Life experiences of a mother with a child with Down syndrome: a case study

PDF (ελληνικά)
Published: Mar 24, 2021
DOI: https://doi.org/10.12681/psy_hps.26248
Keywords:
Case study Child with Down syndrome Experiences Mother
Maria Markodimitraki
University of Crete
https://orcid.org/0000-0002-9769-5923
Maria Kypriotaki
University of Crete
https://orcid.org/0000-0002-4705-4044
Abstract
Parents of children with Down syndrome face many challenges and have various needs related to their children’s difficulties. The purpose of this qualitative study is to detect the experiences of a mother of a female child with Down syndrome. More specifically, through semi-structured interviews, the study aims to explore the feelings of the mother, her involvement in the child’s life, as well as her relationships with the familial and social context. The results showed that the mother is significantly involved in her child’s life and faces various difficulties (e.g. acceptance of the child and her intensive care) on a daily basis, which she copes with supported by the intra-family network. By understanding the experiences of the specific mother, as the latter are examined in the present qualitative study, important issues emerge, related to diagnosis and early intervention, school integration of a child with Down syndrome, the role of family members in her education and therapy, as well as concerns regarding her future.
Article Details
  • Section
  • SPECIAL SECTION
Creative Commons License

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

The journal PSYCHOLOGY adopts a Platinum open-access policy. Submission, processing or publication costs are waived by the Hellenic Psychological Society. Papers published in the journal PSYCHOLOGY are licensed under a 'Creative Commons Attribution-ShareAlike 4.0 International' licence. The authors reserve the copyright of their work and grant the journal the right of its first publication. Third-party licensees are allowed to use the published paper immediately after publication as they wish, provided they retain the defined by the license copyright formalities, regarding the reference to its author(s) and its initial publication in the journal PSYCHOLOGY. Moreover, any adjusted work should be shared under the same reuse rights, so with the same CC license.

Downloads
Download data is not yet available.
Author Biographies
Maria Markodimitraki, University of Crete

