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Horizons of Psychology :: Psihološka obzorja

Scientific and Professional Psychological Journal of the Slovenian Psychologists' Association

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Parental stress and quality of life in families with children suffering from neonatal hypoxia treated with therapeutic hypothermia

Manja Rančigaj Gajšek & Metka Derganc

pdf Full text (pdf)  |  Views: 247  |  flagWritten in Slovene.  |  Published: May 30, 2019

pdf https://doi.org/10.20419/2019.28.498  |  Cited By: CrossRef (0)

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.

Keywords: neonatal hypoxia, therapeutic hypothermia, developmental outcomes, family quality of life, parental stress


Cite:
Rančigaj Gajšek,M., & 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


Reference list


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

Akre, C., Ramelet, A.-S., Berchtold, A., & 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, & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & 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., & Santa-Barbara, J. (1995). Family Assessment Measure III (FAM III). New York: Multi-Health Systems Inc. CrossRef

Summers, J. A., Behr, S. K., & 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., & 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., & 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., & 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., & 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., & 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., & Wirrell, E. C. (2004). Preventing hyperthermia decreases brain damage following neonatal hypoxic-ischemic seizures. Brain Research, 1011(1), 48–57. CrossRef


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