INTRODUCTION: Congenital heart defects can often be corrected through surgery, providing for parents to expect a normal life, but the hospitalization experience often early, causes more pain, for which surgery is the worst moment. OBJECTIVE: The aim of this study was to analyze the experience of families of children undergoing cardiac surgery and to identify the coping resources used by the families. METHODS: A qualitative approach was the metodology of choice for this study, which took place with six semi-structured interviews and 100 hours of observation. Thematic analysis was used to understand the data. RESULTS: The results were categorized into four themes: feelings and emotions facing the illness of the child; heart disease under the watchful mother, mother and child on the ICU and coping resources. The speech of mothers demonstrated the importance of the heart due to its symbolism that enhances their emotional fragility in the face of illness. Religiosity and a solid social network of support were contributing factors for the maintenance of the adaptive behaviors. The presence of mothers in all stages of the child's treatment contributed to minimizing the suffering generated by hospitalization. CONCLUSION: The experience of families was characterized by ambivalent feelings such as fear of death, guilt and helplessness against the different stages of treatment. The anguish and anxiety prevailed in the face of unknown situations when information were required before therapeutic procedures, hospital routines and the actual life situation of the families.
INTRODUCTION:Congenital heart defects can often be corrected through surgery, providing for parents to expect a normal life, but the hospitalization experience often early, causes more pain, for which surgery is the worst moment. OBJECTIVE: The aim of this study was to analyze the experience of families of children undergoing cardiac surgery and to identify the coping resources used by the families. METHODS: A qualitative approach was the metodology of choice for this study, which took place with six semi-structured interviews and 100 hours of observation. Thematic analysis was used to understand the data. RESULTS: The results were categorized into four themes: feelings and emotions facing the illness of the child; heart disease under the watchful mother, mother and child on the ICU and coping resources. The speech of mothers demonstrated the importance of the heart due to its symbolism that enhances their emotional fragility in the face of illness. Religiosity and a solid social network of support were contributing factors for the maintenance of the adaptive behaviors. The presence of mothers in all stages of the child's treatment contributed to minimizing the suffering generated by hospitalization. CONCLUSION: The experience of families was characterized by ambivalent feelings such as fear of death, guilt and helplessness against the different stages of treatment. The anguish and anxiety prevailed in the face of unknown situations when information were required before therapeutic procedures, hospital routines and the actual life situation of the families.
Authors: Marjorie A C P de Man; Elisabeth W Segers; Renske Schappin; Kees van der Leeden; Roelie M Wösten-van Asperen; Hans Breur; Carolina de Weerth; Agnes van den Hoogen Journal: Acta Paediatr Date: 2021-01-13 Impact factor: 2.299