Karadağ Gülendam, Güngörmüş Zeynep, Olçar Zeynep
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.
J Caring Sci. 2018 Sep 1;7(3):125-129. doi: 10.15171/jcs.2018.020. eCollection 2018 Sep.
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.
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。