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Palliative Care for the Youngest: Hot Topics in Perinatal and...
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Palliative Care for the Youngest: Hot Topics in Perinatal and Neonatal Palliative Care across the Globe

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Neonatology".

Deadline for manuscript submissions: closed (5 January 2024) | Viewed by 8699

Special Issue Editors

Dr. Eva Bergstraesser

E-Mail Website
Guest Editor
Paediatric Palliative Care and Children’s Research Center CRC, University Children’s Hospital Zurich, Steinwiesstrasse 75, 8032 Zurich, Switzerland
Interests: palliative care in paediatrics; defining palliative care needs in children with life-limiting conditions; care planning and decision making; bereavement
Dr. Deborah Gubler

E-Mail Website
Guest Editor
1. Paediatric Palliative Care and Children’s Research Center CRC, University Children’s Hospital Zurich, Steinwiesstrasse 75, 8032 Zurich, Switzerland
2. Newborn Research, Department of Neonatology, University Hospital and University of Zurich, Frauenklinikstrasse 10, 8091 Zurich, Switzerland
Interests: Palliative Care in Paediatrics; Palliative Care in Perinatology, Neonatology and Infancy; identification of palliative care needs in children with life-limiting conditions; communication, care planning and decision-making; development of and implementation processes in the field in Switzerland and internationally

Special Issue Information

Dear Colleagues,

From the millions of children across the world with paediatric palliative care (PPC) needs, neonates and infants make up a large subgroup in many countries. These children often have diagnoses linked with a short life span, leading to death within the first year of life.

The first signs of a palliative condition may be detected in utero. Diagnosis and prognosis in this population are challenging.

Additionally, the best possible care needs to be provided to the mother, who has a close bond with the severely ill child. Beyond physical care, fathers, siblings and other close persons are emotionally involved and may need support.

This physical, psycho-social and spiritual care remains important beyond the child’s death.

In this Special Issue, we aim to address the following questions:

Palliative care for the youngest—what are the advances in screening for PPC needs?

How has the population changed over the last 1–2 decades? How have advances in medical technology affected this change?

How can parents be guided in the decision-making process beginning at diagnosis? What role does prognosis play in counselling families?

What must specialised PPC offer expectant/young mothers?

How does specialised PPC for the youngest differ between countries?

Are there new insights into symptom management?

We hope to provide clinicians additional evidence of and insights into the care of these patients and their families through a broad interdisciplinary selection of authors.

Dr. Eva Bergstraesser
Dr. Deborah Gubler
Guest Editors

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

  • perinatal palliative care
  • neonatal palliative care
  • screening
  • diagnosis
  • prognosis

Published Papers (4 papers)

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Research

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12 pages, 1352 KiB  
Article
Palliative Care in the Delivery Room: Challenges and Recommendations
by Lars Garten and Kerstin von der Hude
Children 2023, 10(1), 15; https://doi.org/10.3390/children10010015 - 21 Dec 2022
Cited by 2 | Viewed by 2657
Abstract
Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many [...] Read more.
Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room. It offers orientation along with a preliminary set of practical recommendations regarding the following central issues: (i) the basic elements of perinatal palliative care, (ii) the range of non-pharmacological and pharmacological interventions available for infant symptom control near the end of life, (iii) meeting the personal psychological, emotional, and spiritual needs of the parents, and (iv) care and self-care for medical personnel. Full article
(This article belongs to the Special Issue Palliative Care for the Youngest: Hot Topics in Perinatal and Neonatal Palliative Care across the Globe)
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16 pages, 314 KiB  
Article
The Path Is Made by Walking—Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study
by Kerstin Hein, Franziska Flaig, Annika Schramm, Gian Domenico Borasio and Monika Führer
Children 2022, 9(10), 1555; https://doi.org/10.3390/children9101555 - 13 Oct 2022
Cited by 3 | Viewed by 1387
Abstract
In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements [...] Read more.
In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña’s Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives. Full article
(This article belongs to the Special Issue Palliative Care for the Youngest: Hot Topics in Perinatal and Neonatal Palliative Care across the Globe)

Review

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12 pages, 270 KiB  
Review
Psychosocial Support within the Context of Perinatal Palliative Care: The “SORROWFUL” Model
by Kerstin von der Hude and Lars Garten
Children 2023, 10(1), 38; https://doi.org/10.3390/children10010038 - 25 Dec 2022
Cited by 2 | Viewed by 1585
Abstract
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model “SORROWFUL” is presented here with the intent to highlight the significance of the death of a newborn for the affected family. [...] Read more.
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model “SORROWFUL” is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources. Full article
(This article belongs to the Special Issue Palliative Care for the Youngest: Hot Topics in Perinatal and Neonatal Palliative Care across the Globe)

Other

Jump to: Research, Review

32 pages, 1309 KiB  
Systematic Review
Components of Perinatal Palliative Care: An Integrative Review
by Laure Dombrecht, Kenneth Chambaere, Kim Beernaert, Ellen Roets, Mona De Vilder De Keyser, Gaëlle De Smet, Kristien Roelens and Filip Cools
Children 2023, 10(3), 482; https://doi.org/10.3390/children10030482 - 01 Mar 2023
Cited by 7 | Viewed by 2291
Abstract
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An [...] Read more.
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking. Full article
(This article belongs to the Special Issue Palliative Care for the Youngest: Hot Topics in Perinatal and Neonatal Palliative Care across the Globe)
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