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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…
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…
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…
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 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: 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: 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
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).…
Background and aim: This study explores healthcare professionals' perspectives on end-of-life care in pediatric intensive care units (ICUs) in Croatia, aiming to illuminate their experiences with such practices, underlying attitudes, and major…
Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers'…
Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objective(s): We asked outpatient PPC (OPPC) program leaders in the United States about clinic…
Objectives The number of children in the UK living with a life-limiting condition is rising year-on-year.1 The average life expectancy associated with many of these conditions also continues to increase and, consequently, more children are surviving…
Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the…
BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but…
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional…
Aim Paediatric palliative care (PPC) is an ever evolving speciality in Ireland. It is recommended that all healthcare professionals involved in the care of children living with a life-limiting condition need to have an understanding of the core…
CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…
Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A…
Objectives Palliative care is an essential component of national health systems and should be available to all people irrespective of age.1 Despite this, a large proportion of children and young people (children) worldwide who require palliative care…
Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…
Objective: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice. Method(s):…
Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West…
