East and North Hertfordshire NHS Trust, Stevenage, Hertfordshire, UK.
University of Hertfordshire, Hatfield, UK.
J Child Health Care. 2024 Dec;28(4):786-803. doi: 10.1177/13674935231158456. Epub 2023 Mar 1.
An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine what matters most; explore day-to-day decision making and Advance Care Planning; and to inform local service development. Seven mothers from one community nursing service were interviewed using a semi-structured qualitative approach during the Coronavirus disease 2019 pandemic. Seven data-driven themes were identified following six phase thematic analysis: cherishing normality; navigating the system; being proactive; meaningful connections; beginner to expert - and back; they're not any child - they're my child; and Coronavirus disease 2019 pandemic. Practice implications include early discussion of what matters most and benefits of written plans to ensure fair access to treatment for children with complex health. Mothers highlighted that sharing their story enhanced their sense of coping and purpose. Increased support at times of vulnerability and permission to explore decisions were highly valued.
越来越多患有复杂的危及生命和生命有限的疾病的儿童由其父母在家中照顾。现在人们认识到这对产妇健康有负面影响。本研究旨在倾听父母的经验，以确定最重要的因素；探讨日常决策和预先护理计划；并为当地服务的发展提供信息。在 2019 年冠状病毒病大流行期间，采用半结构式定性方法对来自一个社区护理服务的 7 位母亲进行了采访。在进行了六个阶段的主题分析后，确定了七个数据驱动的主题：珍惜正常；驾驭系统；积极主动；有意义的联系；从新手到专家——然后再回来；他们不是任何孩子——他们是我的孩子；以及 2019 年冠状病毒病。实践意义包括尽早讨论最重要的因素和书面计划的好处，以确保为患有复杂健康问题的儿童提供公平的治疗机会。母亲们强调，分享他们的故事增强了他们的应对感和目标感。在脆弱时期获得更多支持，并允许他们探索决策，这是非常有价值的。
