The original aims of the project were as follows:
Aim 1. To design and refine an interactive platform for parents of infants with congenital heart disease to assist with feeding issues.
Aim 2. To begin an initial evaluation of platform use and understand the impact of the platform on parental stress and feeding management, as measured by:
1) data usage statistics of platform across users
2) caregiver perceptions of family-provider communication and confidence in feeding
3) baseline and follow-up measures of caregiver stress using standardized questionnaires and mobile devices.
We were able to complete the design phase of the interactive platform; however there were significant delays in the programming phase due to contractual issues and changes in personnel at the digital agency. As a result, the scope of the project was altered for the testing phase. Instead, we focused on creating a psychosocial intervention program to deliver to caregivers via telemedicine to promote adjustment to caring for an infant with complex medical needs. We completed the initial testing of the acceptability and feasibility of this program with 24 caregivers with an external grant from the Pediatric Heart Network (Aylward; PI). The PI (Aylward) has submitted a revised K23 Mentored Patient-Oriented Research Career Development Award to evaluate the efficacy of the program on caregiver maladjustment and infant neurodevelopmental outcomes and will receive notice in November 2017.