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32 result(s) for "Friedel, Marie"
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Experiences of growth among nurses caring for children with life-limiting conditions: insights from a narrative review
BackgroundCaring for children with life-limiting conditions (LLCs) is emotionally and existentially demanding for nurses. While much research emphasises distress, burnout and moral challenges, less attention has been focused on the potential for personal and professional growth resulting from these experiences. This narrative review synthesises qualitative research on personal and professional growth among nurses caring for children with LLCs.MethodsA narrative literature review was conducted across Medline, CINAHL, Web of Science, PsycINFO and PubMed (2005–2025). The review included qualitative and mixed-methods studies focusing on nurses’ growth experiences in caring for children with LLC in various settings. Data were extracted and analysed inductively using thematic analysis, supported by narrative synthesis. Methodological quality was appraised using the critical appraisal skills programme (CASP) tool.ResultsSeventeen studies from diverse global contexts were included. CASP appraisal indicated moderate–high quality across included studies. Six themes and thirteen subthemes reflected multidimensional growth, encompassing existential and life perspective changes, emotional and psychological development, professional identity, relational enrichment, meaning-based, and spiritual and transcendent transformation. Growth often emerged implicitly, rather than as the primary focus of included studies. The findings resonate with established theoretical frameworks, highlighting growth as both an outcome of adversity and as embedded in caring relationships and reflective learning.ConclusionNurses caring for children with LLCs undergo multidimensional growth that enhances well-being and strengthens the quality of care they provide. Supporting these processes through reflective practice, education and institutional strategies may foster resilience, improve retention and elevate the quality of paediatric palliative care.
Exploring pediatric palliative care in Luxembourg: a mixed-methods study
Background An estimated 170,000 children in the WHO European Region have no access to palliative care annually. In Luxembourg, there is a lack of data on children needing palliative care, and the existing structure appears limited. This study aims to assess the current state of pediatric palliative care in Luxembourg. Methods We used a parallel convergent mixed-methods approach, collecting qualitative and quantitative data simultaneously and analyzing them independently. Snowball and purposive sampling methods were employed. The qualitative data, including documents, email correspondence, and open-ended interviews with participants caring for children with life-limiting or life-threatening conditions, followed the COREQ guidelines and were analyzed using thematic analysis. Quantitative data were analyzed using both descriptive and inferential statistical methods. Results The analysis highlights a significant gap in the provision of care at all levels of pediatric palliative care in Luxembourg. Approximately 500 to 600 children up to 19 years old require palliative care each year, which exceeds previous estimates. Existing legal frameworks are predominantly designed for adults and end-of-life care, and do not sufficiently address the holistic needs of children requiring palliative care and their families. Homecare services are in the early development phase, and specialized pediatric palliative care options are limited across all levels. A pediatric palliative care course, set to be introduced in 2025 for university pediatric nursing students as outlined in the national plan, aims to address some of these gaps by developing competencies. However, until sufficient specialized care is established, many children are transferred to neighboring countries where there are better resources and expertise or remain at home, receiving limited services. Conclusion This study presents, for the first time, data on pediatric palliative care in Luxembourg, with a focus on service availability, the legal framework, and the estimated number of children requiring care. The findings highlight the urgent need for a structured pediatric palliative care service to address this country’s growing demand and unmet needs. In addition, it is essential to support the implementation of the “ National Plan for End of Life and Palliative Care ” from 2023 to 2026, which includes a dedicated focus on children.
Children’s palliative care and public health: position statement
A public health approach to palliative care has been developed in adult palliative care over several years. Despite the concepts of health and wellbeing, and palliation, dying and death appearing at first to be contradictory, a cogent argument has been made to understand palliative care in the context of promoting public health. However, the application to children’s palliative care has not been articulated in depth. The need for and development of children’s palliative care is well documented globally, with the public health model, and more recently the WHO conceptual model for palliative care development being key to ongoing development and progress in service delivery. Engaging communities to influence care provision is essential and important to ensure provision of appropriate and sustainable care. Positioning children’s palliative care within the public health perspective transforms care and service provision and centres around the child, their childhood and their carers, as part of the community and the wider population. Access to healthcare is vital, of course, but so is access to childhoods which guarantee children’s human rights and access to being a child living a childhood, whether that childhood is long, short or leads to an adulthood. Uncovering differing perspectives on the intersection of public health and children’s palliative care that varied between global regions, led to the development of eight statements. Our collaboration between colleagues in seven countries in different regions has allowed us to set out the context of the children’s palliative public health approach. This reflects a balancing of medical/nursing professionalised care and partnerships, co production and participation of communities. The public health approach to children’s palliative care is radical, it is transformational, and means changing how we do things in order to improve the lives of children with palliative care needs and their families around the world.
