Author/Editor		Jelenc, Nika; Eberlinc, Andreja; Hočevar-Boltežar, Irena
Title		Motnje hranjenja in požiranja pri otrocih z razcepi v orofacialnem področju
Translated title		Feeding and swallowing disorders in children with clefts in the orofacial region
Type		članek
Vol. and No.		Letnik 88, št. 9/10
Publication year		2019
Volume		str. str. 405-415
ISSN		1318-0347 - Zdravniški vestnik : glasilo Slovenskega zdravniškega društva : Slovenian medical journal
Language		slv
Abstract		Izhodišče: Orofacialni razcep je najpogostejša prirojena obrazna nepravilnost. Otroci z razcepi v orofacialnem področju imajo poleg težav z govorom tudi težave na področju hranjenja in požiranja. Raziskave kažejo, da so simptomi težav s hranjenjem precej raznoliki. V skrajnih primerih je potrebno uvesti nadomestne načine hranjenja. V Sloveniji še ni bila narejena raziskava o pojavljanju težav s hranjenjem pri otrocih z razcepi v orofacialnem področju. Metode: Ugotoviti smo želeli pogostost in vrsto težav s hranjenjem otrok z razcepi v orofacialnem področju, starih od pet mesecev do šest let. V ta namen smo izoblikovali anonimni vprašalnik za starše o vrsti orofacialnega razcepa, možnih otrokovih težavah pri hranjenju, požiranju in govoru ter pripomočkih za hranjenje. Vprašalnik je bil najprej pilotsko preizkušen pri starših otrok z orofacialnimi razcepi med kontrolnimi ambulantnimi pregledi, nato pa poslan 93 staršem otrok z orofacialnimi razcepi, rojenih v obdobju treh zaporednih let. Z opisno statistiko smo predstavili pogostnost pojavljanja težav ter analizirali dejavnike, ki so se pogosteje pojavljali pri otrocih s težavami pri hranjenju. Rezultati: Starši 58 otrok z orofacialnimi razcepi so izpolnili vprašalnik. Ugotovili smo, da je imelo skoraj tri četrtine otrok težave z vzpostavitvijo hranjenja takoj po rojstvu, kasneje so se težave s hranjenjem zmanjšale, vendar so bile v četrtini primerov še vedno prisotne do zaključenega kirurškega zdravljenja. Največ težav se je pojavljalo zaradi uhajanja hrane in pijače skozi nos, požiranja zraka pri hranjenju po steklenički in podaljšanega časa hranjenja. Otroci z razcepom neba z razcepom ustnice ali brez so imeli bistveno več težav s hranjenjem kot otroci samo z razcepom ustnice. Večina staršev je za hranjenje uporabljala prilagojeno stekleničko in je bila z uporabo zadovoljna. Več kot polovica staršev je izjavila, da so prejeli premalo informacij v zvezi s hranjenjem pred in takoj po rojstvu otroka. Zaključek: Kljub dobro organizirani multidisciplinarni skrbi za otroke z orofacialnimi razcepi v Sloveniji starši še vedno pogrešajo konkretna navodila o hranjenju otroka z orofacialnim razcepom, zaradi česar bo potrebno dodatno izobraziti predvsem medicinske sestre, ki delajo v porodnišnicah. Glede na visoke cene pripomočkov za hranjenje otrok z orofacialnimi razcepi bi bilo dobrodošlo, da bi kril stroške ZZZS.Background: Orofacial clefts are the most common congenital craniofacial malformations. Children with orofacial clefts do not only have problems with speech, but also with feeding and swallowing. Alternative methods of feeding need to be introduced in severe cases. Until now there has not been conducted a single study regarding feeding and swallowing problems in children with orofacial clefts in Slovenia. Methods: The aim of the study was to determine the prevalence and the type of feeding and swallowing problems in children with orofacial clefts, aged between five months and six years. An anonymous questionnaire for parents was created, containing questions about the type of the child's orofacial cleft, child's possible feeding, swallowing and speech problems, and special feeding gadgets. The questionnaire was initially tested in a pilot study during routine medical follow-up visits. Afterwards, it was sent to 93 parents of children with clefs, born in a period of three consecutive years. A descriptive statistics was used to present the prevalence of feeding and swallowing problems in children with orofacial clefts. The factors correlated with feeding problems were analysed. Results: Almost three-quarters of children had problems with feeding immediately after birth; problems with feeding later decreased, but they were still present in one quarter of all cases until the completed surgical treatment. Most difficulties occurred due to nasal regurgitation, excessive air intake while bottle feeding, and prolonged feeding time. Children with cleft palate with or without cleft lip had significantly more feeding problems in comparison to children with cleft lip only. Most parents used special feeding bottles and were generally satisfied with their use. More than a half of the parents believed that they had received too little information about feeding before and immediately after the child's birth. Conclusion: Despite the well-organized multidisciplinary care of children with orofacial clefts in Slovenia, parents still miss the professional counselling about feeding their children. Therefore, an additional education of nurses working in maternity hospitals will be necessary in the future. Considering the high prices of special feeding gadgets for children with orofacial clefts, covering of their costs by the health insurance would be welcome.
Keywords		razcepi v orofacialnem področju motnje hranjenja in požiranja vprašalnik dejavniki tveganja obravnava orofacial clefts feeding and swallowing problems questionnaire risk factors interventions