Alder Hey Children's NHS Foundation Trust Liverpool, Merseyside, UK.
Faculty of Health and Wellbeing, University of Central Lancashire, Preston, UK.
J Child Health Care. 2024 Dec;28(4):815-828. doi: 10.1177/13674935231169409. Epub 2023 Apr 12.
This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from nine families) whose child had a new tracheostomy were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child's life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and how they reframed their perspectives about their child's tracheostomy. Parents' resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model that explains this process of change, this results in transferable knowledge, useful for understanding and explaining the experience of other parents and families.
本研究旨在探讨父母在面对照顾气管造口患儿的挑战时如何培养个人韧性。本研究采用纵向定性设计。在 12 个月的时间里，分三个时间点对 12 名（来自 9 个家庭）孩子新做气管造口的父母进行了非结构化叙事访谈。采用社会叙事学方法对数据进行分析。研究结果揭示了父母在孩子接受气管造口后的 12 个月中所经历的历程、他们的感受变化以及培养韧性的过程。父母在早期的故事中表达了情感动荡、消极情绪、压力和震惊。由于医疗需要，父母几乎没有选择，只能让孩子接受气管造口。一旦孩子的生命脱离危险，父母就开始重新构建他们的经历和信念。韧性在父母如何看待和面对他们的处境方面起着重要作用，使他们能够应对出现的情况并继续生活。不同方面的韧性，如自我意识、毅力、感恩、内部控制点和重新构建，在不同的时间点发挥作用。父母表示，他们面临的挑战让他们感到压力很大，以及他们如何重新构建他们对孩子气管造口的看法。父母的韧性和重新构建是在 ABC-X 模型的背景下讨论的。本研究确定了一个理论模型，该模型解释了这种变化过程，从而产生了可转移的知识，有助于理解和解释其他父母和家庭的经验。
