Spletna stran Psiholoških obzorij uporablja piškotke za namene avtentikacije uporabnikov po prijavi na spletno stran, morebitno stalno prijavo na željo uporabnika in za namen beleženja števila ogledov posameznih strani Psiholoških obzorij.
Ali se strinjate, da na vaš računalnik (brskalnik) naložimo piškotke za te namene? Svojo odločitev lahko kasneje tudi spremenite na strani Zasebnost.

Želim izvedeti več

Psihološka obzorja :: Horizons of Psychology

Znanstveno-strokovna psihološka revija Društva psihologov Slovenije

Indeksirana v:
Scopus
PsycINFO
Academic OneFile

Smo člani DOAJ in CrossRef

sien
VSEBINA ZA AVTORJE PREDSTAVITEV UREDNIŠTVO POVEZAVE

Iskalnik

Moj račun

Članki z največ ogledi

 

« Nazaj na Letnik 28 (2019)

flag Go to the article page in English / Pojdi na angleško stran članka


Starševski stres in kakovost življenja družine otroka z obporodno hipoksijo, zdravljeno s hipotermijo

Manja Rančigaj Gajšek in Metka Derganc

pdf Polno besedilo (pdf)  |  Ogledi: 69  |  flagNapisan v slovenščini.  |  Objavljeno: 30. maj 2019

pdf 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


Seznam literature v članku


Abidin, R. R. (1995). Parenting Stress Index: Professional manual (3rd Ed.). Odessa, FL, ZDA: Psychological Assessment Resources.

Akre, C., Ramelet, A.-S., Berchtold, A. in Suris, J.-C. (2015). Educational intervention for parents of adolescents with chronic illness: A pre-post test pilot study. International Journal of Adolescent Medicine and Health, 27(3), 261–269. CrossRef

Biarent, D., Bingham, R., Eich, C., López-Herce, J., Maconochie, I., Rodríguez-Núñez in Zideman, D. (2010). European resuscitation council guidelines for resuscitation 2010: Section 6: Paediatric life support. Resuscitation, 81(10), 1364–1388. CrossRef

Bonifacio, S. L., deVries, L. S. in Groenendaal, F. (2015). Impact of hypothermia on predictors of poor outcome: How do we decide to redirect care? Seminars in Fetal & Neonatal Medicine, 20(2), 122–127. CrossRef

Bregant, T., Neubauer, D. in Derganc, M. (2012). Kakovost življenja mladostnikov, ki so v obdobju novorojenčka utrpeli hipoksično ishemično encefalopatijo [Quality of life in adolescents followed after neonatal hypoxic-ishaemic encephalopathy]. Zdravstveni vestnik, 81, 383–392.

Centers for Disease Control and Prevention (2016). Health-related quality of life (HRQOL) . Pridobljeno s http://www.cdc.gov/hrqol/index.htm

Cheak-Zamora, N. C. in Thullen, M. (2017). Disparities in quality and access to care for children with developmental disabilities and multiple health conditions. Maternal and Child Health Journal, 21(1), 36–44. CrossRef

Chouchan, S. C., Sinh, P. in Kumar, S. (2016). Assessment of stress and anxiety in parents of children with intellectual disability. Indian Journal of Health and Wellbeing, 7(5), 500–504.

Cohen, M. S. (1999). Families coping with childhood chronic illness: A research review. Families, Systems, and Health, 17(2), 149–164. CrossRef

Deater-Deckard, K. in Scarr, S. (1996). Parenting stress among dual-earner mothers and fathers: Are there gender differences? Journal of Family Psychology, 10, 45–59. CrossRef

Derganc, M., Škofljanec, A., Paro-Panjan, D., Kodrič, J., Osredkar, D. in Neubauer, D. (2015). Terapevtska hipotermija v Sloveniji. V Neubauer, D., Osredkar, D. (ur.). PTON III: Podiplomski tečaj otroške in razvojne nevrologije 2015/2016: izbor predavanj (1. del od 3) [ PTON III: Postgraduate Course in Child and Development Neurology 2015/2016: Lecture selection (Part 1 of 3)] (str. 361–378). Ljubljana, Slovenija: Medicinska fakulteta, Center za razvojno nevroznanost.

