Background: In parallel with the increase in the number of children with life-limiting or life-threatening diseases, the need for and right to pediatric palliative care is also increasing. This study aimed to examine the metabolic diseases, evaluate the symptoms, and review the needs of children who were admitted to the pediatric palliative care service. Methods: Following the approval of the local ethics committee (18/7/2019-107), the computer records of patients hospitalized in the pediatric palliative care service between December 1, 2018 and January 6, 2019 were reviewed retrospectively. Dr Behc ßet Uz Children's Hospital, Pediatric Palliative Care Center is third center in Turkey. Our pediatric palliative care center has one year of experience. Results: In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The mean age was 3.2 AE 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. Conclusion: Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented.
Yaşamı tehdit eden ya da sınırlayan hastalığı olan bireylerdeki artış nedeniyle son yıllarda palyatif bakım tıpta özel bir alan olarak kabul edilmiştir. Çocuklarda palyatif bakım yetişkin hastalardan farklıdır ve farklı bir yaklaşım gerektirmektedir. Pediyatrik palyatif bakım çocuk ve ailenin yaşam kalitesinin artırılmasına odaklanan, fiziksel, ruhsal, sosyal ve manevi gereksinimleri önemseyen en üst düzeyde bir bakım sistemidir. Bu derlemenin amacı; pediatrik palyatif bakımın özelliklerinin tanımlanması, yetişkinden farklarının belirtilmesi, bakım modelleri ve sağlık profesyonellerinin rolünün tartışılmasıdır.
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