Grow In Adaptation: Family Caregivers' Experiences Of Caring For Neonates Undergoing Enterostomy In China—A Qualitative Study

Abstract

Background: More than 100,000 neonates undergo enterostomy every year in China, and the incidence continues to increase gradually. Most neonates undergoing enterostomy are cared for by family after hospital discharge. However, there is a lack of qualitative studies on family caregivers’ experiences in caring for neonates undergoing enterostomy in China.Method: An explorative design was used in which qualitative semi-structured interviews with family caregivers were conducted. Family caregivers were selected using a purposive sampling method from a children’s hospital until no new data were generated (n = 26). Reporting adhered to the consolidated criteria for reporting qualitative research checklist.Results: The experience of family caregivers was described as growing in adaptation, where five main themes emerged: (1) complex emotional responses; (2) uncertainty about everything; (3) lack of confidence, anxiety, and helplessness; (4) eagerness for professional support; (5) active adaptation, harvest, and growth.Conclusion: These findings increased understanding and added knowledge on this topic that is rarely studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers (whose neonates undergo enterostomy) to better identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers caring for neonates undergoing enterostomy and maintaining the quality of their own lives.