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“战争时期和不确定的和平时期”:儿童癌症幸存者父母的叙述。

"Times of war and time of uncertain peace": Narratives of parents of childhood cancer survivors.

机构信息

Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, PAHO/WHO Collaborating Centre for Nursing Research Development, Ribeirão Preto, SP, Brazil.

Universidad Pública de Navarra, Facultad de Ciencias de la Salud, Pamplona, Navarra, Spain.

出版信息

Rev Lat Am Enfermagem. 2024 Aug 30;32:e4263. doi: 10.1590/1518-8345.7005.4263. eCollection 2024.

Abstract

OBJECTIVE

to analyze the meaning attributed by parents to the extended and permanent survival of childhood cancer.

METHOD

qualitative narrative inquiry, developed with parents of adolescents and young adults who survived childhood cancer. Recruitment and data collection involved virtual and in-person approaches. The data were collected through semi-structured interviews. Data were analyzed according to reflective thematic analysis.

RESULTS

a total of ten parents were included in the study. Two thematic narrative syntheses were constructed: "Times of war"; and "Time of uncertain peace", with their respective sub-themes. The cancer diagnosis marks the beginning of times of war in the parents' lives. They experience cancer treatment as "highs and lows" with potential threats to their children's lives. After that, "Time of uncertain peace" are reached, and the balance of the family unit is reestablished. However, the fear of recurrence makes the family peace uncertain, and its maintenance requires constant vigilance and attention to the signs and symptoms of a possible new battle.

CONCLUSION

the results highlight the experience of being a parent of a childhood cancer survivor and can be applied to develop models of care centered on the survivors' family.

摘要

目的

分析父母对儿童癌症长期生存的意义赋予。

方法

采用定性叙事研究方法,研究对象为青少年和青年癌症幸存者的父母。招募和数据收集涉及虚拟和面对面的方法。通过半结构化访谈收集数据。根据反思性主题分析对数据进行分析。

结果

共有 10 名父母参与了研究。构建了两个主题叙事综合:“战争时期”和“不确定的和平时期”,以及各自的子主题。癌症诊断标志着父母生活中战争时期的开始。他们将癌症治疗经历描述为“跌宕起伏”,存在危及孩子生命的潜在威胁。之后,进入了“不确定的和平时期”,家庭单位的平衡得以重建。然而,复发的恐惧使家庭的平静变得不确定,要维护这种平静,需要时刻警惕并关注可能出现新战斗的迹象和症状。

结论

研究结果突出了作为儿童癌症幸存者父母的经历,可用于开发以幸存者家庭为中心的护理模式。

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