Fuller Mark, Ireland Christina, Zmora Rachel, Jenkins Kathy
Department of Cardiology, Boston Children's Hospital, Boston, MA 02115, USA.
Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA.
Children (Basel). 2024 Aug 17;11(8):1008. doi: 10.3390/children11081008.
(1) Background: This mixed-method study aims to identify and describe factors associated with acute and long-term parenting stressors and coping strategies in caregivers of children with intraluminal pulmonary vein stenosis (PVS). (2) Methods: Parents of children with severe PVS were recruited from a large quaternary hospital to complete a survey that included demographics, the Pediatric Inventory for Parents (PIP), and the Coping Health Inventory for Parents (CHIP). We determined the Social Vulnerability Index (SVI) based on self-reported home address. A subset of caregivers completed a 60 min semi-structured interview via Zoom exploring the impact their child's diagnosis had on their family; experience managing stress in the hospital and at home; current resources and processes for coping; and potential recommendations for hospitals to build resilience and coping. We used multivariable linear regression to examine the association between SVI and parental stress and coping while adjusting for possible confounders. Thematic analysis identified themes related to stress and coping. Finally, we assessed instances of convergence and difference between the qualitative and quantitative results. (3) Results: Participants included 32 caregivers who were 91% female with a mean age of 39 years. The children of participants were 66% female, with a mean age of five years. The parents reported a high amount of stress with an average PIP score of 120, nearly 46 points higher than similar studies in the congenital heart community. We observed no significant associations between SVI and either parental stress or coping in adjusted models. We identified 13 themes, including medical care, hospital, family, support systems, and home medical routine or support. (4) Conclusions: Our study found high levels of illness-related parental stress among caregivers of children with PVS. Stress evolved over time from what caregivers described as 'survival mode' to a future-oriented outlook. Currently, caregivers rely heavily on support networks that are not available to all caregivers or may experience strain over time. Caregivers indicated that communication and parental role functioning were coping strategies that could be better supported by providers and health systems.
(1) 背景：这项混合方法研究旨在识别和描述与腔内肺静脉狭窄（PVS）患儿照料者的急性和长期育儿压力源及应对策略相关的因素。(2) 方法：从一家大型四级医院招募患有严重PVS的患儿的父母，让他们完成一项调查，该调查包括人口统计学信息、父母用儿科量表（PIP）和父母应对健康量表（CHIP）。我们根据自我报告的家庭住址确定社会脆弱性指数（SVI）。一部分照料者通过Zoom完成了一次60分钟的半结构化访谈，探讨孩子的诊断对其家庭的影响；在医院和家中应对压力的经历；当前的应对资源和过程；以及对医院建立恢复力和应对能力的潜在建议。我们使用多变量线性回归来检验SVI与父母压力及应对之间的关联，同时对可能的混杂因素进行调整。主题分析确定了与压力和应对相关的主题。最后，我们评估了定性和定量结果之间的趋同和差异情况。(3) 结果：参与者包括32名照料者，其中91%为女性，平均年龄为39岁。参与者的孩子66%为女性，平均年龄为5岁。父母报告了大量压力，PIP平均得分为120分，比先天性心脏病群体的类似研究高出近46分。在调整后的模型中，我们未观察到SVI与父母压力或应对之间存在显著关联。我们确定了13个主题，包括医疗护理、医院、家庭、支持系统以及家庭医疗常规或支持。(4) 结论：我们的研究发现，PVS患儿照料者中与疾病相关的父母压力水平较高。压力随着时间从照料者所描述的“生存模式”演变为面向未来的观念。目前，照料者严重依赖并非所有照料者都能获得的支持网络，或者随着时间推移可能会感到压力。照料者表示，沟通和父母角色功能是可以得到提供者和卫生系统更好支持的应对策略。
