Browse Items · Pediatric Palliative Care Library

Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence

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…

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

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…

CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES

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…

Experience of caregivers and healthcare professionals using a telemedicine programme in a paediatric palliative care unit

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…

Immersive Virtual Reality for Pain and Anxiety Management Associated with Medical Procedures in Children and Adolescents: A Systematic Review

(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.…

Facilitators and barriers to parent-child communication in pediatric palliative care: An integrative review

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…

Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18

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…

Pediatric palliative care in children and young people with non-oncological diseases: a scoping review

Supporting parents and families of children with life-limiting conditions: the impact of advance care planning

Tags: 2024, Advance Care Planning, Article, Child, Child Health, Complication, Evidence-Based Nursing, Family, Human, Moody A, November List 2024, palliative nursing, Parent, Stocks KL, Tatterton MJ

Intrathecal baclofen therapy as treatment for spasticity and dystonia: Review of cases in a pediatric palliative care unit

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…

Tags: 2024, Adolescent, Adult, Alba RM, alert, antibiotic agent/dt [Drug Therapy], antibiotic agent/iv [Intravenous Drug Administration], Article, Baclofen/dt [drug Therapy], baclofen/po [Oral Drug Administration], baclofen/pv [Special Situation for Pharmacovigilance], baclofen/tl [Intrathecal Drug Administration], benzodiazepine derivative/dt [Drug Therapy], benzodiazepine derivative/po [Oral Drug Administration], benzodiazepine derivative/pv [Special Situation for Pharmacovigilance], botulinum toxin/dt [Drug Therapy], Brain Damage, catheter, Cerebral Palsy, Child, Clinical Article, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Congenital Malformation, continuous infusion, de Noriega Echevarria I, Descriptive Research, diazepam/dt [Drug Therapy], disease classification, drug dose increase, drug dose reduction, dystonia/dt [Drug Therapy], enzyme deficiency, Errasti VI, Female, glutaric aciduria, glutaric aciduria type 1, Gross Motor Function Measure, Human, implantation, intrathecal baclofen pump/am [Adverse Device Effect], intrathecal pump, Male, medical device malfunction/co [Complication], meningitis/dt [Drug Therapy], nerve degeneration, Neurologia, November List 2024, Palliative Therapy, pantothenate kinase/ec [Endogenous Compound], Pediatrics, Perez MMA, poly malformative syndrome, Preschool Child, Puertas MV, reservoir, Retrospective Study, School Child, spasticity/dt [Drug Therapy], STATA v16.0, Syndrome, tizanidine/dt [Drug Therapy], tizanidine/po [Oral Drug Administration], tizanidine/pv [Special Situation for Pharmacovigilance], trihexyphenidyl/dt [Drug Therapy], trihexyphenidyl/po [Oral Drug Administration], trihexyphenidyl/pv [Special Situation for Pharmacovigilance], Young Adult

Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions

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…

Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives

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…

A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care

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…

Tags: 2024, Adams S, Adolescent, Adult, Article, assisted ventilation, Caregiver, Checklist, Child Psychiatry, Children With Medical Complexity, chronicity, Chung C, Conversation, decision support system, Demographics, dietitian, Disability, Esser K, Family physicians, feedback system, General Practitioner, Health Care Access, Health Care Personnel, Health care transition, Health Care Utilization, Hospital, Human, Information Processing, Lee S, Major Clinical Study, McKay T, Medical Record Review, Medical Technology, Moore C, Multidisciplinary team, Multiple Chronic Conditions, November List 2024, Nurse Practitioner, Orkin J, Paediatrics And Child Health, Patient Care, pediatric patient, Pediatrician, Pediatrics, pharmaceutical care, pharmacist, Quality Improvement, Rehabilitation, School, Social Worker, standardization, Total Quality Management, Transition To Adult Care, vascular access, Wagman H

The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study

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…

Evaluation of a perinatal palliative care program by SWOT analysis

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…

CARING FOR DYING CHILDREN: EXPERIENCES OF FAMILY CAREGIVERS OF CHILDREN RECEIVING PEDIATRIC PALLIATIVE TREATMENT

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…

Context of death and end-of-life decision-making in paediatric patients with neurological conditions

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…

DIVERSITY IN ETHNICITY AND MAIN SPOKEN LANGUAGE OF CHILDREN REFERRED TO A SPECIALIST PAEDIATRIC PALLIATIVE CARE SERVICE

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…

Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement

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…

THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON

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…

DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?

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…

HELPING THE HELPERS - SUPPORT IN CHILD BEREAVEMENT FOR PAEDIATRIC HEALTH CARE STAFF

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…

INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON

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…

A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study

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).…

Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S

Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in Croatia

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…

Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases

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'…

New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study

AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs

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…

PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?

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…

Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center

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…

Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers

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 Perspectives on Palliative Care in the Neurocritical Care Unit

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…

PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed…

A PROSPECTIVE REVIEW OF PAEDIATRIC TRAINEES EXPOSURE TO PALLIATIVE CARE IN IRISH HOSPITALS

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…

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

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…

A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT

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…

SCOPING REVIEW OF THE BARRIERS AND FACILITATORS TO PAEDIATRIC PALLIATIVE CARE REFERRAL, AND INTERVENTIONS TO IMPROVE ACCESS

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…

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

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…

Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J

Suffering in children and adolescents in paediatric palliative care in Spain: Psychometric properties of the qESNA scale

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):…

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