Co-Design Issues with Marginalized Communities: Integrating Flexibility in Approach and Social Justice Principles

Background: A significant challenge remains in prevention science when considering the widespread disparities that obstruct marginalized communities from accessing the services they need. For example, a recent concerning trend in the US shows significant reductions in access to formal systems of care by underserved Latina/o families. In the international context, political instability and limited rule of law greatly impact the sustainability of community-based prevention initiatives. Here, we will reflect on efforts aimed at implementing evidence-based parenting prevention initiatives with marginalized Latino/a communities in the US and Mexico. Case studies will highlight the critical importance of co-design as a key tool to address persistent health disparities.

Method: The 1st case study describes a 10-year program of NIH-funded prevention research in Detroit, MI, focused on the cultural adaptation and dissemination of an evidence-based parenting intervention for low-income Latino/a immigrant families with children. The 2nd case study describes a 7-year collaborative effort with a leading NGO in northern Mexico wherein the original prevention initiative was substantially modified to adapt to a context of intense community violence and serious challenges to the rule of law.

Findings: The 1^st study, funded by NIMH, consisted of an RCT with 103 Latino/a immigrant families with children ages 4-12. Efficacy findings indicate the largest intervention effects were associated with the adapted version of the parenting intervention in which issues of discrimination and cultural challenges were overtly addressed. A NIDA-funded follow-up study provided further evidence of the importance of co-design for addressing issues associated with implementation feasibility and retention of Latina/o families with adolescents exposed to intense contextual challenges. This prevention study resulted in high retention at intervention completion (87%). We attribute this success to strategic co-design modifications implemented in close collaboration with community partners and families exposed to the intervention.

The 2^nd case study illustrates our work in the state of Chihuahua, a region dramatically impacted by drug trafficking. It shows the importance of co-design approaches aimed at modifying original research objectives if the contextual realities endanger the safety and wellbeing of targeted families and professionals involved.

Conclusion: Co-design is a critical research process with great potential to inform prevention services research with marginalized populations, particularly when finding the balance between adhering to rigorous scientific standards and responding to the realities of communities that continue to be deeply impacted by health disparities.