Aloufi Yousef, Al-Dubai Sami, Alamri Asim A, Lodhi Abdulghani, Alammari Saeed S, Aloufi Fayez
Preventive Medicine, Al Madinah Health Cluster, Ministry of Health, Madinah, SAU.
Preventive Medicine Post Graduate Studies, Al Madinah Health Cluster, Ministry of Health, Madinah, SAU.
Cureus. 2024 Aug 5;16(8):e66160. doi: 10.7759/cureus.66160. eCollection 2024 Aug.
Background Sickle cell anemia (SCA) results in various complications, necessitating continuous daily care and placing burdens on caregivers. Objectives This study aims to assess the burden on family caregivers of children with SCA and its associated factors. Materials and methods This analytical cross-sectional study was conducted in Madinah City, Saudi Arabia. We included family caregivers of children with SCA who were registered and treated at the Maternity and Child Hospital in King Salman Medical City. Data were collected from all registered files of children who received treatment for SCA. Data from participants was obtained using the validated Arabic version of the Zarit Burden Interview (ZBI). Descriptive statistics, chi-square tests, independent sample t-tests, and multivariate regression analysis were used in the statistical analysis. Results Overall, 124 caregivers participated out of 166 (response rate: 74.7%), among which 83 (66.9%) were fathers, 72 (58.1%) were aged ≥40 years, 96 (77.4%) held Saudi nationality, and 62 (50%) had a monthly income of <5000 SAR. The average daily caregiving hours were 5±4 hours, and 30 (24.2%) of children were diagnosed with associated physical or psychological diseases. The Zarit Burden Interview score indicated that 45 (36.3%) of caregivers reported no burden, whereas 51 (41.1%), 22 (17.7%), and 6 (4.8%) reported mild, moderate, and severe burden, respectively. Factors contributing to the burden included being a mother, low financial resources, non-Saudi nationality, children diagnosed with associated physical or psychological diseases, and caregiving hours. Conclusions The burden on SCA caregivers was higher for caregivers who were mothers, non-Saudis, those with lower income, and children with physical or psychological diseases, as well as more caregiving hours. Enhancing the overall well-being of families affected by the SCA burden involves creating targeted interventions and comprehensive support programs.
背景 镰状细胞贫血（SCA）会导致各种并发症，需要持续的日常护理，给照料者带来负担。目的 本研究旨在评估SCA患儿家庭照料者的负担及其相关因素。材料与方法 本分析性横断面研究在沙特阿拉伯麦地那市进行。我们纳入了在国王萨勒曼医疗城妇幼医院登记并接受治疗的SCA患儿的家庭照料者。数据从所有接受SCA治疗的患儿的登记档案中收集。使用经过验证的阿拉伯语版Zarit照料负担访谈量表（ZBI）获取参与者的数据。统计分析采用描述性统计、卡方检验、独立样本t检验和多元回归分析。结果 总体而言，166名照料者中有124名参与（应答率：74.7%），其中83名（66.9%）是父亲，72名（58.1%）年龄≥40岁，96名（77.4%）拥有沙特国籍，62名（50%）月收入<5000沙特里亚尔。平均每日照料时长为5±4小时，30名（24.2%）患儿被诊断患有相关身体或心理疾病。Zarit照料负担访谈量表得分表明，45名（36.3%）照料者报告无负担，而51名（41.1%）、22名（17.7%）和6名（4.8%）分别报告有轻度、中度和重度负担。导致负担的因素包括母亲身份、经济资源匮乏、非沙特国籍、被诊断患有相关身体或心理疾病的患儿以及照料时长。结论 对于母亲、非沙特人、收入较低者、患有身体或心理疾病的患儿的照料者以及照料时长较长的照料者而言，SCA照料者的负担更高。提高受SCA负担影响家庭的整体幸福感需要制定有针对性的干预措施和全面的支持计划。
