Lessons Learned from Adapting a Peer-to-Peer Parenting Program for Urban Black Families Raising Children with Autism

Background:

Very little intervention research has focused specifically on low-income Black families raising young children with autism, despite documented racial disparities in autism diagnosis and treatment. While early intervention significantly improves child and family outcomes across the lifespan (Koegel, Koegel, Ashbaugh, & Bradshaw, 2014; Warren et al., 2011), low-income children with autism are less likely to access such services (Carr & Lord, 2016; Nguyen, Krakowiak, Hansen, Hertz-Picciotto, & Angkustsiri, 2016). Although Black caregivers across socioeconomic strata experience racial discrimination and poor parent-provider relationships, low-income Black caregivers also report limited autism knowledge and suboptimal access to care for their children (Dababnah, Shaia, Campion & Nichols, 2018).

Objectives:

We will report on the process of designing and initiating a feasibility trial of an adapted version of a peer-led, in-home, 14-week manualized program, Parents Taking Action, among low-income urban Black families raising children with autism. The presentation will focus on the first two aims of the project: 1) Engage key stakeholders in the local implementation of Parents Taking Action; and 2) Adapt Parents Taking Action for low-income caregivers of Black children with autism.

Methods:

Using the World Health Organization’s ExpandNet implementation science framework (Simmons, Fajans, & Ghiron, 2011), we used a mixed-methods approach to adapt, implement and evaluate Parents Taking Action. The intervention uses videos, activities, and discussion to cover topics on autism therapies, advocacy skills, behavior management strategies, and social support. Unlike group-based or clinical interventions, Parents Taking Action offers flexibility to participants, as meetings are set around caregivers’ schedules, and in-home meetings reduce travel time and costs. To accomplish Aims 1-2, we formed an advisory group composed of individuals with autism, parents, service providers, and advocates of children with autism. The group developed recommendations on adapting the program, identifying Parent Leaders (parents of older children or adults with autism from the local community) and recruiting participants (parents of young children with or at-risk for autism). We recruited both the Parent Leaders and the intervention participants from low-income neighborhoods in a large mid-Atlantic US city.

Results:

The advisory group met quarterly in person and consulted with the research team regularly between meetings to recommend actions related to intervention adaptation and implementation. The advisors’ primary recommendations included adding culturally relevant pictures and videos, addressing potential police interactions, modifying the language to be more strengths-focused, supplementing the manual with local resources, and reordering the weekly topics. After we summarized our advisors’ perspectives, the research team discussed recommended changes and modified the manual. We then identified, hired, and extensively trained four Parent Leaders to deliver the in-home program to a pilot group of 15-20 local parents of young children ages eight and younger with or at-risk for autism. We will discuss various challenges we encountered during the hiring and training processes, as well as the ways in which we addressed these obstacles.

Conclusions:

The “lessons learned” from developing and implementing a peer-led intervention with significant input from community stakeholders can be used to inform future studies targeting communities experiencing the multiple effects of poverty.