Applying a CBPR Approach to Develop a Self-Advocacy Action Guide for Families

Background: In community-based participatory research (CBPR), partners contribute their expertise to enhance understanding of a given circumstance and translate knowledge into action and community benefit (Israel et al., 2001). This approach emphasizes an empowering and cyclical process that attends to social inequities and elevates participation, influence, and leadership of community members and non-academic researchers (Israel et al., 2001). Guided by these principles, this study describes the co-development of an action guide by individuals with lived experience in the child welfare system and university researchers in a Midwestern state. The study objectives were to: 1) describe the iterative process of developing the action guide, 2) identify key components of the guide, and 3) examine how participation fosters individual and community-level strengths.

Method: This study took place within a larger, five-year federal project to support kinship caregiving, promote collaborative parenting, and create systems change. The guide was developed through a collaborative process with an advisory council of individuals with all types of lived experience in child welfare (N=19) and university researchers. Planning for and creating the guide was primarily facilitated during monthly advisory council meetings. Partners participated in large- and small-group activities, including brainstorming sessions using an interactive online survey tool. Partners described resources and supports they found helpful, challenges with existing resource lists, and how they have overcome barriers to receiving support. Following each planning session, two researchers incorporated ideas into a draft and gathered additional feedback to refine resource pathways and strength-based messaging. Feedback was incorporated continuously during virtual meetings using structured discussions and member checking to refine the many iterations of the guide. The guide was subsequently shared with an outside advisory group of individuals with lived experience for additional validation and input.

Results: Lived experts identified the need for an action guide toolkit for self-advocacy and meeting individual and family resource needs versus replicating other resource banks. Necessary to our partners was that the guide stay relevant as service and resource availability within communities changes. The final product organizes content around a series of questions to ask oneself to identify a need and find a solution. It prioritizes decision-making support and includes example scripts and questions to ask providers and a support network. Key considerations of the guide included: 1) removing stigma around asking for help, 2) enabling healthy crisis management, 3) building trusting and supportive relationships with caseworkers, and 4) identifying and activating personal strengths.

Implications/Conclusions: Findings highlight the value of co-creation with community members with lived experience in supporting access to resources by leveraging creativity and individual strengths to meet family needs. Traditional resource lists may have limited utility in changing service environments, whereas the action guide supports family empowerment, self-advocacy, and system navigation. Lived experience was essential in shifting the guide from duplicating resource lists to an actionable and user-centered tool and resource. This approach offers a model for developing relevant, strengths-based tools for navigating complex systems and situations. Research implications will also be discussed around CBPR as a tool for democratizing knowledge creation.