Disability and caregiver burden: Unique challenges in a developing country

Area of Science:

• Pediatric neurology
• Caregiver research
• Disability studies

Background:

• Cerebral palsy (CP) significantly impacts families globally.
• Understanding caregiver burden is crucial for effective support systems.
• Sri Lanka faces unique challenges in managing CP care.

Purpose of the Study:

• To identify factors contributing to caregiver burden in raising children with cerebral palsy (CP) in Sri Lanka.
• To assess the influence of disability severity on caregiver burden.
• To inform targeted psychosocial support strategies for families affected by CP.

Main Methods:

• A cross-sectional study involving 163 caregivers of children with CP in Sri Lanka.
• Utilized the locally validated Caregiver Difficulties Scale (CDS).
• Assessed disability using the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS).

Main Results:

• A high prevalence of caregiver burden was observed (81.2% moderate to high).
• Significant correlations found between caregiver burden and GMFCS, MACS, medical co-morbidities, and number of children.
• GMFCS level and number of children were independent predictors of caregiver burden.

Conclusions:

• Raising a child with CP in Sri Lanka is associated with substantial caregiver burden.
• High disability levels (GMFCS) and multiple children are key risk factors.
• Routine monitoring of caregiver burden is essential for timely psychosocial interventions.