Financial Stressors for Parents of Children and Emerging Adults With Congenital Heart Disease: A Qualitative Study.

INTRODUCTION: Congenital heart disease (CHD) is the most prevalent congenital disability globally. This study aimed to describe parents' perspectives on financial stressors related to having a child with CHD using a descriptive qualitative approach. METHOD: Qualitative data were obtained from parents of children with CHD in a cross-sectional web-based survey study. Iterative data analysis was used to develop essential themes that enabled a rich description of 147 parents' perspectives. RESULTS: Parents identified five financial stressors: perpetual worries about health insurance, facing the dilemma of "making too much money," struggling to balance work, worrying over having an emerging adult with CHD, and constant constraints because of financial needs. DISCUSSION: As experts in pediatric care, pediatric advanced practice providers need to work with policymakers to provide further financial assistance and sufficient insurance coverage for families that struggle to balance finances for the whole family and children with CHD.

The associations between resilience and socio-demographic factors in parents who care for their children with congenital heart disease.

Objective: To examine the resilience of parents of children with congenital heart disease and to investigate socio-demographic factors that may influence parents' resilience. Methods: This is a web-based survey study using a cross-sectional design. A purposive sampling method was utilized to recruit 515 parents who care for children with congenital heart disease. Resilience was assessed using the Dispositional Resilience Scale-Ⅱ. Based on expert-interviews, a questionnaire was designed to collect socio-demographic data. Descriptive statistics, factor analysis, and linear regressions were used to analyze data. Results: A total of 413 parents completed the survey study. The mean resilience score was 3.75 (SD = 0.61; range = 1.89-4.89) with higher scores indicating higher resilience. The linear regression models demonstrated that parents who had lower education levels and lower gross household income had lower resilience (P < 0.05). Conclusions: Parents reported resilience that reflected their ability to cope with stressful events and mitigate stressors associated with having and caring for children with congenital heart disease. Lower education levels and lower gross household income are associated with lower resilience. To increase parents' resilience, nursing practice and nurse-led interventions should target screening and providing support for parents at-risk for lower resilience. As lower education level and financial hardship are factors that are difficult to modify through personal efforts, charitable foundations, federal and state governments should consider programs that would provide financial and health literacy support for parents at-risk for lower resilience.

Parents' Perceptions of Emerging Adults With Congenital Heart Disease: An Integrative Review of Qualitative Studies.

BACKGROUND: As the primary caregivers for children with congenital heart disease (CHD), parents' perceptions are important for emerging adults to achieve independence. This integrative review of qualitative studies aimed to describe parents' perceptions of emerging adults with CHD. METHOD: Seven electronic databases were searched. Data extraction and quality assessment were performed. A meta-synthesis was conducted to inductively develop essential themes from five included studies. RESULTS: Three essential themes encompassing the parents' perspective of emerging adults with CHD were: (1) concerns about emerging adults' ability to be independent; (2) concerns about emerging adults' future; and (3) impact of disease on family. The themes depicted parents' concerns and worries about their children's ability to successfully achieve independence, especially in disease self-management and life goals. DISCUSSION: This review highlights parents' concerns about their emerging adult children's independence. Understanding these concerns allows for developing interventions to facilitate emerging adults' independence and ease parents' worries.

Alternative approach to pediatric cardiac quality assessment for low-volume centers.

BACKGROUND: In pediatric cardiac care, many centers participate in multiple, national, domain-specific registries, as a major component of their quality assessment and improvement efforts. Small cardiac programs, whose clinical activities and scale may not be well-suited to this approach, need alternative methods to assess and track quality. METHODS: We conceived of and piloted a rapid-approach cardiac quality assessment, intended to encompass multiple aspects of the service line, in a low-volume program. The assessment incorporated previously identified measures, drawn from multiple sources, and ultimately relied on retrospective chart review. RESULTS: A collaborative, multidisciplinary team formed and came to consensus on quality metrics pertaining to 3 chosen areas of clinical activity in the program. Despite the use of multiple different data sources and the need for manual chart review in data collection, a rich assessment of these program components was completed for presentation in 6 weeks. CONCLUSIONS: While small programs may not participate in the spectrum of cardiac care registries available, these same centers can benefit from them by adapting some of their validated metrics for use in internal, self-maintained quality reports. Our pilot of this alternative approach revealed opportunities for improved quality assessment practices; the product can serve as a baseline for future prospective assessment and reporting, as well as longitudinal internal benchmarking.