Browse Items · Pediatric Palliative Care Library

Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?

Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at…

Medical marijuana use for pediatric oncology patients: single institution experience

Medical marijuana (MM) is widespread in many medical fields, including oncology, with limited use in pediatric oncology where research is scarce and often shows conflicting results. This research focuses on alleviating side effects of anticancer…

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are…

A psychological experience assessment protocol of parent caregivers in paediatric palliative care

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…

Care with love: Parents' experiences in caring their child with cancer under palliative care

Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research…

Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities

Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This…

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End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?

A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease

Aim: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD:…

Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study

BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been…

Feed-induced Dystonias in Children with Severe Central Nervous System Disorders

Dystonias can arise from any painful stimuli in neurologically disabled children. Classically, feed-induced dystonias from mediastinal pain due to severe gastroesophageal reflux disease are described as Sandifer spasm. We report a case series of 12…

Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome

Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers

Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada,…

Pediatric palliative podcasting as a tool to reach families

Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers.…

Tags: 2019, Bills O, Child, Clinical Article, conference abstract, Female, Follow Up, Human, Male, March 2020 List, Moore D, Organization, Palliative Therapy, Pediatrics, season, social media, Total Quality Management, touch

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study

Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care…

Rapid response physiotherapy service in patients with life limiting conditions

Background Children with chronic illness and life limiting conditions are often more prone to respiratory illnesses due to problems with increased secretions and reduced ability to clear them. The aim of rapid response physiotherapists (RRP) in this…

Children's understanding of dying and death: A multinational grounded theory study

OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…

The Experience Of Providing End Of Life Care At A Children's Hospice: A Qualitative Study

Caring for dying children in the paediatric intensive care unit [PICU]

Aims & Objectives: Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child's critical and life…

Surgical Intervention In Trisomy 18-supporting Pallative Care

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness

Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…

Analysis Of Death And Palliative Care In A Neonatal Intensive Care Unit

Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected…

Telemedicine: the Pediatric Palliative Perspective (FR476)

Objectives: * Describe the logistics of using telemedicine through an outpatient Pediatric Palliative Clinic. * Describe the experience of using telemedicine from the perspective of the parent, nurse, and physician.

Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals

Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and…

The experiences of bereaved family caregivers with advance care planning for children with medical complexity

BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity…

Advanced care planning in cystic fibrosis

Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research…

Characterizing social worker and chaplain interactions with parents of critically ill children with cancer

Background: Parents of children with cancer admitted to the pediatric intensive care unit (PICU) often obtain support from social workers and/or chaplains (SWs/Cs). Yet, empirical work describing the roles and activities of SWs/Cs caring for patients…

Social worker and chaplain activities with parents of critically ill children with cancer

Learning Objectives: Social workers (SWs) and chaplains (Cs) support families of PICU cancer patients. Few data describe the activities and impact of SWs and Cs (SWs/Cs) in the PICU. This study examined the activities of SWs/Cs caring for PICU cancer…

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…

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…

Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…

Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team

Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in…

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

Survival, short-term morbidity of extremely low gestational age infants and their predictors

BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide…

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…

Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness

Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their…

Tags: 2019, Article, Child, childhood, Clinical Article, congenital blood vessel malformation, Diagnosis, Diagnostic Error, February 2019 List, Female, Harrington NG, Health Communication, Human, Kerr AM, Male, Scott AM, Semi Structured Interview, Terminal Care, Uncertainty

Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation

DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young…

Single-center Experience Providing Palliative Care To Pediatric Patients With End-stage Renal Disease

Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. Objective:…

Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions

Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative…

Pediatric leukodystrophies: The role of the otolaryngologist

Background Leukodystrophies consist of degenerative neurogenetic diseases often associated with comorbidities that extend beyond the neurological system. Despite their impacts on patients' quality of life and risks of complications, head and neck…

Tags: 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2017, 93384-43-1 (botulinum toxin A), Adolescent, Adult, Aicardi-Goutières syndrome, anamnesis, Article, aspiration pneumonia, Assessment, Bernard G, botulinum toxin A/dt [Drug Therapy], breathing difficulties, characteristics, Child, Clinical Article, Cohort Analysis, Comorbidity, Daniel S J, Drool, drooling, Dysphagia, feeding difficulties, head and neck disease, hearing impairment, Human, hypersalivation/su [Surgery], International Journal of Pediatric Otorhinolaryngology, Kay-Rivest E, Khendek L, Krabbe disease, Leukodystrophy, leukodystrophy/dt [Drug Therapy], nose feeding, otolaryngologist, Pelizaeus-Merzbacher disease, physical examination, Physician Attitude, Priority Journal, Quality Of Life, quality of life assessment, Questionnaire, sleep disturbance, stomach tube, Trajectory, x-linked adreno-leukodystrophy

Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service

BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a…

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