Dumas, J. E., Gibson, J. A. in Albin, J. B. (1989). Behavioral correlates of maternal depressive symptomatology in conduct-disorder children: II. Systemic effects involving fathers and siblings. Journal of Consulting and Clinical Psychology, 58(6), 877–881. CrossRef

Hastings, R. (2002). Parental stress and behaviour problems of children with developmental disabilities. Journal of Intellectual and Developmental Disability, 27, 149–160. CrossRef

Heringhaus, A., Blom, M. D. in Wigert, H. (2013). Becoming a parent to a child with birth asphyxia-From a traumatic delivery to living with the experience at home. International Journal of Qualitative Studies on Health and Well-Being, 8, 1–13. CrossRef

Hyde, J. S. (2005). The gender similarities hypothesis. American Psychologist, 60, 581–592. CrossRef

Inder, T. E. in Volpe, J. J. (2000). Mechanisms of perinatal brain injury. Seminars in Neonatalogy, 5(1), 3–16. CrossRef

Jacobs, S. E., Berg, M., Hunt R., Tarnow-Mordi, W. O., Inder, T. E. in Davis, P. G. (2013). Cooling for newborns with hypoxic ischaemic encephalopathy. Cochrane Database of Systematic Reviews, 2013(1), Art. No. CD003311. CrossRef

Jastrowski Mano, K. E., Anderson Khan, K., Ladwig, R. J. in Weisman S. J. (2011). The impact of pediatric chronic pain on parents' health-related quality of life and family functioning: Reliability and validity of the PedsQL 4.0 Family Impact Module. Journal of Pediatric Psychology, 36(5), 517–527. CrossRef

Johaningsmeir, S. A., Colby, H., Krauthoefer, M., Simpson, P., Conceição, S. C. in Gordon, J. B. (2015). Impact of caring for children with medical complexity and high resource use on family quality of life. Journal of Pediatric Rehabilitation Medicine, 8(2), 75–82. CrossRef

Jones, J. in Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 11(1), 31–46.

Kazak, A. in Marvin, R. (1984). Differences, difficulties and adaptation: Stress and social networks in three samples. Journal of Abnormal Child Psychology, 15, 137–146. CrossRef

Keller, D. in Sterling Honig, A. (2004). Maternal and paternal stress in families with school-aged children with disabilities. American Journal of Orthopsychiatry, 74(3), 337–348. CrossRef

Kreft, I. (2011). Soočanje družine s kronično ledvično boleznijo otroka (neobjavljena doktorska disertacija) [Family coping with child's chronic kidney disease (unpublished doctoral dissertation)]. Filozofska fakulteta Univerze v Ljubljani, Slovenija.

Lemmon, M. E., Donohue, P. K., Parkinson, C., Northington, F. J. in Boss, R. D. (2016). Parent experience of neonatal encephalopathy: The need for family-centered outcomes. Journal of Child Neurology, 32(3), 286–292. CrossRef

Lindo, E. J., Kliemann, K. R., Combes, B. H. in Frank, J. (2016). Managing stress levels of parents of children with developmental disabilities: A meta-analytic review of interventions. Family Relations, 65, 207–224. CrossRef

Marlow, N., Rose, A. S., Rands, C. E. in Draper, E. S. (2005). Neuropsychological and educational problems at school age associated with neonatal encephalopathy. Archives of Disease in Childhood: Fetal and Neonatal Edition, 90(5), 380–387. CrossRef

Medrano, G. R., Berlin, K. S. in Davies, W. H. (2013). Utility of the PedsQL™ Family Impact Module: Assessing the psychometric properties in a community sample. Quality of Life Research, 22, 2899–2907. CrossRef

McCubbin, H. I. in McCubbin, M. A. (1988). Typologies of resilient families: Emerging roles of social class and ethnicity. Family Relations, 37(3), 247–254. CrossRef

McCubbin, H. I. in Patterson, J. M. (1983). The family stress process: The double ABCX model of family adjustment and adaptation. Marriage and Family Review, 6, 7–37. CrossRef

