析(APD)治疗的儿童慢性肾脏病(CKD)的心理社会方面。

方法

该研究评估了 41 名年龄>2 岁(范围 2.1-18 岁)的儿童及其父母。收集了有关疾病和社会人口统计学参数的数据。患者完成了儿科生活质量量表(PedsQL),其父母完成了 PedsQL-代理版本、一般健康问卷(GHQ-12)、柏林社会支持量表(BSSS)和照顾者负担量表(CBS)。

结果

父母对孩子的整体健康相关生活质量(QoL)以及身体和情绪功能的评分低于孩子自己。大多数主要照顾者在 CBS 中的总负担指数中处于中等水平,在需要支持和感知可用支持的量表中的值高于收到的支持(BSSS)。在 GHQ-12 中,51.2%的主要照顾者得分>2 分,这表明可能存在异常精神功能。

结论

有必要为患者家庭提供经济支持。为 PD 患儿提供主要照顾的父母首先需要情感支持和自我实现的帮助。其中一半以上的人可能存在精神功能受损的问题。迫切需要为照顾者提供持续的心理关怀。患者和他们的照顾者对孩子在不同领域的活动的感知差异可能会导致家庭内部进一步出现问题。