Department of Paediatrics, University of Ibadan, Ibadan Nigeria.
Health Soc Care Community. 2010 May;18(3):289-95. doi: 10.1111/j.1365-2524.2009.00903.x. Epub 2010 Jan 27.
Sickle cell anaemia in children is characterised by recurrent crises that frequently involve intensive medical care which may impact on the health and well-being of their carers. The psychosocial impact of sickle cell disease on 67 carers of children with sickle cell disease attending the Paediatric Haematology/Oncology clinic of the University College Hospital, Ibadan, Nigeria, was determined between February and May 2007 using a structured questionnaire adapted from an instrument earlier validated for the study of carer burden in sickle cell disease and relevant to the Nigerian culture. Data analysis was performed using the Statistical Package for Social Sciences (SPSS) version 15.0. Demographic factors as well as frequency of hospitalisations and blood transfusions were each categorised into groups and the Mann-Whitney U-test was used to test for differences in stress scores between any two groups while the Kruskal-Wallis test was used to test for differences in more than two groups. Level of statistical significance was set at P < 0.05. Family finances were adversely affected in 39 (58.2%) families. Financial stress was frequently associated with a history of two or more hospitalisations in the previous year and more so in families with more than three children. Majority (80.6%) of the carers said they had minimal or no difficulty coping with their children. There was also a significant correlation between financial stress and difficulty in parental coping. Caring for the illnesses in the children often caused disruptions in family interactions; worst in the first year after diagnosis and improved over the years. Regular assessment of psychosocial areas of need is necessary to guide provision of necessary support.
儿童镰状细胞性贫血的特征是反复发作的危象,这些危象经常需要密集的医疗护理,这可能会影响照顾者的健康和幸福。2007 年 2 月至 5 月,我们使用一种从先前用于镰状细胞病照顾者负担研究的工具改编而来的结构化问卷,在尼日利亚伊巴丹大学教学医院儿科血液科/肿瘤科,对 67 名镰状细胞病儿童照顾者的心理社会影响进行了评估,这种问卷适用于尼日利亚文化。使用社会科学统计软件包(SPSS)版本 15.0 进行数据分析。人口统计学因素以及住院和输血的频率均分为几组,使用曼-惠特尼 U 检验来检验两组之间的压力评分差异,而使用克鲁斯卡尔-沃利斯检验来检验两组以上的差异。统计显著性水平设置为 P < 0.05。39 个(58.2%)家庭的家庭财务受到不利影响。财务压力通常与前一年有两次或两次以上住院的病史有关,而在有三个以上孩子的家庭中更为常见。大多数(80.6%)照顾者表示,他们应对孩子的疾病几乎没有困难或没有困难。财务压力与父母应对困难之间也存在显著相关性。照顾孩子的疾病经常会导致家庭互动中断;在诊断后的第一年最严重,随着时间的推移会有所改善。定期评估心理社会需求领域是提供必要支持的必要条件。