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

Abstract

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.