Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
adolescent; artificial ventilation; assisted ventilation; attention; child; conference abstract; female; human; major clinical study; male; medical record review; neuromuscular disease; noninvasive ventilation; palliative therapy; retrospective study; school child; school dropout; secondary health care; social exclusion; social needs; tracheostomy
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the study was to analyze the social needs of children and families living with home LTVS and highlights signs of social exclusion. Methods: retrospective medical records review of children on home LTVS, followed by our Regional Paediatric Palliative Care Network. According to Wallis and Jardine we defined paediatric LTVS as “any child below the age of 17 who is medically stable and requires a mechanical aid for breathing either invasively by tracheostomy or by non-invasive mask interface for all, or part of the day.” We extended the age to 23 yrs. The following data were adopted as signs of social exclusion: absence of secondary care-giver (meaning the child must be with the same person throughout the day), abandon of work by a parent, no chance for family holiday, school dropout. Results: among 87 patients, 33 cases are ventilated invasively and 54 with Non-invasive Ventilation. Median age is 9,5 yrs; 52% of the children are affected by a neuromuscular disease, 21% being permanently enticed. Thirty-seven (42,5%) children don’t have a secondary care-giver, in 41 families one parent abandoned work and 12 children experienced school dropout. Conclusions: Children and families living with home LTVS have special needs not only in the medical field but also in the social one. Our data confirm that these children are at high risk for exclusion from the society and suggest more attention on these aspects which represent significant challenge for clinicians.
Benedetti F; Agosto C; Divisic A; Rusalen F; Moro N; Pellizzon M; Ometto M; Grigolon E; Lazzarin P; Benini F
European Respiratory Journal
2019
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/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">10.1183/13993003.congress-2019.PA639</a>
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</a>
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
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/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</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>
Current State of Palliative Medical Care for Children at the Regional Level on the Example of the Minsk Region
Child; child; article; human; quality of life; palliative therapy; home care; hope; pediatrics; assisted ventilation; uncertainty; long term care; Only Child; relative; Belarus; health belief
Kashliak O; Zaitsev D; Lazarchik I; Tikhonovets M; Halasheuskaya A
Paediatrics Eastern Europe
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).
10.34883/PI.2021.9.3.008