Professional Development, Continuing Education and Research Unit, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.
Department of Emergency, Acceptance and General Paediatrics, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.
J Clin Nurs. 2023 Aug;32(15-16):4677-4693. doi: 10.1111/jocn.16502. Epub 2022 Sep 13.
To explore the process of recognition and response to clinical deterioration of children with medical complexity at home by their parents.
Children with medical complexity are characterised by known chronic conditions associated with frailty and functional limitations, dependence on healthcare services and high use of technology and resources. Their medical complexity often leads to the onset of complications. Targeted care ensures timely recognition and response to clinical deterioration at home, thus avoiding serious sequelae, inappropriate hospitalisations and improving quality of life. Evidence on parents' process of the recognition and response to clinical deterioration at home is limited.
Qualitative study using a Grounded Theory methodology.
Seven online focus groups were conducted with parents and healthcare providers experienced in their care. The interviews were transcribed verbatim and analysed through open, axial and selective coding, using a constant comparative iterative method. The COREQ guidelines guided the reporting of this work.
Four categories and one core category were identified: (1) Awareness of the unique and shared characteristics of children with medical complexity; (2) Parents' care maintenance and management; (3) Parents' care monitoring; (4) Parents' response to clinical deterioration and (5) Seeking the Shift of Agency, the core category as the foundation of the Process of Recognition and rEsponse of PAREnts to Deterioration (PRE-PARE-D) theory.
The role of parents of children with medical complexity is evolving into active care leaders, by developing care management and care monitoring competences and negotiating care with healthcare providers.
The shift of agency from healthcare providers to parents requires education and counselling pathways to promote the development of parent's self-efficacy, competencies and empowerment in the care management of their children. Home care delivery for children with medical complexity should aim at sustaining this partnership between healthcare providers and parents.
探索患有医疗复杂性的儿童的父母在家中识别和应对病情恶化的过程。
患有医疗复杂性的儿童具有已知的慢性疾病，这些疾病与虚弱和功能限制、依赖医疗保健服务以及高频率使用技术和资源有关。他们的医疗复杂性常常导致并发症的发生。有针对性的护理可确保在家中及时识别和应对病情恶化，从而避免严重的后遗症、不适当的住院治疗，并提高生活质量。关于父母在家中识别和应对病情恶化过程的证据有限。
使用扎根理论方法的定性研究。
与有经验的父母和医疗保健提供者进行了 7 次在线焦点小组讨论。采访内容逐字转录，并通过开放式、轴向式和选择性编码进行分析，使用恒定比较迭代方法。本研究遵循 COREQ 指南进行报告。
确定了四个类别和一个核心类别：（1）对患有医疗复杂性的儿童独特和共同特征的认识；（2）父母的护理维持和管理；（3）父母的护理监测；（4）父母对病情恶化的反应；（5）寻求代理转变，核心类别作为父母对恶化识别和反应（PRE-PARE-D）理论过程的基础。
患有医疗复杂性的儿童的父母角色正在演变为积极的护理领导者，通过发展护理管理和护理监测能力，并与医疗保健提供者协商护理。
从医疗保健提供者向父母转移代理关系需要教育和咨询途径，以促进父母在照顾子女方面的自我效能、能力和赋权的发展。针对患有医疗复杂性的儿童的家庭护理应旨在维持医疗保健提供者和父母之间的这种伙伴关系。
