Queens of hearts: Exploring the lived experiences of mothers caring for infants with complex congenital heart disease in Sri Lanka

J Health Psychol. 2024 Feb 22:13591053241233382. doi: 10.1177/13591053241233382. Online ahead of print.

Abstract

This qualitative study explored the lived experiences of eight Sri Lankan mothers of infants with complex congenital heart disease (CCHD) using semi-structured interviews. Four themes were generated as: illness perception, communication with medical staff, challenges faced, and coping mechanisms. These provided insight into the multi-faceted nature of mothers' experiences, importance of medical-caregiver communications and their need for psychosocial services. The findings enhance the limited knowledge of South-Asian primary CCHD caregiver experiences and will help in improving psychosocial support services in Sri Lanka.

Keywords: Caregivers; Sri Lanka; congenital heart disease (CHD); mothers’ experiences; thematic analysis (TA).