开发一款移动健康应用程序以协调护士为应对姑息期癌症的家庭提供的喘息护理服务：一项以用户为中心的设计研究方案。

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study.

作者信息

Castro Aimee R, Arnaert Antonia, Moffatt Karyn, Kildea John, Bitzas Vasiliki, Tsimicalis Argerie

机构信息

Ingram School of Nursing, McGill University, Montreal, QC, Canada.

School of Information Studies, McGill University, Montreal, QC, Canada.

出版信息

JMIR Res Protoc. 2021 Dec 13;10(12):e34652. doi: 10.2196/34652.

DOI:10.2196/34652

PMID:34898464

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8713105/

Abstract

BACKGROUND

Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer.

OBJECTIVE

The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada.

METHODS

This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features.

RESULTS

We anticipate that preliminary results will be available by Spring 2022.

CONCLUSIONS

An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/34652.

摘要

背景

处于姑息治疗阶段的癌症患者经常需要家庭护理人员的精心照料。如果没有足够的社区支持服务，患者可能会面临护理不足的风险，而家庭护理人员则有患抑郁症和健康状况不佳的风险。对于这类家庭来说，居家临时护理可能非常宝贵，尤其是当服务灵活且由值得信赖的护理人员（如护士）提供时。其他行业正在使用移动应用程序来使服务更加灵活。然而，很少有应用程序是专门为协调护士提供的临时护理服务而开发的，据我们所知，还没有一款应用程序是与受癌症影响的家庭共同设计的。

目的

本研究的目的是开发一个移动健康（mHealth）应用程序原型，用于协调由护士为加拿大魁北克省应对姑息治疗阶段癌症的家庭提供的灵活且值得信赖的居家临时护理服务。

方法

这项以用户为中心的设计研究是iRespite Services iRépit研究项目的核心组成部分。在本研究中，我们从两个姑息肿瘤医院科室和一个姑息居家护理社区合作伙伴招募20名护士、15名处于姑息治疗阶段的成年癌症患者及其20名家庭护理人员。在一个专家委员会的监督下，将在迭代信息系统研究框架指导的三个研究阶段进行远程数据收集：第1阶段，针对具有挑战性的临时护理场景集思广益潜在的应用程序解决方案，以更好地满足家庭护理人员和护理接受者的临时护理需求；第2阶段，评估潜在应用程序设计的低保真概念验证；第3阶段，对高保真交互式概念验证进行可用性测试，然后将其编程到应用程序原型中。将在每个阶段对定性和定量数据进行描述性分析，并进行三角验证以完善应用程序功能。