Nygård Carina, Clancy Anne, Kitzmüller Gabriele
Department of Health and Care Sciences, Faculty of Health Sciences, UiT, The Arctic University of Norway, Harstad, Norway.
Department of Health and Care Sciences, Faculty of Health Sciences, UiT, the Arctic University of Norway, Narvik, Norway.
J Adv Nurs. 2025 May;81(5):2631-2643. doi: 10.1111/jan.16509. Epub 2024 Oct 2.
To explore the existential lived experiences of parents of children and young people with complex care needs.
An explorative qualitative design.
We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach.
Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships.
Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth.
There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide.
Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care.
Consolidated Criteria for Reporting Qualitative Research (COREQ).
Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.
探讨有复杂护理需求的儿童和青少年的父母的生存体验。
探索性定性设计。
2022年2月至5月，我们对挪威各地有复杂护理需求的儿童和青少年的父母进行了16次深入访谈。数据收集和分析以范曼实践现象学方法的理论框架为指导。
出现了四个不同但相互交织的主题，反映了父母生存体验的全面性和整体性：身体体验：“我永远改变了”；空间体验：寻求庇护所；时间体验：“时间似乎不存在”；自我与他人体验：父母关系的变化。
父母在日常生活中应对波动的持续努力深刻影响着他们幸福的生存层面，这表明尊重和体贴的护患关系可以促进生存成长。
迫切需要一种真正的护理存在，其特点是对父母的生存体验持开放敏感和专注倾听的态度。护士应抓住机会与父母进行尊重和专注的对话。认识到这些对话中产生 的见解可以改善全球的综合和个性化护理服务。
有复杂护理需求的儿童和青少年 的父母往往经历不理想的医疗保健。此外，获得优质医疗服务的机会有限，尤其是在农村地区，这导致了效率低下和协调挑战。本研究为护士、其他医疗保健专业人员、研究人员和决策者提供了关于支持父母生存需求的宝贵观点，这可能会显著影响他们的整体幸福感和应对能力，有助于形成更具同情心的家庭护理方法。
定性研究报告的统一标准（COREQ）。
有复杂护理需求的儿童和青少年的父母对这项工作的结果和启示提供了宝贵的反馈。
