Schnell Jessica L, Tager Julia B, Kenney Ansley E, Lim Paulina S, Everhart Samantha A, Johaningsmeir Sarah, Balistreri Kathryn A, Morgan-Tautges Amy, Berridge Kevin E, Brophey Maura, Rothschild Charles B, Scanlon Matthew C, Davies W Hobart, Lee K Jane
Department of Pediatrics, Medical College of Wisconsin-Milwaukee, 999 North 92nd Street, Suite 350, Milwaukee, WI, 53226, USA.
Psychology Department, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Matern Child Health J. 2025 Mar;29(3):405-414. doi: 10.1007/s10995-025-04066-x. Epub 2025 Feb 7.
This study aimed to explore the experiences of caregivers of children with medical complexity (CMC) enrolled in a complex care program, focusing on their interactions with the healthcare system and the impact on caregiver well-being.
Qualitative interviews were conducted with 20 caregivers, and data were analyzed using interpretative phenomenological analysis. The interviews covered topics such as navigating the medical system, accessing resources, and interactions with healthcare providers.
Caregivers faced challenges in navigating the healthcare system, including scheduling appointments, finding suitable treatment plans, and managing hospitalizations. They expressed the need for more practical, financial, and informational resources to support their caregiving responsibilities. Access to respite care was identified as a significant challenge, with limited availability and affordability. Caregivers highlighted the importance of connecting with other caregivers and accessing accurate information specific to their child's condition.
The findings emphasize the unmet needs of caregivers of CMC and the barriers they face within the healthcare system. To support caregiver well-being, interventions should address these barriers by improving infrastructural support, enhancing training for in-home caregivers, and advocating for comprehensive support services for the entire family. Involving caregivers in the development and implementation of interventions is crucial to ensure their feasibility, applicability, and desirability. By addressing these challenges and tailoring interventions to the unique needs of caregivers of CMC, healthcare providers can promote better outcomes for both caregivers and their CMC.
本研究旨在探讨参与复杂护理项目的患有复杂疾病儿童（CMC）的照顾者的经历，重点关注他们与医疗系统的互动以及对照顾者幸福感的影响。
对20名照顾者进行了定性访谈，并使用解释性现象学分析对数据进行了分析。访谈涵盖了诸如在医疗系统中导航、获取资源以及与医疗服务提供者互动等主题。
照顾者在医疗系统导航方面面临挑战，包括安排预约、寻找合适的治疗方案以及管理住院治疗。他们表示需要更多实用、财务和信息资源来支持他们的照顾责任。获得喘息护理被认为是一项重大挑战，其可用性和可承受性有限。照顾者强调了与其他照顾者建立联系以及获取针对其孩子病情的准确信息的重要性。
研究结果强调了CMC照顾者未得到满足的需求以及他们在医疗系统中面临的障碍。为了支持照顾者的幸福感，干预措施应通过改善基础设施支持、加强对家庭照顾者的培训以及倡导为整个家庭提供全面支持服务来解决这些障碍。让照顾者参与干预措施的制定和实施对于确保其可行性、适用性和可取性至关重要。通过应对这些挑战并根据CMC照顾者的独特需求调整干预措施，医疗服务提供者可以为照顾者及其CMC带来更好的结果。
