Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers.

IF 5.8 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES
Anna Jolliff, Richard J Holden, Rupa Valdez, Ryan J Coller, Himalaya Patel, Matthew Zuraw, Anna Linden, Aaron Ganci, Christian Elliott, Nicole E Werner
{"title":"Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers.","authors":"Anna Jolliff, Richard J Holden, Rupa Valdez, Ryan J Coller, Himalaya Patel, Matthew Zuraw, Anna Linden, Aaron Ganci, Christian Elliott, Nicole E Werner","doi":"10.2196/60353","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers.</p><p><strong>Objective: </strong>This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved.</p><p><strong>Methods: </strong>We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data.</p><p><strong>Results: </strong>In 62.9% (83/132) of evaluations across projects 1-3, participants described the session as \"very effective.\" In 74% (28/38) of evaluations for project 4, participants described feeling \"extremely satisfied\" with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem.</p><p><strong>Conclusions: </strong>These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power-sharing. Emphasis should be placed on increasing the psychosocial benefits of engagement (eg, sense of community and purpose) and increasing opportunities to participate in disseminating findings and in future studies.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e60353"},"PeriodicalIF":5.8000,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11653040/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Medical Internet Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2196/60353","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0

Abstract

Background: Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers.

Objective: This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved.

Methods: We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data.

Results: In 62.9% (83/132) of evaluations across projects 1-3, participants described the session as "very effective." In 74% (28/38) of evaluations for project 4, participants described feeling "extremely satisfied" with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem.

Conclusions: These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power-sharing. Emphasis should be placed on increasing the psychosocial benefits of engagement (eg, sense of community and purpose) and increasing opportunities to participate in disseminating findings and in future studies.

调查远程参与设计的最佳实践:4个家庭照顾者远程研究的混合方法分析。
背景:数字卫生干预是向资源不足的家庭照顾者提供及时支持的一种有希望的方法。通过让护理人员参与参与式设计(PD),可以提高护理人员对数字健康干预措施的接受程度。近年来,人们开始转向远程进行PD,这可能使以前难以接触到的群体参与进来。然而,关于如何最好地促进家庭照顾者参与远程PD,人们知之甚少。目的:本研究旨在(1)了解远程PD家庭照顾者参与体验的背景、质量和结果;(2)了解观察到的PD方法中哪些方面促进了参与或需要改进。方法:我们分析了4个远程PD研究中由研究人员和社区合作伙伴(家庭照顾者)完成的评估和反思调查以及访谈的定性和定量数据。研究的重点是为家庭照顾者建立数字健康干预措施。对于每项研究,社区合作伙伴与研究合作伙伴在6个月内进行4到5次设计会议。每次会议结束后,合作伙伴完成一份评估调查。在四项研究中的一项中,研究人员和社区合作伙伴完成了一次反思调查和访谈。采用描述性统计对定量评价和反思性调查数据进行总结,采用反思性专题分析对定性数据进行理解。结果:在项目1-3的62.9%(83/132)的评估中,参与者将会议描述为“非常有效”。在74%(28/38)的项目4评估中,参与者描述对会议感到“非常满意”。与参与背景相关的定性数据表明,合作伙伴的身份、远程PD的技术背景以及合作伙伴对项目及其角色的理解都影响了参与。在参与质量、关系建立和共同学习领域;对前期工作、设计活动、时间分配和最终原型的满意度;包容性和影响力的分配有助于合作伙伴的参与体验。参与的结果包括合作伙伴在项目结束后对项目的持续兴趣,对参与的感激,以及一种意义和自尊感。结论:结果表明远程PD过程满意度高,远程PD特异性损失少。结果还展示了可以改变流程以提高合作伙伴参与度和结果的具体方法。社区伙伴应该从研究开始就参与其中,确定要解决的问题、使用的方法以及他们在项目中的角色。在整个设计过程中,可以使用在线工具来检查合作伙伴对设计过程的满意度以及对包容性和权力分享的看法。重点应放在增加参与的社会心理利益(例如社区感和目的感)和增加参与传播调查结果和未来研究的机会。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
CiteScore
14.40
自引率
5.40%
发文量
654
审稿时长
1 months
期刊介绍: The Journal of Medical Internet Research (JMIR) is a highly respected publication in the field of health informatics and health services. With a founding date in 1999, JMIR has been a pioneer in the field for over two decades. As a leader in the industry, the journal focuses on digital health, data science, health informatics, and emerging technologies for health, medicine, and biomedical research. It is recognized as a top publication in these disciplines, ranking in the first quartile (Q1) by Impact Factor. Notably, JMIR holds the prestigious position of being ranked #1 on Google Scholar within the "Medical Informatics" discipline.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信