Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting p...

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Veröffentlicht in:European journal of pediatrics 2023-03, Vol.182 (3), p.1393-1401
Hauptverfasser: Meglič, Jakob, Lisec, Ajda, Lepej, Dušanka, Loboda, Tanja, Bertok, Sara, Lešnik Musek, Petra, Kreft Hausmeister, Ivana, Oštir, Majda, Ponjević, Tehvida, Meglič, Anamarija
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Sprache:eng
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Zusammenfassung:The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. Conclusions : More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting. What is Known: • Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families. • Early identification is only possible with a high level of knowledge and understanding of PPC among h
ISSN:1432-1076
0340-6199
1432-1076
DOI:10.1007/s00431-023-04806-7