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
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.
Pediatric Palliative Care: Implications for Families and Caregivers
Research Framework: This article proposes to define pediatric palliative care by adopting an approach centered on the family as a whole and on the various health professionals who support them.Objectives: The purpose of the introduction is to define pediatric palliative care, to describe the population likely to benefit from it, and to outline its primary effects on families as well as on caregivers. It also aims to contextualize each article in this issue.Methodology: The article is based on a review of the literature.Results: A definition of pediatric palliative care, of the population involved in it, and its consequences for the whole family.Conclusions: The authors suggest several areas for further research in the field of pediatric palliative care.Contribution: The article aims to stimulate reflection and to contribute to the advancement of knowledge in those working with children and their families in pediatric palliative care. At the same time, it introduces readers unfamiliar with it to this specific approach to care.
Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014
Background Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it’s implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs’ missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. Methods Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. Results Between 2010 and 2014, 3607 children and young adults (0–21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. Conclusion PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.
Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium
BackgroundPaediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown.ObjectivesThe aim of the study was to identify, over a 5-year period (2010–2014), the number of children and adolescents (0–19 years) living with a CCC, and also their referral to PLTs.MethodsInternational Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics.ResultsOver 5 years (2010–2014) in the Brussels region, a total of 22 721 children/adolescents aged 0–19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT.ConclusionIn Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Soins palliatifs pédiatriques : quelles implications pour les familles et le personnel accompagnant ?
Research Framework: This article proposes to define pediatric palliative care by adopting an approach centered on the whole family and the various health professionals supporting them.Objectives: The main purpose of this introduction is to define pediatric palliative care, to describe the population likely to benefit from it, and to outline its main repercussions for families and caregivers. It also aims to contextualize each article in the issue.Methodology: This article is based on a review of the literature.Results: A definition of pediatric palliative care, the population concerned and the consequences for the whole family are presented.Conclusions: The authors put forward several avenues for further research in the field of pediatric palliative care.Contribution: This article contributes to the reflection and knowledge enrichment of those working with children and their families in pediatric palliative care. At the same time, it aims to introduce readers unfamiliar with this specific approach to care.
Soins palliatifs pédiatriques : quelles implications pour les familles et le personnel accompagnant ?
Cadre de recherche : Cet article propose de définir les soins palliatifs pédiatriques en adoptant une approche centrée sur toute la famille et sur les différents professionnels de la santé les accompagnant. Objectifs : Cette introduction vise essentiellement à définir les soins palliatifs pédiatriques, à décrire la population susceptible d’en bénéficier et d’en situer les principales répercussions sur la famille et les proches ainsi que les intervenants qui les accompagnent. Il vise également à situer chacun des articles du numéro. Méthodologie : Cet article s’appuie sur un examen de la littérature.Résultats : Une définition des soins palliatifs pédiatriques, de la population concernée ainsi que les conséquences sur l’ensemble de la famille sont présentées.Conclusions : Plusieurs axes de recherche restant à développer dans le domaine des soins palliatifs pédiatriques sont proposés par les auteures. Contribution : Cet article souhaite contribuer à la réflexion et à l'enrichissement des connaissances des intervenants accompagnant les enfants et leurs familles en soins palliatifs pédiatriques. Cela tout en permettant d’initier les lecteurs non familiers à cette approche de soins spécifique.
Microglia and macrophages promote corralling, wound compaction and recovery after spinal cord injury via Plexin-B2
Tissue repair after spinal cord injury requires the mobilization of immune and glial cells to form a protective barrier that seals the wound and facilitates debris clearing, inflammatory containment and matrix compaction. This process involves corralling, wherein phagocytic immune cells become confined to the necrotic core, which is surrounded by an astrocytic border. Here we elucidate a temporally distinct gene signature in injury-activated microglia and macrophages (IAMs) that engages axon guidance pathways. Plexin-B2 is upregulated in IAMs and is required for motor sensory recovery after spinal cord injury. Plexin-B2 deletion in myeloid cells impairs corralling, leading to diffuse tissue damage, inflammatory spillover and hampered axon regeneration. Corralling begins early and requires Plexin-B2 in both microglia and macrophages. Mechanistically, Plexin-B2 promotes microglia motility, steers IAMs away from colliding cells and facilitates matrix compaction. Our data therefore establish Plexin-B2 as an important link that integrates biochemical cues and physical interactions of IAMs with the injury microenvironment during wound healing.Zhou et al. unveil a novel role for activated microglia and macrophages during wound healing after CNS injury. Microglia promote corralling and form a protective barrier at the injury penumbra via the axon guidance receptor Plexin-B2.