Parents’ experiences when their children are cared for in the final stage of life

Background: Palliative care means care at the final stages of life, where the patient must receive the best possible care for reduced suffering and increased well-being until death. Palliative care of children means complete care of the child and the family. The parents get greater responsibility when it comes to decision-making when the child is a minor. Aim: The aim was to describe parents' experiences of when their children are being cared for palliatively. Method: A literature-based study in which qualitative articles were analyzed. Systematic searches were performed in the databases Cinahl and Apa-Psyc Info. Articles about parents who had children under the age of 18 and were cared for palliatively were included. The study was based on 10 articles. Results: The result showed various experiences and feelings, both positive and negative. Three different themes emerged: a new parenting role, caring for their child together and daring to let go. The themes included to live a parental life, about responsibility and participation and a fear of the future but also to ignore oneself, feel involuntary loneliness and hover between hope and inadequacy. Finally, not to give up, to lose a child and dare to look ahead Conclusion: Palliative care of children is something that arouses many emotions in affected parents, such as fear, inadequacy, anxiety, and a feeling of exclusion from society. Home healthcare was appreciated because it enabled to continue living as a family. Through support from nurses, parents experienced relief and safety during the child's palliative care.