Appraising Measures Assessing the Psychosocial Impact and Adaptation to Congenital Heart Disease in Families: A Systematic Review

Abstract

Background: Families of children with complex congenital heart disease (CHD) report significant psychological distress and disruption to family functioning; however, there is no consensus regarding how best to assess these outcomes. This systematic review aimed to identify measures used to quantitatively assess the psychosocial impact of, and adaptation to, CHD in families and to describe usability characteristics and psychometric properties. Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline was followed. Two reviewers independently screened five electronic databases and relevant reference lists. Peer-reviewed, English-language publications until August 7, 2019 were included if samples comprised ≥50% of children with CHD and reported quantitative data on psychosocial impact and adaptation for mothers, fathers, siblings, and/or the family unit. Results: Of 5,339 records captured, 77 studies representing 68 unique samples met inclusion criteria. Parental depression and anxiety were most frequently assessed (37/68 samples, 11 measures), followed by family impact and functioning (20/68, 9 measures), health-related quality of life (14/68, 7 measures), and coping (13/68, 6 measures). Almost all measures captured self-report data (59/60). The average completion time was 9 mins, ranging from 2 to 30 mins. One-third (28/77 studies) reported reliability data across 24 measures, with Cronbach’s alpha ≥0.70 in all studies. Conclusions: Findings demonstrate considerable variability in measures assessing the psychosocial impact of, and adaptation to, CHD in families. This systematic review is novel in highlighting the need for core recommendations to guide assessments for improving generalisability of outcomes data collection, intervention evaluation, and subsequent understanding of family experiences.L20085029272020-12-09 <br />