Parent reflections of experiences of participating in a randomized controlled trial of a behavioral intervention for infants at risk of autism spectrum disorders.
Parents stay in parent-training research when they feel a real bond with the coach, not when they only get a referral list.
01Research in Context
What this study did
Researchers asked parents what it felt like to join a trial of Adapted Responsive Teaching.
Families had babies flagged for autism risk. Half got coaching at home. Half got a list of community services.
No scores were taken. The team simply recorded parent stories in interviews.
What they found
Parents who received coaching called the bond with their coach a “win-win.”
Parents who only got the community list said they felt lost. They called it “navigating ambiguity.”
The personal link, not the label “research,” made families stay and trust the process.
How this fits with other research
Waldron et al. (2023) talked to parents of already-diagnosed preschoolers. Those families also loved early help, but they warned of feeling “dropped” when services ended. Leung et al. (2014) shows the start of the journey; Waldron et al. (2023) shows the cliff at the end.
Pickard et al. (2019) tested an adapted Project ImPACT in a Medicaid system. Parents who saw the co-designed version reported fewer barriers and higher intent to use the strategies. The same theme pops up: when parents help shape the program, they buy in.
Dai et al. (2021) moved parent training online. About two-thirds of caregivers finished all modules and called the course “clear” and “useful.” Leung et al. (2014) proves rapport matters in person; Dai et al. (2021) shows it can survive on a screen.
Why it matters
You can copy the warm hand-off that made families feel safe. Start each parent coaching contract with a short “get-to-know-you” visit. Ask caregivers what times, words, and rewards fit their life. End every block of sessions with a written bridge plan that names the next real-world step. These two moves cost nothing and may keep families from drifting away when research funds end.
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02At a glance
03Original abstract
BACKGROUND: Despite the mounting evidence of efficacy of early intervention for children with autism spectrum disorders, there is little research that considers the various perceptions and resources with which parents respond to the pressures and opportunities associated with participation in early intervention. Research is particularly lacking surrounding experiences of parents with infants who are at risk of autism spectrum disorders but do not (yet) have a diagnosed condition. OBJECTIVES: This qualitative study aimed to explore the experiences of caregivers following their participation in a randomized controlled trial of Adapted Responsive Teaching, a parent-infant relationship-focused intervention for infants at risk of autism spectrum disorders in a community sample. Parents were randomized into either the treatment group, in which they participated in the Adapted Responsive Teaching intervention, or the community services group, in which they were provided with information regarding local early intervention services and were encouraged, but not required to, seek community services as part of their inclusion in the randomized controlled trial. METHODS: Semistructured interviews were conducted with families following the completion of the randomized controlled trial. Participants consisted of 13 mothers and 4 fathers. Five dyads were interviewed together for a total of 14 families. Child ages ranged from 39 to 46 months at the time of interview. Analysis was conducted on 14 interviews from 10 families who were randomized into the treatment group and 4 families randomized into the community services group. Analysis was informed by a thematic analysis approach, which involved a systematic process of coding and theme identification both across and within groups. RESULTS: Themes that emerged across groups included Working against all odds, Value of the personal relationship, Getting the ball rolling, and Getting dad on board. One broad theme represented the data within the groups: Win-win (Adapted Responsive Teaching group) and Navigating amidst ambiguity (community services group). CONCLUSIONS: This study illuminates the personal experiences and contextual influences affecting families who are participating in the randomized controlled trial through early identification of "risk" status for autism spectrum disorders in their infants. Insights gained from these interviews may serve to refine and enhance intervention models and to enhance early intervention services for families.
Autism : the international journal of research and practice, 2014 · doi:10.1177/1362361313483928