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Children
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Specialized Pediatric Palliative Care: In-Hospital, Homecare and Intersectoral Demands
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Specialized Pediatric Palliative Care: In-Hospital, Homecare and Intersectoral Demands

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Anesthesiology, Pain Medicine and Palliative Care".

Deadline for manuscript submissions: 10 April 2026 | Viewed by 1015

Special Issue Editors

Prof. Dr. Ulrika Kreicbergs

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Guest Editor
Population, Policy & Practice Department, University College London, London, UK
Interests: palliative care for children and young people
Prof. Dr. Eduard Verhagen

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Guest Editor
Department of Paediatrics, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands
Interests: pediatric quality of living and dying; pediatric palliative care
Prof. Dr. Boris Zernikow

E-Mail Website
Guest Editor
1. German Paediatric Pain Centre, Children’s and Adolescents’ Hospital Datteln, Witten/Herdecke University, 45711 Datteln, Germany
2. Children’s Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, 45711 Datteln, Germany
Interests: pain management; migraine; palliative medicine; pain medicine
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

Worldwide, more than 20 million children are in need of pediatric palliative care (PPC). Pediatric patients suffer from a broad spectrum of life-limiting conditions, most of which are rare diseases. The unit of care comprises the whole family, not just the affected child. PPC should be delivered by an interprofessional team in different healthcare settings like the school, in society, and in primary, secondary or tertiary care. The goals of PPC are symptom control as well as social, spiritual, and emotional support to improve and stabilize the quality of life. PPC is a holistic care approach.

Typically, three levels of PPC are defined. Level 1 is called the palliative care approach and means that palliative care principles are appropriately applied by all healthcare professionals. Level 2 is a general palliative care approach delivered by professionals with basic PPC training. Level 3 is the highest PPC level with specialist professionals in PPC working in specialized PPC services—PPC is their core activity.

This Special Issue should attract manuscripts on Level 3, specialized pediatric palliative care delivered in-hospital as well as at home with a special focus on intersectoral demands.

Prof. Dr. Ulrika Kreicbergs
Prof. Dr. Eduard Verhagen
Prof. Dr. Boris Zernikow
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 250 words) can be sent to the Editorial Office for assessment.

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

  • pediatric palliative care
  • children’s hospice
  • hospital
  • palliative care unit
  • quality of life
  • family
  • symptom management
  • neonatal palliative care

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Published Papers (3 papers)

