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自闭症儿童营养相关护理的优先事项、障碍和促进因素:一项比较跨学科健康专业人员和家长观点的定性研究

Priorities, barriers, and facilitators for nutrition-related care for autistic children: a qualitative study comparing interdisciplinary health professional and parent perspectives.

作者信息

Blaine Rachel E, Blaine Kevin P, Cheng Katie, Banuelos Cynthia, Leal Aaron

机构信息

Department of Family and Consumer Sciences, California State University, Long Beach, CA, United States.

Research Institute, Children's Hospital of Orange County, Orange, CA, United States.

出版信息

Front Pediatr. 2023 Aug 15;11:1198177. doi: 10.3389/fped.2023.1198177. eCollection 2023.

Abstract

INTRODUCTION

Children with autism spectrum disorder often face nutrition-related challenges, such as food selectivity, gastrointestinal issues, overweight and obesity, and inadequate nutrient intake. However, the role of routine nutrition-related screening or care by interdisciplinary health professionals is not well understood. This study aimed to compare the beliefs of health professionals with those of parents of autistic children regarding high-priority nutrition-related challenges, barriers and facilitators to care, and desired education and resources related to nutrition for autistic children.

PARTICIPANTS

Interdisciplinary health professionals ( = 25) (i.e., pediatricians, occupational therapists, speech-language pathologists, board certified behavior analysts, registered dietitians) and parents of autistic children ( = 22).

METHODS

The study used semi-structured phone interviews, which were recorded, transcribed, verified, and double-coded using the Framework Method.

RESULTS

Thematic analysis of transcripts revealed that while health professionals and parents of autistic children shared some perspectives on nutrition-related challenges and care, they also had distinct viewpoints. Parents emphasized the importance of addressing food selectivity, behavioral eating challenges, sensory issues, and sleep disturbances affecting appetite. Both groups acknowledged the need for tailored support, access to an interdisciplinary care team, and reasonable expectations. Some health professionals perceived parents as lacking motivation or the ability to make changes. In contrast, many parents felt that health professionals lacked the knowledge and motivation to take nutrition or growth concerns seriously. Health professionals acknowledged that their lack of knowledge or capacity to provide nutrition education or referrals was a common barrier to care, particularly given limited community resources.

DISCUSSION

Health professionals who serve autistic children are motivated to address nutrition-related challenges but lack resources related to nutrition. To promote better health outcomes for autistic children, professionals should identify and support parent motivations around nutrition-related care. Both groups expressed interest in accessing autism-specific resources for education, referral, and screening guidance. Future research could explore the development of healthcare training models that improve the competency of health professionals in providing nutrition care and referral for autistic children.

摘要

引言

自闭症谱系障碍儿童常常面临与营养相关的挑战,如食物选择性、胃肠道问题、超重和肥胖以及营养摄入不足。然而,跨学科健康专业人员进行常规营养相关筛查或护理的作用尚未得到充分理解。本研究旨在比较健康专业人员与自闭症儿童家长对于高度优先的营养相关挑战、护理的障碍和促进因素,以及自闭症儿童所需的营养教育和资源的看法。

参与者

跨学科健康专业人员(n = 25)(即儿科医生、职业治疗师、言语病理学家、认证行为分析师、注册营养师)和自闭症儿童家长(n = 22)。

方法

本研究采用半结构化电话访谈,访谈内容进行录音、转录、核实,并使用框架法进行双重编码。

结果

对访谈记录的主题分析表明,虽然健康专业人员和自闭症儿童家长在营养相关挑战和护理方面有一些共同观点,但也存在不同看法。家长强调解决食物选择性、行为性饮食挑战、感官问题以及影响食欲的睡眠障碍的重要性。两组都认识到需要量身定制的支持、获得跨学科护理团队的服务以及合理的期望。一些健康专业人员认为家长缺乏改变的动力或能力。相比之下,许多家长觉得健康专业人员缺乏认真对待营养或生长问题的知识和动力。健康专业人员承认,他们缺乏提供营养教育或转诊的知识或能力是护理的常见障碍,特别是考虑到社区资源有限。

讨论

为自闭症儿童提供服务的健康专业人员有动力应对与营养相关的挑战,但缺乏与营养相关的资源。为了改善自闭症儿童的健康状况,专业人员应识别并支持家长围绕营养相关护理的动机。两组都表示有兴趣获取针对自闭症的教育资源、转诊资源和筛查指南。未来的研究可以探索开发医疗培训模式,以提高健康专业人员为自闭症儿童提供营养护理和转诊服务的能力。

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Avoiding Ableist Language: Suggestions for Autism Researchers.避免使用歧视性语言:给自闭症研究者的建议。
Autism Adulthood. 2021 Mar 1;3(1):18-29. doi: 10.1089/aut.2020.0014. Epub 2021 Mar 18.

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