Browse Items · Pediatric Palliative Care Library

The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases

Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction…

Tags: 2024, Adolescence, Aggression, Agitation, antiemetic agent/pv [Special Situation for Pharmacovigilance], anxiety disorder, apathy, appetite stimulant/pv [Special Situation for Pharmacovigilance], Augustine EF, automutilation, Behavior Therapy, body weight gain, Brown HB, Caregiver Burden, Child Psychiatry, Childhood Mortality, choreoathetosis/dt [Drug Therapy], cognitive defect/si [Side Effect], collaborative care team, Comorbidity, degenerative disease/dm [Disease Management], degenerative disease/dt [Drug Therapy], Dementia, disease exacerbation, Dysphagia, Editorial, Expectation, extrapyramidal symptom, February List 2025, feeding disorder, feeding tube, first-line treatment, gabapentin/dt [Drug Therapy], gabapentin/pv [Special Situation for Pharmacovigilance], Hauptman AJ, high risk behavior, Human, Huntington chorea/dm [Disease Management], iatrogenic disease/si [Side Effect], Interpersonal Communication, Irritability, Journal Of The American Academy Of Child And Adolescent Psychiatry, juvenile neuronal ceroid lipofuscinosis/dm [Disease Management], Lafora disease, Live Birth, Medication therapy management, mental health care, mirtazapine/pv [Special Situation for Pharmacovigilance], mood disorder, motor dysfunction, neuroleptic agent/ae [Adverse Drug Reaction], neurologic disease/dm [Disease Management], neuropsychiatry, obsession, onset age, Palliative Therapy, parenting education, parkinsonism, Patient Care, Patient Comfort, pediatric patient, perseveration, Polypharmacy, Prevalence, Prognosis, psychiatric neuropalliative care, psychoeducation, psychosis, Quality Of Life, quetiapine/dt [Drug Therapy], quetiapine/pv [Special Situation for Pharmacovigilance], responsibility, risperidone/dt [Drug Therapy], risperidone/pv [Special Situation for Pharmacovigilance], Seizure, sensory dysfunction, Side Effect, sleep disorder, Spasticity, Symptom, symptom burden, tardive dyskinesia/si [Side Effect], Tay Sachs disease, trazodone/dt [Drug Therapy], trazodone/pv [Special Situation for Pharmacovigilance], visual impairment, Young Adult

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit

OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of…

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care

Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a…

A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK

This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising…

Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort

BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed…

Unrealistic parental expectations for cure in poor-prognosis childhood cancer

Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision…

Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study

Background: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses.…

Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)

Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation…

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue…

Challenges experienced by paediatricians providing palliative care to children; A thematic analysis

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family

PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed…

A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden

Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to…

Wrapped with love-art therapy in paediatric palliative care

Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to…

Barriers and facilitators to the implementation of a paediatric palliative care team

Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…

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