Objective The COVID-19 pandemic and lockdown measures have had a clear psychological impact on families, and specifically those with children with chronic illnesses have reported greater overloads and exhaustion. The objective of this study was to evaluate the exposure, impact and experience of the pandemic on families of pediatric solid organ transplant (SOT) recipients compared to families of healthy children and adolescents. Methods We recruited 96 families, 48 with a pediatric SOT recipient and 48 healthy controls, matched by child age and gender. A primary caregiver from each family responded to an online sociodemographic questionnaire and the COVID-19 Exposure and Family Impact Survey (CEFIS), which explores the exposure, impact and experience of the pandemic and lockdown on families. Results Exposure to the pandemic was greater in families of healthy children and adolescents. The impact was mostly negative in both groups: caregivers reported increased anxiety (76%) and mood disturbances (71.9%) and hindered quality of sleep (64.6%) and health habits (58.3%). On the positive side, family relationships improved. Qualitatively, the SOT group positively perceived isolation and established hygienic measures as protective and destigmatizing, although they reported fear of virus transmission to their child. Conclusions The psychological impact of the pandemic has been similar in both groups, although families of transplant recipients have protected themselves more, probably because they are used to prevention measures and they see contagion as a graver risk. Additionally, SOT recipients’ families presented some idiosyncratic elements, especially a decrease in their perception of stigma associated with the medical condition.

中文翻译：

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COVID-19 对儿科实体器官移植受者家庭的影响


目标 COVID-19 大流行和封锁措施对家庭产生了明显的心理影响，特别是那些患有慢性疾病的儿童的家庭报告称，他们的负担更大，更疲惫。本研究的目的是与健康儿童和青少年的家庭相比，评估该流行病对儿科实体器官移植（SOT）接受者家庭的暴露、影响和经历。方法 我们招募了 96 个家庭，其中 48 个家庭有儿童 SOT 接受者，48 个健康对照家庭，按儿童年龄和性别进行匹配。每个家庭的主要看护人都填写了在线社会人口统计调查问卷和 COVID-19 暴露和家庭影响调查 (CEFIS)，该调查探讨了大流行和封锁对家庭的暴露、影响和经历。结果 健康儿童和青少年的家庭接触这种流行病的机会更大。两组的影响大多都是负面的：看护者报告焦虑增加（76%）和情绪紊乱（71.9%），睡眠质量（64.6%）和健康习惯（58.3%）受到影响。从积极的一面来看，家庭关系有所改善。从质量上看，SOT 群体积极地认为隔离并制定了卫生措施作为保护和消除污名，尽管他们报告担心病毒传播给孩子。结论 大流行对两组人群的心理影响相似，尽管移植受者的家人采取了更多的自我保护措施，可能是因为他们习惯了预防措施，并且认为传染是一个更大的风险。此外，SOT 接受者的家庭也呈现出一些特殊的因素，尤其是他们对与医疗状况相关的耻辱感的减少。