Att vara förälder till ett barn med medfött hjärtfel
en litteraturstudie
Introduction : Structural cardiac malformations affects 0.8-1% of children born worldwide, in Sweden 800-1000 children per year. Most children with congenital heart disease and their families will have frequent and lifelong contact with highly specialized care. Awareness of the parents experience is crucial in order to improve the nursing care. These experiences will be illustrated using a theoretical model of family-based nursing. Aim: The aim of this study was to describe experiences of being a parent to a child with a congenital heart disease. Method:A review of the literature was undertaken using systematic review principles. The search strategy included four electronic bibliographic databases, using the search terms experience, heart defects congenital, heart disease congenital, parent, parents and arenting. Nine studies focused on parent's experience. Seven used solely qualitative methodology and two studies used mixed methods. The analysis was performed and guided by qualitative content analysis. Results: Analysis of the nine studies on parents experience revealed two categories and six subcategories. The categories were: "feelings and need at the time of diagnosis" and "the time at home". Parents of children with congenital heart disease needed support from both health care and from their own social network. Their need was greatest at the time of diagnosis and surgery. Gradually everyday life stabilised. The result shows the parent's experience of anxiety and stress as a common path through the entire process. In time, the parents started to use different coping strategies to handle the situation. Conclusion: Nurses who meet parents of children with congenital heart disease should be aware of the need for repeated information, both oral and written. It is also important to provide information to siblings and relatives. Though familyfocused care the nurse can support parents in their parenting role and also include siblings. Sufficient information leads to better coping and parents feel more comfortable to take care of the sick child and their family.