Doživljanje mater ob rojstvu otroka z Downovim sindromom : magistrsko delo

Zupan, Urša (author), Žgur, Erna (mentor)

Magistrsko delo obravnava problematiko doživljanj mater ob rojstvu otroka z Downovim sindromom. To je najpogostejša kromosomska motnja in ena najštevilčnejših skupin oseb z motnjami v duševnem razvoju. Rojstvo otroka z Downovim sindromom je za celotno družino velika sprememba, ki vpliva na vse družinske člane, predvsem pa na mater otroka. Dejstvo, da je otrok drugačen, kot so celo nosečnost pričakovale in si želele, sproži intenzivne čustvene odzive. Mater ob postavitvi diagnoze spremljajo občutki jeze, strahu pred prihodnostjo, občutki krivde, vse skupaj pa spremlja tudi velika mera stresa. Pot sprejemanja in soočanja z diagnozo je dolgotrajna, matere poleg podpore partnerja, družine in bližje okolice pri tem potrebujejo tudi pomoč in podporo strokovnjakov. Veliko podpore in koristnih informacij pa lahko dobijo tudi od ostalih staršev, ki so se srečali s podobno preizkušnjo, zato je povezovanje z njimi, predvsem zaradi lažjega soočanja z diagnozo, zelo pomembno. V magistrskem delu smo raziskali, kako so se matere odzvale na seznanitev z diagnozo Downovega sindroma ter kaj so pri tem doživljale. V empiričnem delu smo intervjuvali štiri matere otrok z Downovim sindromom. Vsak intervju smo posamezno predstavili in odgovore povezali s teoretskimi izhodišči. Ugotovili smo, da so vse štiri intervjuvane matere za diagnozo svojega otroka izvedele po njegovem rojstvu. Ob tem so doživljale veliko stisko ter zelo različna in močna čustva. Poročale so o šoku, ki so ga doživele ob prejetju diagnoze svojega otroka. Vsem štirim intervjuvankam je pri sprejemanju otrokove drugačnosti najbolj pomagala partnerjeva podpora. Odnosi med družinskimi člani in ožjimi družinskimi prijatelji se pri nobeni od družin niso spremenili. Razlike pri doživljanju intervjuvank so se pojavile pri sporočanju diagnoze pediatrov. Dve intervjuvanki sta pogrešali več podpore, empatije in prijaznosti strokovnih delavcev ter dodatne informacije o diagnozi otroka. Specialni in rehabilitacijski pedagogi se na svoji poklici poti pogosto srečujemo s starši otrok z Downovim sindromom. Pomembno je, da se zavedamo, v kakšnih stiskah so starši, jim znamo prisluhniti ter nuditi zadostne in strokovno utemeljene informacije. Sodelovanje ter dobri odnosi so temelj za otrokov optimalni napredek. Na podlagi pregleda literature in odgovorov mater v intervjujih, smo oblikovali smernice za starše, ki se bodo soočali z rojstvom otroka z Downovim sindromom.

• Language: Slovenian
• Keywords: soočanje z diagnozo, stres, matere
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Publisher: [U. Zupan]
• Year: 2018
• Number of pages: 53 str.
• PID: 20.500.12556/RUL-102026
• UDC: 159.922.76-056.313(043.2)
• COBISS.SI-ID: 12021833
• Publication date in RUL: 31.08.2018

Secondary language

• Language: English
• Title: Experience of mothers at delivering birth to a child with Down's syndrome

Abstract

This master's thesis discusses the way mothers cope with the fact that their newborn baby is diagnosed with Down syndrome. Down syndrome is the most common chromosomal disorder and people having it are one of the largest groups of people with (mild to moderate) intellectual disabilities. Birth of a child with Down syndrome is a big change for the whole family that affects all family members, but especially the mother of the child. The fact that her child is different than she expected and wished throughout her pregnancy triggers various emotional responses. When the diagnosis is made mother faces different emotions: anger, fear of future, guilt. On top of everything this is a very stressful experience. The process of accepting and dealing with the diagnosis is long, and a mother needs (besides the support of her partner, family and close friends) professional help and support. A lot of support and information can also be gained from other parents that had similar experience – this kind of interaction is extremely important, especially because it has a positive influence on the acceptance of the diagnosis. A part of this master's thesis is our research that focuses on the mother's reaction and her feelings when the diagnosis that the child has Down syndrome is shared with her. Empirical part consists of four interviews with mothers of children with Down syndrome. Each interview is a unit of its own where answers are analyzed and findings supported by theoretical reference points. A conclusion was reached that all four mothers found out about the diagnosis of their children after their birth. They were deeply distressed, and experienced various strong feelings. They reported being in shock, and for all four of them the most helpful in the process of accepting that their child is different was the support of their partners. The relationships among family members and friends have not changed in any of the families. The differences among interviewees immerged in the way the diagnosis was shared with them by pediatrists. Two of them missed more support, empathy and kindness and additional information about the diagnosis. Special and rehabilitation pedagogues often work with parents of children with Down syndrome. It is important to be aware of the types of distress they face, to know how to listen to them, and to give them enough (scientifically accurate) information. Cooperation and good relationships are the stepping stone to achieving child’s optimum progress. Based on the literature and interviewees’ answers guidelines for parents of children with Down syndrome were created.

• Keywords: Down's syndrome, mental handicap, Downov sindrom, motnje v duševnem razvoju