Browse Items · Pediatric Palliative Care Library

Children's perspectives on the benefits and burdens of research participation

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…

Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…

Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education

BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved…

Clinical and neuroradiological follow-up in mucopolysaccharidosis type III (Sanfilippo syndrome)

Mucopolysaccharidosis type III (Sanfilippo syndrome) is an autosomal recessive disorder characterised by progressive nervous system involvement with mental retardation, behavioural problems and seizures. Three patients, of 20 months to 12 years of…

Osteopenia in children with acute lymphoblastic leukemia: a pilot study of amelioration with Pamidronate

Behavioral, social, and educational outcomes after pediatric stem cell transplantation and related factors

BACKGROUND: The purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24…

Exploring perinatal death with midwifery students' using a collaborative art project

OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…

A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions

Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…

Use of bisphosphonate therapy for osteoporosis in childhood and adolescence

Congenital and acquired forms of osteoporosis in childhood and adolescence can result in morbidity from fracture and pain in childhood, and place an individual at significant risk for problems in adult life. A range of therapies exist for the…

"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay

BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines…

Tags: *Disabled Children, *Intellectual Disability, 2021, 2023 SE4 - Parent Perspectives, Batchelor, Molly, Child, Fathers, Female, Humans, Journal Of Applied Research In Intellectual Disabilities, Maguire, Sabine, Male, Perception, Qualitative Research, Self-Help Groups, Shearn, Julia

Adolescent sibling bereavement as a catalyst for spiritual development: a model for understanding.

While our understanding of adolescent bereavement has greatly expanded in recent years, one area yet to be clarified is the relationship between grief following a significant loss and spirituality. This article strengthens our understanding of this…

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

Behaviour in mucopolysaccharide disorders

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…

Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…

Supportive care: palliative care in children, adolescents, and young adults--model of care, interventions, and cost of care: a retrospective review

Factors associated with congruence between preferred and actual place of death

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home…

Paediatric long-term home ventilation: Should we rethink social inclusion for these children?

Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the…

The use of an intrathecal pump to manage intractable cancer pain in a pediatric patient: a case report

A 15-year-old girl with combined immune deficiency syndrome, diagnosed with metastatic squamous cell cancer of the anus, had significant pain secondary to vulvar-perianal condyloma. Conventional treatment with oral and intravenous analgesics was…

Paediatric advance care planning in life-limiting conditions: Scoping review of parent experiences

Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents'…

Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment),…

Comparison of morphine and methadone for prevention of postoperative pain in 3- to 7-year-old children

A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major…

A prospective evaluation of opioid weaning in opioid-dependent pediatric critical care patients

Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…

A Phase I, open label, dose ranging trial of intravenous bolus zoledronic acid, a novel bisphosphonate, in cancer patients with metastatic bone disease

BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone…

Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions

Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from…

Tags: 2014, Adult, Attitude Of Health Personnel, Backlog, Beresford B, Clinical Medicine (london, England), Female, Great Britain, Health Services, Humans, Inpatients, Journal Article, Male, Minority Groups, Parents, Stuttard L, Young Adult

Resource utilization and outcome in gravely ill intensive care unit patients with predicted in-hospital mortality rates of 95% or higher by APACHE III scores: the relationship with physician and family expectations

OBJECTIVE: To assess resource utilization and outcome in gravely ill patients admitted to an intensive care unit (ICU) and the potential association with health care workers' and family members' expectations. PATIENTS AND METHODS: We retrospectively…

Ketamine-fentanyl-midazolam infusion for the control of symptoms in terminal life care

In this report, we describe nine terminally ill patients with metastatic cancer who were treated with an intravenous infusion consisting of ketamine (2 mg/ml)/fentanyl (5 micrograms/ml)/midazolam (0.1 mg/ml) (K/F/M) to control pain after traditional…

Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records

BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…

Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic

OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years

Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families…

Paediatric palliative care in the NICU: A new era of integration

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…

COVID-19 Pandemic Restrictions and the Use of Technology for Pediatric Palliative Care in the Acute Care Setting

The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical…

Tags: 2020, Betacoronavirus, Bettini EA, Coronavirus Infections/epidemiology, Female, Hospice And Palliative Care Nursing, Humans, Infant, Infection Control, Intensive Care Units Pediatric, January 2021 List, Journal of Hospice and Palliative Nursing, Palliative Care, Pandemics, Parents, Pneumonia Viral/epidemiology, Terminally Ill, Videoconferencing, Visitors to Patients

Judging the effectiveness of analgesia for children and adolescents during vaso-occlusive events of sickle cell disease

The effectiveness of analgesia during sickle cell crisis was examined in this descriptive, exploratory study. Pain scores (using the African-American Oucher and the Adolescent Pediatric Pain Tool) and analgesics administered were examined during a…

Esophageal coin removal by emergency physicians: a continuous quality improvement project incorporating rapid sequence intubation

OBJECTIVE: The objective of this study was to describe our experience removing esophageal coins from children in a tertiary care pediatric emergency department over a 4-year period. METHODS: We retrospectively reviewed a continuous quality…

An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

Contextual influences on school provision of health services

PURPOSE: To examine contextual factors that may facilitate or impede the provision of school health services. METHODS: Using a composite database derived primarily from the National Longitudinal Study of Adolescent Health, we used logistic regression…

Health status of bereaved parents

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness…

Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…

Life expectancy among people with cerebral palsy in Western Australia

This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were…

Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population

BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…

Bisphosphonates for cancer patients: why, how, and when?

Bisphosphonates (BPs) are potent inhibitors of osteoclast-mediated bone resorption, and it is well accepted that tumor cells in bone, especially breast cancer and myeloma cells, can stimulate osteoclast formation and activity leading to the release…

Tags: 2002, Backlog, Body JJ, Bone Neoplasms/complications/drug therapy/prevention & control/secondary, Breast Neoplasms/pathology, Diphosphonates/therapeutic use, Female, Humans, Hypercalcemia/etiology/prevention & control, Journal Article, Male, Mancini I, Multiple Myeloma/pathology, Neoplasm Metastasis/prevention & control, Prostatic Neoplasms/pathology, Randomized Controlled Trials, Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer

Browse Items (1703 total)