Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

Abstract

Introduction Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. Methods MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). Results We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. Conclusion Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD Trial registration This study is registered with ClinicalTrials.gov: NCT03711799.

Feasibility of a peer-led, after-school physical activity intervention for disadvantaged adolescent females during the COVID-19 pandemic: results from the Girls Active Project (GAP)

“…This study also explored the feasibility of measuring the proposed self-reported outcomes (minutes of daily moderate-to-vigorous PA (MVPA), height, weight, selfrated health, life satisfaction, self-efficacy related to PA and PA enjoyment) that will be used to evaluate efficacy in a future trial [41], by assessing their completion rates. Reporting data completion rates is consistent with previous feasibility studies [44,45] and proves useful as this information can help inform intervention refinements and provide additional support for the feasibility of using these outcome measures [43].…”

Randomized pilot study of a special education advocacy program for Latinx/minority parents of children with autism spectrum disorder

“…Despite this increased knowledge, parents did not change in their feelings of empowerment in advocating for services, therefore suggesting they had not gained confidence to actually advocate. It may be that parents need more time with the information, or more direct coaching as offered in other, more intense parent-to-parent programs (Iadarola et al, 2020;Lopez et al, 2020) in order to increase their confidence in successfully advocating for their children. However, it could be that other measures of empowerment could yield important information about what parents' actually do to help their children (e.g.…”

“…This is important when we are trying to be more inclusive of low-income, minority families in autism research. Similarly, our work with the Mind the Gap parent-to-parent intervention has shown favorable results in empowering Latinx and other minority parents in navigating the special education process and healthcare systems (Iadarola et al, 2020). The Mind the Gap program offers a feasible and effective parent-to-parent mentoring program but is not uniquely focused on the IEP (i.e.…”

“…The Mind the Gap program offers a feasible and effective parent-to-parent mentoring program but is not uniquely focused on the IEP (i.e. school-based services; Iadarola et al, 2020). Hence, there is a dearth of research on IEP advocacy knowledge for low-income, Latinx immigrant-origin families, using a short-term, low-intensity intervention.…”

Using Novel Implementation Tools for Evidence-based Intervention Delivery (UNITED) across public service systems for three evidence-based autism interventions in under-resourced communities: study protocol

“…We will pair UNITED with three EBIs that cover the ages of early childhood, childhood, and adolescence. These include Mind the Gap (MTG), a family navigation intervention for children less than 8 years of age who are newly diagnosed with ASD [ 27 ], Remaking Recess (RR), a school-based social/peer engagement intervention for children ages 5–12 [ 3 , 4 , 28 – 30 ], and Self-Determined Learning Model of Instruction (SDMLI), a self-determination intervention for adolescents (13–22 years; 22 is the upper age limit of high school for individuals with disabilities) [ 31 – 35 ].…”