Child and Family Health Cooperative, School of Nursing, University of Minnesota, Minneapolis, MN, United States of America.
College of Nursing, Chamberlain University, Downers Grove, IL, United States of America.
J Pediatr Nurs. 2020 Jul-Aug;53:41-51. doi: 10.1016/j.pedn.2020.03.018. Epub 2020 May 18.
The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions.
A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework.
Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential.
Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers.
Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.
本研究旨在记录适应挑战和适应工作，包括在生命受到威胁的婴幼儿出生前被诊断出的父母在一段时间内所表现出的新兴领导行为。
本研究采用描述性、随访研究设计。在 2012 年完成最初的扎根维度分析研究后，于 2014 年收集了本分析的语料库。对 15 个家庭（8 对夫妇，7 位母亲）进行了深入的、录音记录的访谈。15 名儿童患有心脏、腹部和中枢神经系统异常，随访时年龄在 14 至 37 个月或已死亡。对转录的逐字采访进行定向内容分析，其结构基于适应领导框架。
父母描述了表明他们在人际和人际领域内朝着适应领导发展的行为，因为他们完成了适应工作，以应对随着时间的推移而出现的挑战。并非所有父母都描述了调动他人进行适应工作的能力和/或意愿，这表明适应领导仍然是一种未实现的潜力。
从复杂适应系统的角度来看，患有医学风险儿童的父母具有发展为适应领导的潜力，并在家庭内部以及与医疗保健提供者之间建立合作关系。
由于生存率的提高，父母面临与子女不可预测且常常是慢性健康需求相关的持续挑战。研究结果说明了父母的适应工作和领导行为，可以为护理评估提供信息，以及干预的类型和时机。
