Congenital Heart Disease and Families: A Systematic Review of Measures of Impact and Adaptation

Abstract

Background: Families of children with congenital heart disease (CHD) experience significant stress and corresponding risks of poorer mental health, health-related quality of life (HRQOL) and overall family functioning. There is wide variability in the approach to assessment in both clinical and research practice. The aim of this systematic review was to identify and describe measures used to assess the impact and adaptation to CHD in families, and to appraise assessment outcomes. Methods: Adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, two reviewers independently searched and screened five electronic databases (PubMed, CINAHL, PsycINFO, Embase, SCOPUS), along with relevant reference lists and Google Scholar. English-language publications until February 15, 2019, with samples comprising >50% of children with CHD, reporting quantitative data primarily focusing on parent, sibling and family outcomes were included. Results: Of 5,312 articles screened, 76 articles representing 74 unique samples met inclusion criteria. Parenting stress was the most frequently measured construct (22/76), often assessed using the Parenting Stress Index-Short Form (10/22). Parental HRQOL and coping were assessed across 11 and 12 studies, respectively, using 4–5 measures. Sibling impact was assessed in two studies, each using different measures. Family impact and functioning were assessed in 14 studies using 8 measures, including 3 non-validated, study-specific measures. No validated CHD-specific outcome measures were identified. Conclusions: Findings confirm considerable variability in assessment of impact and adaptation to CHD in families. Core recommendations to guide assessments are needed to improve generalizability of outcomes data, intervention evaluation and subsequent understanding of family experiences.L20022348052019-08-01 <br />