An mHealth, patient engagement approach to understand and address parents' mental health and caregiving needs after prenatal diagnosis of critical congenital heart disease

Abstract

ObjectiveTo provide an overview of the development of the Preparing Heart and Mind™ (PHM™) care program designed for parents with a prenatal diagnosis of critical congenital heart disease (CCHD) and describe issues of parental concern, caregiving competencies, and type and timing of PHM™ topics. MethodsGuided participation theory underpinned intervention development and a mixed methods pilot of a novel, nurse-guided mHealth intervention. Parents were enrolled from the third trimester of pregnancy–12 weeks postnatally. Online surveys, session transcripts, and app use were descriptively analyzed. ResultsThe sample included 19 mothers/birthing persons and 15 caregiving partners randomized to the intervention group. In 49 sessions, mental health/wellbeing (94%) and condition-specific information (86%) were top issues. Many caregiving competencies were developed, with mothers/birthing persons often focused on feeding (86%). Regulating emotions and co-parenting consistently needed support. PHM™ topics of preparing for hospitalization (47%) and handling uncertainty (45%) were most discussed. Two cases further characterize findings. ConclusionNurse-parent collaborative understanding of issues emphasized the need for mental health assessments. Prenatal intervention opportunities were underscored through discussions of caregiving issues and PHM™ topics. InnovationPHM™ represents an innovative approach that holds promise for supporting parents' mental health and caregiving needs outside the healthcare setting.