Mental health and caregiver burden among caregivers of children with congenital anomalies in urban slums of India: a qualitative inquiry

This study aimed to explore the challenges experienced by caregivers of children with congenital anomalies in urban slum settings and to understand the factors influencing their caregiving experience. A qualitative design was employed, using purposive sampling to recruit twelve caregivers, including parents and close family members. Data were collected through focussed group discussion and in-depth interviews and analysed thematically to identify key patterns in caregiving experiences. Four main themes emerged: (1) parental awareness and denial, (2) expressed emotion and its impact on the child’s well-being, (3) community support, and (4) health system barriers and feelings of helplessness. Limited parental awareness and denial contributed to delays in seeking treatment or incomplete care. High levels of emotional stress were reported, often influenced by family dynamics and caregiving demands. Community support from neighbours and relatives helped mitigate caregiver burden, while insufficient health system responsiveness and policy support heightened feelings of helplessness. The study highlights the need for targeted interventions, including caregiver education, improved access to healthcare and rehabilitation, and strengthened community-based support, to reduce caregiver burden and improve outcomes for children with congenital anomalies.