• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

相似文献

1
Experiences and Problems Encountered by Families of Children with Sickle Cell Anemia.镰状细胞贫血患儿家庭的经历与遇到的问题
J Caring Sci. 2018 Sep 1;7(3):125-129. doi: 10.15171/jcs.2018.020. eCollection 2018 Sep.
2
[Old and new long stay patients in French psychiatric institutions: results from a national random survey with two-year follow-up].[法国精神病院的新老长期住院患者:一项为期两年随访的全国随机调查结果]
Encephale. 2005 Jul-Aug;31(4 Pt 1):466-76. doi: 10.1016/s0013-7006(05)82408-x.
3
Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home.带着痛苦与充实生活:家中有使用呼吸机辅助的孩子的家庭的道德体验。
Pediatrics. 2006 Jan;117(1):e48-60. doi: 10.1542/peds.2005-0789.
4
Family pediatrics: report of the Task Force on the Family.家庭儿科学:家庭问题特别工作组报告
Pediatrics. 2003 Jun;111(6 Pt 2):1541-71.
5
Magnesium for treating sickle cell disease.镁用于治疗镰状细胞病。
Cochrane Database Syst Rev. 2017 Apr 14;4(4):CD011358. doi: 10.1002/14651858.CD011358.pub2.
6
[The impact on families of sickle cell disease in Togo].[镰状细胞病对多哥家庭的影响]
Arch Pediatr. 2000 Jun;7(6):615-20. doi: 10.1016/s0929-693x(00)80128-1.
7
Comprehensive neuropsychological evaluation of children and adolescents with sickle cell anemia: a hospital-based sample.镰状细胞贫血儿童和青少年的综合神经心理学评估:一项基于医院的样本研究。
Rev Bras Hematol Hemoter. 2017 Jan-Mar;39(1):32-39. doi: 10.1016/j.bjhh.2016.09.004. Epub 2016 Oct 7.
8
Magnesium for treating sickle cell disease.镁用于治疗镰状细胞病。
Cochrane Database Syst Rev. 2019 Sep 9;9(9):CD011358. doi: 10.1002/14651858.CD011358.pub3.
9
Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers.在孩子被诊断为残疾前后满足家长的需求:对一项由关键工作者提供信息、支持和联络的新项目的评估。
Pediatrics. 2004 Oct;114(4):e477-82. doi: 10.1542/peds.2004-0240.
10
[Mortality of children with sickle cell disease in a pediatric department in Central Africa].[中非某儿科部门镰状细胞病患儿的死亡率]
Arch Pediatr. 1998 Sep;5(9):965-9. doi: 10.1016/s0929-693x(98)80003-1.

引用本文的文献

1
Assessment of Burden on Family Caregivers of Children With Sickle Cell Anemia in Al Madinah Al Munawwarah, Saudi Arabia.沙特阿拉伯麦地那市镰状细胞贫血患儿家庭照顾者负担的评估
Cureus. 2024 Aug 5;16(8):e66160. doi: 10.7759/cureus.66160. eCollection 2024 Aug.
2
Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana.儿童镰状细胞病(SCD)非正规照护者的负担:加纳塔马利教学医院的定性探索性研究。
BMJ Open. 2023 Apr 6;13(4):e066311. doi: 10.1136/bmjopen-2022-066311.
3
Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.巴林一家三级护理医院中照顾者为镰状细胞病青少年寻求护理的体验。
PLoS One. 2022 Apr 7;17(4):e0266501. doi: 10.1371/journal.pone.0266501. eCollection 2022.
4
Profile of Medicaid enrollees with sickle cell disease: A high need, high cost population.患有镰状细胞病的医疗补助参保者概况:高需求、高费用人群。
PLoS One. 2021 Oct 27;16(10):e0257796. doi: 10.1371/journal.pone.0257796. eCollection 2021.

