What are the four pillars of authentic engagement of communities and individuals with lived experience through co-design?
What are the four pillars of authentic engagement with communities and individuals with lived experience through co-design?
By Christopher Rudd, Surbhi Kalra, Justin Walker, and Justin Hayden1
The leadership, perspectives, and voices of people with lived experience are vital to designing interventions to address the challenges and inequities within child welfare and adjacent systems. Co-design is an approach that brings together a diverse group of stakeholders and prioritizes those with lived experiences while designing interventions.
As child protection agencies and partner organizations engage people with lived experience, they must be mindful of the trauma and harm that the child welfare system inflicted through intrusive investigations and the separation of children from their families. Traumatic experiences often lead individuals to distrust and feel apprehension about fully engaging with those viewed as system representatives. Organizations must identify and address barriers to people with lived experience fully engaging, contributing, and co-leading improvement and transformation efforts. Failure to do so creates environments where individuals with lived experience are expected to engage without the necessary tools and support they need to be equal partners in the work.
Transforming the child welfare system will require creating new policies, practices, and infrastructures that center equity, prevention, and the well-being of children and families. These same children and families know best what they need and what policies and procedures have harmed them. The future of child welfare must be co-designed, which involves learning to co-design equitably, assessing organizational readiness to co-design, and engaging in ways that providers, partners, and other key stakeholders in the system may not have done before. Authentic engagement stands in stark contrast to the perfunctory and symbolic interactions that make co-designers feel tokenized. This level of engagement requires interacting with intentional authenticity and repairing the mistrust caused by past interactions and experiences within the system.
This brief outlines the four key pillars of ChiByDesign’s approach for authentically engaging people with lived experience, hereafter referred to as co-designers, in system transformation: sharing power; prioritizing people with lived experiences; creating physical and psychological safety; and equipping everyone to fully engage.
Following the description of each pillar are key recommendations based on ongoing consultation with child welfare stakeholders. These actions collectively provide infrastructures that enable respect, care, safety, and personal agency for everyone involved.
Power-sharing offers equal opportunities for all stakeholders to utilize their skills, make complex decisions, and carry out shared and individual responsibilities. Organizations must identify, understand, and acknowledge where power imbalances exist before inviting co-designers into organizational spaces, such as meetings, projects, workgroups, and committees. The contributions of co-designers extend beyond sharing their individual cases or personal experiences. Sharing power with co-designers enables them to improve existing programs, determine what new supports and services may be necessary, identify how to achieve positive outcomes, and advance systems change. To effectively share power, organizations should:
- Create a space to unlearn practices or beliefs that individuals and organizations consider “right” but are harmful to individuals and communities with lived experiences (for example, unlearning extractive community research practices that result in knowledge being taken out of the community for someone else’s gain, sometimes leaving communities worse off).
- Address education biases in teams, ensuring that all forms of knowledge and paths to it are valued equally. (In other words, knowledge learned in a classroom should be given no higher value than knowledge gained through personal experience.)
- Be transparent around engagement goals, processes, roles, and responsibilities.
- Collectively build norms, values, and expectations, and create mechanisms for accountability that integrate the needs and preferences of all co-designers.
- Create collective decision-making structures that enable co-designers to influence processes and outcomes and situate them as the final decision-makers on interventions.
Prioritizing people with lived experience
Co-designers are experts on their own lived experiences and therefore are experts on how the system and the interactions within it need to change. As the holders of critical knowledge, their leadership and guidance must be prioritized. Organizations should value co-designers beyond the stories they share. Valuing stories and experiences more than the people who have lived them leads to tokenization, creating environments where recounted stories do not lead to action and the people telling them become the narrators of trauma-filled cautionary tales. Authentically engaging people and communities with lived experience requires building intentional, welcoming, and respectful environments. Organizations should:
- Integrate co-designers into the organization, enabling them to be agents of change rather than external voices.
- Broaden the diversity of thought and experience by partnering with multiple co-designers, as their experiences and perspectives are not monolithic.
- Acknowledge, respect, and reciprocate the contributions of co-designers by providing opportunities and experiences that would be meaningful and beneficial, including opportunities to lead, develop projects, speak on behalf of the organization, and nurture personal growth.
- Recognize barriers to engagement and increase accessibility by providing transportation, and other appropriate accommodations to engage in activities.
- Maintain engagement and communication by sharing and educating on the necessary tools, methods, and processes, informing them of any missed events, and avoiding penalties for needing to meet other obligations.
- Prioritize flexibility by scheduling meetings, events, and other activities outside of typical business hours as needed for co-designers to fully participate in the work.
