PDF(Pubmed)
Abstract：
OBJECTIVE: Craniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger \'Craniofacial microsomia: Accelerating Research and Education (CARE)\' program, this study described caregivers\' early feeding experiences.
METHODS: US-based caregivers of 34 children with CFM participated in remote narrative interviews. Two authors completed inductive thematic analysis in an iterative process until consensus was reached.
RESULTS: Caregivers\' narratives outlined the inherent challenges of feeding an infant with special healthcare needs. The first theme \'Navigating Challenges and Managing Expectations\' describes the distress participants experienced when they were unable to breastfeed and the negative emotional effect of switching to formula. The second theme \'Making Adaptations\' outlines the methods participants tried, including breast pumps and feeding tubes. The third theme \'Accessing Support\' describes participants\' interactions with healthcare providers and challenges accessing feeding support. The final theme \'Growing from Adversity\' recounts participants\' relief once their child established a feeding pattern and the personal growth gained from their experiences.
CONCLUSIONS: Caregivers reported several feeding related challenges associated with CFM, many of which negatively affected their wellbeing. Negative consequences were particularly pronounced in cases where caregivers\' feeding experiences differed from their expectations. Participants identified challenges in accessing reliable feeding information and support. Despite difficult experiences, caregivers cited some positive outcomes, including increased confidence and resilience.
CONCLUSIONS: Holistic feeding information and support for families affected by CFM should be inclusive of several feeding methods to improve care delivery, child health, and the caregiver experience.
METHODS: US-based caregivers of 34 children with CFM participated in remote narrative interviews. Two authors completed inductive thematic analysis in an iterative process until consensus was reached.
RESULTS: Caregivers\' narratives outlined the inherent challenges of feeding an infant with special healthcare needs. The first theme \'Navigating Challenges and Managing Expectations\' describes the distress participants experienced when they were unable to breastfeed and the negative emotional effect of switching to formula. The second theme \'Making Adaptations\' outlines the methods participants tried, including breast pumps and feeding tubes. The third theme \'Accessing Support\' describes participants\' interactions with healthcare providers and challenges accessing feeding support. The final theme \'Growing from Adversity\' recounts participants\' relief once their child established a feeding pattern and the personal growth gained from their experiences.
CONCLUSIONS: Caregivers reported several feeding related challenges associated with CFM, many of which negatively affected their wellbeing. Negative consequences were particularly pronounced in cases where caregivers\' feeding experiences differed from their expectations. Participants identified challenges in accessing reliable feeding information and support. Despite difficult experiences, caregivers cited some positive outcomes, including increased confidence and resilience.
CONCLUSIONS: Holistic feeding information and support for families affected by CFM should be inclusive of several feeding methods to improve care delivery, child health, and the caregiver experience.
摘要：
目的：颅面微小症（CFM）是一种先天性疾病，可能与婴儿的喂养挑战有关。作为更大的“颅面微缩：加速研究和教育（CARE）”计划的一部分，这项研究描述了护理人员的早期喂养经验。
方法：来自美国的34名CFM儿童的照顾者参与了远程叙事访谈。两位作者在迭代过程中完成了归纳主题分析，直到达成共识。
结果：照顾者的叙述概述了喂养具有特殊医疗保健需求的婴儿的内在挑战。第一个主题“应对挑战和管理期望”描述了无法母乳喂养的参与者所经历的痛苦，以及转向配方奶粉的负面情绪影响。第二个主题“适应”概述了参与者尝试的方法，包括吸奶器和喂食管。第三个主题“访问支持”描述了参与者与医疗保健提供者的互动以及访问喂养支持的挑战。最后的主题“从逆境中成长”讲述了参与者一旦他们的孩子建立了喂养模式和从他们的经历中获得的个人成长，他们就会感到宽慰。
结论：看护者报告了与CFM相关的几种喂养相关的挑战，其中许多对他们的健康产生了负面影响。在护理人员的喂养经历与他们的期望不同的情况下，负面后果尤其明显。与会者指出了在获取可靠的喂养信息和支持方面的挑战。尽管经历了艰难的经历，护理人员列举了一些积极的结果，包括增强信心和韧性。
结论：对受CFM影响的家庭的整体喂养信息和支持应包括几种喂养方法，以改善护理服务。儿童健康,和照顾者的经验。
方法：来自美国的34名CFM儿童的照顾者参与了远程叙事访谈。两位作者在迭代过程中完成了归纳主题分析，直到达成共识。
结果：照顾者的叙述概述了喂养具有特殊医疗保健需求的婴儿的内在挑战。第一个主题“应对挑战和管理期望”描述了无法母乳喂养的参与者所经历的痛苦，以及转向配方奶粉的负面情绪影响。第二个主题“适应”概述了参与者尝试的方法，包括吸奶器和喂食管。第三个主题“访问支持”描述了参与者与医疗保健提供者的互动以及访问喂养支持的挑战。最后的主题“从逆境中成长”讲述了参与者一旦他们的孩子建立了喂养模式和从他们的经历中获得的个人成长，他们就会感到宽慰。
结论：看护者报告了与CFM相关的几种喂养相关的挑战，其中许多对他们的健康产生了负面影响。在护理人员的喂养经历与他们的期望不同的情况下，负面后果尤其明显。与会者指出了在获取可靠的喂养信息和支持方面的挑战。尽管经历了艰难的经历，护理人员列举了一些积极的结果，包括增强信心和韧性。
结论：对受CFM影响的家庭的整体喂养信息和支持应包括几种喂养方法，以改善护理服务。儿童健康,和照顾者的经验。
