Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers
BackgroundDigital 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, t...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2024-12-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2024/1/e60353 |
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| author | Anna Jolliff Richard J Holden Rupa Valdez Ryan Coller Himalaya Patel Matthew Zuraw Anna Linden Aaron Ganci Christian Elliott Nicole E Werner |
| author_facet | Anna Jolliff Richard J Holden Rupa Valdez Ryan Coller Himalaya Patel Matthew Zuraw Anna Linden Aaron Ganci Christian Elliott Nicole E Werner |
| author_sort | Anna Jolliff |
| collection | DOAJ |
| description |
BackgroundDigital 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.
ObjectiveThis 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.
MethodsWe 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.
ResultsIn 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.
ConclusionsThese 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. |
| format | Article |
| id | doaj-art-fab45fb10cdf4bd4bb3496d51a46a044 |
| institution | Kabale University |
| issn | 1438-8871 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj-art-fab45fb10cdf4bd4bb3496d51a46a0442024-12-03T19:00:32ZengJMIR PublicationsJournal of Medical Internet Research1438-88712024-12-0126e6035310.2196/60353Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family CaregiversAnna Jolliffhttps://orcid.org/0000-0002-5099-1469Richard J Holdenhttps://orcid.org/0000-0002-3603-6158Rupa Valdezhttps://orcid.org/0000-0002-5125-0793Ryan Collerhttps://orcid.org/0000-0003-2657-294XHimalaya Patelhttps://orcid.org/0000-0003-2334-0334Matthew Zurawhttps://orcid.org/0000-0002-3931-722XAnna Lindenhttps://orcid.org/0000-0002-1381-4332Aaron Gancihttps://orcid.org/0000-0002-7121-559XChristian Elliotthttps://orcid.org/0000-0001-5268-5775Nicole E Wernerhttps://orcid.org/0000-0003-2363-9491 BackgroundDigital 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. ObjectiveThis 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. MethodsWe 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. ResultsIn 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. ConclusionsThese 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.https://www.jmir.org/2024/1/e60353 |
| spellingShingle | Anna Jolliff Richard J Holden Rupa Valdez Ryan Coller Himalaya Patel Matthew Zuraw Anna Linden Aaron Ganci Christian Elliott Nicole E Werner Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers Journal of Medical Internet Research |
| title | Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers |
| title_full | Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers |
| title_fullStr | Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers |
| title_full_unstemmed | Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers |
| title_short | Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers |
| title_sort | investigating the best practices for engagement in remote participatory design mixed methods analysis of 4 remote studies with family caregivers |
| url | https://www.jmir.org/2024/1/e60353 |
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