Föräldrars upplevelser av att ha ett barn som vårdas i livets slutskede

Abstract

Background: It can be hard for parents with a child in end-of-life care to comprehend that their child´s dying. Many existential questions arise from the parents. Despite increased efforts to improve end-of-life care for children, research into this is sparse. That results in that the needs and wishes of the parents are overlooked. Aim: The aim of the study was to illuminate parents’ experiences of having a child in end-of-life care. Method: A literature review was conducted. Based on studies published in scientific articles findings that responded to the purpose were compiled. This created the result’s four categories. They are discussed in relation to Aaron Antonovsky’s theory of SOC. Results: The results are presented as they relate to parent’s experiences from information and communication, being part of the care of the child, the relationship with staff and parents emotional and spiritual experience. The categories account for parent´s experiences from having a child cared for at the end-of-life. Discussion: SOC is individual and parents' level of SOC affects their ability to manage their children's palliative care. SOC can´t be altered overnight, change occurs over time. The nurse´s assignation is to individualize the help for the parents' capacity for comprehensibility, manageability and meaningfulness.