Silvio Simeone1, Gianluca Pucciarelli2, Marco Perrone1, Grazia Dell Angelo1, Rea Teresa3, Assunta Guillari3, Gianpaolo Gargiulo4, Giuseppe Comentale4, Gaetano Palma4. 1. Department of Cardiology, Cardiac Surgery and Emergency, University of Naples Federico II, Naples, Italy. 2. Department of Biomedicine and Prevention, University of Rome Tor Vergata, Rome, Italy. Electronic address: g.pucciarelli81@gmail.com. 3. Department of Hygiene, University of Naples Federico II, Naples, Italy. 4. Pediatric Cardiac Surgery, University of Naples Federico II, Naples, Italy.
Abstract
BACKGROUND: Congenital heart disease is a common birth defect rather than a paediatric disease. Parents often discover this disease after their children's birth and then often learn that cardiac surgery is the only solution. A child's admission to a paediatric cardiac intensive care unit (PCICU) may lead to high levels of stress, anxiety and depression in parents. OBJECTIVES: To describe the lived experiences of mothers and fathers during their children's confinement in a PCICU. METHODS: A phenomenological study was conducted. This method combines descriptive features (Husserlian) and interpretive phenomenology (Gadamerian). The subjects were interviewed with open questions to allow them full freedom of expression and were asked to describe their experiences when their children were admitted to the PCICU. Each interview was audio-recorded and lasted between 20 and 60 minutes. The researchers involved in the analysis each independently immersed themselves in the data by reading and re-reading the transcripts in order to gain a sense of the whole dataset. The extrapolation of the themes followed. The individual researchers compared the various extrapolated themes. RESULTS: We enrolled 16 participants. Three main themes emerged: 1) the fear of the potential loss of their children, (2) the feeling of having lost their roles as parents and (3) the desire to receive more information and be an active part of the treatment process. CONCLUSION: A child's admission to a PCICU requires healthcare staff to take care of the child's family members as well. Knowing about mothers' and fathers' experiences is crucial in implementing a holistic and multidisciplinary process of care.
BACKGROUND:Congenital heart disease is a common birth defect rather than a paediatric disease. Parents often discover this disease after their children's birth and then often learn that cardiac surgery is the only solution. A child's admission to a paediatric cardiac intensive care unit (PCICU) may lead to high levels of stress, anxiety and depression in parents. OBJECTIVES: To describe the lived experiences of mothers and fathers during their children's confinement in a PCICU. METHODS: A phenomenological study was conducted. This method combines descriptive features (Husserlian) and interpretive phenomenology (Gadamerian). The subjects were interviewed with open questions to allow them full freedom of expression and were asked to describe their experiences when their children were admitted to the PCICU. Each interview was audio-recorded and lasted between 20 and 60 minutes. The researchers involved in the analysis each independently immersed themselves in the data by reading and re-reading the transcripts in order to gain a sense of the whole dataset. The extrapolation of the themes followed. The individual researchers compared the various extrapolated themes. RESULTS: We enrolled 16 participants. Three main themes emerged: 1) the fear of the potential loss of their children, (2) the feeling of having lost their roles as parents and (3) the desire to receive more information and be an active part of the treatment process. CONCLUSION: A child's admission to a PCICU requires healthcare staff to take care of the child's family members as well. Knowing about mothers' and fathers' experiences is crucial in implementing a holistic and multidisciplinary process of care.
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