Guite Jessica W, Russell Beth S, Homan Kendra J, Tepe Rebecca M, Williams Sara E
Connecticut Children's Medical Center, Hartford, CT 06106, USA.
Department of Pediatrics, University of Connecticut School of Medicine, Farmington, CT 06030, USA.
Children (Basel). 2018 Nov 27;5(12):161. doi: 10.3390/children5120161.
Parents of youth with chronic health conditions encounter numerous challenges in supporting their children across pediatric treatment contexts. Structural barriers to care, such as access issues and coordinating care across school, health, and family settings, can exacerbate challenges to daily functioning. Parents are often concomitantly managing their child's chronic condition, their own health care needs, work and family demands. For these parents, accomplishing a manageable "work-life balance" feels elusive, if not impossible, when a chronic health condition is part of family life. Based on a recent symposium presentation, combined perspectives from the disciplines of pediatric psychology, parenting, and human development and family studies consider key challenges and opportunities to assist parent coping with stress associated with caregiving amidst pervasive changes in healthcare service delivery. Two innovative interventions to support parents in both an outpatient ("Parents as Coping Coaches") and an inpatient ("Putting Parents FIRST") context are described, with commonalities and unique aspects highlighted for each. These programs are considered in reference to a rapidly changing healthcare landscape, growing focus on the family as a core context for care, and importance of parent/caregiver self-care and crucial role in supporting children's long-term health and resiliency.
患有慢性健康问题的青少年的父母在儿科治疗环境中支持孩子时面临着诸多挑战。医疗保健的结构性障碍，如就医问题以及在学校、医疗和家庭环境之间协调护理，会加剧日常功能方面的挑战。父母通常还要同时应对孩子的慢性病、自身的医疗需求、工作和家庭需求。对于这些父母来说，当慢性健康问题成为家庭生活的一部分时，实现可控的“工作与生活平衡”即便并非不可能，也感觉难以实现。基于最近一次研讨会的报告，儿科心理学、育儿以及人类发展与家庭研究等学科的综合观点探讨了关键挑战和机遇，以帮助父母在医疗服务提供方式普遍变化的情况下应对与照顾孩子相关的压力。文中描述了两种分别在门诊（“父母作为应对指导教练”）和住院环境（“将父母放在首位”）中支持父母的创新干预措施，并突出了每种措施的共性和独特之处。这些项目是参照快速变化的医疗保健格局、日益将家庭视为护理核心环境的趋势以及父母/照顾者自我护理的重要性及其在支持孩子长期健康和恢复力方面的关键作用来考量的。
