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将囊性纤维化婴儿的营养护理模式转变:临床医生观点的定性研究。

Transforming the nutrition care model for infants with cystic fibrosis: A qualitative study of clinicians' perspectives.

机构信息

Department of Pediatrics, Division of Pulmonary and Sleep Medicine, University of Washington, Seattle, Washington, USA.

Cystic Fibrosis Center, Seattle Children's Hospital, Seattle, Washington, USA.

出版信息

Pediatr Pulmonol. 2023 May;58(5):1380-1390. doi: 10.1002/ppul.26330. Epub 2023 Feb 8.

Abstract

Clinician perspectives may inform health service strategies to meet optimal nutrition needs for infants with cystic fibrosis (CF). We conducted a qualitative study with CF-specialized dietitians (registered dietitians [RDs]) and physicians between July to December 2020 to characterize the current state of infant nutrition care delivery and organize input into a conceptual model to inform CF care program strategies. Among 42 participants, 36 completed survey responses and 6 completed interviews; 93% were RDs. Three global themes emerged in the current care model: nutrition management, family centered connections, and collaborative care delivery. Within nutrition management, clinicians emphasized providing education, setting goals, and maintaining adequate follow-up with families. Under family centered connections, clinicians expressed the need to foster relationships with families and link families to resources for assistance to social stressors such as food insecurity. Collaborative care delivery for clinicians interviewed was defined by sharing expertise from across the interdisciplinary team. Based on the timing of this study, clinicians reported compelling examples for various modes of telehealth and home weight monitoring to facilitate and support these domains of nutrition care, including potential advantages for education, supporting family needs, and communication. We integrate these themes to propose a conceptual model to organize complementary in-person and telehealth activities and enhance quality infant CF nutrition care delivery. Future implementation can refine this model through testing of practical telehealth interventions to optimize nutrition outcomes for infants with CF.

摘要

临床医生的观点可能会为满足囊性纤维化 (CF) 婴儿的最佳营养需求的卫生服务策略提供信息。我们在 2020 年 7 月至 12 月期间与 CF 专门营养师(注册营养师 [RD])和医生进行了一项定性研究,以描述当前婴儿营养护理的提供情况,并将意见组织成一个概念模型,为 CF 护理计划策略提供信息。在 42 名参与者中,有 36 名完成了调查回复,6 名完成了访谈;93%为 RD。当前护理模式中有三个全球主题:营养管理、以家庭为中心的联系和协作护理提供。在营养管理中,临床医生强调提供教育、设定目标以及与家庭保持足够的随访。在以家庭为中心的联系下,临床医生表示需要与家庭建立关系,并为家庭提供资源以帮助他们应对食物不安全等社会压力源。接受采访的临床医生的协作护理是通过共享跨学科团队的专业知识来定义的。基于这项研究的时间,临床医生报告了各种远程医疗和家庭体重监测模式的引人注目的例子,以促进和支持这些营养护理领域,包括在教育、支持家庭需求和沟通方面的潜在优势。我们将这些主题整合到一个概念模型中,以组织互补的面对面和远程医疗活动,并提高婴儿 CF 营养护理的质量。未来的实施可以通过测试实际的远程医疗干预措施来优化 CF 婴儿的营养结果来改进该模型。

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本文引用的文献

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Assessing Shared Decision-Making in Cystic Fibrosis Care Using collaboRATE: A Cross-Sectional Study of 159 Programs.
J Patient Exp. 2021 Aug 20;8:23743735211034032. doi: 10.1177/23743735211034032. eCollection 2021.

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