Health and Well-Being of Children with Congenital Cardiac Malformations, and their Families, following Open-Heart Surgery
Référence bibliographique 
Majnemer, Annette, Limperopoulos, Catherine, Shevell, Michael, Rohlicek, Charles, Rosenblatt, Bernard et Tchervenkov, Christo. 2006. «Health and Well-Being of Children with Congenital Cardiac Malformations, and their Families, following Open-Heart Surgery ». Cardiology in the Young, vol. 16, no 2, p. 157-164.
Intentions : « Infants who survive open-heart surgery are at risk for developmental disability, which may impact on the well-being not only of the child, but also the family. The objective of our prospective study, therefore, was to determine the long-term health-related quality of life of children with congenital cardiac malformations following open-heart surgery, and to describe the persisting level of stress in their families. » (p. 157)
Échantillon/Matériau : 49 parents « of young infants with a congenital cardiac malformation admitted for open heart surgery at the Montreal Children’s Hospital. » (p. 158)
Instruments : - Le « Child Health Questionnaire »; - Le « Parenting Stress Index »; - Le « Child Behaviour Checklist ».
Type de traitement des données : Analyse statistique
« Mean scores on the Child Health Questionnaire were in the normal range, with physical well-being equal to 53.5, psychosocial wellbeing 50.9, with only 6.4 percent and 8.5 percent of subjects, respectively, falling within the suboptimal range of less than 40. The distribution of scores on the Parenting Stress Index, however, were more variable, with over one-quarter of parents indicating a high level of stress, with almost one-fifth having low levels of stress, and just over half scoring in the normal range, with the group mean being 52.6 plus or minus 32.3. An abnormal neurologic examination before surgery was associated with lower physical health (b equal to -5.5, p equal to 0.02, r2 equal to 0.18), whereas lower arterial saturations of oxygen, less than 85 percent preoperatively, was associated with lower psychosocial health (b equal to -6.6, p equal to 0.01, and r2 equal to 0.14). The internalizing and externalizing behaviours of the child were significantly correlated with psychosocial well being, with r ranging from -0.32 to -0.52, and p less than 0.05. Parental stress also correlated with psychosocial health (r equal to -0.48 and p equal to 0.0009). Overall, the perception by the parents of the health-related quality of life of their child is favourable 5 years following open-heart surgery during infancy. Many parents, nonetheless, continue to feel either stressed or defensive about their child, particularly if their child exhibits behavioural difficulties. Our findings suggest that strategies need to be considered to enhance family wellbeing in the planning and delivery of health services to this population at high risk. » (p. 157)