400 KB62 KB199220252019Derganc, MetkaRančigaj Gajšek, Manjaštevilka:28str. 28-39ISSN:2350-5141COBISSID_HOST:69624418URN:URN:NBN:SI:doc-RINYTWK8enslDruštvo psihologov SlovenijePsihološka obzorja (Ljubljana)brain damagechildrencognitive abilitydružinsko okoljefamily environmenthipoksična ishemična encefalopatijahypoxic ischemic encephalopathyinteligentnostintelligencekakovost življenjamožganske okvareneonatal hypoxiaobporodna hipoksijaotrociparentingParenting Stress Index, Third edition PSI-IIIPediatric Quality of Life Inventory - Family Impact Module (Parent report) (PedsQLFIM) PedsQL 3.0quality of lifespoznavne sposobnostistarševstvostresstressterapevtska hipotermijatherapeutic hypothermiaVprašalnik o vplivu bolezni otroka na kakovost življenja starševVprašalnik za ugotavljanje stresa pri starših, 3. izdaja, PSI-IIIWechsler intelligence scale for children WISC-III SIWechsler preschool and primary scale of inteeligence WPPSI-III SIWechslerjeva lestvica inteligentnosti za otroke, 3. izdaja, WISC-III SIWechslerjeva lestvica inteligentnosti za predšolske otroke, 3. izdaja WPPSI-III SIStarševski stres in kakovost življenja družine otroka z obporodno hipoksijo, zdravljeno s hipotermijo| Parental stress and quality of life in families with children suffering from neonatal hypoxia treated with therapeutic hypothermia|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 essentialPreučevali smo kakovost življenja ter količino starševskega stresa pri družinah otrok s hipoksično ishemično encefalopatijo (HIE), zdravljeno s terapevtsko hipotermijo (TH). Starši 19 otrok (10 otrok z blago, 6 z zmerno in 3 s hudo HIE), starih od 6;0 do 9;4 let, so izpolnili vprašalnika PedsQL-FIM in PSI-III. Kot merilo razvojnega izida smo otrokom izmerili količnik inteligentnosti (IQ) z instrumentoma WISC-IIISI oziroma WPPSI-IIISI. Kakovost življenja družin je bila v povprečju višja, starševski stres pa v območju povprečja glede na splošno populacijo. Družine so se v večini prilagodile dejavnikom tveganja za porušeno delovanje družine, ki jih prinaša otrokova bolezen, kar je skladno s teorijo o pozitivni prilagoditvi (dvojni ABC-X model). Tako kot v predhodnih raziskavah, ki so vključevale družine otrok s HIE in z nekaterimi drugimi kroničnimi boleznimi, smo v družinah otrok s podpovprečnim IQ ugotovili slabšo kakovost življenja družine in povišan starševski stres na nekaterih (ne pa vseh) področjih v primerjavi z družinami otrok s povprečnim ali nadpovprečnim IQ. Otrok s HIE, zdravljenih s TH, ne moremo obravnavati kot homogeno skupino, saj so razvojni izidi otrok različni, prav tako so specifične tudi značilnosti in potrebe otrok in njihovih družin. Starši so pogosto izpostavljali negotovost in strah, ki so ju doživljali po rojstvu otroka % ob diagnozi in akutnem zdravljenju otroka, zato se je pri raziskovanju delovanja družine smiselno usmeriti na zgodnje obdobje. Zdravstveni delavci morajo starše usmerjati k virom pomoči v lokalnem okolju, prav tako pa k tistim na državni ravni. Za starše sta pomembna pridobivanje informacij o naravi otrokovih težav in možnih oblikah pomoči, pa tudi strokovna terapevtska pomoč, kadar je to potrebno. Za nudenje optimalne podpore družinam kronično bolnih otrok je bistvena podpora zdravstvene in socialne politikeTEXTznanstveno časopisjejournalsSlovenian National E-content AggregatorNational and University Library of SloveniaDruštvo psihologov Slovenije