Browse Items · Pediatric Palliative Care Library

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…

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…

Continuing bonds in parents after a loss in pregnancy, or a death at or shortly after birth: A population-based study

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…

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…

Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research

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…

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…

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

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…

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…

Camp Draws You Back Into Life Again: Exploring the Impact of a Therapeutic Recreation-Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness

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…

Grieving the Loss of a Child and the Use of Online Social Support: An Exploratory Survey Study

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

Tags: 2024, Adult, Anxiety/psychology, Child, Clarkson G, Depression/psychology, Female, Grief, Humans, Internet, Johnson LA, Journal of Psychosocial Nursing and Mental Health Services, Male, October List 2024, Self Efficacy, Sheikh NS, social media, Social Support, Surveys And Questionnaires

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…

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…

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…

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…

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):…

Voices of experience: insights from Dutch parents on periviability guidelines and personalisation

OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a…

THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS

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…

Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the…

A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies

Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of…

Tags: 2024, Adult, Article, attention deficit hyperactivity disorder, Aveline A, Battersby C, behavior change, breast feeding, breast milk, Cause Of Death, Cohort Analysis, community mental health, congenital diaphragm hernia, Databases Factual, date of birth, Developmental delay, Educational Status, England, Epidemiology, esophagus atresia, factual database, Female, gastroschisis, Gestational Age, Health Care Utilization, Hirschsprung disease, hospital discharge, hospital readmission, Human, Humans, Infant Newborn, Infant Premature, information retrieval, Information Storage and Retrieval, Length Of Stay, Major Clinical Study, Male, Mortality Rate, Necrotizing Enterocolitis, Newborn, newborn assessment, Newborn Care, newborn surgery, Pediatric Intensive Care Unit, place of birth, PLoS One, premature labor, Prematurity, Propensity Score, routinely collected health data, school attendance, September List 2024, van Blankenstein E, Wales, Wellbeing

Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders

Introduction: Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the…

Tags: 2024, Abdelmaguid N, Adolescent, Al Saeedi A, antibiotic agent, antibiotic prophylaxis, Article, bladder catheterization, bladder irrigation, bladder stone, Cerebral Palsy, Child, chronic life-limiting disease, Clinical Effectiveness, conservative treatment, Controlled Study, cutaneous vesicostomy, cystostomy, encephalomyelitis, Female, Follow Up, Frontiers in Pediatrics, Gross Motor Function Classification System, Human, Hydrocephalus, hydronephrosis, hydroureter, hypoxic ischemic encephalopathy, Khalil IA, Long Term Care, lower urinary tract dysfunction (LUTD), lower urinary tract symptom, Major Clinical Study, Male, Meningomyelocele, Mohamed RB, Muneer E, nephrolithiasis, neurogenic bladder, neurogenic bladder dysfunction, Neuromuscular Disease, neuropathic bladder, occult spinal dysraphism, Palliative Therapy, Patient Safety, Pippi Salle JL, Polypharmacy, postoperative complication, Postoperative Period, pragmatic trial, Preschool Child, quadriplegia, recurrent infection, Retrospective Study, School Child, September List 2024, Spinal Muscular Atrophy, stenosis, stoma, urinary tract infection, Vallasciani S, vesicostomy

Assessing Pediatric Resident Needs in Grief and Bereavement Education

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…

Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis

Abstract The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two…

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred…

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021

Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various…

Moral Distress and Pediatric Palliative Care

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

Objective: Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study…

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