Caregivers' Voices Regarding Implementation of a Parent-Mediated Early Intervention for Toddlers with ASD

Background:   Caregiver-mediated early intervention models for families of toddlers with autism spectrum disorder (ASD) appear to be a viable intervention option. However, these models have been met with mixed findings regarding child outcomes (Oono, Honey, & McConachie, 2013). Due to the nature of these models in which caregivers are implementing the interventions, little is known about what actually happens when the interventions are implemented during these routines and activities. The field of implementation science referring to the study of how evidence based interventions are implemented in the intended manner, specifies the inclusion of stakeholders in the development and improvement of intervention models. However, caregivers, who are stakeholders andimplementers of caregiver-mediated early intervention models often are not included in the model development. Thus, it is crucial to understand a.) how feasible caregivers find the intervention and b.) what caregivers experience implementing interventions within their daily routines.

Objectives:  This presentation will share results from a social validity assessment and an interview study with caregivers who participated in a caregiver-mediated intervention. The specific research objectives include: 1.) Describe caregivers’ views on feasibility of the intervention and successes and barriers encountered in implementing the intervention 2.) Based on caregivers’ views and experiences, recommendations will be made regarding how caregiver-mediated early intervention models may be more feasible.

Methods:  Following participation in a randomized controlled trial testing the efficacy of Joint Attention Mediated Learning (JAML), data were analyzed. While most caregivers rated the social validity high, there was some variation, which deems further exploration into caregivers’ lived experiences in implementation. A purposive sample of caregivers who rated socially validity high and low, will be contacted to participate in a follow-up interview regarding their experiences implementing JAML including its applicability to their daily routines. Interview data will be compared with the data from the social validity forms. Interviews will be audio taped, transcribed, and systematically coded using a constant comparative process to identify themes that emerge from the caregivers’ challenges and successes in intervention implementation.

Results:  Data from social validity forms completed by caregivers in the intervention group indicated that 93% of participants strongly agree that the intervention is important, 63% strongly agree that they enjoyed their caregiver role in the intervention, and 82% strongly agree that they received the optimal amount of support. Caregivers commented positively about components of the intervention such as the systematic instruction and use of videos in the training. Interviews will probe further into what actually happened during implementation and how that relates to social validity. Results will include identified themes in regard to implementation experiences emerging from caregivers interviewed.

Conclusions: In designing interventions, a consumer driven approach is needed in order to truly maximize optimal child and family outcomes. Thus, learning from caregivers what they actually experience implementing interventions would strengthen intervention design and follow through. Key components that were helpful and/or challenging to caregivers will be reported and conclusions will be made based on the themes that emerge from the follow-up interviews and how it relates to social validity.