Geyer David, Flanagan Jane M, van de Water Brittney, McCarthy Susan, Vessey Judith A
J Pediatr Health Care. 2025 Jan-Feb;39(1):24-32. doi: 10.1016/j.pedhc.2024.08.010. Epub 2024 Oct 5.
The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts.
A qualitative descriptive study was completed with 11 parental caregivers interviewed.
Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role.
Navigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.
本研究旨在探讨马萨诸塞州患有复杂疾病儿童的父母照顾者在家庭护理系统中所面临的挑战。
完成了一项定性描述性研究，对11名父母照顾者进行了访谈。
通过对访谈记录进行常规内容分析，出现了三个主题：（1）出院准备不足导致情绪困扰；（2）护理变得日益复杂，带来新的意外挑战；（3）父母承担提供者角色的心理负担。
在准备或支持极少的情况下应对各种复杂的系统性挑战，导致父母照顾者普遍感到倦怠。此外，缺乏针对父母照顾者的心理健康支持，进一步加剧了这些挑战的负面影响。未来的工作应侧重于研究、宣传和系统改革，以确保父母照顾者在可持续且支持性的家庭护理模式下获得照顾孩子所需的支持。整个行业的护士在推动这一变革方面具有独特的地位。
