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跨代际和跨环境信息共享（InfoSAGE）：研究设计和方法学方案。

Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.

机构信息

Division of Clinical Informatics, Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Boston, MA, 02115, USA.

Harvard Medical School, 25 Shattuck Street, Boston, MA, 02115, USA.

出版信息

BMC Med Inform Decis Mak. 2018 Nov 20;18(1):105. doi: 10.1186/s12911-018-0697-4.

DOI:10.1186/s12911-018-0697-4
PMID:30458840
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6245635/
Abstract

BACKGROUND

Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.

METHODS

This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.

DISCUSSION

Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

摘要

背景

长寿给医疗保健提供者和家庭护理者带来了越来越多的护理需求。越来越多的护理负担落在一个主要护理者身上，这增加了压力，降低了健康状况。此外，对于 75 岁以上成年人在使用在线平台与家庭成员共享健康信息方面的偏好，发表的内容很少。本研究旨在评估一种新的基于互联网的以家庭为中心的沟通和协作平台，该平台旨在满足社区环境中老年人及其非专业护理人员的信息需求。

方法

这是一项基于互联网的开放前瞻性队列研究，招募一对年龄在 75 岁以上的成年人和一名非专业护理人员。将向这些对提供使用 InfoSAGE 在线平台的机会，但不进行前瞻性分配。参与者将通过在线流程同意参与，该流程允许从任何地点参与，并共享重要的研究和隐私细节。该平台将能够捕获搜索查询并跟踪任务和讨论等功能。在两年内，每六个月进行一次调查，使用经过验证的工具评估健康状况、健康和社会需求以及护理人员负担。

我们将采用混合方法，利用定性调查数据和网站使用分析数据。

讨论

对纵向使用和调查数据的分析将有助于研究随着核心老年人年龄的增长，家庭沟通和健康信息搜索的模式。我们将利用研究数据为设计提供建议，这些建议与用户的复杂组合有关，特别考虑到老年用户和潜在身体限制的需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/a095fc7602c9/12911_2018_697_Fig7_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/3c17ebfbeb8d/12911_2018_697_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/3c3b0924cbf3/12911_2018_697_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/a46920309096/12911_2018_697_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/60c6dec033c2/12911_2018_697_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/67f99bf390e7/12911_2018_697_Fig5_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/dc65f3d2242d/12911_2018_697_Fig6_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/a095fc7602c9/12911_2018_697_Fig7_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/3c17ebfbeb8d/12911_2018_697_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/3c3b0924cbf3/12911_2018_697_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/a46920309096/12911_2018_697_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/60c6dec033c2/12911_2018_697_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/67f99bf390e7/12911_2018_697_Fig5_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/dc65f3d2242d/12911_2018_697_Fig6_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96d0/6245635/a095fc7602c9/12911_2018_697_Fig7_HTML.jpg

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Addressing the Challenges of Aging: How Elders and Their Care Partners Seek Information.应对老龄化挑战：老年人及其护理伙伴如何寻求信息。
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Information Sharing Preferences of Older Patients and Their Families.老年患者及其家属的信息共享偏好。
家庭为老年老年人管理药物的可用性协议的设计和方法学。
BMC Med Inform Decis Mak. 2019 Sep 5;19(1):181. doi: 10.1186/s12911-019-0907-8.
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