Priprava staršev na rojstvo otroka z razcepom ustnice in/ali neba : diplomsko delo

Mikulandra, Tjaša (author), Mivšek, Ana Polona (mentor), Petročnik, Petra (comentor)

Uvod: Razcep ustnice in/ali neba je ena najpogostejših prirojenih nepravilnosti v svetovnem merilu. Kljub pogostosti so informacije in znanje o tej prirojeni nepravilnosti staršem največkrat neznane, zato ob postavitvi diagnoze doživljajo velik stres, saj se njihove sanje o idealnem otroku porušijo. Zdravstveno osebje, ki je v stiku z družino, ko se postavi diagnoza, ima tako veliko vlogo v procesu sprejetja in razumevanja diagnoze ter otroka s strani celotne družine. Namen: Namen diplomske naloge je ugotoviti, kako diagnoza razcepa ustnice in/ali neba vpliva na občutke staršev do še nerojenega ali rojenega otroka, kakšne stiske in strahove doživljajo starši ter kakšno pomoč potrebujejo pri sprejemanju diagnoze, prilagoditve na otrokovo prirojeno nepravilnost in s tem zdravo družinsko osnovo za najboljši razvoj otroka. Metode dela: V diplomskem delu smo uporabili deskriptivno ali opisno metodo dela ter tako povzeli ključne ugotovitve s pomočjo pregleda literature. Pri iskanju literature smo uporabili časovni okvir, in sicer od leta 2005 do 2018. Literatura je bila iskana v slovenskem in predvsem angleškem jeziku. Podatkovne baze, v katerih smo iskali informacije, so bile DiKUL, COBISS, PubMed, Wiley Online Library in ScienceDirect. Rezultati: V analizo smo ključili 6 raziskav. Psihološki vpliv diagnoze razcepa ustnice in/ali neba na starše, ki tega ne pričakujejo, je izredno velik. Kaže se v visoki stopnji stresa in strahu, ki ga starši doživljajo, ko se soočajo z vsemi neznankami, ki jih diagnoza prinese. Starši velikokrat doživljajo občutke krivde za otrokovo prirojeno nepravilnost. Strahovi staršev zajemajo skrb za otroka in efektivno hranjenje, operacije, otrokov razvoj, težjo socializacijo in stigmatizacijo otroka. Za razumevanje in lažje spoprijemanje z novonastalo situacijo starši potrebujejo individualizirana svetovanja, s pomočjo katerih pridobijo znanje o diagnozi in negi, ki jo otrok potrebuje. V veliko pomoč staršem so podporne skupine, ki jih sestavljajo starši otrok s podobnimi izkušnjami. Razprava in zaključek: Čas prehoda v starševstvo, sprejemanje prirojene nepravilnosti otroka in priprava na skrb in zdravljenje otroka so izzivi, s katerimi so soočeni starši ob diagnozi razcepa ustnice in/ali neba. S pomočjo ustreznega svetovanja nemalo družin navaja veliko pozitivnih pridobitev in znanj, ki so posledica pozitivnega sprejemanja prirojene nepravilnosti.

• Language: Slovenian
• Keywords: razcep ustnice in/ali neba, priprava staršev, sprejetje diagnoze
• Work type: Bachelor thesis/paper
• Organization: ZF - Faculty of Health Sciences
• Year: 2019
• PID: 20.500.12556/RUL-107567
• COBISS.SI-ID: 5612907
• Publication date in RUL: 26.04.2019

Secondary language

• Language: English
• Title: Preparation of parents for the birth of a child with a cleft lip with or without palate : diploma work

Abstract

Introduction: Cleft lip with or without palate is one of the most common congenital anomalies in the world. Despite the frequency, information and knowledge about the anomaly are often unknown to parents, and when their child is diagnosed with cleft lip with or without palate, parents experience high levels of stress, as their dreams of a perfect child vanish. Medical staff plays a major role in the process of coping with the diagnosis and accepting the child by the whole family. Purpose: The purpose of the diploma thesis was to determine, how the diagnosis of cleft lip with or without palate affects parents' emotions for their yet unborn or already born child. I`d like to determine what difficulties and fears parents experience after the diagnosis is defined and what kind of help they need, to accept and adjust to the diagnosis, so that they can create a healthy family base for the best emotional and physical development of the child. Methods: The descriptive method was used to write our diploma thesis. Key findings, which described our research questions were collected using databases such as DiKul, COBISS, PubMed, Wiley Online Library and Science Direct, using keywords in Slovenian and mostly English language. Results: Six studies were included in the analysis. The psychological impact of the diagnosis of cleft lip with or without palate on parents that do not expect it is on a large scale. Parents often experience a feeling of guilt for the child's anomaly. The greatest fears that parents have are the severity of the cleft, care and feeding, surgeries, development, difficulties in socialization and stigmatization. To overcome initial fears and stress parents need individualized counseling to understand and accept the newly emerging situation, which helps them during the path. Supportive groups of parents that have children with similar clefts are of great help. Discussion and Conclusion: Transitioning to parenting, accepting the anomaly of the child and the preparation for care and treatment are the challenges a lot of parents face when the diagnosis of cleft lip with or without palate is confirmed. Despite great challenges, a lot of families with grown children born with a cleft describe many positive achievements and acknowledge that they have acquired as a result of the positive adaptation to the cleft.

• Keywords: cleft lip with or without palate, counseling, diagnosis adaptation