School of Nursing, Psychotherapy and Community Health, Dublin City University, Ireland.
School of Nursing, Psychotherapy and Community Health, Dublin City University, Ireland.
J Pediatr Nurs. 2021 Jul-Aug;59:25-31. doi: 10.1016/j.pedn.2020.12.015. Epub 2021 Jan 7.
To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition.
A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions.
'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'.
Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.
探讨父母在得知孩子患有非恶性生命终末期疾病时的经历。
采用单一事件、一对一的半结构式访谈，对 23 名患有非恶性生命终末期疾病的儿童的父母进行了定性描述性研究。
父母回忆起孩子被诊断出疾病的那一刻时，“在迷茫中开始”是核心概念。分析揭示了这一概念内的三个主要的不同但相互关联的主题，帮助我们更好地了解父母在这个特定时期的经历，即：“进入全新的世界”、“获得学习许可”和“探索未知领域”。
父母得知孩子的诊断结果非常痛苦，情绪非常混乱。父母对诊断的认识过程与诊断过程有关。信息和沟通需求应因人而异。这些发现对服务提供具有影响，特别是在此时提供支持性护理方面。