Creating physical and psychological safety
Children and youth in the child welfare system are more likely than children in the general population to have experienced multiple or prolonged forms of trauma, such as exposure to violence. This trauma is exacerbated by removal from their families and adverse experiences within the child welfare system, creating distrust and skepticism about engaging with the system. Organizations therefore must respond by prioritizing the safety and well-being of the individuals involved. That means creating and having spaces that are free of judgment and do not cause physical, emotional, or psychological harm. When organizations engage co-designers, they often ask them to share their stories, experiences, ideas, and opinions, at times without employing, compensating or formally acknowledging them. Sharing experiences in an environment that is punitive and lacks trust among people, communities, and organizations can create additional trauma for co-designers. Organizations should:
- Prioritize building trust and relationships before recruitment for projects. Setting up forums to listen to co-designers creates safe spaces for organizations and communities to be vulnerable and bridge the trust gap.
- Clearly communicate any potential risks of engagement or affiliation with an initiative so co-designers can make informed decisions about their level of participation.
- Collectively create shared values and norms to set behavioral expectations, promote accountability, improve performance, and enable action.
- Be transparent and explicit about expectations, processes, and structures to remove any assumptions people may have.
- Utilize trauma-informed strategies that include training for jurisdictions and community partners, and counseling and support services for co-design teams (such as constituent advocates and psychologists).
- Facilitate environments where co-designers can share perspectives without fear of judgment or retaliation (for example, protect co-designers and hold others accountable for making inappropriate statements during discussions).
- Facilitate physically secure environments by creating safe spaces (for example, meeting in spaces where co-designers are already comfortable or have power).
- Adapt spaces by removing messaging, art/photographs, or other objects that trigger past events for co-designers, which could lead to emotional or psychological distress and power imbalance.
Equipping everyone to fully engage
Engaging co-designers requires organizations to build the conditions necessary for active participation from the entire team, ensuring everyone has equal footing from which to participate. Failure to create an environment where all co-designers feel fully engaged will likely prevent them from having the agency to make informed decisions and contributions that reflect their authentic abilities and passion for the work. Organizations should:
- Prioritize building relationships across teams to remove hierarchical, relational, cultural, and professional barriers to engagement.
- Identify and actively address any technical or contextual knowledge gaps that may impact co-designers ability to contribute to the work.
- Ensure everyone has appropriate access to relevant information in a way that doesn’t isolate, disparage, or embarrass co-designers.
- Establish infrastructure and methods for creating clarity around team and organizational processes and norms, from contributing ideas and making decisions to more operational tasks.
- Enable co-designers to contribute through various modes and styles. (Understand how and in what ways co-designers want to participate in the work and then create avenues for their participation).
Co-design is dependent on integrating co-designers into organizations as the drivers of positive change. The authentic engagement needed to achieve this integration requires continuous reflection on — and revision of — organizational policies and practices in alignment with these four pillars of authentic engagement. Foremost among these are power-sharing and prioritizing lived experience, as they set the conditions that enable creating safe environments and equipping co-designers to fully engage. The learnings and considerations shared here are a starting point for organizations as they work toward co-designing authentically.
1 Christopher Rudd, Founder and CEO, ChiByDesign, and Clinical Professor of Practice at IIT Institute of Design; Surbhi Kalra, Design Lead, ChiByDesign; Justin Walker, Design Researcher and Strategist, ChiByDesign; Justin Hayden, Co-founder of Raising Resilience, Casey Family Programs Constituent Consultant, FosterClub Alumnus, Indiana Youth Advisory Board Normalcy Outreach Coordinator, and Purdue University Northwest Communication Major
2 Stein BD, Zima BT, Elliott MN, Burnam MA, Shahinfar A, Fox NA, Leavitt LA. Violence exposure among school-age children in foster care: relationship to distress symptoms. Journal of American Academy of Child Adolescent Psychiatry. 2001 May; 40(5):588-94. doi: 10.1097/00004583-200105000-00019. PMID: 11349704.
ChiByDesign, a Chicago-based social and civic impact design firm, proposes using a fully integrated, constituent-led co-design approach to co-create equitable outcomes with those most affected. Following engagement with child protection agencies and key stakeholders over the last few years, ChiByDesign has begun to identify how the practice and mindsets of co-design can be used to co-create a system of child and family well-being. ChiByDesign has served as the facilitator of critical conversations and leveraged its power as designers to amplify the voices and experiences of the people closest to the needs addressed. They do so by adding people with lived experience to their teams as co-designers, nurturing their unique perspectives and providing them with tools and resources to co-create their futures.