| Abstract | Iako su spoznaje o obolijevanju djece od neizlječivih, a poglavito malignih bolesti vrlo teške, unatoč napretku u liječenju neka stanja ipak nisu izlječiva. Pedijatrijska populacija zbog svojih razvojnih osobitosti zahtijeva specifičniju skrb u odnosu na odrasle. Pedijatrijska palijativna skrb ne obuhvaća isključivo razdoblje djetetove bolesti, nego i razdoblje nakon smrti djeteta koje je iznimno bolno za roditelje i članove obitelji. Uloga medicinske sestre jedna je od najvažnijih u multidisciplinarnom timu pedijatrijske palijativne skrbi. Budući da ona provodi najviše vremena s djetetom iznimno je važno da je u tom području visoko educirana kako bi djetetu mogla pružiti najbolju razinu kvalitete skrbi. U skladu s razvojnom dobi, djetetu je potrebno objasniti okolnosti u kojima se nalazi kako bi se prevenirao dodatan stres, što u medicinskih sestara iziskuje potrebu za razvijenim specifičnim vještinama. S obzirom da je maligna bolest, njezin tretman, a i potencijalni završetak djetetova života vrlo stresno razdoblje za cijelu obitelj, medicinska sestra treba imati dobro razvijene komunikacijske vještine udružene s empatijom kako bi mogla pomoći u suočavanju s težinom djetetove bolesti, pružanju potrebnih informacija i potrebnih savjeta. Upravo zato, medicinska sestra ima važnu ulogu u podršci roditeljima tijekom svih faza pedijatrijske palijativne skrbi, ali i u procesu žalovanja. Ovaj rad pruža temeljne odrednice palijativne zdravstvene njege s posebnim osvrtom na pedijatrijsku populaciju oboljelu od malignih bolesti. Pruža opis najučestalijih malignih bolesti u djece, reakcije djeteta i roditelja na malignu bolest, pojavnost neugodnih simptoma u djeteta s posebnim osvrtom na bol. Poseban naglasak stavljen je na podizanje kvalitete života, komunikaciju s djetetom i roditeljima, podršku tijekom trajanja skrbi, skrb radi predaha te podršku u procesu žalovanja. |
| Abstract (english) | Although the knowledge about children suffering from incurable diseases, especially malignancies, is very difficult, despite advances in treatment, some conditions are still incurable. The pediatric population, due to its developmental characteristics, requires more specific care compared to adults. Pediatric palliative care encompasses not only the period of the child's illness but also the period after the child's death, which is extremely painful for parents and family members. The role of a pediatric palliative care nurse is one of the most important in the multidisciplinary team. Since they spend the most time with the child, it is crucial that they are highly educated in this field in order to provide the highest level of quality care. According to the child's developmental age, it is necessary to explain the circumstances they are in to prevent additional stress, which requires nurses to have developed specific skills. Given that malignant disease, its treatment, and the potential end of the child's life are very stressful periods for the entire family, a nurse needs to have well-developed communication skills combined with empathy in order to help cope with the weight of the child's illness, provide necessary information, and give advice. That is why a nurse has an important role in supporting parents throughout all phases of pediatric palliative care, as well as in the grieving process. This paper provides the fundamental determinants of palliative care with a specific focus on the pediatric population affected by malignant diseases. It describes the most common malignant diseases in children, the reactions of the child and parents to malignant disease, the occurrence of unpleasant symptoms in the child with a particular emphasis on pain. Special emphasis is placed on improving the quality of life, communication with the child and parents, support during the duration of care, respite care, and support in the grieving process. |
