Barnes Katherine, Zimmerman Kathrin, Herbey Ivan, Arynchyna-Smith Anastasia, May Bobby, Arata Wessinger Caroline, Dreer Laura E, Thompson Lieu, Ivankova Nataliya V, Rozzelle Curtis J, Johnston James M, Blount Jeffrey P, Rocque Brandon G
1Department of Pediatrics, Division of Neurology, University of Alabama at Birmingham.
2Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama.
J Neurosurg Pediatr. 2023 Feb 10;31(5):433-443. doi: 10.3171/2022.12.PEDS22425. Print 2023 May 1.
Hydrocephalus is inherently unpredictable. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a child's shunt will fail and require emergency surgery. Previous research has shown that children with hydrocephalus and their caregivers experience significant posttraumatic stress symptoms secondary to the diagnosis. This study aims to understand caregiver experiences and needs, identify gaps in resources/support, and determine opportunities to improve care.
Semistructured interviews were conducted with parent caregivers of children with hydrocephalus to learn about their experiences with the hydrocephalus diagnosis, hospitalizations, surgeries, coping and support, challenges of caring for a child with hydrocephalus, and logistics for a proposed support program. De-identified interviews were audio-recorded, transcribed, and analyzed for themes.
Thematic saturation was reached after 17 interviews. Five major themes emerged: 1) coping with the diagnosis, 2) received support, 3) hydrocephalus management, 4) implications for intervention, and 5) psychosocial stressors for caregivers. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the child's life. Caregivers described a variety of coping strategies, but a majority reported a need for support in processing complex emotions and dealing with the uncertainty of their child's hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would facilitate feeling supported and providing the best care for their children.
Parent caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip parent caregivers to be advocates for their children and to improve both the caregiver and the child's quality of life.
脑积水本质上是不可预测的。大多数孩子被诊断为脑积水的家长都没有预料到这一诊断结果，而且也没有人能够预测孩子的分流管是否会失效以及何时会失效并需要进行紧急手术。先前的研究表明，脑积水患儿及其照顾者会因该诊断而出现显著的创伤后应激症状。本研究旨在了解照顾者的经历和需求，找出资源/支持方面的差距，并确定改善护理的机会。
对脑积水患儿的家长照顾者进行半结构化访谈，以了解他们在脑积水诊断、住院、手术、应对和支持方面的经历，照顾脑积水患儿的挑战，以及拟议的支持项目的后勤安排。对经过身份识别处理的访谈进行录音、转录并分析主题。
在进行了17次访谈后达到了主题饱和。出现了五个主要主题：1）应对诊断，2）获得的支持，3）脑积水管理，4）干预的影响，5）照顾者的心理社会压力源。首要任务是提供平衡、可信的信息，且要富有同情心，并在孩子的整个成长过程中不断更新。照顾者描述了各种应对策略，但大多数人表示在处理复杂情绪和应对孩子脑积水的不确定性方面需要支持。大多数人一致认为，拥有一个照顾者支持网络、可提供转诊和解答问题的医疗专业人员，以及转介到支持服务和治疗机构，将有助于他们感到得到支持，并为孩子提供最好的照顾。
家长照顾者对脑积水患儿的健康和幸福至关重要，了解他们的经历对于改善护理至关重要。提供明确的信息、心理社会支持和资源将有助于使家长照顾者成为孩子的倡导者，并提高照顾者和孩子的生活质量。
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