Quality of Life in Families of Children with Congenital Heart Disease

Abstract

Within a family perspective on quality of life (QL) with congenital heart disease, the study investigates parental QL, and patients' health-related QL as reported by themselves and by their parents. We examined the hypotheses that parental QL moderates the parental proxy reports. Sixty-nine patients (7-20 years, 61% male) and their caregivers participated in a computer-assisted QL-assessment. Children's self-rated and proxy-rated QL correlated moderately, with the highest intra-class correlation on the subscale psychological well-being/functioning (r = 0.61; p < 0.001), less convergence in physical well-being/functioning (r = 0.49; p < 0.001) and absent correlation in the evaluation of intra-family relationships. Parental QL was correlated both with the children's self-rated QL (r = 0.42; p < 0.05) and children's parent-rated QL (r = 0.60; p < 0.001). Support for the moderator hypotheses is indicated by the results of regression analyses demonstrating a significant interaction effect of parental QL and patients' self-reported QL in predicting parental proxy reports on their children's QL. Post-hoc tests reveal that parents with low own QL agree significantly more with their children than parents with high QL. Parent-child agreement on the children's QL is limited and reflects complementary subjective viewpoints. Psychosocial interventions should be family-focused and provide support for patients' and their caregivers' QL.

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

“…The WHOQOL-BREF also assesses four dimensions of QOL: physical (questions 3, 4, 10, 15, 16, 17, and 18), psychological (questions 5,6,7,11,19, and 26), social (questions 20, 21, and 22), and environmental (questions 8, 9, 12, 13, 14, 23, 24, and 25). The environmental scale includes topics on physical security, home environment, financial resources, opportunities to acquire new information and abilities, availability of health care, physical environment, and transportation.…”

“…Because QOL changes over time, it is dynamic rather than fixed. The more specialized concept of HRQOL, conceptualized as the impact of an illness or medical treatment on QOL, is particularly relevant for CHD patients [4,7,9].…”

Child and parental adaptation to pediatric stem cell transplantation

“…Parent-child agreement seems to be influenced by the child's age with older age predicting greater differences, health status (a higher agreement has been found between parents and chronically sick children than between parents and healthy children), the types of the HRQoL domains investigated (i.e., a higher agreement for physical aspects of health versus emotional aspects) [12,14], parental QoL [17], and maternal affective disturbances [6,13]. To our knowledge, the influence of parenting stress on proxy-rated HRQoL has not been studied so far.…”

Results of Life Quality Evaluation in Children With Hepatic Variant of Glycogen Disease

“…Общепризнанным является факт, что любое хрони-ческое заболевание снижает качество жизни ребенка, а также семьи, в которой он воспитывается [9]. В связи с этим процесс реабилитации детей с ГБ подразумевает оценку их качества жизни (КЖ).…”