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Abstract
Good QOL encompasses more than just good health. At a basic level, it can represent the sum of a person’s physical, emotional, social, occupational, and spiritual well-being.
However, with childhood illness the family and particularly the primary caregivers may face a considerable burden. For that, QOL of these patients and their families is increasingly considered a major medical outcome.
Aims of the study
Studying QOL of parents of the children with heart disease and identifying the most important factors which could affect the QOL of the parents whose children are suffering from heart disease.
Phases of the study
A- Preparatory phase
During this phase translation of the study tool (SF-36) was performed, its reliability was tested and the pre-designed structured interview questionnaires were constructed.
Then, a letter from the High Institute of Public Health to the director of the Student’s Health Insurance Hospital of Alexandria was obtained with the aim of obtaining his permission to interview parents who visit the heart, E.N.T and surgery clinics with their children to collect the required data and to fill the pre-designed questionnaires.
Collecting data from parents who attending the University Children’s Hospital (El-Shatby) did not indicate obtaining a letter from its director in order to fill the designated questionnaires.
The pilot study was carried out in the heart clinic of the University Children’s Hospital (El-Shatby) on 20 parents of children with heart disease to assess reliability of the instrument, testing-retesting with time interval of 2 weeks was applied on a sample of 20 parents.