Att överleva sitt barn och fortsätta leva : En litteraturstudie om föräldrars erfarenheter av vård av deras palliativt sjuka barn

Sammanfattning: Background: Every year, 480 families in Sweden are informed that their child is diagnosed with an incurable disease. Everyone involved is affected by the death of a child. When a familymember becomes incurably ill it affects the entire family. The family's commitment is vital in pediatric care, as the family is the child's greatest source of security. It is of great importance that the nurse who works in palliative care, has to be person oriented and family centered to meet the needs of the whole family. Aim: The aim of this study was to highlight parents’ experiences of having a child in palliative care. Method: A literature study based on 11 qualitative articles is performed. The analysis of these articles resulted in three main themes and seven sub themes. Results: Parents wanted, as far as possible, to be involved in their child’s care. They perceived a high quality of care when the care was provided with continuity and when a trustful relationship was created. A sense of security was experienced when the staff were compassionate and were able to take care of the whole family. The family also strived for a sense of normality in family life. Conclusion: Parents experienced that they were in an increased need of support from healthcare both during the palliative process but also after death. It was supportive and appreciated when the nurse encouraged the parents to take a more active role in their child’s care.