The Experience of Uncertainty in Mothers Caring for Children at Home after Palliative Heart Surgery

Abstract

Objectives: Palliative heart surgery is a compelling option for some children with congenital heart disease for which corrective heart surgery is not yet possible due to its complexity. As primary caregivers, mothers have the challenge of providing optimal care to their children at home post-surgery. This study aims to explore the experiences of mothers who are caring for children recovering from palliative heart surgery at home. The research applied descriptive, qualitative and phenomenology design. Material and Methods: This study was conducted in Jakarta. The participants were 15 mothers of palliative heart surgery patients from seven provinces in Indonesia; Jakarta, Aceh, Bali, North Sumatra, West Java, Central Java and Banten. Data were collected using semi-structured interviews through the WhatsApp video call application and analysed using the Colaizzi method. Results: Mothers often felt uncertain about how to provide the best care and felt that their needs for hospital services to assist them went unmet. Conclusions: This study has implications for the development of nursing services related to discharge planning for palliative heart surgery patients.