本文引用的文献

1
Hematopoietic stem cell transplantation for sickle cell disease: The changing landscape.镰状细胞病的造血干细胞移植:不断变化的形势。
Hematol Oncol Stem Cell Ther. 2017 Dec;10(4):259-266. doi: 10.1016/j.hemonc.2017.05.008. Epub 2017 Jun 15.
2
Socio-demographic characteristics and psychosocial consequences of sickle cell disease: the case of patients in a public hospital in Ghana.镰状细胞病的社会人口学特征及心理社会后果:以加纳一家公立医院的患者为例
J Health Popul Nutr. 2017 Jan 31;36(1):4. doi: 10.1186/s41043-017-0081-5.
3
Pain frequency, severity and QT dispersion in adult patients with sickle cell anemia: correlation with inflammatory markers.成年镰状细胞贫血患者的疼痛频率、严重程度及QT离散度:与炎症标志物的相关性
J Blood Med. 2016 Oct 31;7:255-261. doi: 10.2147/JBM.S114585. eCollection 2016.
4
Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications.针对患者及护理人员的干预措施,以提高对镰状细胞病的认识及其相关并发症的识别能力。
Cochrane Database Syst Rev. 2016 Oct 6;10(10):CD011175. doi: 10.1002/14651858.CD011175.pub2.
5
An Education Programme on Sickle Cell Anemia and ß-Thalassemia for the 8th Grade Students.面向八年级学生的镰状细胞贫血和β地中海贫血教育项目。
Turk J Haematol. 2003 Mar 5;20(1):19-24.
6
Sickle cell anemia in Brazil: personal, medical and endodontic patterns.巴西的镰状细胞贫血:个人、医学及牙髓病学模式。
Braz Oral Res. 2016 May 20;30(1). doi: 10.1590/1807-3107BOR-2016.vol30.0060.
7
Sickle cell disease in western Sudan: genetic epidemiology and predictors of knowledge attitude and practices.苏丹西部的镰状细胞病:遗传流行病学及知识、态度和行为的预测因素
Trop Med Int Health. 2016 May;21(5):642-53. doi: 10.1111/tmi.12689. Epub 2016 Mar 29.
8
Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria.尼日利亚东南部镰状细胞病患儿父母对自身镰状细胞基因型的了解与认识
J Community Genet. 2015 Oct;6(4):369-74. doi: 10.1007/s12687-015-0225-5. Epub 2015 Apr 14.
9
Challenge of managing sickle cell disease in a pediatric population living in kinshasa, democratic republic of congo: a sickle cell center experience.在刚果民主共和国金沙萨的儿童群体中管理镰状细胞病的挑战:镰状细胞中心的经验
Hemoglobin. 2014;38(3):196-200. doi: 10.3109/03630269.2014.896810. Epub 2014 Mar 26.
10
Development and feasibility of a home-based education model for families of children with sickle cell disease.镰状细胞病患儿家庭居家教育模式的开发与可行性研究
BMC Public Health. 2014 Feb 5;14:116. doi: 10.1186/1471-2458-14-116.

镰状细胞贫血患儿家庭的经历与遇到的问题

Experiences and Problems Encountered by Families of Children with Sickle Cell Anemia.

作者信息

Karadağ Gülendam, Güngörmüş Zeynep, Olçar Zeynep

机构信息

Department of Public Health Nursing, Faculty of Nursing, Dokuz Eylül University, İzmir, Turkey.

Department of Public Health Nursing, Faculty of Health Sciences, University of Gaziantep, Gaziantep, Turkey.

出版信息

J Caring Sci. 2018 Sep 1;7(3):125-129. doi: 10.15171/jcs.2018.020. eCollection 2018 Sep.

DOI:10.15171/jcs.2018.020
PMID:30283756
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6163154/
Abstract

Sickle Cell Anemia is a disease that has a high level of morbidity and early mortality for patients that are not followed and controlled properly. Study was conducted the aim of determining experiences and problems of families whose children with sickle cell anemia. Descriptive study was conducted the aim of determining experiences and problems of families (n= 206) whose children with sickle cell anemia. Before conducting this study, a written permission from the related institution and research ethics committee approval from Gaziantep University were obtained. Questionnaire is made up of two sections (10 questions), socio-demographic of families and data about their problems (15 questions and 11 statements). Data were evaluated SPSS (21.0), number and percentage calculations. It was determined that 96.1% of participants knew nothing about disease before their children were diagnosed, 92.7% of them are aware the disease was genetically inherited, all participants were a disease carrier themselves, and 93.7% of them had no blood tests before marriage. 97.1% of participants have no support from their spouses, It was determined that 98.5% of children suffer from pain, 60.7% suffer from weakness 51.5% of the participants apply to hospitals to decrease the problems and 48.5% use medications at home. A great number of families have problems regarding fear of losing their children, lack of social aid and support. Majority of children suffer from pain, weakness, exhaustion, they stay at hospital between at least 1 and 5 times a year, they need blood transfusion.

摘要

镰状细胞贫血是一种对于未得到妥善跟踪和控制的患者而言发病率高且早期死亡率高的疾病。开展了一项研究,旨在确定其子女患有镰状细胞贫血的家庭的经历和问题。对206名其子女患有镰状细胞贫血的家庭进行了描述性研究,以确定这些家庭的经历和问题。在开展本研究之前,获得了相关机构的书面许可和加济安泰普大学研究伦理委员会的批准。问卷由两部分组成(10个问题),包括家庭的社会人口统计学信息及其问题的数据(15个问题和11条陈述)。数据使用SPSS(21.0)进行评估,并进行数量和百分比计算。结果显示,96.1%的参与者在其子女被诊断出疾病之前对该疾病一无所知,92.7%的人知道该疾病是遗传的,所有参与者自身都是疾病携带者,93.7%的人在婚前没有进行过血液检测。97.1%的参与者没有得到配偶的支持,98.5%的儿童患有疼痛,60.7%的儿童患有虚弱症,51.5%的参与者前往医院以减轻问题,48.5%的人在家中使用药物。大量家庭在害怕失去孩子、缺乏社会援助和支持方面存在问题。大多数儿童患有疼痛、虚弱、疲惫,他们每年至少住院1至5次,需要输血。