Assessment of Caregiver Burden and Burnout in Pediatric Palliative Care: A Path Toward Improving Children’s Well-Being

TL;DR

This study explores how caring for children with serious illnesses affects caregivers, finding that complex medical needs and lower income increase stress and burnout.

Contribution

The study identifies specific factors like medical device use and income that correlate with caregiver burden and burnout in pediatric palliative care.

Findings

Use of nasogastric tubes and multiple medical devices correlates with higher caregiver burnout.

Lower income is significantly linked to higher care burden.

Longer caregiving duration increases both burden and burnout.

Abstract

Pediatric palliative care (PPC) is an evolving field that focuses on supporting children with life-limiting conditions, where the quality of care is vital. This study is a retrospective observational investigation that examines the experiences of caregivers to inform health and social service planning and enhance PPC quality. Methods: Data of pediatric patients aged 3 months to 18 years admitted to a PPC inpatient unit over two years were retrospectively reviewed. Sociodemographic characteristics of primary caregivers, including age, gender, number of siblings, education, income, occupation, and marital status, were recorded. Caregiver burden and burnout were assessed using the Zarit Burden Interview and the Maslach Burnout Inventory, respectively. Associations between caregiver characteristics and these measures were analyzed. Results: A total of 118 patients and caregivers were evaluated; 54.2% of patients were male. The most common diagnoses were neurological diseases (44.9%), followed by syndromic–genetic disorders (28.8%). About 34% of patients required more than three medical devices. Most caregivers were female (91.5%), mainly mothers and 53% had only primary education. No significant differences in care burden or burnout were found based on caregiver gender, marital status, or child’s diagnosis. However, the use of nasogastric tubes and multiple medical devices was associated with higher burnout. Lower income was significantly linked to higher care burden, while longer caregiving duration correlated with both increased burden and burnout. A moderate positive correlation was found between Zarit and Maslach scores. Conclusions: The complexity of PPC patients’ care increases caregiver burden and burnout. Expanding specialized PPC services is crucial to support caregivers and sustain home-based care.