"We were the best people to do the job": Caregivers' reported outcomes of a virtual caregiver-delivered program for autistic preschoolers

Abstract

Background and aims: Caregiver-delivered programs are a recommended best practice to support young autistic children. While research has extensively explored children's outcomes quantitatively, minimal qualitative research has been conducted to understand caregivers' perspectives of program outcomes for themselves and their children. Hearing directly from caregivers is an important step in ensuring these programs are meeting the needs of those who use them. This study explored caregivers' perceived outcomes following one virtual caregiver-delivered program, The Hanen Centre's More Than Words^® (MTW) program.

Methods: This study was a secondary analysis of data from individual interviews conducted with 21 caregivers who had recently participated in a virtual MTW program. A hybrid codebook thematic analysis approach was taken to analyze the interview data. Program outcomes were coded and analyzed within the International Classification Functioning, Disability, and Health (ICF) framework. Additionally, caregivers completed an online survey and rated Likert Scale items about perceived program outcomes, which were analyzed descriptively.

Results: Five themes were identified: (1) caregivers learned new strategies to facilitate their child's development, (2) caregivers developed a new mindset, (3) children gained functional communication skills, (4) caregiver-child relationships improved, and (5) caregivers gained a social and professional support network. These themes fell within four of five ICF framework components (activities, participation, personal factors, and environmental factors). No themes were identified under Body Structures and Functions. Survey results indicated most caregivers reported learning new communication strategies (n = 20, 95%), and identifying new teaching opportunities with their child (n = 21, 100%).

Conclusions: Some reported outcomes, related to Activities and Participation, were consistent with previous reports in the literature on the MTW program. In line with previous research, caregivers learned strategies to support their child's communication development. Contrary to previous quantitative studies, caregivers in this study rarely commented on gains in vocabulary and instead focused on gains in skills that positively impacted their child's ability to engage in meaningful social interaction. Novel outcomes were identified within the Participation, Personal Factors, and Environmental Factors components of the ICF framework.

Implications: Caregivers in this study identified important outcomes for themselves and their child that have not been the focus of prior research, suggesting it is important to integrate their perspectives in the development and evaluation of caregiver-delivered programs. Clinicians should include goals that address outcomes identified as important by caregivers, including those that address children's Participation, and those that target caregivers' Personal and Environmental Factors. Developers of caregiver-delivered programs could integrate identified goals to ensure they are meeting families' needs.

Keywords: Autism; caregiver-delivered programs; virtual services.