Purpose: Children with physical disabilities associated with spina bifida and cerebral palsy face multiple challenges due to early physical and cognitive difficulties that impact their learning and later academic performance and independence. Parents of these children have the greatest potential for influencing their development due to the number of opportunities they have to interact with their children. However, the field of early intervention often fails to engage parents as active and primary mediators of the developmental services their children receive. Parenting interventions have included teaching responsiveness strategies resulting in improved child development/learning outcomes, or motor support strategies resulting in improved motor learning and development, but rarely are the two types of interventions combined.

This study will investigate whether an integrated parent responsiveness and motor support intervention that targets the specific motor, attention, and organization deficits among infants with physical disabilities results in greater improvements in core skills (attention, motor learning, contingency learning, and goal directed play) and outcomes (cognition, language, social and emotional competence, and motor performance) compared to an intervention that focuses on responsiveness only and a control group receiving developmental information.

Project Activities: The researchers will conduct a randomized controlled trial that compares three conditions: (1) an intervention that integrates a responsiveness program with research-based motor support behaviors, called Playing and Learning Strategies to Enable Children with Motor Difficulties (PALS-Enable); (2) a responsiveness intervention, Playing and Learning Strategies (PALS) only; and (3) an attention control condition that provides developmental information only. The research team will recruit 180 infants, 12 to 18 months of age, with physical disabilities related to spina bifida and cerebral palsy. Four assessments (pre-intervention, midpoint, post-intervention, and follow-up) of parent responsiveness behaviors and child core skills and developmental outcomes will be examined to determine intervention effectiveness.

Products: The products of this project include evidence of the efficacy of the PALS-Enable and PALS interventions targeted towards children with disabilities due to spina bifida and cerebral palsy, and published reports and presentations.

Structured Abstract

Setting: This study will be conducted in participants' homes in Texas.

Sample: The sample will include 180 infants between the ages of 12 to 18 months with a physical delay related to a diagnosis of spina bifida or cerebral palsy.

Intervention: Both PALS and PALS-Enable use coaches to provide guidance to parents in four specific areas that have been linked to promoting school readiness in at-risk children: (1) maintaining vs. redirecting children's focus and interests; (2) contingent responsiveness (child sends a signal, the caregiver responds, thus providing the child a positive outcome); (3) providing rich language input; and (4) behaving in a warm and sensitive response style. In addition, PALS-Enable provides support for a child's motor limitations (e.g., adapting the environment and using strategies to encourage movement and ease exploration). In this study, the intervention will be delivered once a week for 14 weeks. In each session, the coach describes the targeted behavior, shows videos of parents demonstrating the behavior, has the parent practice using videos and self-critique, and helps parents plan to integrate the target behavior into activities for the coming week. Parents report on their experiences working with the target behaviors in the subsequent sessions and receive feedback.

Research Design and Methods: The research team will conduct a randomized controlled trial with random assignment of infants to one of three conditions: PALS-Enable, PALS, or developmental information only. There will be a total of 180 caregiver-child pairs involved in this study in 10 waves (18 pairs recruited for each wave). Infants will be stratified by diagnosis and randomly assigned to one of the three conditions, totaling 60 in each group. Assessments of parent behavior and child skills and developmental outcomes will be conducted at four time points: pre-intervention, midpoint (i.e., at the end of the seventh session), post-intervention, and at 3-months post-intervention.

Control Condition: The control condition in this study will serve as an attention control to ensure that intervention effects are not due to increased attention to the parents, or provision of general information about infant development. Specifically, in this condition researchers will conduct simple developmental screening activities with the non-intervention control children to give caregivers information about developmental expectations, tailored for parents of infants with spina bifida and cerebral palsy. Parents will receive developmental information in the mail along with a phone call contact once a week for 14 weeks.

Key Measures: Multiple measures, including observations and standardized tests, will be used to assess child outcomes and core skills. Parent observations and assessments will address changes in parent behavior, emotional well-being, and social support. Fidelity of implementation of coaching sessions will be assessed through checklists completed by independent observers. Fidelity of parents' implementation of the intervention will be assessed using multiple methods, including rating scales completed by the coach, parent demonstration of competencies learned through the intervention, and parent responses to questions at the end of each session.

Data Analytic Strategy: Child and parent outcomes will be analyzed using growth curve analyses.