Co-Creating a Culturally Tailored Intervention with Promotoras and Latina Caregivers of Children with Intellectual and Developmental Disabilities: A Conceptual Model

Background and Purpose: Research has shown that persistent health disparities among Latinx families of children with intellectual and developmental disabilities (IDD) negatively impact both the child with IDD and their family caregivers. However, most evidence-based interventions for families of children with IDD are not tested nor developed in collaboration with culturally diverse participants such as the Latinx community. This paper proposes a conceptual model (LAAREDS) that describes the participatory process of co-creating a culturally tailored health promotion intervention with promotoras (peer mentors) and Latina caregivers of children with IDD. It also includes eight engagement and retention strategies that were derived from the lived realities between promotoras and participants.

Methods: Using principles of community-based participatory research, we developed our initial curriculum manual based on two previous efficacious culturally tailored programs that were co-created with Latina caregivers of children with IDD and community partners. We presented the working manual to our community advisory board and promotoras, who were also Latina caregivers of children with IDD. We revised the curriculum according to the community’s feedback and piloted the 10-session intervention to 30 study participants (15 families in Texas and Illinois). Promotoras delivered all individual sessions remotely. We routinely received feedback from our promotoras and participants through weekly meetings, feedback surveys, and follow-up individual interviews and focus groups on ways to improve the curriculum content, organization, presentation slides, modality, toolkit, logistics, support mechanisms, and other topics of interest.

Results: Based on our co-creation process of the intervention, we propose an iterative and dynamic model that would help facilitate intervention development with the community: (a) language and linguistic preferences; (b) acculturation level; (c) accessibility factors; (d) reflecting values, ways of thinking, and ways of doing; (e) delivery and learning styles; and (f) social, cultural, and physical environment. At the core of the six interactive dimensions are the voices of the community, including the caregivers, promotoras, and community partners who were actively engaged in improving the intervention alongside the research team. Based on their experience interacting with study participants, our promotoras developed eight engagement and retention strategies and we included this as a part of the model.

Conclusion and Implications: In response to the growing ethnic diversity in the US, promoting health equity through culturally tailoring of interventions has become a public health and social justice imperative. The LAAREDS model can serve as a guiding tool to collaborate and engage with the community using a strengths-based approach from the inception. Its participatory nature prompts attention to the voices of the community and in-built flexibility of the promotoras model that allows for customization of each session to meet the unique preferences and needs of our participants. Our pilot study achieved high engagement and retention rates, and findings were used to inform the randomized controlled trial.