"Hanging on by a Thread": The Lived Experience of Parents of Children with Medical Complexity.

IF 2 4区 医学 Q2 PEDIATRICS
Courtney Holmes, Waganesh Zeleke, Shruti Sampath, Tiffany Kimbrough
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引用次数: 0

Abstract

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.

"命悬一线":医疗复杂性儿童家长的生活经历。
背景:有复杂病症儿童的家庭承受着高强度的慢性和毒性压力,影响着所有家庭成员和整个系统的整体健康和福祉。本研究的目的是探讨有复杂医疗需求儿童的家长/照顾者的生活经历:采用焦点小组讨论的方式,探讨了 15 名有复杂医疗需求儿童的家长的生活经历。对焦点小组讨论进行了记录、转录,并采用范马南的诠释现象学 6 步流程进行了分析。根据研究问题,分析借鉴了 van Manen 的四个生活存在分析类别:结果:主题包括结果:主题包括:(1) 活着的身体,心理和生理影响;(2) 活着的时间和空间,对当时、现在和未来的直接影响;(3) 活着的关系,社会生活和家庭关系影响;(4) 风险因素;(5) 保护因素:医疗复杂性儿童的照顾者有着独特的创伤和复原经历。这项研究将为跨学科医疗服务提供者提供有关这一人群的心理健康和恢复能力经验的信息,以支持更有效的医疗保健实践。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Children-Basel
Children-Basel PEDIATRICS-
CiteScore
2.70
自引率
16.70%
发文量
1735
审稿时长
6 weeks
期刊介绍: Children is an international, open access journal dedicated to a streamlined, yet scientifically rigorous, dissemination of peer-reviewed science related to childhood health and disease in developed and developing countries. The publication focuses on sharing clinical, epidemiological and translational science relevant to children’s health. Moreover, the primary goals of the publication are to highlight under‑represented pediatric disciplines, to emphasize interdisciplinary research and to disseminate advances in knowledge in global child health. In addition to original research, the journal publishes expert editorials and commentaries, clinical case reports, and insightful communications reflecting the latest developments in pediatric medicine. By publishing meritorious articles as soon as the editorial review process is completed, rather than at predefined intervals, Children also permits rapid open access sharing of new information, allowing us to reach the broadest audience in the most expedient fashion.
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