Telehealth Training in Naturalistic Communication Intervention for Mothers of Children with Angelman Syndrome

Abstract

Objectives Young children with Angelman syndrome have significant delays in expressive communication. Parents of children with Angelman syndrome require training to support their child’s communication development. Unfortunately, parent training focused on the needs of families of children with rare genetic syndromes is unavailable to many families. The purpose of this study was to evaluate a telehealth parent training program on naturalistic communication intervention for young children with Angelman syndrome. Methods Using two single-case multiple baseline designs across a total of six parent–child dyads, we evaluated the effects of a telehealth parent training program on parent implementation fidelity of a naturalistic communication intervention, child communication, and child engagement. Results With the telehealth parent training program, parent implementation fidelity of naturalistic communication intervention improved, maintained and generalized to untrained home routines. Small effects on child communication and engagement were observed during the program. Conclusions Parents of children with Angelman syndrome were successfully taught via telehealth to implement a naturalistic communication intervention with their child at home. Additional research is needed to promote positive child communication outcomes through parent-mediated intervention.

Pepea Pamoja:† Applying the Ecological Validity Framework to co‐develop a wellbeing and behavioural training program for caregivers of young children with autism in low‐resource settings of Kenya and the United States

“…In the present study, NDBI was selected as a low intensity intervention that can be implemented by caregivers in their home setting. We applied the EVF model to adapt an NDBI‐informed caregiver intervention program that was developed and piloted in the United States with caregivers of young children with autism and Angelman syndrome (Rispoli et al, 2022; Rispoli et al, online first). In the pilot studies, the program was delivered individually to caregivers via telehealth and consisted of online asynchronous educational modules, caregiver practice of NDBI strategies for supporting child communication and/or decreasing child challenging behaviour, and weekly individualized coaching of parents by a facilitator to implement NDBI strategies with their child.…”

“…In the pilot studies, the program was delivered individually to caregivers via telehealth and consisted of online asynchronous educational modules, caregiver practice of NDBI strategies for supporting child communication and/or decreasing child challenging behaviour, and weekly individualized coaching of parents by a facilitator to implement NDBI strategies with their child. Delivery of the program resulted in improved caregiver use of NDBI strategies, maintenance and generalization of their use of strategies, and small effects on child communication and engagement (Rispoli et al, 2022).…”

“…In the present study, NDBI was selected as a low intensity intervention that can be implemented by caregivers in their home setting. We applied the EVF model to adapt an NDBI-informed caregiver intervention program that was developed and piloted in the United States with caregivers of young children with autism and Angelman syndrome (Rispoli et al, 2022;Rispoli et al, online first).…”

“…NDBI has demonstrated efficacy for teaching communication and language to children with autism. Specifically, studies in HIC have shown that when caregivers are taught to implement developmental and behavioural interventions with their child, access to learning opportunities increase, developmental outcomes improve, and caregiver self‐efficacy is strengthened (Rispoli et al, 2022).…”