基于系谱图探索中国接受造血干细胞移植治疗血液系统疾病患儿的父母在决策过程中的体验。
Exploring parents' experience in the decision-making process for children with haematological diseases receiving haematopoietic stem cell transplantation in China based on genograms.
机构信息
Clinical Research Center for Mental Disorders, Shanghai Pudong New Area Mental Health Center, School of Medicine, Tongji University, Shanghai 200124, China; Department of Clinical Psychology, Shanghai East Hospital, School of Medicine, Tongji University, Shanghai 200092, China; Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai 200127, China.
Clinical Research Center for Mental Disorders, Shanghai Pudong New Area Mental Health Center, School of Medicine, Tongji University, Shanghai 200124, China; Department of Clinical Psychology, Shanghai East Hospital, School of Medicine, Tongji University, Shanghai 200092, China.
出版信息
J Pediatr Nurs. 2022 Mar-Apr;63:e18-e26. doi: 10.1016/j.pedn.2021.11.005. Epub 2021 Nov 16.
PURPOSE
To explore parents' experience in the decision-making process for children with haematological diseases receiving haematopoietic stem cell transplantation (HSCT) based on genograms.
DESIGN AND METHODS
A qualitative study based on genogram was conducted. Seven pairs of parents completed their genogram and a semi-structured interview. Two related donors were interviewed to discuss their experiences in the decision-making process of donating bone marrow to their loved ones. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis.
RESULTS
The genogram presents the complete family structure, family member relationships and incident-related conflicts. Two superordinate themes emerged from the data analysis. The first theme was transplantation decision motivations, including four subthemes: the values of life priority, empathy based on kinship, inheritance of family blood, trust in doctors and medical science. The second theme was transplantation decision conflicts, including four subthemes: decision-making conflicts among family members, related-donor decision-making conflicts, risk-benefit game, blind optimism and insufficient cognition conflict.
CONCLUSIONS
Genogram can show the hidden resources and conflicts of each family and help the care providers better understand parents' experience and the decision-making dilemmas in the decision-making process for children with haematological diseases receiving HSCT. The needs of transplant families for treatment-related information were not fully met.
PRACTICE IMPLICATIONS
It is necessary for medical staff to increase psychological and informational support for donors and their families when the parents of patients make bone marrow transplant decisions. Medical staff should engage in family-focused systematic interventions to reduce the psychological burden and conflicts of decision makers.
目的
基于系谱图探索接受造血干细胞移植（HSCT）的血液系统疾病患儿父母在决策过程中的体验。
设计和方法
这是一项基于系谱图的定性研究。7 对父母完成了系谱图和半结构化访谈。还采访了 2 位相关供者，讨论他们在向亲人捐献骨髓的决策过程中的经历。访谈内容逐字转录，并使用解释现象学分析进行分析。
结果
系谱图呈现了完整的家庭结构、家庭成员关系和与事件相关的冲突。从数据分析中得出了两个上位主题。第一个主题是移植决策动机，包括 4 个子主题：生命优先价值观、亲情同理心、家庭血缘传承、对医生和医学的信任。第二个主题是移植决策冲突，包括 4 个子主题：家庭成员之间的决策冲突、相关供者的决策冲突、风险-收益博弈、盲目乐观和认知不足的冲突。
结论
系谱图可以显示每个家庭的隐藏资源和冲突，帮助护理提供者更好地了解接受 HSCT 的血液系统疾病患儿父母的体验以及在决策过程中的决策困境。移植家庭对治疗相关信息的需求没有得到充分满足。
实践意义
当患者的父母做出骨髓移植决定时，医护人员有必要增加对供者及其家庭的心理和信息支持。医护人员应进行以家庭为中心的系统干预，以减轻决策者的心理负担和冲突。
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