“命悬一线”：患有复杂疾病儿童的父母的生活经历
"Hanging on by a Thread": The Lived Experience of Parents of Children with Medical Complexity.
作者信息
Holmes Courtney, Zeleke Waganesh, Sampath Shruti, Kimbrough Tiffany
机构信息
Department of Rehabilitation Counseling, Virginia Commonwealth University, Richmond, VA 23298, USA.
Virginia Commonwealth University Health System, Children's Hospital of Richmond, Richmond, VA 23219, USA.
出版信息
Children (Basel). 2024 Oct 18;11(10):1258. doi: 10.3390/children11101258.
BACKGROUND
Families with children with medical complexity endure high levels of chronic and toxic stress, impacting the overall health and wellbeing of all family members and the system as a whole. The purpose of this study was to examine the lived experiences of parents/caregivers with children with medical complexity.
METHODS
The lived experiences of 15 parents of children with complex medical needs were explored using focus group discussions. Focus group discussions were recorded, transcribed, and analyzed using van Manen's 6-step process for hermeneutic phenomenology. Aligned with the research questions, the analysis draws on van Manen's four lived existential analytical categories.
RESULTS
Themes include: (1) lived body, the psychological and physiological effect; (2) lived time and space, the immediate impact on the there, now, and then; (3) lived relationships, social life and family relational effect; (4) risk factors; and (5) protective factors.
CONCLUSION
Caregivers of children with medical complexity have a unique experience of trauma and resilience. This study will inform interdisciplinary medical providers about the mental health and resiliency experiences of this population to support more effective healthcare practices.
背景
家中有患有复杂疾病儿童的家庭承受着高水平的慢性和毒性压力，这影响着所有家庭成员乃至整个家庭系统的整体健康和幸福。本研究的目的是探究照顾患有复杂疾病儿童的父母/照料者的生活经历。
方法
通过焦点小组讨论，探讨了15位有复杂医疗需求儿童的父母的生活经历。焦点小组讨论进行了录音、转录，并采用范曼诠释现象学的6步流程进行分析。与研究问题一致，分析借鉴了范曼的四个生活存在分析类别。
结果
主题包括：（1）身体体验，心理和生理影响；（2）时间和空间体验，对此时、彼时、此地的直接影响；（3）人际关系体验，社会生活和家庭关系影响；（4）风险因素；以及（5）保护因素。
结论
患有复杂疾病儿童的照料者有着独特的创伤与复原经历。本研究将让跨学科医疗服务提供者了解这一人群的心理健康和复原经历，以支持更有效的医疗实践。
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