Center for Appearance Research, University of the West of England, UK.
Divison of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles and Keck School of Medicine, University of Southern California, USA.
J Pediatr Nurs. 2024 Jul-Aug;77:e366-e374. doi: 10.1016/j.pedn.2024.04.053. Epub 2024 May 10.
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.
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.
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.
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.
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.
颅面短小症（CFM）是一种先天性疾病，可导致婴儿进食困难。作为更大规模的“颅面短小症：加速研究与教育（CARE）”计划的一部分，本研究描述了照顾者的早期喂养经验。
美国 34 名 CFM 患儿的照顾者参加了远程叙事访谈。两位作者以迭代的方式进行了归纳主题分析，直到达成共识。
照顾者的叙述概述了喂养有特殊医疗需求的婴儿所固有的挑战。第一个主题“应对挑战和管理期望”描述了参与者在无法进行母乳喂养时所经历的痛苦，以及改用配方奶所带来的负面情绪影响。第二个主题“进行调整”概述了参与者尝试的方法，包括吸乳器和喂养管。第三个主题“获得支持”描述了参与者与医疗保健提供者的互动以及获得喂养支持的挑战。最后一个主题“逆境中成长”描述了参与者在孩子建立喂养模式后感到的宽慰，以及从他们的经历中获得的个人成长。
照顾者报告了与 CFM 相关的一些喂养相关挑战，其中许多挑战对他们的幸福感产生了负面影响。当照顾者的喂养经验与他们的期望不同时，负面后果尤其明显。参与者在获得可靠的喂养信息和支持方面遇到了挑战。尽管经历了困难，照顾者还是提到了一些积极的结果，包括增加了信心和韧性。
应向受 CFM 影响的家庭提供全面的喂养信息和支持，包括多种喂养方法，以改善护理服务、儿童健康和照顾者体验。
