Psihološka Obzorja (May 2019)
Parental stress and quality of life in families with children suffering from neonatal hypoxia treated with therapeutic hypothermia
Abstract
We assessed the quality of life and the amount of parental stress in families with children treated with therapeutic hypothermia (TH) after hypoxic ischemic encephalopathy (HIE). Our sample included 19 children (10 with mild HIE, 6 with moderate HIE, and 3 children with severe HIE) and their parents. The children were 6 to 9 years old. Parents completed two questionnaires (PedsQL-FIM and PSI-III). As a developmental outcome indicator we measured the children’s intelligence with WISC-IIISI and WPPSI-IIISI. The quality of life in participating families was better and parental stress did not differ significantly from normative values. Families have adapted to the risk factors for lower quality of life caused by the child’s illness, which is consistent with the theory of positive adaptation (the dual ABC-X model). Poor quality of family life and increased parental stress in some (but not all) areas were found in families with children of an under average IQ in comparison with families with children of an average or above average IQ. This finding is consistent with previous studies involving families of children with HIE and some other chronic diseases. Developmental outcomes of children with HIE treated with TH are different with specific characteristics and needs of children and their families. Further investigation should be focused on the early period, as parents often expressed uncertainty and fear experienced after a diagnosis and acute treatment of the child. Health care professionals need to inform parents about sources of help in the local environment, as well as those available at the national level. It is important for parents to obtain information and education, as well as receive professional therapeutic help when necessary. In order to provide optimum support to families of chronically ill children, adequate health and social policy is essential.
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