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Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to…
Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. Aim(s): Appraise the evidence to identify factors influencing referral and access to children's…
Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…
SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their…
BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a…
(1) Objectives: The purpose of this study was to investigate the studies that evaluate the effectiveness of immersive virtual reality (VR) as a distraction technique for pain and anxiety associated with medical procedures in children and adolescents.…
Objectives: This study aimed to identify facilitators and barriers to parent-child communication in pediatric palliative care, providing insights for medical professionals developing targeted interventions to enhance parent-child communication and…
Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and…
BACKGROUND: The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care…
Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of…
Integrative practices have been incorporated into palliative care to provide holistic and multidimensional care for patients. This study aims to identify the scope of integrative practices, specifically whole medical systems, and demonstrate its…
In this study, we describe continuing bonds and grief reactions and assess their association in 980 parents bereaved in pregnancy, at or shortly after birth. We found that most parents experienced continuing bonds. However, they differed by type of…
Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has…
Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…
Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology…
BACKGROUND/PURPOSE: Despite the prevalence of surgical intervention in seriously ill children, data is scarce regarding interventions performed based on type of serious illness. We therefore sought to evaluate the surgical interventions performed…
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an…
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the…
Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a…
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…
Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our…
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in…
Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent…
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…
Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience…
BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community…
INTRODUCTION: Caring for children living with life-threatening and life-limiting illnesses can be challenging for families. Parents' roles as primary caregivers can be complex, with extensive responsibilities. METHOD(S): A mixed-design study was…
Introduction and objectives: Death in children with neurological disease is usually complex and requires an interdisciplinary approach. Our aim was to describe the context of death in children with neurological disease according to the underlying…
Objectives To evaluate the diversity in ethnicity and main language spoken by children formally referred to a specialist paediatric palliative care service, and to compare this to both local and regional population demographics. Methods A…
Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are…
This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had…
BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and…
Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended…
Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died…
PURPOSE: To describe social media online grief supports, accessing behaviors, psychosocial variables, and feelings of support among individuals grieving the loss of a child aged
Pediatric palliative care (PPC) patients are at an elevated risk of malnutrition. Nutritional inadequacy can also cause micronutrient deficiencies. These factors can lead to weight loss, stunted growth, and poor quality of life. Despite the…
Objectives Around 70% of children with life-limiting conditions will die in hospital,1 meaning many paediatric staff will encounter death during their clinical duties. Observing and experiencing grief around a child's death can have a detrimental…
Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse…
Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital).…
