Anthony Samantha J, Nicholas David B, Regehr Cheryl, West Lori J
Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, Toronto, Ontario, Canada.
Pediatr Transplant. 2014 Dec;18(8):868-74. doi: 10.1111/petr.12368. Epub 2014 Oct 4.
Despite the establishment of heart transplantation as a life-saving therapy for children and adolescents, little research has focused on the biopsychosocial impact of the transplant process. Few studies have captured the subjective experiences of young heart transplant recipients. This study examined the experiences and perspectives of children and adolescents during the pretransplant phase of waiting for a donor organ. Grounded theory methods guided data collection and analysis. A total of 27 adolescents participated in semistructured qualitative interviews. Findings illuminate the waiting period for pediatric heart transplantation to be a pervasive experience, with consequent impact on physical, psychological, and social well-being. Participants described various biopsychosocial processes and experiences that occurred during this time, with data analysis yielding themes reflecting notions of "struggling to survive," including physical limitations, lethargy, social isolation, discomfort with physical appearance, and academic issues. This research identifies the pretransplant experience as a period framed within a text of debilitation and negative self-perceptions related to health and well-being. Supporting children and their families as they navigate this complex and uncertain journey is merited, and results invite further interventional development and research.
尽管心脏移植已成为治疗儿童和青少年的一种挽救生命的疗法，但很少有研究关注移植过程对生物心理社会的影响。很少有研究记录年轻心脏移植受者的主观体验。本研究考察了儿童和青少年在等待供体器官的移植前阶段的经历和观点。扎根理论方法指导数据收集和分析。共有27名青少年参与了半结构化定性访谈。研究结果表明，小儿心脏移植的等待期是一种普遍存在的经历，会对身体、心理和社会幸福感产生影响。参与者描述了这段时间内发生的各种生物心理社会过程和经历，数据分析得出了反映“为生存而挣扎”概念的主题，包括身体限制、无精打采、社会隔离、对身体外观的不适以及学业问题。本研究将移植前的经历确定为一个与健康和幸福感相关的虚弱和负面自我认知的文本框架内的时期。在儿童及其家庭经历这一复杂而不确定的过程时给予支持是值得的，研究结果也促使进一步开展干预措施的开发和研究。
