Influences Of Social Determinants Of Health And Parental Participation In Hospital Care On Development Of Parenting Confidence Among Parents Of Children With A Congenital Heart Defect

Duke University, Durham NC

Investigators

Abstract

PROJECT ABSTRACT. Despite significant advancements in treatment of children diagnosed with congenital heart defects (CHD), outcomes are inconsistent across the US. Studies have demonstrated that Parental Participation (PP), the act of parents’ performing caregiving activities for their hospitalized child, is pivotal in reducing complication and mortality in children with CHD. PP includes typical parent activities (e.g., comforting, diapering) and healthcare activities (e.g., medication administration, decision making). PP directly contributes to development of parenting confidence (PC), and leads to positive short and long-term outcomes for children and parents. Further research is needed to understand the mechanisms by which PP influences PC development. Each family’s unique life circumstances can positively or negatively impact PP. Factors which affect health, and by extension PP, include family structure, resources (income, insurance, access to transportation), and healthcare environment experiences. Despite the demonstrated benefits of PP and PC, there is paucity of research on the impact of family structure and resources on PP and PC in CHD care. A more nuanced understanding of individual factors is desperately needed to discern the ways unique family structure and external factors influence PP and PC in the CHD population. This mixed methods study seeks to examine the relationships among family structure, resources, PP and PC in CHD care among parents of children with CHD (n=110). The aims are to: Aim 1. Examine the influence of family structure, resources (income, insurance, access to transportation), and interpersonal experiences with providers in in the healthcare environment (HEE), and PP on PC using structural equation modeling (SEM) of data obtained via cross-sectional survey. Aim 2: Describe parental perceptions of how family structure, resources, HEE and PP affect development of PC in caring for their child with CHD using content analysis of narrative interviews among a group of parents purposively subsampled to encompass differing levels of PP and PC. Aim 3. Construct a comprehensive model of PP and PC, including the influence of resources, in a representative population of US parents using mixed methods integration of data from Aims 1 and 2. Without a more complete understanding of the impact that family resources and HEE have on PP and PC in CHD, creation of targeted interventions will fail to meet families’ individualized needs. Results from the proposed study will be foundational to informing explorations of: (1) additional influences on PP and PC in CHD care, (2) children’s perceptions of PP, and (3) creation of multi-level family support interventions to enhance PP in pediatric hospital care.