Indirect costs associated with "free" paediatric haemodialysis: Experience from Karachi, Pakistan

Area of Science:

• Pediatric Nephrology
• Public Health
• Family Medicine

Background:

• End-stage kidney disease (ESKD) treatment for children, particularly maintenance dialysis, presents unique challenges in low- and middle-income countries.
• Lifelong treatment imposes substantial financial, social, and psychological burdens on families, despite the provision of free medical services.
• Healthcare professionals in developing nations encounter ethical dilemmas when offering pediatric dialysis due to the profound impact on families.

Purpose of the Study:

• To investigate the multifaceted consequences of long-term pediatric haemodialysis on families in a developing country context.
• To quantify the financial, social, and psychological impact on caretakers and the wider family unit.
• To explore the ethical considerations for healthcare providers offering free pediatric dialysis services.

Main Methods:

• A pilot study employing primarily quantitative methods, supplemented by two qualitative case studies.
• Inclusion of 52 caretakers of children undergoing haemodialysis for over five years in the quantitative arm.
• Data collection focused on financial strain, social disruptions, and psychological well-being of caretakers.

Main Results:

• Significant financial challenges were identified, potentially leading to household financial catastrophe.
• Social problems included migration, negative impacts on the education of the affected child and siblings.
• One-third of primary caretakers screened positive for anxiety or depression.

Conclusions:

• Pediatric dialysis in resource-limited settings creates severe, multifaceted burdens for families, extending beyond medical costs.
• The study highlights the critical need for comprehensive support systems for families managing childhood ESKD.
• Ethical practice in providing "free" services requires acknowledging and addressing the extensive non-medical challenges faced by these families.