Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale.

Abstract

Families caring for children with congenital cardiac malformations under conservative management frequently experience psychological distress, which can compromise their overall quality of life (QoL). Despite growing recognition of the psychosocial burdens these families face, few studies have quantitatively assessed their QoL and stress-related outcomes. We aimed to evaluate the QoL, perceived stress, and parental burnout in caregivers of pediatric patients with cardiac malformations under conservative treatment.

Methods: We conducted an observational, cross-sectional study of 78 caregivers (median age of 36 years) whose children (median age was 6.0 months) received conservative management for congenital cardiac malformations. Data were collected at two time points (diagnosis of congenital disease approximately at the time of birth, and six months after diagnosis) using the 36-Item Short Form Health Survey (SF-36), the Perceived Stress Scale (PSS), and the Parental Burnout Assessment (PBA). Statistical analyses included paired t-tests, chi-square tests, and Pearson correlation analyses; p-values < 0.05 were considered statistically significant.

Results: Mean SF-36 Physical Component Summary scores significantly increased from 59.7 ± 11.7 at baseline to 63.5 ± 12.1 at six months (p = 0.026). PSS scores decreased from 22.9 ± 6.2 to 20.4 ± 5.9 (p = 0.012), indicating reduced perceived stress. Parental Burnout Assessment total scores also declined from 44.9 ± 8.5 to 40.1 ± 8.0 (p = 0.003). Correlation analyses revealed moderate negative correlations between SF-36 domains and both PSS (r range: -0.40 to -0.58) and PBA (r range: -0.34 to -0.52).

Conclusions: Our findings highlight the multifaceted challenges faced by caregivers of children with cardiac malformations under conservative treatment. Improvements in QoL, accompanied by decreased perceived stress and parental burnout over six months, underscore the potential value of both clinical monitoring and targeted psychosocial support. Future research should explore larger, multicenter cohorts and longer follow-up durations to clarify long-term trends. Implementing interventions aimed at alleviating stress and burnout in these families may be pivotal for sustaining well-being and enhancing patient outcome.