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Research

12 pages, 963 KB  
Article
Training Healthcare Assistants for School-Based Care of Children Receiving Paediatric Palliative Care: A Post-Training Evaluation
by Anna Santini, Anna Marinetto, Enrica Grigolon, Alessandra Fasson, Mirella Schiavon, Igor D’angelo, Nicoletta Moro, Barbara Roverato, Pierina Lazzarin and Franca Benini
Children 2026, 13(1), 153; https://doi.org/10.3390/children13010153 - 22 Jan 2026
Viewed by 119
Abstract
Background/Objectives: Children in paediatric palliative care often face school attendance barriers due to complex health needs. This study describes post-training perceptions of a training program by a pediatric hospice team to prepare school care assistants to safely include children with complex conditions, [...] Read more.
Background/Objectives: Children in paediatric palliative care often face school attendance barriers due to complex health needs. This study describes post-training perceptions of a training program by a pediatric hospice team to prepare school care assistants to safely include children with complex conditions, focusing on procedural skills, knowledge of the child, and family partnership. Methods: Care assistants who completed a structured course at the Paediatric Palliative Care Centre, University Hospital of Padua (2023–2024), were surveyed immediately after training. The program combined classroom instruction with hands-on simulation using high-fidelity mannequins and standard devices, including suction, pulse oximetry, ventilation, enteral feeding, and tracheostomy care. It also covered modules on urgent and emergency management, as well as family communication. An anonymous online questionnaire gathered socio-demographic data, prior training, clinical tasks performed, self-efficacy levels, and open-ended feedback. Quantitative results were analyzed descriptively, while qualitative comments were subjected to thematic analysis. Results: Of 130 invited assistants, 105 participated (81%). Participants reported strong perceived confidence: 85% selected the upper end of the 5-point scale (“very” or “extremely”) for routine-management ability, and 60% selected these same response options for emergency-management ability. In the most severe events recalled, 60.5% of incidents were resolved autonomously, 7.6% involved contacting emergency services, and 3.8% involved community or hospice nurses. Seventy-five percent judged the course comprehensive; thematic analysis of 102 comments identified satisfaction, requests for regular refreshers, stronger practical components, and requests for targeted topics. Conclusions: Immediately after the session, participants tended to select the upper end of the self-assurance item for both routine and emergency tasks. Combining core emergency procedures with personalized, child-specific modules and family-partnership training may support safety, trust, and inclusion. Regular refreshers and skills checks are advised. Full article
(This article belongs to the Special Issue Specialized Pediatric Palliative Care: In-Hospital, Homecare and Intersectoral Demands)
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17 pages, 751 KB  
Article
Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study
by Anna Santini, Anna Marinetto, Danai Papadatou and Franca Benini
Children 2026, 13(1), 119; https://doi.org/10.3390/children13010119 - 13 Jan 2026
Viewed by 197
Abstract
Background/Objectives: Within Paediatric Palliative Care (PPC), motherhood in the context of severe cognitive impairment is shaped by unique emotional, relational, and identity-related challenges. Traditional understandings of maternal identity are strained when verbal communication and typical developmental milestones are absent. Although caregiving in [...] Read more.
Background/Objectives: Within Paediatric Palliative Care (PPC), motherhood in the context of severe cognitive impairment is shaped by unique emotional, relational, and identity-related challenges. Traditional understandings of maternal identity are strained when verbal communication and typical developmental milestones are absent. Although caregiving in PPC has been widely studied, the subjective and symbolic dimensions of motherhood in this setting have received far less attention. This study sought to explore how mothers construct, interpret, and make sense of their maternal identity while caring for a child with severe cognitive impairment in a PPC context, and to underscore the clinical relevance of these identity-related processes. Methods: A qualitative study was conducted involving nine mothers of children receiving paediatric palliative care services at a regional centre in Italy. Participants engaged in three online focus groups, totalling 270 min. Reflexive thematic analysis was employed to interpret the transcribed data, using ATLAS.ti software, version 25.0.1 ATLAS.ti Scientific Software Development GmbH, Berlin, Germany, for support. Member reflections were incorporated to validate the findings. Results: Three interconnected themes emerged from the reflexive thematic analysis. First, mothers described the development of a fusion-like, enmeshed mother–child relationship, characterised by embodied attunement, specialised interpretive expertise, and lifelong care dependency. Second, mothers detailed the construction of their maternal role, shaped by emotional labour, identity negotiation, sacrifice, loneliness, and peer support, alongside the construction of the child’s role, in which children were perceived as unique, symbolically meaningful beings whose social presence and limited reciprocity shaped maternal identity. Third, mothers articulated a search for meaning that sustained them throughout the caregiving journey, reframing their experience within a broader existential and relational perspective. Conclusions: Maternal caregiving in PPC encompasses distinct emotional, relational, and symbolic dimensions that extend beyond conventional understandings of motherhood. Grasping these identity-related dynamics has direct clinical relevance: it enables more attuned communication, strengthens the therapeutic alliance, and supports personalised, meaning-oriented care. These insights highlight the need for tailored interventions and further qualitative research to inform health care professionals and interdisciplinary practice. Full article
(This article belongs to the Special Issue Specialized Pediatric Palliative Care: In-Hospital, Homecare and Intersectoral Demands)
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12 pages, 1298 KB  
Article
Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care
by Pia Schmidt, Julia Wager, Gina Warrender, Dörte Garske, Andrea Beissenhirtz, Boris Zernikow and Larissa Kubek
Children 2025, 12(12), 1606; https://doi.org/10.3390/children12121606 - 26 Nov 2025
Viewed by 443
Abstract
Background: In light of the increasing importance of measuring, assuring, and improving the quality of care, this study aimed to evaluate the outcome of care provided at a specialized inpatient PPC unit in consideration of the three PPC core treatment goals: (i) [...] Read more.
Background: In light of the increasing importance of measuring, assuring, and improving the quality of care, this study aimed to evaluate the outcome of care provided at a specialized inpatient PPC unit in consideration of the three PPC core treatment goals: (i) reduction in symptom burden, (ii) improvement of the quality of life, and (iii) strengthening caregiver competency. Methods: Prospective single-center study. Data were collected using the QUASI, a shorter version of the validated FAmily-CEnTered multidimenSional Outcome measure For Pediatric Palliative Care (FACETS-OF-PPC). From 20 October 2020 to 31 December 2024, QUASI was completed by nurses at admission (pre-survey) to an 8-bed specialized inpatient PPC unit and again on the day of discharge (post-survey). Descriptive statistics and the Wilcoxon signed-rank test were used to identify differences between pre- and post-surveys. In addition to outcome evaluation, psychometric properties of the Caregiver Competencies subscale were assessed (internal consistency and confirmatory factor analysis). Results: Pre- and post-data of n = 574 patients have been assessed. Among patients with initially high symptom load, significant improvement in all assessed symptoms could be achieved. Patients with initially low symptom load showed significant improvements in agitation (p = 0.043), pain (p < 0.001), sleep disturbances (p < 0.001), and other symptoms (p = 0.015). Mean scores for the items regarding quality of life also improved significantly between admission and discharge. Caregiver’s competency also increased significantly (p < 0.001). Conclusions: Findings suggest that the QUASI can serve as a feasible approach for documenting PPC quality, as it covers core dimensions of PPC very effectively, with the potential to inform clinical practice. Further validation is warranted. Full article
(This article belongs to the Special Issue Specialized Pediatric Palliative Care: In-Hospital, Homecare and Intersectoral Demands)
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