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家长和临床医生对一款儿科癌症疼痛管理应用程序的看法与建议:一项定性协同设计研究。

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study.

作者信息

Jibb Lindsay A, Sivaratnam Surabhi, Hashemi Elham, Chu Charlene H, Nathan Paul C, Chartrand Julie, Alberts Nicole M, Masama Tatenda, Pease Hannah G, Torres Lessley B, Cortes Haydee G, Zworth Mallory, Kuczynski Susan, Fortier Michelle A

机构信息

Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.

Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Canada.

出版信息

PLOS Digit Health. 2023 Nov 29;2(11):e0000169. doi: 10.1371/journal.pdig.0000169. eCollection 2023 Nov.

Abstract

Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home. Digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children's parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured, co-design interviews. We conducted interviews structured around technology acceptance and family caregiving theories until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child's pain. Overall, the app was valued as a means to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges to app use included the workload burden it may place on parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.

摘要

疼痛是幼儿及其家庭中最普遍且负担沉重的儿科癌症症状之一。很大一部分疼痛发作发生在管理选择有限的环境中,包括在家中。诸如应用程序之类的数字创新可能会对这些环境中幼儿的疼痛治疗结果产生积极影响。我们的总体目标是共同设计这样一款应用程序,本研究的目的是探讨儿童家长对应用程序效用、所需系统功能和挑战的看法。我们从两个儿科癌症护理中心招募了患有癌症的幼儿家长和多学科儿科肿瘤临床医生,参与录音的、半结构化的共同设计访谈。我们围绕技术接受和家庭护理理论进行访谈,直至达到数据饱和。然后对录音进行转录、编码,并使用主题分析进行分析。42名参与者参与了这一过程。参与者认可应用程序这一概念,认为它是让护理人员参与管理幼儿疼痛的一种有用、安全且便捷的方式。总体而言,该应用程序被视为一种向家长提供实时、多模式信息和程序性疼痛支持的手段,同时还能减轻疼痛护理的情感负担。干预设计的建议包括以可及性为重点的功能、全面的症状跟踪,以及嵌入科学且临床合理的症状评估和管理建议。预计应用程序使用方面的挑战包括它可能给家长和临床医生带来的工作量负担。所收集的见解将为我们未来儿童癌症疼痛数字研究的设计原则提供参考。

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