Duke Global Health Institute, Duke University.
Department of Psychology & Neuroscience, Duke University.
J Pediatr Psychol. 2020 Jun 1;45(5):561-572. doi: 10.1093/jpepsy/jsaa021.
To characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial hardship.
Primary caregivers (N = 103) of children aged 1-10 years diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life (QOL), adjustment to child illness, mental health, and financial hardship. Descriptive statistics characterize psychosocial burden, and linear models assess associations.
On indicators of QOL, caregivers report multiple difficulties across most domains, including daily activities and physical, social, cognitive, and emotional well-being. Daily activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the greatest concern, followed by long-term uncertainty and unresolved sorrow and anger; relative to these, they reported higher levels of emotional resources. Financial hardship was high, as caregivers reported moderate to major financial losses due to the time spent caring for their child. General linear model analyses revealed that level of financial hardship was a significant predictor of all negative psychosocial outcomes.
Results document that Kenyan caregivers of children with SCD experience difficulties across multiple domains of functioning and that financial difficulties are likely associated with psychosocial burden. Results can guide intervention development for caregivers of children with SCD in low-resource, global contexts.
描述肯尼亚镰状细胞病（SCD）患儿照顾者所面临的心理社会负担的类型和程度，并确定照顾者心理社会负担的预测因素，包括疾病严重程度和经济困难。
103 名年龄在 1-10 岁之间被诊断患有 SCD 的儿童的主要照顾者完成了多项照顾者生活质量（QOL）、儿童疾病适应、心理健康和经济困难领域的调查。描述性统计数据描述了心理社会负担，线性模型评估了关联。
在 QOL 指标上，照顾者报告了在大多数领域存在多种困难，包括日常活动以及身体、社交、认知和情感福祉。日常活动是最具负担的。在慢性疾病父母适应的指标上，内疚和担忧是最大的关注点，其次是长期的不确定性和未解决的悲伤和愤怒；与这些相比，他们报告了更高水平的情绪资源。经济困难很严重，因为照顾者报告由于照顾孩子而花费的时间导致中度到重大的经济损失。一般线性模型分析表明，经济困难程度是所有负面心理社会结果的显著预测因素。
研究结果表明，肯尼亚 SCD 患儿的照顾者在多个功能领域都面临困难，经济困难可能与心理社会负担有关。研究结果可以为资源匮乏的全球背景下 SCD 患儿的照顾者干预措施的制定提供指导。
