Inborn Errors of Metabolism in Pediatric Palliative Care
childhood; life-limiting diseases; metabolic diseases; pediatric palliative care; symptom assessment
BACKGROUND: In parallel with the increase in the number of children with life-limiting or threatening diseases, the need and right of pediatric palliative care also increases. In this study, it was aimed to examine the metabolic diseases, evaluate the symptoms and review the needs in children who were admitted to the pediatric palliative care service. METHOD(S): 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 01.12.2018-01.6.2019 were reviewed retrospectively. Dr Behcet Uz Children's Hospital is a tertiary hospital and pediatric palliative care has 1 year experience. RESULT(S): 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 average age was 3.2 +/- 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. CONCLUSION(S): 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. Copyright This article is protected by copyright. All rights reserved.
Harputluoglu N; Kose M; Yilmaz U; Celik T
Pediatrics International
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/ped.14660" target="_blank" rel="noreferrer noopener">10.1111/ped.14660</a>
The Experiences of Parents of Children in Pediatric Palliative Care: A Qualitative Study
Experience; Mothers; Pediatric palliative care; Qualitative study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 mothers. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating themes. RESULTS: Three main themes of the interviews emerged; family experiences, social life and care in the palliative care unit. The mothers said that family relationships were affected, that they experience fear of loss, that they experience depression, that all responsibility for treatment and care lies with the mothers, and that there is no social support. Mothers said that they are in the same place as mothers of children in similar situations and that they are happy and comfortable because they have single rooms. In addition, the mothers stated that they are very afraid of the COVID-19 virus infecting their children and therefore losing their children. CONCLUSIONS: The mothers experienced some problems such as fear of loss, depression, care burden, social support, exclusion, daily life, social relationships, feeling safe, and emotional effect. PRACTICE IMPLICATIONS: Pediatric nurses need to understand mothers' anxiety, grief, relationships with their children, and coping strategies to provide support.
Karakul A; Kıratlı D; Akgül AE; Çelik T
Journal of Pediatric Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2022.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.08.015</a>
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
child; article; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Harputluoglu N; Coskun M; Cubukcu D; Celik T
Journal of Pediatric Academy
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</a>