Department of Preschool Education

Maria Kypriotaki, University of Crete

Department of Preschool Education

References
Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237–254. https://doi.org/10.1352/0895-8017(2004)109%3C237:PWACIM%3E2.0.CO;2
Βrofenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press.
Caqueo-Urízar, A., Alessandrini, M., Zendjidjian, X., Urzúa, A., Boyer, L., & Williams, D. R. (2016). Religion involvement and quality of life in caregivers of patients with schizophrenia in Latin-America. Psychiatry Research, 246, 769–775. https://doi.org/10.1016/j.psychres.2016.07.063
Centers for Disease Control and Prevention. (2018, September 19). Key Findings: Updated National Birth Prevalence Estimates for Selected Birth Defects in the United States, 2004–2006. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/features/birthdefects-keyfindings.html
Chapman, R. S., & Hesketh, L. J. (2000). Behavioral phenotypes of individuals with Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 6(2), 84–95. https://doi.org/10.1002/1098-2779(2000)6:2%3C84::AID-MRDD2%3E3.0.CO;2-P
Cuskelly, M., & Gunn, P. (2006). Adjustment of children who have a sibling with Down syndrome: Perspectives of mothers, fathers and children. Journal of Intellectual Disability Research, 50(12), 917–925. https://doi.org/10.1111/j.1365-2788.2006.00922.x
Cuskelly, M., Hauser-Cram, P., & Van Riper, M. (2008). Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Research and Practice. https://library.down-syndrome.org/en-us/research-practice/online/2008/families-down-syndrome-what-need/
Cuzzocrea, F., Murdaca, A. M., Costa, S., Filippello, P., & Larcan, R. (2016). Parental stress, coping strategies and social support in families of children with a disability. Child Care in Practice, 22(1), 3–19, http://dx.doi.org/10.1080/13575279.2015.1064357
Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behavior problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657–671. https://doi.org/10.1111/j.1365-2788.2005.00699.x
Esdaile, S. A. (2009). Valuing difference: Caregiving by mothers of children with disabilities. Occupational Therapy International, 16(2), 122–133. https://doi.org/10.1002/oti.274
Gath, A. (1978). Down’s syndrome and the family: The early years. Academic Press.
Gilmore, L., & Cuskelly, M. (2007, March). Parenting satisfaction and self-efficacy in mothers of children with Down syndrome: Early childhood to adolescence. Paper presented at the symposium of the Society for Research in Child Development “Parenting an adolescent with developmental disabilities: Do developmental principles apply?”, Boston, MA.
Goldberg, S., Marcovitch, S., MacGregor, D., & Lojkasek, M. (1986). Family responses to developmentally delayed preschoolers: Etiology and the father’s role. American Journal of Mental Deficiency, 90, 610–617.
Hastings, R. P. (1997). Grandparents of children with disabilities: A review. International Journal of Disability, Development and Education, 44, 329–340. https://doi.org/10.1080/0156655970440404
Hastings, R. P., Thomas, H., & Delwiche, N. (2002). Grandparent support for families of children with Down's syndrome. Journal of Applied Research in Intellectual Disabilities, 15(1), 97–104. https://doi.org/10.1046/j.1360-2322.2001.00097.x
Heward, W. L. (2011). Παιδιά με ειδικές ανάγκες: Μια εισαγωγή στην Ειδική Εκπαίδευση (Α. Δαβάζογλου & Κ. Κόκκινος, Eπιμ., Χ. Λυμπεροπούλου, Mτφρ.). Τόπος. (Έτος έκδοσης πρωτοτύπου 2009).
Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A., & Blume, S. (2017). Parenting children with Down syndrome: Societal influences. Journal of Child Health Care, 21(4), 488–497. https://doi.org/10.1177%2F1367493517727131
Ίσαρη, Φ., & Πουρκός, Μ. (2018). Ποιοτική μεθοδολογία έρευνας: Εφαρμογές στην ψυχολογία και στην εκπαίδευση. Σύνδεσμος Ελληνικών Ακαδημαϊκών Βιβλιοθηκών. https://repository.kallipos.gr/handle/11419/5826
Jaramillo, S., Moreno, S., & Rodriquez, V. (2016). Emotional burden in parents of children with trisomy 21: Descriptive study in a colombian population. Universitas Psychologia, 15(1), 29–38. https://doi.org/10.11144/Javeriana.upsy15-1.ebpc
Keller, D., & Honig, A. S. (2004). Maternal and paternal stress in families with school-aged children with disabilities. American Journal of Orthopsychiatry, 74, 337–348. https://doi.org/10.1037/0002-9432.74.3.337
Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the wellbeing of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50, 883–893. https://doi.org/10.1111/j.1365-2788.2006.00906.x
Κυπριωτάκη, Μ., & Γεωργιάδη, Μ. (2005). Παράγοντες που προκαλούν άγχος σε γονείς παιδιών με εμπόδια στη ζωή και στη μάθηση: Στρατηγικές αντιμετώπισης του άγχους και στήριξης της οικογένειας. Στο Α. Τριλιανού & Ι. Καράμηνα (Επιμ.), Πρακτικά 4ου Πανελληνίου Συνεδρίου με διεθνή συμμετοχή «Μάθηση και Διδασκαλία στην Κοινωνία της Γνώσης» (Τόμ. 2, σελ. 153–162). Κέντρο Έρευνας Επιστήμης και Εκπαίδευσης.
Κυπριωτάκη, Μ., & Πιερίδου, Μ. (2018). Δικαιώματα παιδιών με ειδικές εκπαιδευτικές ανάγκες στην εκπαίδευση. Στο Θ. Ελευθεράκης & Β. Οικονομίδης (Επιμ.), Παιδαγωγική και κοινωνιολογία της δημοκρατίας και των ανθρωπίνων δικαιωμάτων (σελ. 315–344). Διάδραση.
