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Starševski stres in kakovost življenja družine otroka z obporodno hipoksijo, zdravljeno s hipotermijo
Manja Rančigaj Gajšek in Metka Derganc
Polno besedilo (pdf) | Ogledi: 253 | Napisan v slovenščini. | Objavljeno: 30. maj 2019
https://doi.org/10.20419/2019.28.498 | Citati: CrossRef (0)
Povzetek: Preučevali 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 politike.
Ključne besede: obporodna hipoksija, terapevtska hipotermija, razvojni izidi, kakovost življenja družine, starševski stres
Citiraj:
Rančigaj Gajšek,M. in Derganc, M. (2019). Starševski 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]. Psihološka obzorja, 28, 28–39. https://doi.org/10.20419/2019.28.498
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