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Published in: European Journal of Pediatrics 3/2023

Open Access 21-01-2023 | Care | RESEARCH

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

Authors: Jakob Meglič, Ajda Lisec, Dušanka Lepej, Tanja Loboda, Sara Bertok, Petra Lešnik Musek, Ivana Kreft Hausmeister, Majda Oštir, Tehvida Ponjević, Anamarija Meglič

Published in: European Journal of Pediatrics | Issue 3/2023

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Abstract

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 healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.
What is New:
To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. 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. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.
The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. 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. We re-established the importance of education and practical work tailored to the different professional profiles, 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.
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Literature
4.
go back to reference American Academy of Pediatrics (2000) Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 106:351–357 American Academy of Pediatrics (2000) Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 106:351–357
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go back to reference World Health Organization (2016) Planning and implementing palliative care services: a guide for programme managers, 2e éd. Organisation mondiale de la Santé, Genève World Health Organization (2016) Planning and implementing palliative care services: a guide for programme managers, 2e éd. Organisation mondiale de la Santé, Genève
Metadata
Title
Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia
Authors
Jakob Meglič
Ajda Lisec
Dušanka Lepej
Tanja Loboda
Sara Bertok
Petra Lešnik Musek
Ivana Kreft Hausmeister
Majda Oštir
Tehvida Ponjević
Anamarija Meglič
Publication date
21-01-2023
Publisher
Springer Berlin Heidelberg
Keyword
Care
Published in
European Journal of Pediatrics / Issue 3/2023
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI
https://doi.org/10.1007/s00431-023-04806-7

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