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儿童血液癌患者家庭的心理社会负担。

The Psychosocial Burden of Families with Childhood Blood Cancer.

机构信息

Business School and GobLab UAI, Universidad Adolfo Ibáñez, Santiago 7941169, Chile.

出版信息

Int J Environ Res Public Health. 2022 Jan 5;19(1):599. doi: 10.3390/ijerph19010599.

Abstract

Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers' spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.

摘要

癌症是儿童死亡的第二大主要原因,在智利白血病是最常见的儿科癌症诊断。儿童癌症是一种创伤性经历,会给患者及其家庭带来痛苦、悲伤和其他负面体验。因此,心理社会成本是癌症总负担的重要组成部分。本研究调查了智利 90 个血液相关癌症儿童家庭样本中的心理社会体验。我们提供了家庭体验的概述,重点关注患者、照顾者和兄弟姐妹。我们发现,大多数家庭报告在诊断时受到负面影响;家庭动态受到干扰;患者出现一系列负面情绪,如抑郁、沮丧和易怒;以及社交生活困难。此外,他们报告患者的兄弟姐妹与父母之间、照顾者配偶/伴侣关系以及主要照顾者的经济状况恶化。此外,样本中的一半以上家庭因诊断和/或治疗而不得不搬家。促进可以帮助患者、兄弟姐妹和父母应对痛苦、促进适应力和幸福感的干预措施非常重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f395/8744617/d4d3f3883644/ijerph-19-00599-g001.jpg

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