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Children
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Recent Advances in Pediatric Palliative Home Care
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Recent Advances in Pediatric Palliative Home Care

A special issue of Children (ISSN 2227-9067).

Deadline for manuscript submissions: 1 June 2024 | Viewed by 7477

Special Issue Editor

Dr. Anthony Herbert

E-Mail Website
Guest Editor
1. Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Queensland Children's Hospital, South Brisbane, QLD 4101, Australia
2. Centre for Children’s Health Research, Queensland University of Technology, South Brisbane, QLD 4101, Australia
Interests: paediatric palliative care

Special Issue Information

Dear Colleagues,

Children and adolescents with life-limiting diseases suffer from various symptoms at the end of their lives, which can impact quality of life and cause suffering. This extends to the whole family system, including siblings. Symptoms that can cause distress, including pain, agitation, anxiety, fatigue, seizures, and various gastrointestinal symptoms (e.g., feed intolerance, anorexia, nausea, and vomiting).  In recent years, there has been increasing capacity to support children receiving palliative care at home. Palliative care at home has a number of benefits, including less disruption to family life, freedom from the hospital environment, freedom to have visitors at any time, and the child’s own preferences, including food and parental choice.  One benefit of being at home includes the parents' ability to be more particular about the timing of analgesia; however, it can be difficult to provide  nursing care and access to clinical staff for 24 hours a day, 7 days a week at home. In this context there can be benefits of being cared for in a tertiary children’s hospital, a hospital close to home, or a children’s hospice. Elements of home life can still be integrated into both hospital and hospice settings. This is especially the case for children’s hospices. This Special Issue invites you to contribute original research articles and reviews on “pediatric palliative home care”. If you would like to contribute, please feel free to contact us.

Dr. Anthony Herbert
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

  • children
  • adolescents
  • palliative home care
  • pain
  • life-limiting
  • end-of-life care

Published Papers (4 papers)

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Research

11 pages, 687 KiB  
Article
The Use of Cannabinoids in Pediatric Palliative Care—A Retrospective Single-Center Analysis
by David Tagsold, Irmgard Toni, Regina Trollmann, Joachim Woelfle and Chara Gravou-Apostolatou
Children 2024, 11(2), 234; https://0-doi-org.brum.beds.ac.uk/10.3390/children11020234 - 11 Feb 2024
Viewed by 1616
Abstract
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics [...] Read more.
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens. Full article
(This article belongs to the Special Issue Recent Advances in Pediatric Palliative Home Care)
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13 pages, 239 KiB  
Article
Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care
by Michelle Noyes, Angela Delaney, Meagan Lang, Mellissa Maybury, Susan Moloney and Natalie Bradford
Children 2023, 10(11), 1777; https://0-doi-org.brum.beds.ac.uk/10.3390/children10111777 - 02 Nov 2023
Viewed by 1239
Abstract
Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks [...] Read more.
Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind’s Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts. Full article
(This article belongs to the Special Issue Recent Advances in Pediatric Palliative Home Care)
16 pages, 1609 KiB  
Article
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
by Jannik Zimmermann, Marie Luise Heilmann, Manuel Fisch-Jessen, Holger Hauch, Sebastian Kruempelmann, Heidi Moeller, Laura Nagel, Michaela Nathrath, Vera Vaillant, Thomas Voelker and Merlin Jonas Deckers
Children 2023, 10(8), 1315; https://0-doi-org.brum.beds.ac.uk/10.3390/children10081315 - 30 Jul 2023
Cited by 1 | Viewed by 1121
Abstract
Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use [...] Read more.
Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC. Full article
(This article belongs to the Special Issue Recent Advances in Pediatric Palliative Home Care)
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16 pages, 803 KiB  
Article
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
by Marie Friedel, Isabelle Aujoulat, Bénédicte Brichard, Christine Fonteyne, Marleen Renard and Jean-Marie Degryse
Children 2023, 10(7), 1167; https://0-doi-org.brum.beds.ac.uk/10.3390/children10071167 - 05 Jul 2023
Cited by 2 | Viewed by 2666
Abstract
Background: Paediatric palliative care (PPC) aims to improve children’s quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening [...] Read more.
Background: Paediatric palliative care (PPC) aims to improve children’s quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. Methods: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale—version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. Results: 73 children aged 1–18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child’s condition’s severity. Conclusions: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium. Full article
(This article belongs to the Special Issue Recent Advances in Pediatric Palliative Home Care)
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