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      Quality of life among parents of children with heart disease

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          Abstract

          Background

          Quality of life of parents of chronically ill children has become increasingly important as the mortality rates associated with such illnesses have decreased and survival rates have increased.

          Aim

          To describe the Health related quality of life (HRQOL) of parents whose children are suffering from heart diseases and to identify the most important factors that could affect it.

          Methods

          A cross sectional study was conducted in Alexandria, Egypt in the two main hospitals that treat children with heart diseases. 400 parents of children with heart diseases were recruited and a comparison group (400) of parents of children with minor illnesses were included from both hospitals. Socioeconomic and disease related data were collected, SF36 was used to collect data regarding the QOL. MANOVA was used to compare the SF-36 scores between groups and to explore the impact of different variables.

          Results

          In all SF-36 subscales, parents of children with heart diseases reported significantly poorer HRQOL, except for pain subscale. The most striking differences were for General Health, Vitality and role limitation physical. Factors that had a significant impact of HRQOL were severity of illness, type of heart disease in addition to age of child, having multiple children, financial situation and presence of comorbid condition. The mean scores for different domains were the lowest for younger age, rheumatic heart disease and female children.

          Conclusion

          QOL of parents of children with heart diseases was significantly impaired and it was influenced by several factors; mainly related to the clinical status of the child. Psychological status, social support and reassurance of the parents should be considered when making treatment decision for their children.

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          Most cited references23

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          The proxy problem: child report versus parent report in health-related quality of life research.

          This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8-11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p < 0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p < 0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.
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            Incidence of congenital heart disease: I. Postnatal incidence.

            The incidence of congenital heart disease (CHD) in the Western industrialized world has varied from a low value of about 3 to 5 per 1000 live births to about 12 per 1000 live births. Most of the lower incidence figures were obtained before there were sufficiently well trained pediatric cardiologists and before the success of cardiac surgery put a premium on early and correct diagnosis of CHD. The advent of echocardiography with Doppler color flow measurements has made it possible to diagnose lesions that are asymptomatic, minor, and even without murmurs. Given these differences, there does not appear to have been a significant increase in the incidence of CHD over the last 20-30 years. The incidence of CHD in underdeveloped countries is not known, but the distribution of different lesions is fairly similar to those in developed countries except perhaps for fewer with aortic stenosis and coarctation of the aorta.
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              Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support.

              L Dyson (1997)
              Thirty pairs of fathers and mothers who had school-age children with mental retardation and other disabilities were compared with each other and with 32 father and mother pairs of parents of children without disabilities. Responses to family scales indicated that fathers and mothers of children with developmental disabilities did not differ from each other nor from fathers and mothers of children without disabilities in parental stress, family social support, or family functioning. However, parents of children with disabilities experienced a disproportionately greater level of stress relating to their children than did those of children without disabilities. Fathers' and mothers' stress was associated with aspects of family functioning as perceived by themselves and their spouses.
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                Author and article information

                Journal
                Health Qual Life Outcomes
                Health and Quality of Life Outcomes
                BioMed Central
                1477-7525
                2008
                3 November 2008
                : 6
                : 91
                Affiliations
                [1 ]Epidemiology Department, High Institute of Public Health, Alexandria University, Alexandria, Egypt
                [2 ]Pediatric Department, Faculty of Medicine, Alexandria University, Alexandria, Egypt
                [3 ]Mental Health Department, High Institute of Public Health, Alexandria University, Alexandria, Egypt
                [4 ]Fellow of Epidemiology, High Institute of Public Health, Alexandria University, Alexandria, Egypt
                Article
                1477-7525-6-91
                10.1186/1477-7525-6-91
                2590598
                18980676
                5c6d7900-209a-4d53-af96-8260142f3ab7
                Copyright © 2008 Arafa et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 8 January 2008
                : 3 November 2008
                Categories
                Research

                Health & Social care
                Health & Social care

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