Minnes, P. (1988). Family resources and stress associated with a developmentally handicapped child. American Journal of Mental Retardation, 93, 184–192. CrossRef

Nimbalkar, S., Raithatha, S., Shah, R. in Panchal, D. A. (2014). A qualitative study of psychosocial problems among parents of children with cerebral palsy attending two tertiary care hospitals in Western India. ISRN Family Medicine, 2014(769619). CrossRef

Panepinto, J. A., Hoffman, R. G. in Pajewski, N. M. (2009). A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease. Health and Quality of Life Outcomes, 7(1), 32–42. CrossRef

Radić, S., Grosek, Š., Osredkar, D. in Derganc, M. (2007). Zdravljenje novorojenke s hipoksično-ishemično encefalopatijo z uporabo sistemske hipotermije - prikaz primera [Tretment of a newborn with a hypoxic ischaemic encephalopathy using the systemic hypothermia]. Slovenska pediatrija, 14, 192–197.

Reichman, N. E., Corman, H. in Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12(6), 679–683. CrossRef

Shankaran, S. (2012). Therapeutic hypothermia for neonatal encephalopathy. Current Treatment Options in Neurology, 14(6), 608–619. CrossRef

Shankaran, S., Laptook, A. R., Ehrenkranz, R. E., Tyson, J. E., McDonald, S. A., Donovan, E. F., … Jobe, A. H. (2005). Whole-body hypothermia for neonates with hypoxic-ischemic encephalopathy. The New England Journal of Medicine, 353, 1574–1584. CrossRef

Singer, G. H., Ethridge, B. L. in Aldana, S. L. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities, 13, 357–369. CrossRef

Skinner, H., Steinhauer, P. D. in Santa-Barbara, J. (1995). Family Assessment Measure III (FAM III). New York: Multi-Health Systems Inc. CrossRef

Summers, J. A., Behr, S. K. in Turnbull, A. P. (1988). Positive adaptation and coping strengths of families who have children with disabilities. V G. H. S. Singer in L. K. Irvin (ur.), Support for caregiving families: Enabling positive adaptation to disability (str. 27–40). Baltimore, MD, ZDA: Brookes.

Trute, B. (1990). Child and parent predictors of family adjustment in households containing young developmentally disabled children. Family Relations, 39(3), 292–297. CrossRef

Varni, J. W. (2017). The PedsQLTM. Pridobljeno s http://www.pedsql.org/

Varni, J. W., Seid, M. in Rode, C. A. (1999) The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139. CrossRef

Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E. in Dixon, P. (2004). The PedsQLTM Family Impact Module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55. CrossRef

Volpe, J. J. (1995). Neurology of the newborn (3rd ed.). Philadelphia, PA; ZDA: WB Saunders.

Wechsler, D., Boben, D., Bucik, V. in Kovačič, D. (2001). WISC-IIISI: Wechslerjeva lestvica inteligentnosti za otroke: Priročnik [WISC-IIISI Wechsler Intelligence Scale for Children: Manual]. Ljubljana, Slovenija: Center za psihodiagnostična sredstva.

Wechsler, D., Gosar, D., Boben, D. in Kovačič, D. (2013). WPPSI-IIISI: Wechslerjeva lestvica inteligentnosti za predšolske otroke: Priročnik [WPPSI-IIISI: Wechsler Preschool and Primary Scale of Intelligence: Manual]. Ljubljana, Slovenija: Center za psihodiagnostična sredstva.

Werner, S. in Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34, 4103–4114. CrossRef

Woodman, A. C. (2014). Trajectories of stress among parents of children with disabilities: A dyadic analysis. Family Relations, 63(1), 39–54. CrossRef

Yager, J. Y., Armstrong, E. A., Jaharus, C., Saucier, D. M. in Wirrell, E. C. (2004). Preventing hyperthermia decreases brain damage following neonatal hypoxic-ischemic seizures. Brain Research, 1011(1), 48–57. CrossRef


« Nazaj na Letnik 28 (2019)