Lalvani, P. (2008). Mothers of children with Down syndrome: Constructing the sociocultural meaning of disability. Intellectual and Developmental Disabilities, 46(6), 436–445. https://doi.org/10.1352/2008.46:436-445
Lenhard, W., Breitenbach, E., Ebert, H., Schindelhauer-Deutscher, H. J., & Henn, W. (2005). Psychological benefit of diagnostic certainty for mothers of children with disabilities: Lessons from Down syndrome. American Journal of Medical Genetics, 133(Α), 170–175. https://doi.org/10.1002/ajmg.a.30571
Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2015). Services and supports for young children with Down syndrome: Parent and provider perspectives. Child: Care, Health and Development, 41(3), 365–373. https://doi.org/10.1111/cch.12162
McGrath, R. J., Stransky, M. L., Cooley, W. C., & Moeschler, J. B. (2011). National profile of children with Down syndrome: Disease burden, access to care, and family impact. The Journal of Pediatrics, 159(4), 535–540. https://doi.org/10.1016/j.jpeds.2011.04.019
Minnes, P., & Steiner, K. (2009). Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health and Development, 35(2), 250–256. https://doi.org/10.1111/j.1365-2214.2008.00931.x
Μitchell, D. B., Hauser-Cram, P., & Crossman, Μ. Κ. (2015). Relationship dimensions of the “Down syndrome advantage”. Journal of Intellectual Disability Research, 59(6), 506–518. https://doi.org/10.1111/jir.12153
Most, D. E., Fidler, D. J., LaForce-Booth, C., & Kelly, J. (2006). Stress trajectories in mothers of young children with Down syndrome. Journal of Intellectual Disability Research, 50, 501–514. https://doi.org/10.1111/j.1365-2788.2006.00796.x
Mulcahy, H., & Savage, E. (2016). Uncertainty: A little bit not sure. Parental concern about child growth or development. Journal of Child Health Care, 20(3), 333–343. https://doi.org/10.1177%2F1367493515587059
Ντεροπούλου-Ντέρου, Ε., & Ζώνιου-Σιδέρη, Α. (2019). Αναπηρία και διαφορετικότητα: Όροι ενόχλησης και εφησυχασμού. Στο Α. Ζώνιου-Σιδέρη & Ε. Ντεροπούλου-Ντέρου (Επιμ.), Εγχειρίδιο σπουδών στην αναπηρία: Σύγχρονες πολυεπιστημονικές θεωρήσεις (σελ. 9–17). Πεδίο.
Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual and Developmental Disability, 31(1), 1–12. https://doi.org/10.1080/13668250500349367
O’Mullan Wayne, D., & Krishnagiri, S. (2005). Parents’ leisure: Τhe impact of raising a child with Down syndrome. Occupational Therapy International, 12(3), 180–194. https://doi.org/10.1002/oti.4
Pelchat, D., Bisson, J., Ricard, N., Perreault, M., & Bouchard, J. M. (1999). Longitudinal effects of an early family intervention programme on the adaptation of parents of children with a disability. International Journal of Nursing Studies, 36(6), 465–477. https://doi.org/10.1016/S0020-7489(99)00047-4
Πετρογιάννης, Κ. (2001). Η μελέτη της ανθρώπινης ανάπτυξης υπό το πρίσμα της οικοσυστημικής προσέγγισης του Urie Bronfenbrenner. Δωδώνη, 30(μερ. Γ), 129–212.
Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273–284. https://doi.org/10.1046/j.1365-2788.2003.00489.x
Robson, C. (2010). H έρευνα του πραγματικού κόσμου: Ένα μέσον για κοινωνικούς επιστήμονες και επαγγελματίες ερευνητές (Κ. Μιχαλοπούλου, Eπιμ., Β. Νταλάκου & Κ. Βασιλικού, Μτφρ.). Gutenberg. (Έτος έκδοσης πρωτοτύπου 1993).
Seltzer, M., Krauss, M., & Tsunematsu, N. (1993). Adults with Down syndrome and their aging mothers: Diagnostic group differences. American Journal of Mental Retardation, 97, 496–508.
Sherman, A., Gardner, J. E., Brown, P., & Schutter, M. (1995). Grandparents’ adjustment to children with disabilities. Educational Gerontology, 21, 261–273. https://doi.org/10.1080/0360127950210306
Shonkoff, J. P., Hauser-Cram, P., Krauss M. W., & Upshur, C. (1992). Development of infants with disabilities and their families: Implications for theory and service delivery. Monographs of the Society for Research in Child Development, 57(6, Serial No. 230). https://doi.org/10.2307/1166087
Skotko, B. (2005). Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics, 115(1), 64–77. https://doi.org/10.1542/peds.2004-0928
Skotko, B., & Levine, S. (2006). What the other children are thinking: Brothers and sisters of persons with Down syndrome. American Journal of Medical Genetics, 142(C), 180–186. https://doi.org/10.1002/ajmg.c.30101
Φραγγογιάννη, Μ.-Ε. (2016). Η επίδραση παιδιού με ειδικές εκπαιδευτικές ανάγκες στη σχέση των γονέων του (ND 37782) [Διδακτορική διατριβή, Πανεπιστήμιο Κρήτης]. Εθνικό Αρχείο Διδακτορικών Διατριβών.
Zappella, E. (2016). Being a parent of a child with a disability in Italy: From diagnosis to starting school. Scandinavian Journal of Disability Research, 18(3), 200–209. https://doi.org/10.1080/15017419.2015.1063543
Vadasy, P. F., Fewell, R. R., & Meyer, D. J. (1986). Grandparents of children with special needs: Insights into their experiences and concerns. Journal of Division for Early Childhood, 10, 36–44. https://doi.org/10.1177%2F105381518601000104
Van Riper, M. (1999). Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome. Research in Nursing and Health, 22(5), 357–368. https://doi.org/10.1002/(SICI)1098-240X(199910)22:5%3C357::AID-NUR2%3E3.0.CO;2-Q
Van Riper, M., Ryff, C., & Pridham, K. (1992). Parental and family well-being in families of children with Down syndrome: A comparative study. Research in Nursing and Health, 15, 227–235. https://doi.org/10.1002/nur.4770150309
Most read articles by the same author(s)