Percepcja choroby u matek dzieci z diagnozą padaczki

Elżbieta Kręcisz-Plis

doi:10.18290/rped25173.2

Published : 2025-09-26

Vol. 17 No. 3 (2025)

Perception of Disease in Mothers of Children With Epilepsy

Elżbieta Kręcisz-Plis

https://orcid.org/0000-0001-5475-9301

DOI: https://doi.org/10.18290/rped25173.2

Abstract

A child’s chronic disease requires a great parents’ involvement, and especially from the mother, as the main caregiver, in fulfilling the responsibilities resulting from the care and upbringing of a child with special needs. Epilepsy is one of the most common chronic diseases of childhood – a disease known to man for centuries, still causing fear and concern. Mothers of children with epilepsy experience many difficult situations in their everyday lives, resulting not only from the child’s symptoms caused by the disease, but also from negative reactions from society. Many researchers over the years have presented the issue of illness and disability in terms of a crisis situation, with particular attention paid to the negative consequences for the family system of participating in the life of household members of a person struggling with a chronic disease. Therefore, it is so important to pay attention to the positive aspects of raising a child with epilepsy, to create optimal conditions for the social functioning of families affected by the disease, to create conscious and positive attitudes towards chronically ill people, and to eliminate the phenomenon of transferred stigmatization.

Keywords:

positive perception, epilepsy, motherhood, chronic disease

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References

Behr, S. K., i Murphy, D. (1993). Research progress and promise: The role of perceptions in cognitive adaptation to disability. W: A. P. Turnbull, J. M. Patterson, S. K. Behr, D. L. Murphy, J. G. Marquis i M. J. Blue-Banning (red.), Cognitive coping, families, and disability (s. 151–163). Baltimore, MD, England: Paul H. Brookes Publishing.

Behr, S. K., Murphy, D., i Summers, J. A. (1992). User’s Manual: Kansas Inventory of Parental Perceptions (KIPP): Measures of perceptions of parents who have children with special needs. Lawrence, KS: Beach Center on Families and Disability, University of Kansas.

Brzeziński, J. (2019). Metodologia badań psychologicznych. Warszawa: Wydawnictwo Naukowe PWN.

Burke, M. M., Fisher, M. H., i Hodapp, R. M. (2012). Relations of parental perceptions to the behavioural characteristics of adolescents with Down syndrome. Journal on Developmental Disabilities, 18(2), 50–58.

Byra, S., i Parchomiuk, M. (2018). Pozytywne zmiany w percepcji matek dzieci z niepełnosprawnością – struktura i uwarunkowania. Niepełnosprawność. Dyskursy pedagogiki specjalnej, (30), 324–342.

Ferrer, F., Vilaseca, R.V., i Bersabé, R. M. (2015). Kansas inventory of parental perceptions: Spanish adaptation of a shortened form. Journal of Developmental and Physical Disabilities, 27, 789–809. https://doi.org/10.1007/s10882-015-9456-y

Gupta, A., i Singhal, N. (2004). Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal, 15(1), 21–35.

Hastings, R. P., Allen, R., McDermott, K., i Still, D. (2002). Factors related to positive perceptions in mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15(3), 269–275. https://doi.org/10.1046/j.1468-3148.2002.00104.x

Hastings, R. P., i Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116–127. https://doi.org/10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2

Herzog, K., Schepper, F., Kamm, R., Engelhardt-Lohrke, C., Kreisch, A., Pletschko, T., Hauer, J., Christiansen, H., Suttorp, M., Kiel, J., i Martini, J. (2022). Illness perceptions in patients and parents in paediatric oncology during acute treatment and follow-up care. Psycho-Oncology, 31(6), 950–959. https://doi.org/10.1002/pon.5883

Kearney, P. M., i Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34(5), 582–592. https://doi.org/10.1046/j.1365-2648.2001.01787.x

King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., i Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care, Health & Development, 32(3), 353–369. https://doi.org/10.1111/j.1365-2214.2006.00571.x

Kręcisz-Plis, E. (2020). Zaangażowanie rodzicielskie a percepcja doświadczeń rodziców dziecka z chorobą przewlekłą. Niepełnosprawność. Dyskursy pedagogiki specjalnej, (37), 265–287.

Kwai-Sang Yau, M., i Li-Tsang, C. W. P. (1999). Adjustment and adaptation in parents of children with developmental disability in two-parent families: A review of the characteristic and attributes. The British Journal of Developmental Disabilities, 45(88), 38–51. https://doi.org/10.1179/096979599799156028

Parchomiuk, M. (2021). Satysfakcja i wymagania w roli matki i ojca dziecka z niepełnosprawnością. Roczniki Teologiczne, 68(10), 25–44. https://doi.org/10.18290/rt.216810.2

Pisula, E., i Noińska D. (2011). Stres rodzicielski i percepcja doświadczeń związanych z opieką nad dzieckiem u rodziców dzieci z autyzmem uczestniczących w różnych formach terapii. Psychologia rozwojowa, 16(3), 75–88.

Pozo, P., Sarriá, E., i Brioso, A. (2014). Family quality of life and psychological well‐being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58(5), 442–458. https://doi.org/10.1111/jir.12042

Sarriá, E., i Pozo, P. (2015). Coping strategies an parents’ positive perceptions of raising a child with autism spectrum disorders. W: M. Fitzgerald (red.), Autism Spectrum Disorder - Recent Advances (s. 51–79). http://dx.doi.org/10.5772/58966

Stelter, Ż. (2014). Sposób realizacji roli rodzicielskiej wobec dziecka niepełnosprawnego intelektualnie. Polskie Forum Psychologiczne, 19(1), 87–109.