Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System
Abstract
1. Introduction
2. Background
2.1. HIV, Substance Use, and the Carceral System
2.2. Young Adults with Carceral System Involvement
2.3. Community-Engaged Research: Applications and Challenges
2.4. Design Justice
3. Applying Design Justice Principles to Developing and Testing an Intervention to Improve HIV and Substance Use Service Linkage for Young Adults Involved in the Carceral System
3.1. Project LYNX Description
3.2. Project LYNX Community Advisory Board Processes
3.3. Procedures
3.4. Study Team Reflections from Implementing Stages 1 and 2
4. Discussion
Recommended Process: Design Justice-Guided Iterative Review of Study Processes
- Preparation and Synthesis. Prior to each review session, the research team should synthesize recent implementation reflections and process notes, highlighting salient successes, challenges, and decision points. These materials should be prepared in ways that support continuity and onboarding (e.g., in the event of CAB turnover), including clear documentation of prior decisions and rationales. Key items should be explicitly mapped to relevant Design Justice principles (e.g., centering community leadership, minimizing harm, equitable distribution of benefits) and implementation science frameworks using accessible language and formats to ensure meaningful engagement by CAB members with varied lived experiences, roles, and levels of familiarity with research and implementation science concepts.
- Collaborative Review Sessions. Research team members and CAB members should convene in structured review sessions facilitated using guided prompts or activities. These prompts should encourage participants to assess the extent to which study processes align with Design Justice principles and to identify areas requiring adjustment, and note where in implementation processes these could be addressed. CAB members should be supported to validate or contradict interpretations, raise concerns, and propose community-informed alternatives.
- Co-Development of Adaptations. Proposed adaptations to study procedures should be collaboratively generated during review sessions, with explicit attention to feasibility, ethical implications, and potential unintended consequences. Decision-making should prioritize CAB perspectives, particularly for changes that affect participant burden, accessibility, trust, or community benefit.
- Documentation and Accountability. All agreed-upon adaptations should be documented in a shared action log that specifies the rationale for changes, responsible parties, and anticipated timelines. Teams should communicate back to CAB members about how recommendations were implemented, modified, or deferred to reinforce transparency and accountability.
- Sustainability and Continuous Improvement. Teams should periodically reflect on the effectiveness of this iterative review process itself. This reflection should include structured opportunities for CAB members to provide feedback on the extent to which power sharing, transparency, and collaborative decision-making were meaningfully enacted. Teams are encouraged to assess whether the review cadence, facilitation approaches, and documentation practices adequately support equitable participation and timely responsiveness to community-identified concerns. Based on this feedback, teams should refine review structures as needed and document recommendations for sustaining Design Justice–aligned practices beyond the current study, including their integration into future projects, institutional workflows, or partnership agreements.
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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| Principle | Description |
|---|---|
| Principle 1 | We use design to sustain, heal, and empower our communities, as well as to seek liberation from exploitative and oppressive systems. |
| Principle 2 | We center the voices of those who are directly impacted by the outcomes of the design process. |
| Principle 3 | We prioritize design’s impact on the community over the intentions of the designer. |
| Principle 4 | We view change as emergent from an accountable, accessible, and collaborative process, rather than as a point at the end of a process. |
| Principle 5 | We see the role of the designer as a facilitator rather than an expert. |
| Principle 6 | We believe that everyone is an expert based on their own lived experience, and that we all have unique and brilliant contributions to bring to a design process. |
| Principle 7 | We share design knowledge and tools with our communities. |
| Principle 8 | We work towards sustainable, community-led and -controlled outcomes. |
| Principle 9 | We work towards non-exploitative solutions that reconnect us to the earth and to each other. |
| Principle 10 | Before seeking new design solutions, we look for what is already working at the community level. We honor and uplift traditional, indigenous, and local knowledge and practices. |
| Design Justice Principle | Where Have We Been Challenged with This Principle? | Where Have We Had Success Applying This Principle? | How Could We Improve Our Process? |
|---|---|---|---|
| Design Justice Principle Number 1: We use design to sustain, heal, and empower our communities, as well as to seek liberation from exploitative and oppressive systems. | Because we are working to improve conditions within an oppressive criminal legal system, part of the challenge is to do so without feeding resources into harmful system or otherwise legitimizing the existing system. | We focus on empowerment by conceptualizing the goal of substance use treatment linkage within the context of harm reduction. | Hiring practices & improving representation on study team |
| We are reckoning with structural inequities while also trying to produce a product/provide an intervention—the timeline required to address the former is much longer than the time alloted to do the latter. | We engage in self-reflexivity (being transparent about our identities during project outreach and partnership development) | Continued community engagement | |
| The research/design team does not have the direct lived experience of criminal legal involvement and so the healing and empowerment process is separated from those most directly affected. | We explicitly name systemic harms as part of work in this space, describing where & how they shape disparities in all spaces in which we operate, to maintain the tension of improving conditions without feeding the oppressive system. | ||
| In line with empowerment of communities, the project involves staffing & budget for jobs uniquely developed for peers which will be implemented with Aim 2 | |||
| We engage and collaborate with organizations & people (systems partners) with similar goals/values |
| Dimension | Description |
|---|---|
| Evidentiary Support | The data that are used to support the development and implementation of the intervention/program/service. |
| Partner Engagement | Planning for the degree to which key and representative partners from the project site(s) and the community in which the project takes place had input into defining the population, clinical problem, or intervention/program/service being delivered to help ensure that interventions will be effective across diverse groups/contexts and used and sustained in practice over time. |
| Contextual Determinants | Consideration of systems, organizational, provider, and patient/consumer-level factors that affect implementation of the intervention (i.e., barriers and facilitators) that may impact the reach and adoption of the intervention/program/service. |
| Implementation Strategies | Selection, adaptation, and description of, methods, activities, and resources that support implementation and sustainment of the intervention/program/service (e.g., training, facilitation/coaching, incentives, performance data, audit and feedback), operationalized as the steps and methods taken to support users (within the project or in the real world) with the installation or sustainment of the intervention/program/service. |
| Implementation Outcomes | Evaluation of effects of actions to implement or sustain the intervention, program, or service (how much and how well an intervention was implemented/sustained). |
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Share and Cite
Sweet, S.; McCaffery, N.; Jiang, J.; Coulter, R.W.S.; Egan, J.E.; Myers, J.; Shumway, M.; Tolou-Shams, M.; Dauria, E.F. Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System. Soc. Sci. 2026, 15, 55. https://doi.org/10.3390/socsci15010055
Sweet S, McCaffery N, Jiang J, Coulter RWS, Egan JE, Myers J, Shumway M, Tolou-Shams M, Dauria EF. Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System. Social Sciences. 2026; 15(1):55. https://doi.org/10.3390/socsci15010055
Chicago/Turabian StyleSweet, Sheridan, Nicole McCaffery, Jerry Jiang, Robert W. S. Coulter, James E. Egan, Janet Myers, Martha Shumway, Marina Tolou-Shams, and Emily F. Dauria. 2026. "Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System" Social Sciences 15, no. 1: 55. https://doi.org/10.3390/socsci15010055
APA StyleSweet, S., McCaffery, N., Jiang, J., Coulter, R. W. S., Egan, J. E., Myers, J., Shumway, M., Tolou-Shams, M., & Dauria, E. F. (2026). Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System. Social Sciences, 15(1), 55. https://doi.org/10.3390/socsci15010055

