Assessment of Caregiver Burden Amongst Parents of Children With Congenital Heart Disease in Two Tertiary Hospitals in Nigeria: A Cross- Sectional Study

Why It Matters

The findings expose a hidden, high‑cost emotional and financial toll on families in low‑resource settings, signaling urgent need for policy and health‑system interventions to sustain CHD treatment outcomes.

Key Takeaways

• 41% moderate, 26% severe caregiver burden reported.
• Emotional stress scored highest among burden domains.
• 96% of families rely on out‑of‑pocket payments.
• No demographic factors predicted burden levels.
• Psychosocial and financial support essential for CHD care.

Pulse Analysis

Congenital heart disease remains a leading cause of pediatric morbidity worldwide, yet the burden on caregivers—particularly in low‑ and middle‑income countries—receives limited attention. In Nigeria, where health insurance coverage is sparse, families shoulder the full cost of diagnostics, surgeries, and long‑term follow‑up. This financial reality compounds the emotional strain of caring for a child with a chronic, life‑threatening condition, creating a dual pressure that can affect treatment adherence and overall family wellbeing.

The study surveyed 100 caregivers, predominantly mothers aged 31‑40, revealing that emotional and psychological distress topped the burden scales, with an average score of 13.4 out of a possible higher range. Financial strain followed closely, reflecting the 96% reliance on out‑of‑pocket expenditures. Interestingly, traditional predictors such as caregiver age, education, or child disease severity did not correlate with burden intensity, suggesting that the sheer cost and emotional weight are pervasive across demographic groups.

These insights underscore the necessity for integrated care models that embed psychosocial counseling and financial risk‑pooling mechanisms into CHD treatment pathways. Policymakers and hospital administrators should explore community‑based insurance schemes, subsidized medication programs, and dedicated mental‑health services for families. By alleviating both the monetary and emotional pressures, health systems can improve adherence, reduce complications, and ultimately enhance survival rates for children with congenital heart disease.