Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M
Yale University School of Nursing and School of Medicine, New Haven, CT, USA.
J Pediatr Nurs. 2003 Feb;18(1):21-9. doi: 10.1053/jpdn.2003.4.
Little is known about the experiences of mothers raising young children with type 1 diabetes. The purpose of this study was to describe the day-to-day experiences of mothers (N = 28) raising young children under 4 years of age with type 1 diabetes. Descriptive, naturalistic inquiry principles were used to interview subjects, as well as to manage and analyze the data. The mothers reported using the management behavior of constant vigilance. Their concerns about hypoglycemia and providing competent care reflected the interplay between their fears and profound sense of responsibility for managing the disease. Mothers reported having to learn the management behaviors and to occasionally adjust the day-to-day management when either severe hypoglycemia or developmental milestones occurred. Although mothers initially had feelings of incompetence with the care they provided, with time, they became very skilled. There were also reports of limited access to babysitting, child care, or respite services. The intensity of their constant vigilance associated with their concerns, responsibility, and lack of supports resulted in some mothers having physical and/or emotional problems. The findings of the study highlight the importance of identifying family and/or community resources that may provide mothers with support that could reduce some of the tremendous stress and burden of responsibility experienced after diagnosis of diabetes.
对于抚养患有1型糖尿病幼儿的母亲的经历，人们知之甚少。本研究的目的是描述抚养4岁以下患有1型糖尿病幼儿的母亲（N = 28）的日常经历。采用描述性、自然主义探究原则对受试者进行访谈，并管理和分析数据。母亲们报告称采用了持续警惕的管理行为。她们对低血糖和提供有效护理的担忧反映了她们的恐惧与管理疾病的强烈责任感之间的相互作用。母亲们报告称必须学习管理行为，并在发生严重低血糖或发育里程碑事件时偶尔调整日常管理。尽管母亲们最初对自己提供的护理感到不自信，但随着时间的推移，她们变得非常熟练。也有报告称，她们获得保姆服务、儿童保育或喘息服务的机会有限。她们因担忧、责任和缺乏支持而持续保持的高度警惕，导致一些母亲出现身体和/或情绪问题。该研究结果强调了识别家庭和/或社区资源的重要性，这些资源可以为母亲们提供支持，减轻糖尿病诊断后所经历的一些巨大压力和责任负担。
