Department of Human Movement Sciences and Center for Movement, Health & Disability, Darden College of Education and Professional Studies, Old Dominion University, Norfolk, VA 23529, USA.
Department of Teacher Education, Faculty of Social Sciences and Education, NTNU-Norwegian University of Science and Technology, 7491 Trondheim, Norway.
Int J Environ Res Public Health. 2022 Jan 4;19(1):554. doi: 10.3390/ijerph19010554.
Parenting is often described as a stress-inducing experience, which can be further complicated or made more stressful and anxiety-inducing when parenting children with chronic conditions such as type 1 diabetes (T1D). The incidence of T1D among children has risen and continues to rise globally, resulting in a need to understand the experiences of parenting children with T1D. The purpose of this qualitative inquiry was to explore the lived experiences, and the meaning ascribed to those experiences, of being a parent of a child with T1D. This qualitative study was conducted through an interpretivist paradigm and includes the experiences of 29 parents (19 mothers and 10 fathers) of 24 children (aged 6 to 15 years) with T1D. Parents, and parent dyads, completed demographic questionnaires and written prompts, and participated in focus group interviews. Three themes were developed from the data, namely, (a) the costs of T1D, (b) the ultimate helicopter mom, and (c) dealing with "being different". Generally, the participants reported on the direct (e.g., financial and time) and indirect (e.g., family planning) costs associated with parenting children with T1D, their role as a primary provider and anxieties with relinquishing control and dealing with the stigma surrounding a diabetes diagnosis. Unique findings from this study included the impact a T1D diagnosis had on future family planning as parents navigated the fear and uncertainty of having additional children with T1D, as well as the internal conflict parents had with entrusting others to care for their child, especially if they deemed them to be unqualified or unnecessarily stigmatizing or ostracizing their child.
父母通常被描述为一个压力大的经历，当养育患有慢性疾病的孩子时，这种压力会更大，也会更焦虑，比如 1 型糖尿病（T1D）患儿。全球范围内，儿童 T1D 的发病率不断上升，这使得我们需要了解 T1D 患儿父母的育儿经历。本定性研究旨在探索父母养育 T1D 患儿的生活经历及其所赋予的意义。这项定性研究通过解释主义范式进行，包括 29 名父母（19 名母亲和 10 名父亲）和 24 名年龄在 6 至 15 岁之间的 T1D 患儿的经历。父母及其双亲对子完成了人口统计问卷和书面提示，并参加了焦点小组访谈。从数据中得出了三个主题，即（a）T1D 的成本，（b）终极直升机妈妈，和（c）应对“与众不同”。一般来说，参与者报告了与养育 T1D 患儿相关的直接（如经济和时间）和间接（如家庭计划）成本、他们作为主要提供者的角色、以及放弃控制和处理围绕糖尿病诊断的污名化的焦虑。这项研究的独特发现包括 T1D 诊断对未来家庭计划的影响，因为父母在面对生育患有 T1D 的额外子女的恐惧和不确定性时，导航到恐惧和不确定性，以及父母与信任他人照顾孩子之间的内部冲突，特别是如果他们认为他们没有资格或不必要地污名化或排斥他们的孩子。
