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Children
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Palliative and End-of-Life Care in Pediatrics
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Palliative and End-of-Life Care in Pediatrics

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

Deadline for manuscript submissions: closed (30 November 2024) | Viewed by 13921

Special Issue Editors

Dr. Holger Hauch

E-Mail Website
Guest Editor
Department of Children's Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany
Interests: home-based palliative care; pediatrics; cancer; end-of-life-care
Dr. Julia Wager

E-Mail Website
Guest Editor
1. German Paediatric Pain Center, Children’s and Adolescents’ Hospital, Datteln, Germany
2. Department of Children’s Pain Therapy and Paediatric Palliative Care, Faculty of Health, Witten/Herdecke University School of Medicine, Witten, Germany
Interests: pain management; clinical psychology; health psychology; pain medicine; public health; pain assessment; anaesthesiology; anesthesiology; palliative medicine; health literacy

Special Issue Information

Dear Colleagues,

In the UK, a rising prevalence of children and adolescents with life-limiting diseases has been reported. Thus, there is a need for increasing care in both the in- and outpatient sectors. Especially in end-of-life care, children with life-limiting diseases can suffer from various symptoms, which can have a negative effect on the quality of life This Special Issue invites you to contribute original research articles and reviews on “Palliative and End-of-Life Care in Pediatrics”. The editors are delighted to review manuscripts which focus on symptom management, psychological aspects of care, special needs and problems in end-of-life care with all the perspectives of a multidisciplinary team. If you would like to contribute, please feel free to contact us.

Dr. Holger Hauch
Dr. Julia Wager
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

  • end-of-life care
  • palliative home care
  • pediatric palliative care
  • pediatric oncology
  • cancer
  • psychological aspects of care

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Published Papers (6 papers)

