The dynamics of the coping process of families of children with severe multiple disabilities
Jiří Kantor
Pedagogická Fakulta, Palacký University OlomoucAbstract
The paper explains the specifics of the dynamics of the coping process of families with children with severe multiple disability (SMD). The realised study was of a qualitative design and was based on the thematic analysis and interpretative content analysis of case studies of families with a child with SMD. Data were collected using 11 semi-structured interviews and case studies of families. Among the analysed themes were hearing the first news of the diagnosis, making the decision to keep the child at home, the losses related to the disability of the child, general thoughts about the life experience and worries related to future. Data was interpreted on the basis of the model of loss created by Ross and discussed in the context of other models. Specific conclusions were found mainly in the dealing process with the first news of the child’s diagnosis, the decision process to keep the child with the family, indefiniteness of the disability and integration of the losses.
Schlagworte:
Family, multiple disability, coping, Kübler-Ross, lossLiteraturhinweise
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Frye L., Fathers’ Experience With Autism Spectrum Disorder: Nursing Implications, in: “Journal of Pediatric Health Care” 2016 (in press).
Harčaríková T., Pedagogika telesne postihnutých, chorých a zdravotne oslabených – teoretické základy, Bratislava 2011, IRIS.
Himelstein P. (eds.), Readings on the exceptional child: Research and theory (227–246), New York: Appleton-Century-Crofts.
Heaton J., Noyes J., Sloper P., Shah R., Families’ experiences of caring for technology-dependent children: a temporal perspective, in: “Health and Social Care in the Community”, 2005, 13, 5, 441–450.
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Kastenbaum R., Death, Society, and Human Experience, Boston 1998: Allyn and Bacon.
Newman L., Elisabeth Kübler-Ross, in: “British Medical Journal” 2004, 329, 7466, 627.
Pomeroy E., Garcia R., The Grief Assessment and Intervention Workbook: A Strengths Perspective, Belmont 2008: Cengage Learning.
Rando T.A., Treatment of Complicated Mourning, Champaign IL 1993: Research Press.
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Scorgie K., Sobsey D., Transformational outcomes associated with parenting children who have disabilities, in: “Mental Retardation”, 2000, 38, 195–206.
Sládečková S., Sobotková I., Dětský autismus v kontextu rodinné resilience, Olomouc 2014: VUP.
Stroebe M.S., Schut H., Meaning making in the dual process model of coping with bereavement, in: R.A. Neimeyer (ed.), Meaning reconstruction and the experience of loss, Washington DC 2001: American Psychological Association, 55–73.
Vágnerová M., Psychopatologie pro pomáhající profese, Praha 2000: Portál.
Van Manen M., Researching lived experience: Human science for an action sensitive pedagogy, London 19972: The Althouse Press.
Vítková M., Somatopedické aspekty, Brno 2006: Masarykova Univerzita.
Ženka J., Kofroň J., Metodologie výzkumu v sociální geografii – případové studie, Ostrava 2012: Ostravská univerzita.
Boss P., Ambiguous loss: Learning to live with unresolved grief, Harvard University Press 2009.
Braun V., Clarke V., Using thematic analysis in psychology, in: “Qualitative Research in Psychology” 2006, 3:2, 77–101.
Brehaut J.C., Kohen D.E., Raina P., Walter S.D., Russell D.J., Swinton M., O’Donnell M., Rosenbaum P., The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?, in: “Pediatrics” 2004, 114, 2, 182–191.
Bruce E., Schultz C., Nonfinite Loss and Grief: A Psychoeducational Approach, Brookes Publishing Company 2001.
Cantwell-Bartl A., How psychologists can assist parents of children with a disability, in: InPsych, The Australian Psychological Society 2009. Cit. 12.11.2015. Retrieved from: https://www.psychology.org.au/inpsych/assist_disability/.
Engel G.L., Grief and Grieving, “The American Journal of Nursing” 1964, v. 64, no. 9, 64 (9), 93–98.
Farber B., Effects of a severely mentally retarded child on the family, in: Trapp E.P., Himelstein P. (eds.), Readings on the exceptional child: Research and theory (227–246), New York 1962, Appleton-Century-Crofts.
Frye L., Fathers’ Experience With Autism Spectrum Disorder: Nursing Implications, in: “Journal of Pediatric Health Care” 2016 (in press).
Harčaríková T., Pedagogika telesne postihnutých, chorých a zdravotne oslabených – teoretické základy, Bratislava 2011, IRIS.
Himelstein P. (eds.), Readings on the exceptional child: Research and theory (227–246), New York: Appleton-Century-Crofts.
Heaton J., Noyes J., Sloper P., Shah R., Families’ experiences of caring for technology-dependent children: a temporal perspective, in: “Health and Social Care in the Community”, 2005, 13, 5, 441–450.
Horowitz M.J., Siegel B., Holsen A., Bonanno G.A., Milbrath C., Stinson C.H., Diagnostic criteria for complicated grief disorder, in: “American Journal of Psychiatry”, 1997, 154, 904–910.
Iversen A.S., Graue M., Clare J., Parents Perspectives of Surgery for a Child Who Has Cerebral Palsy, in: “Journal of Pediatric Health Care”, 2009, 23, 3, 165–172.
Kantor J., Michalíková M., Ludíková L., Kantorová Z., Žité zkušenosti rodin dětí s těžkým kombinovaným postižením, Olomouc 2015: Vydavatelství Univerzity Palackého.
Kastenbaum R., Death, Society, and Human Experience, Boston 1998: Allyn and Bacon.
Newman L., Elisabeth Kübler-Ross, in: “British Medical Journal” 2004, 329, 7466, 627.
Pomeroy E., Garcia R., The Grief Assessment and Intervention Workbook: A Strengths Perspective, Belmont 2008: Cengage Learning.
Rando T.A., Treatment of Complicated Mourning, Champaign IL 1993: Research Press.
Ross K.E., O dětech a smrti, Praha 2003: Ermat.
Scorgie K., Sobsey D., Transformational outcomes associated with parenting children who have disabilities, in: “Mental Retardation”, 2000, 38, 195–206.
Sládečková S., Sobotková I., Dětský autismus v kontextu rodinné resilience, Olomouc 2014: VUP.
Stroebe M.S., Schut H., Meaning making in the dual process model of coping with bereavement, in: R.A. Neimeyer (ed.), Meaning reconstruction and the experience of loss, Washington DC 2001: American Psychological Association, 55–73.
Vágnerová M., Psychopatologie pro pomáhající profese, Praha 2000: Portál.
Van Manen M., Researching lived experience: Human science for an action sensitive pedagogy, London 19972: The Althouse Press.
Vítková M., Somatopedické aspekty, Brno 2006: Masarykova Univerzita.
Ženka J., Kofroň J., Metodologie výzkumu v sociální geografii – případové studie, Ostrava 2012: Ostravská univerzita.
Kantor, J. (2019). The dynamics of the coping process of families of children with severe multiple disabilities. Family Forum, 6, 221–236. Abgerufen von https://czasopisma.uni.opole.pl/index.php/ff/article/view/667
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