Family-centered Outcomes that Matter Most to Parents: A Pediatric Feeding Disorders Qualitative Study.
Family-centered Outcomes that Matter Most to Parents: A Pediatric Feeding Disorders Qualitative Study.
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DOI：
10.1097/mpg.0000000000002741
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发表时间：
2020-08
影响因子：
2.9
通讯作者：
Fiechtner L
中科院分区：
文献类型：
--
作者：
Simione M;Dartley AN;Cooper-Vince C;Martin V;Hartnick C;Taveras EM;Fiechtner L
本研究的目的是探讨喂养障碍儿童的照顾者的观点。我们试图通过照顾者的视角来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，以及治疗方法如何最佳地支持家庭。我们采访了2-5岁儿童的护理人员，他们在马萨诸塞州波士顿的儿童总医院喂养和营养中心接受护理。所有儿童都被诊断为进食障碍，定义为口服摄入障碍。我们使用浸没结晶原理分析访谈记录。在采访了30名护理人员（25名女性）后，我们达到了主题饱和。66.7%的孩子是白人，13.3%是亚洲人，10.0%是黑人，10.0%是多种族。30.0%为西班牙裔。我们确定了四个主题：(1)喂养障碍对儿童日常生活和社会参与的影响；(2)改善孩子的健康和生活质量是照料者最重要的；(3)儿童、照料者和社区因素是实现预期结果的促进因素；时间、资金、获取和知识因素是障碍；(4)照顾者倾向于采用以家庭为中心的治疗方法。鉴于儿童喂养障碍对日常生活和社会参与的影响，治疗方法应以家庭为中心，注重功能性和有意义的结果，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。
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 2–5 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 one race. 30.0% were Hispanic. We identified the four themes: (1) feeding impairments impact the daily life and social participation of children; (2) improving their child’s health and quality of life is most important to caregivers; (3) child, caregiver, and community factors are facilitators of achieving desired outcomes; whereas time, financial, access, and knowledge factors are barriers; and (4) 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.