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Children
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Palliative Care for Childhood Cancer
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Palliative Care for Childhood Cancer

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Oncology and Hematology".

Deadline for manuscript submissions: closed (15 November 2021) | Viewed by 11484

Special Issue Editor

Dr. Erna Michiels

E-Mail Website
Guest Editor
Princess Máxima Center for Pediatric Oncology, 3584 CS Utrecht, The Netherlands
Interests: palliative care; pain; advance care planning

Special Issue Information

Dear Colleagues,

In the pediatric oncology world, the field of pediatric palliative care is rapidly evolving. More and more pediatric oncology teams are becoming aware of the advantages of early integration of palliative care, even when the goal of care is still curative. Pediatric palliative care is shifting from merely terminal care to care for quality of life during the whole course of treatment. More focus is put on advance care planning, shared decision making, excellent symptom management, high-quality end-of-life care, avoidance of high-intensity treatment in the terminal phase of the illness, and bereavement care, to name just a few.

This Special Issue’s primary focus is on all aspects of pediatric palliative care that may have an impact on pediatric oncology, with a special interest in advance care planning, symptom management, and bereavement, for despite the relentless effort of champions of pediatric palliative care, quality of care in pediatric oncology can still be improved, especially for those with a dismal prognosis.

Dr. Erna Michiels
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • Palliative care
  • Pediatric oncology 
  • Advance care planning 
  • Shared decision making 
  • End of life
  • Quality of life 
  • Communication 
  • Bereavement 
  • Palliative oncology 
  • Pediatric pain 
  • Symptoms

Published Papers (5 papers)

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Editorial

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2 pages, 157 KiB  
Editorial
Palliative Care for Childhood Cancer
by Erna M. Michiels
Children 2022, 9(6), 777; https://0-doi-org.brum.beds.ac.uk/10.3390/children9060777 - 25 May 2022
Viewed by 1090
Abstract
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...] Full article
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)

Research

Jump to: Editorial

8 pages, 1014 KiB  
Article
Development of the Dutch Structure for Integrated Children’s Palliative Care
by Stephanie Vallianatos, Carolien S. M. Huizinga, Meggi A. Schuiling-Otten, Antoinette Y. N. Schouten-van Meeteren, Leontien C. M. Kremer and A. A. Eduard Verhagen
Children 2021, 8(9), 741; https://0-doi-org.brum.beds.ac.uk/10.3390/children8090741 - 27 Aug 2021
Cited by 7 | Viewed by 2198
Abstract
Children’s palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children’s Palliative Expertise (PAL) was established as a nationwide [...] Read more.
Children’s palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children’s Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children’s university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, ‘palliative care for children’, provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician’s support centre for dilemma’s regarding the end of life of children was set up. The efforts to have children’s palliative care embedded in the regular Dutch health care insurance are ongoing. Full article
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)
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10 pages, 349 KiB  
Article
Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective
by Donna S. Zhukovsky, Cathy L. Rozmus, Rhonda Robert, Eduardo Bruera, Robert J. Wells and Marlene Z. Cohen
Children 2021, 8(8), 657; https://0-doi-org.brum.beds.ac.uk/10.3390/children8080657 - 29 Jul 2021
Cited by 4 | Viewed by 2148
Abstract
Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the [...] Read more.
Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child–parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readily described the impact symptoms and cancer treatment had on their lives and relationships. These findings underscore the salient aspects of daily life disrupted by cancer. With a deeper understanding of symptom burden and its interference, relationship and communication implications, and anticipatory grief, the treating team may better optimize care for children and their families living with advanced cancer. Full article
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)
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12 pages, 629 KiB  
Article
Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers
by Hilda Mekelenkamp, Teija Schröder, Eugenia Trigoso, Daphna Hutt, Jacques-Emmanuel Galimard, Anne Kozijn, Arnaud Dalissier, Marjola Gjergji, Sarah Liptrott, Michelle Kenyon, John Murray, Selim Corbacioglu, Peter Bader, on behalf of the EBMT-Nurses Group and Paediatric Diseases Working Party
Children 2021, 8(8), 615; https://0-doi-org.brum.beds.ac.uk/10.3390/children8080615 - 21 Jul 2021
Cited by 4 | Viewed by 2788
Abstract
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place [...] Read more.
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation. Full article
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)
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10 pages, 975 KiB  
Article
Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care
by Fanni Baumann, Steven Hebert, Wolfgang Rascher, Joachim Woelfle and Chara Gravou-Apostolatou
Children 2021, 8(6), 523; https://0-doi-org.brum.beds.ac.uk/10.3390/children8060523 - 19 Jun 2021
Cited by 4 | Viewed by 2309
Abstract
Background: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying disease. Methods: Findings are based on [...] Read more.
Background: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying disease. Methods: Findings are based on a 4.5-year retrospective study of 89 children who received palliative care before they died, investigating the symptomatology of the last two weeks before death. Results: In this study, the most common clinical symptomatology present in children undergoing end-of-life care includes pain, shortness of breath, anxiety, nausea, and constipation. Out of 89 patients included in this study, 47% suffered from an oncological disease. Oncological patients had a significantly higher symptom burden at the end of life (p < 0.05) compared to other groups, and the intensity of symptoms increased as the underlying disease progressed. The likelihood of experiencing pain and nausea/vomiting was also significantly higher in oncological patients (p = 0.016). Conclusions: We found that the underlying disease is associated with marked differences in the respective leading clinical symptom. Therefore, related to these differences, symptom management has to be adjusted according to the underlying disease, since the underlying disorder seems to exert an influence on the severity of symptoms and thereby on the modality and choice of treatment. This study is intended to aid underlying disease-specific symptom management at the end-of-life care for children, adolescents, and young adults, with a specific focus on end-of-life care in a home environment. Full article
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)
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