Quality of Life of Families with Children Presenting Congenital Heart Disease:Longitudinal Study Protocol.

BACKGROUND: Advances in medicine have caused a notable increase in the survival rates of children born with congenital heart disease, even in the most complicated cases, almost mitigating the disease's pathology from lethal to chronic. The quality of life perceived by such children is influenced by the perceptions of their parents. However, the international literature has rarely considered the entire family nucleus. AIMS: This study aims to study the temporal trend of quality of life of families with children with congenital heart disease, particularly with respect to parents following a child's hospitalization for an invasive procedure. DESIGN: A longitudinal study. METHOD: A sample of families (that is, those including a child with congenital heart disease and their parents) will be enrolled following the patient's discharge from the hospital and examined every 3 months for 1 year. The study's adopted hypothesis is that there is an interdependence between the subjects of the study that is capable of influencing individual perceptions of quality of life. RESULTS: This study will attempt to identify variables (and their temporal trend) that can be attributed to the family unit and-together with physical and clinical variables-that may influence the quality of life of children with congenital heart disease. CONCLUSION: Examining family quality of life with the longitudinal method will allow us to identify the predictors and interdependence of this factor with respect to children and their parents. This will help to correct and elaborate upon care guidelines, providing better assistance to patients and their caregivers.

Cardiac Children's Hospital Early Warning Score: Italian Validation.

BACKGROUND/PURPOSE: The Cardiac Children's Hospital Early Warning Score (C-CHEWS) is an early warning scale used to identify paediatric patients experiencing clinical deterioration which may warrant a transfer to an ICU. However, no studies have tested the C-CHEWS in an Italian paediatric cardiac population. The aims of this study were to translate/back-translate and validate the Italian version of the C-CHEWS and its algorithm. DESIGN AND METHOD: Retrospective study. Sensitivity, specificity, accuracy, positive predictive value, negative predictive value were used to evaluate the performance of C-CHEWS. In additions the Cohen's kappa statistic was calculated to evaluate the agreement between patient's status described by C-CHEWS score (≥5) and actual ICU transfer. RESULTS: High discrimination was observed for sensitivity (81.5%), specificity (99.6%), accuracy (99.7%), positive predictive value (86.7%), and negative predictive value (99.8%). The Cohen's kappa score was observed to be equal to 0.837 (p-value <0.001) indicating there was excellent significant agreement between a C-CHEWS score ≥ 5 and effective evaluation for patients transfer to an ICU. CONCLUSION: The Italian version of the C-CHEWS proved to be a sensitive, specific and reliable tool in the early detection of a physical deterioration of hospitalized paediatric cardiac surgical patients. PRACTICE IMPLICATIONS: This tool may help doctors, nurses and all healthcare professionals to promptly recognize and treat clinical deterioration and facilitate urgent transfers to the PICU.

The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease.

BACKGROUND: Congenital Heart Diseases (CHDs) afflicting children are estimated in 8 per 1000 live births. Recent advances in surgery and medical treatments allowed an improvement in survival rates leading to changes in diseases management as chronic conditions. Parents involvement during clinical pathways is considered an essential component of care, but frequently they experience stress and anxiety conditions during the care path. These feelings are typical of the pre and peri-operative period, however they don't disappear easily and sometimes they can increase after hospital discharge, affecting the family environment and its behaviors. AIM OF THE WORK: The purpose of this qualitative study is to examine the lived experience of parents during the time just after their children return home from hospital after undergoing surgery for CHD. METHODS: Parents were enrolled and interviewed as a prepositive sampling until concept saturation using Cohen's phenomenology approach. A quantitative approach was also applied using SF-12 questionnaire. The study was conducted in two Italian hospitals: the Pediatric Heart Surgery Center of the Fondazione Toscana G. Monasterio Institute in Massa and the Pediatric Cardiac Surgery Center of the Federico II University Hospital in Naples. RESULTS: The main themes emerged after the analysis were "happiness and uncertainty"; "chronic psychophysical fatigue"; "the rediscovery of a strong link with health care professionals". CONCLUSIONS: Fully understand the life experience of these families will allow the implementation of targeted health interventions through the implementation of shared strategies and tools to reduce families and children discomfort after hospital discharge.