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Research

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16 pages, 940 KiB  
Article
Wish-Granting Interventions Promote Positive Emotions in Both the Short and Long Term in Children with Critical Illnesses and Their Families
by Hannah Roberts, Jenny Cook, Apple Lee, Wei Kok Loh, Nigel Teo, Joanne Su Yin Yoong and Marguerite Gorter-Stam
Children 2025, 12(1), 47; https://doi.org/10.3390/children12010047 - 30 Dec 2024
Viewed by 5131
Abstract
Background: Wish-granting interventions are recognized as positive experiences for children with critical illness and their families. While the positive effects have been shown in the immediate and short term, data on their long-term effects are lacking. Objectives: To evaluate the effects of wish-granting [...] Read more.
Background: Wish-granting interventions are recognized as positive experiences for children with critical illness and their families. While the positive effects have been shown in the immediate and short term, data on their long-term effects are lacking. Objectives: To evaluate the effects of wish-granting interventions on children and parents during and post intervention—both in the weeks after, and up to 5 years after—and to examine any differences between these two groups. Methods: A large-scale international survey was distributed to children (aged 13–17 years old in 2023) and their parents across 24 countries who received a wish-granting intervention in the preceding five years by Make-A-Wish Foundation International. Primary outcomes were positive emotions experienced by children and parents during and after the intervention (short term and long term). The secondary outcomes assessed were negative emotions in wish children, and to what extent children and parents felt the intervention created a sense of normalcy, benefitted other family members, created a happy memory, and gave relief from medical treatment, plus the perceived importance of wish-granting interventions. Results: The responses of 535 children and 1062 parents were analyzed. Both groups reported increases in positive emotions during the early intervention stages, peaking when the wish was granted and persisting in the short and long term. No significant differences were found between children and parents during wish-granting or after the intervention. Negative emotions were reported by a minority of children. Over 80% of children and parents felt the intervention created a happy memory and provided relief from their medical treatments. Nearly all children (96.8%) and parents (95.4%) viewed a wish-granting intervention as important for children with a critical illness. Conclusions: Wish-granting interventions can provide positive emotional benefits to both children and their families in both the short and long term. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)
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18 pages, 266 KiB  
Article
Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data
by Sarah Potter, Sandra Coombs and Tiina Jaaniste
Children 2025, 12(1), 4; https://doi.org/10.3390/children12010004 - 24 Dec 2024
Viewed by 964
Abstract
Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biography program to a pediatric palliative care context [...] Read more.
Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biography program to a pediatric palliative care context is less well known. Methods: A narrative review of the literature was conducted, drawing on existing adult biography programs, while noting differences between the pediatric and adult contexts. The Story Project is outlined in this manuscript as an example of a pediatric biography writing approach, with pilot survey data from six volunteer biographers presented. Thematic analysis was conducted on qualitative data elicited from volunteer biographers regarding challenges experienced and the perceived benefits of the program. Descriptive information is provided for other aspects of their experience of the Story Project. Results: The challenges identified by the volunteer biographers were grouped into seven themes, namely, (1) delays encountered, (2) rapport/interactions with family, (3) family distress, (4) logistics, (5) transcribing-specific issues, (6) identifying themes, and (7) finalizing the biography. The perceived benefits of the Story Project, as perceived by the volunteer biographers, were grouped into four main themes: (1) beneficial processes for families, (2) benefits for the volunteers, (3) intrinsic value of the final product, and (4) beneficial uses of the product. Biographies took between 3–20 months to complete, with most taking 12 months or less. Conclusions: Biography writing is a potentially valuable approach for use with pediatric palliative care patients and their families, with the Story Project being one example of such an intervention, with promising early feasibility data. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)
13 pages, 843 KiB  
Article
Utilization and Evaluation of Ethics Consultation Services in Neonatal Intensive Care
by Pia Göbert, Pia von Blanckenburg, Rolf F. Maier and Carola Seifart
Children 2024, 11(11), 1349; https://doi.org/10.3390/children11111349 - 4 Nov 2024
Viewed by 1082
Abstract
Background: The opportunities of perinatal medicine have improved, but this has also been accompanied by increasing ethical challenges. Clinical ethics consultation services (CEC) could support medical teams facing these. However, nothing is currently known about the availability, utilization and evaluation of CEC in [...] Read more.
Background: The opportunities of perinatal medicine have improved, but this has also been accompanied by increasing ethical challenges. Clinical ethics consultation services (CEC) could support medical teams facing these. However, nothing is currently known about the availability, utilization and evaluation of CEC in German neonatology units. Methods: This study was designed as a national, descriptive, mixed quantitative–qualitative questionnaire study. The head physicians of the pediatric departments and the heads (medical and nursing) of the corresponding neonatal intensive care units of the 213 German perinatal centers were asked to participate. Results: Ninety percent of the respondents (responding rate 24.4–38.0%) stated that CEC are established and available. However, utilization is rather low [rarely N = 40 (54.1%), never N = 12, (16.2%), occasionally N = 19 (25.7%)], although it was rated as very helpful. There was a significant correlation between utilization and perceived general usefulness (r = 0.224, p = 0.033) and support (r = 0.41, p < 0.001); whereas evaluations differed significantly between professional groups (t = −2.298, p = 0.23, Cohen’s d = 0.42). Conclusions: The contradiction between the low utilization despite positive evaluations could be related to perceived hurdles. These and the different perceptions within the professional groups give rise to the consideration of whether alternative approaches, e.g., liaison services, would be preferable in neonatology. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)
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12 pages, 1291 KiB  
Article
Dronabinol Is Not a Game Changer in Pediatric Palliative Care: Results from a Retrospective Study
by Holger Hauch, Annika Lisakowski, Julia Wager and Boris Zernikow
Children 2024, 11(9), 1054; https://doi.org/10.3390/children11091054 - 28 Aug 2024
Viewed by 1259
Abstract
Background/Objectives: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are limited to outpatients. The aim of this study was to [...] Read more.
Background/Objectives: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are limited to outpatients. The aim of this study was to assess the efficacy and safety of DRB. Methods: Retrospective analysis of inpatients. Results: From 2011 to 2021, 1219 patients were admitted. Of these, 63 patients (63.5% male, age: 10.4 (SD = 6.3) years) were treated with DRB; 96.8% had a neurological disease, and 26 patients were started on DRB (group A), while 37 were admitted with existing DRB (group B). The effective doses were 0.21 (SD = 0.11) in group A and 0.48 (SD = 0.5) mg/kg/BW/day in group B (p = 0.01). Subjective response rates to DRB in both groups (good/moderate effect) were 9.5%/38.1% for spasticity and 1.6%/25.4% for restlessness. However, no reduction in seizures, restlessness, or demand medication was observed in 24 h protocols when patients started DRB in group A. Three patients experienced severe side effects (e.g., respiratory depression). Other side effects included fatigue (22.2%) and behavioral problems (14.3%). Conclusions: Subjective positive effects could not be confirmed by more objective data. Side effects can be severe. Thus, DRB should be started in a well-monitored setting and only with clear indications. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)
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12 pages, 226 KiB  
Article
The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
by Chantal Y. Joren, Judith L. Aris-Meijer, Leontien C. M. Kremer, Suzanne C. Hofman, Hester Rippen-Wagner, Ria Slingerland-Blom, Chantal van der Velden, Meggi A. Schuiling-Otten, Project Team ICP, A. A. Eduard Verhagen and Marijke C. Kars
Children 2024, 11(8), 967; https://doi.org/10.3390/children11080967 - 11 Aug 2024
Cited by 1 | Viewed by 1732
Abstract
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the [...] Read more.
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)

Review

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16 pages, 657 KiB  
Review
Quality of Care in Pediatric Palliative Care: A Scoping Review
by Tania Ruiz-Gil and Francisco Ródenas-Rigla
Children 2023, 10(12), 1922; https://doi.org/10.3390/children10121922 - 13 Dec 2023
Cited by 2 | Viewed by 2792
Abstract
Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed [...] Read more.
Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed to identify the variables associated with the quality of care of PPC patients in Spain, focusing specifically on three areas: structure and process of care, psychological aspects of care, and care of patients approaching the end of life. The review was conducted following PRISMA-ScR guidelines. Searches were performed in the PubMed, Scopus, Web of Science, Embase, ProQuest, and Dialnet databases covering the period extending from January 2000 to May 2023. Finally, 35 studies were identified for the complete review. A total of 30 studies include variables associated with the structure and process of care, 20 include variables associated with psychological aspects of care, and 23 studies integrate variables related to patient care at the end of life. Analysis suggests that enhancing professional training in aspects such as communication with patients and families, creating intimate spaces with flexible visiting hours, increasing emotional support, promoting frequent contact with healthcare teams, and transparently communicating about illness and imminent death to both families and minors could improve the quality of PPC. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care in Pediatrics)
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