Engaging Low-Income Latino Families in a Community-Based Executive Function Intervention for Children with ASD or ADHD

Background:  

Low-income Latino families face critical disparities in access to and involvement in diagnostic and treatment services for autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).  The factors that contribute to this problem are both socioeconomic, including lack of financial resources to pay for services, and cultural, such as lack familiarity with research and medical systems.  The handful of prior studies that have investigated the application of treatments for neurodevelopmental disorders with ethnic minority children have indicated that cultural adaptations are likely needed for the successful implemention, although the types of adaptations needed is unclear. 

Objectives:

This study made use of Diffusion of Innovation (DOI) theory, which provides a framework for understanding how individuals and groups adopt new behaviors, in this case participation in treatment research, to identify the methodological considerations and adaptations made to research procedures in order to effectively recruit and engage low-income Latino families.  Information was collected during the implementation of a PCORI-funded, comparative effectiveness study of two community-based executive function interventions for children with ADHD or ASD. 

Methods:

Changes in procedures and measures were crafted based on initial consultation with stakeholders, as well as experiences during implementation of different components of the study: 1) initial contact with parents made by school personnel during the process of identifying potential participants in the study; 2) consultation with a stakeholder advisory board of community advocates, practitioners, and parents; 3) translation of materials and measures by multiple bilingual members of the research team; 4) parent trainings during which families received information on their child’s intervention and support strategies to use at home; and 5) contact between parents and a Latina Family Navigator to offer support and answer questions about the program.

Results:

Methodological adaptations to the research protocol were made to more effectively engage Latino families, leading to important lessons regarding their involvement in research process and community based treatment.  Within the DOI framework, these adaptations were related first to increasing awareness of the link between the intervention and family needs by providing information on the child’s problems and how the intervention addresses them.  Adaptations were also linked to three key characteristics of the interventions and research protocols that DOI research has identified as influential in determining adoption of innovations: (1) incorporating the role of family in influencing decisions related to engagement, including perceptions of diagnosis and treatment and forming relationships with trusted community members and organizations enhanced compatibility with the needs and existing values of families; (2) scheduling logistics, language and educational barriers, financial strain and time constraints were addressed to reduce the complexity or the level of difficulty of requirements and procedures; and (3) providing information to establish the relative advantage of the interventions over other options.  

Conclusions:  

The strategies utilized in this study and pragmatic adaptations made over the course of the trial highlight the need for a thoughtful and flexible approach to working with low-income, Latino families in community-based research.