Division of General Academic Pediatrics, Department of Pediatrics.
Division of Pediatric Gastroenterology and Nutrition.
J Pediatr Gastroenterol Nutr. 2020 Aug;71(2):270-275. doi: 10.1097/MPG.0000000000002741.
The purpose of this study was to examine the perspectives of caregivers of children with feeding disorders. We sought to understand their child's feeding impairment through the lens of caregivers, including the impact impairments had on daily life and social participation, what outcomes matter most to caregivers, contextual determinants that affect achieving desired outcomes, and how treatment approaches can optimally support families.
We interviewed caregivers of children, ages 2 to 5 years, who received care at the Center for Feeding and Nutrition at MassGeneral Hospital for Children in Boston, MA. All children had a feeding disorder diagnosis, defined as an impairment in oral intake. We analyzed interview transcripts using principles of immersion-crystallization.
We reached thematic saturation after interviewing 30 caregivers (25 female). 66.7% of the children were white, 13.3% Asian, 10.0% black, and 10.0% were more than 1 race. Thirty percent were Hispanic. We identified four themes: feeding impairments impact the daily life and social participation of children; improving their child's health and quality of life is most important to caregivers; child, caregiver, and community factors are facilitators of achieving desired outcomes; whereas time, financial, access, and knowledge factors are barriers; and caregivers prefer treatment approaches that incorporate principles of family-centered care.
Given the daily life and social participation impacts of pediatric feeding disorders, treatment approaches should be family-centered, focus on functional and meaningful outcomes to improve the health and quality of life of children and their families, and address modifiable sociocontextual determinants.
本研究旨在探讨喂养障碍儿童照顾者的观点。我们试图通过照顾者的视角了解他们孩子的喂养障碍，包括障碍对日常生活和社会参与的影响、对照顾者最重要的结果、影响实现预期结果的环境决定因素以及治疗方法如何为家庭提供最佳支持。
我们采访了在马萨诸塞州波士顿的马萨诸塞州综合医院儿童营养中心接受治疗的 2 至 5 岁儿童的照顾者。所有儿童均有喂养障碍诊断，定义为口腔摄入障碍。我们使用沉浸-结晶原理分析访谈记录。
我们对 30 名照顾者（25 名女性）进行了采访，达到了主题饱和。66.7%的儿童为白人，13.3%为亚洲人，10.0%为黑人，10.0%为多种族。30%为西班牙裔。我们确定了四个主题：喂养障碍会影响儿童的日常生活和社会参与；改善孩子的健康和生活质量对照顾者最重要；儿童、照顾者和社区因素是实现预期结果的促进因素；而时间、财务、获得和知识因素是障碍；照顾者更喜欢融入家庭为中心的治疗方法。
鉴于儿科喂养障碍对日常生活和社会参与的影响，治疗方法应该以家庭为中心，注重功能和有意义的结果，以改善儿童及其家庭的健康和生活质量，并解决可改变的社会环境决定因素。
