magistrsko delo
Simona Pajnkiher (Avtor), Erna Žgur (Mentor)

Povzetek

Raziskovanje in določanje procesov soočanja staršev z otrokovo diagnozo cerebralne paralize je pomemben element pri nudenju ustrezne pomoči in podpore staršem ter celotni družini otroka s cerebralno paralizo. Z ugotavljanjem značilnosti procesov, skozi katere gredo večinoma vsi starši, ki se soočajo z na novo postavljeno diagnozo cerebralne paralize otroka, lahko bolje razumemo situacijo staršev, kakšen vpliv ima nanje in celotno družino otroka s cerebralno paralizo. Uspešno oz. manj uspešno soočanje staršev z otrokovo diagnozo lahko pomembno vpliva na življenjski potek staršev in dinamiko družine, partnerske zveze staršev itd. Namen našega magistrskega dela je na podlagi pridobljenih empiričnih rezultatov oblikovati program pomoči za starše, ki so v začetnih fazah soočanja z otrokovo diagnozo. Opravljeni intervjuji s starši otrok s cerebralno paralizo nam omogočajo podrobnejši vpogled v njihove potrebe. Zanimalo nas je, kako in s kakšnimi občutki se ti starši spopadajo v obdobju pred in po postavitvi diagnoze otroka; od koga v teh obdobjih prejmejo največ podpore ter kakšno podporo takrat najbolj potrebujejo; katero obdobje je za njih najtežje; kakšne izkušnje imajo s seznanjanjem svojih sorodnikov in prijateljev o diagnozi otroka; s kakšnimi občutki se soočajo ob reakcijah okolja na diagnozo otroka; kakšno podporo prejemajo s strani društev; v katera društva so vključeni. V našo raziskavo smo vključili 59 staršev, s katerimi smo izvedli intervjuje. Starši so iz podravske, osrednjeslovenske, savinjske, primorsko-notranjske oz. obalno-kraške, posavske in koroške regije. Ugotovili smo, da starši v obdobju pred in v obdobju po postavljeni diagnozi otroka v največji meri doživljajo čustveno stisko z mnogimi različnimi intenzivnimi občutki. Ti občutki so nekoliko intenzivnejši v obdobju po postavitvi diagnoze cerebralne paralize otroka. Večina staršev je v obdobju pred in po postavljeni otrokovi diagnozi uporabljala strategije, usmerjene v reševanje problemov. Zelo malo staršev se je situaciji izmikalo ali na soočanje odreagiralo z zanikanjem. Ugotovili smo, da je največ staršev prejelo podporo in pomoč s strani strokovnega osebja in terapevtov, takoj za tem sledita podpora in pomoč partnerja/ke ter sorodnikov. Starši so bili v največji meri hvaležni prejetih informacij (v zvezi z otrokovim stanjem, v zvezi s pomočjo za otroka …). Ugotovili smo, da starši v največji meri potrebujejo pomoč strokovnega osebja, da se lažje soočajo z otrokovo diagnozo. Takoj za tem pa potrebujejo pogovor oz. moralno podporo, jasne in realne informacije v zvezi z otrokovo diagnozo. Staršem je obdobje po postavljeni diagnozi težje v primerjavi z obdobjem pred postavljeno diagnozo. Sklepamo, da si diagnozo razlagajo kot dokončnost, nekaj, kar je potrjeno, in izgubijo upanje, ki so ga imeli pred samo potrditvijo diagnoze. Velika večina staršev govori o pozitivnih izkušnjah glede sprejemanja otrokove diagnoze s strani njihovih sorodnikov in prijateljev. Ugotavljamo, da tako kot starši tudi ožji sorodniki doživljajo paleto čustev ob diagnozi otroka. V manjši meri so celotno situacijo najtežje sprejeli otrokovi stari starši, nizko število sorodnikov pa otrokove diagnoze ni sprejelo. V večini imajo starši otrok s cerebralno paralizo pozitivne izkušnje z odzivi in reakcijami okolice na otrokovo stanje. Nekateri starši so bili deležni negativnih izkušenj, in sicer s strani starejših oseb. Zelo majhen delež staršev ima v večini le negativne izkušnje z odzivi okolice. Največ staršev je kot vir pomoči in podpore društev izpostavilo zdravstvenoterapevtske kolonije za družine. Ostala pomoč, ki jo prejmejo od društev, je deljenje informacij in izkušenj, vzpostavljanje stika s starši in družinami otrok s cerebralno paralizo, možnost terapij za otroka, predavanja in delavnice za starše ipd. Večina staršev otrok s cerebralno paralizo je vključenih v razna podporna društva. Statistično pomembne razlike se pojavljajo med starši, ki imajo enega otroka s CP, in tistimi, ki imajo zraven otroka s cerebralno paralizo še kakega otroka (p=0,00). Starši z več otroki se manj uspešno soočajo z razporejanjem časa in vzgoje med vse otroke v primerjavi s starši, ki imajo le otroka cerebralno paralizo. Starši z več otroki se morajo izredno dobro organizirati in paziti na razporejanje časa in vzgoje med otroke, da ostali niso zapostavljeni na račun otroka s cerebralno paralizo in obratno. Pridobljeni rezultati so nam služili kot izhodišče za oblikovanje programa pomoči v obliki smernic za starše otrok s cerebralno paralizo, ki so v začetnih fazah soočanja z diagnozo.

Ključne besede

potrebe staršev;pomoč staršem;podpora staršem;

Podatki

Jezik: Slovenski jezik
Leto izida:
Tipologija: 2.09 - Magistrsko delo
Organizacija: UL PF - Pravna fakulteta
Založnik: [S. Pajnkiher]
UDK: 376(043.2)
COBISS: 11757641 Povezava se bo odprla v novem oknu
Št. ogledov: 613
Št. prenosov: 110
Ocena: 0 (0 glasov)
Metapodatki: JSON JSON-RDF JSON-LD TURTLE N-TRIPLES XML RDFA MICRODATA DC-XML DC-RDF RDF

Ostali podatki

Sekundarni jezik: Angleški jezik
Sekundarni naslov: Parents dealing with their child's diagnosis of cerebral palsy and drawing up an asistence programme for parents
Sekundarni povzetek: Researching and determining the processes of parents dealing with their child's diagnosis of cerebral palsy is an important element in providing appropriate assistance and support to parents and to the whole family of a child with cerebral palsy. By identifying the process characteristics, which most parents go through, faced with newly diagnosed cerebral palsy of a child, we can better understand the situation of the parents, the impact on them and on the whole family of the child with cerebral palsy. Parents being successful or less successful in dealing with their child's diagnosis can significantly affect the life of parents, the dynamics of the family, marriages of parents, etc. The purpose of our master's thesis is, on the basis of the obtained empirical results, to formulate an aid scheme for parents who are in the initial stages of dealing with the child's diagnosis. The interviews conducted with the parents of children with cerebral palsy give us a closer insight into their needs. We were interested to know how and with what feelings these parents face over the period preceding and following the diagnosis; from whom they receive the greatest support and what kind of support they need most at the time; which period is the most difficult for them; what kind of experience they have in informing their relatives and friends of the child's diagnosis; what feelings they experience when dealing with others’ reactions to the diagnosis; what kind of support they receive from societies; which societies they are members of. A total of 59 parents were surveyed and being interviewed. The parents come from the Slovenian regions of Podravje, Osrednjeslovenska, Savinjska, Primorsko-notranjska or Obalno-kraška, Posavska, Koroška. It was noted that over the period preceding and following the diagnosis parents experience emotional distress to the greatest extent with many different intense feelings. These feelings are somewhat more intense in the post-diagnosis period of the cerebral palsy of the child. Problem-solving oriented strategies were used over the period preceding and following the diagnosis by the majority of parents. Very few parents avoided the situation and reacted with denial to the confrontation. We observed that the majority of parents received support and assistance from specialist staff and therapists, followed immediately by support and help from their partner and relatives. Parents were mostly grateful for the information they received (concerning the child's situation, child support ...). We have noted that parents mostly seek the help of specialist staff to help them face the diagnosis of the child, which is being closely followed by the need to talk and moral support, clear and real information relating to the child's diagnosis. Post-diagnosis period is proving more difficult for parents than pre-diagnosis period. We conclude that the diagnosis is interpreted as finality, something that is confirmed. Consequently, they lose hope they had before confirming the diagnosis. A large majority of parents talk about positive experiences about accepting a child's diagnosis by their relatives and friends. Additionally, it has been noted that close relatives experience similar emotional reactions to the diagnosis of the child as his parents. To a lesser extent, the whole situation was most difficult to accept by the children's grandparents, and a low number of relatives did not accept the child's diagnosis. In most cases, parents of children with cerebral palsy have gained positive experiences with the responses and reactions of other people to child's condition. However, some parents received negative experiences from older people. A very low number of parents have only negative experience with others’ reactions. Health therapy family treatment stays were highlighted as a source of help and support from societies by the most of parents. The other help they receive from societies is the sharing of information and experience, contacting parents and families of children with cerebral palsy, the possibility of therapy for the child, lectures and workshops for parents, etc. Most parents of children with cerebral palsy are members of various support associations. The difference between parents who have one child with cerebral palsy and those with more than one child is statistically significant (p = 0.00). Parents with multiple children are more likely to be less successful in giving attention, time and child-raising to all their children compared to parents who have only a child with cerebral palsy. Parents with multiple children need to organize themselves exceptionally well and take care of time management and education among children, so that others should not be left behind at the expense of a child with cerebral palsy and vice versa. The results obtained served as a starting point for the creation of an aid scheme in the form of guidelines for parents of children with cerebral palsy in the initial stages of diagnosis.
Sekundarne ključne besede: backward child;cerebral palsy;parents;otrok s posebnimi potrebami;cerebralna paraliza;starši;
Vrsta datoteke: application/pdf
Vrsta dela (COBISS): Magistrsko delo/naloga
Komentar na gradivo: Univ. v Ljubljani, Pedagoška fak., Specialna in rehabilitacijska pedagogika, Posebne razvojne in učne težave
Strani: IX f., 93 str.
ID: 10869029