Browse Items · Pediatric Palliative Care Library

Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…

Understanding Death With Limited Experience In Life: Dying Children's And Adolescents' Understanding Of Their Own Terminal Illness And Death

PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even…

Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children

BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…

Undergraduate nursing students' attitudes and preparedness toward caring for dying persons - A longitudinal study

Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life…

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling…

Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)

Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease…

Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult

Treatment of obstructive sleep apnea in achondroplasia: evaluation of sleep, breathing, and somatosensory-evoked potentials

The occurrence of obstructive sleep apnea (OSA) is achondroplasia has been linked to brain stem compression. Overnight sleep studies (11 subjects) and somatosensory-evoked potentials (SEP's, 10 subjects) were recorded before and after conventional…

Treatment of mania in children and adolescents

Bipolar disorder (BPD) is a severe and complex illness that seriously disrupts the lives of those afflicted. Increased rates of suicide attempts and completions, poorer academic performances, disturbed interpersonal relationships, increased rates of…

Tags: 2005, Adolescent, Antimanic Agents/adverse effects/therapeutic use, Antipsychotic Agents/adverse effects/therapeutic use, Backlog, Bipolar Disorder/diagnosis/drug therapy/psychology, Carbamazepine/adverse effects/therapeutic use, Child, Current Psychiatry Reports, Humans, Journal Article, Kang J, Lithium Compounds/adverse effects/therapeutic use, Randomized Controlled Trials as Topic, Sheikh R, Valproic Acid/adverse effects/therapeutic use, Weller EB, Weller R

Treatment of children with unexplained chronic pain

2006

Tags: 2006, Adolescent, Backlog, Child, Chronic Disease/therapy, Cognitive Therapy/methods, Humans, Journal Article, Kashikar-Zuck S, Lancet, Pain/classification/psychology/therapy, PedPal Lit, Severity Of Illness Index

Treatment adherence of youth and young adults with and without a chronic illness

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational…

Treasure Weekend: supporting bereaved siblings

The importance of allowing bereaved siblings the opportunity to be involved and mourn the loss of a sibling family member has gained increasing recognition. Child family members may need support in the same way that parents might need support to cope…

Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers

Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are…

Tags: 2023, Adolescent, Chronic Illness, Doucet S, Health Personnel, Journal Of Child Health Care, Luke A, November List 2025, Paediatrics, Splane J, Transition To Adult Care

Transition: a conceptual analysis in the context of siblings of children with cancer

Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses…

Transition to adulthood: the important role of the pediatrician

This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s).…

Tags: 2004, Adolescent, Adolescent Development, Adolescent Transitions, Backlog, Child, Child Development, Chronic Disease, Developmental Disabilities, Disabled Children, Humans, Infant, Journal Article, Olsen DG, Pediatrics, Physician's Role, Preschool, Swigonski NL

Transition to adult services for children and young people with palliative care needs: a systematic review

OBJECTIVE: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN: Systematic review. SETTING: Child and adult services and interface between healthcare providers. PATIENTS:…

Transition programs in cystic fibrosis centers

2004

Tags: 2004, Adolescent, Adolescent Transitions, Adult, Backlog, Continuity Of Patient Care, Conway SP, Cystic Fibrosis/therapy, Great Britain, Humans, Journal Article, Patient Transfer, Pediatric Pulmonology

Transition program from pediatric to adult care for cystic fibrosis patients

A survey of adolescents and young adults with cystic fibrosis (CF) attending an adult CF center was conducted to evaluate a transition program as a means of transferring care from pediatric to adult setting. A total of 40 patients completed a…

Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…

Transition of care: health care professionals' view

There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed…

Transition of care from paediatric to adult services: one part of improved health services for adolescents

Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a…

Tags: 2008, Adolescent, Adolescent Health Services/standards, Adolescent Transitions, Archives of Disease in Childhood, Backlog, Continuity of Patient Care/standards, Delivery of Health Care/standards, Great Britain, Humans, Journal Article, Quality Of Health Care, State Medicine/standards, Viner RM

Transition of care from paediatric to adult services in cardiology

2007

Tags: 2007, Adolescent, Adolescent Transitions, Adult, Archives of Disease in Childhood, Backlog, Cardiology/organization & administration, Child, Congenital/psychology/therapy, Continuity of Patient Care/standards, Delivery of Health Care/ethics/standards, Female, Heart Defects, Hudsmith LE, Humans, Journal Article, Male, Pediatrics, Thorne SA

Transition of care from child to adult mental health services: the great divide

PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the…

Transition in chronic illness: Who is going where?

AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for…

Tags: 2008, Adolescent, Adolescent Medicine, Adolescent Transitions, Backlog, Brodie L, Child, Chronic Disease/epidemiology/therapy, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Hospitals, Humans, Interviews As Topic, Journal Article, Journal of Paediatrics and Child Health, New South Wales/epidemiology, Pediatric, Steinbeck KS, Towns SJ

Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

Transition from pediatric to adult services: are we getting it right?

PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become…

Tags: 2008, Adolescent, Adolescent Medicine/organization & administration, Adolescent Transitions, Age Factors, Australia, Backlog, Chronic Disease, Continuity Of Patient Care/organization & Administration, Current Opinion In Pediatrics, Delivery of Health Care/organization & administration, Humans, Journal Article, Kennedy A, Models, Organizational, Patient Care Planning/organization & administration, Pediatrics, Sawyer S

Transition from pediatric to adult care: experience of a cystic fibrosis care center]

BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the…

Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives

OBJECTIVES: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. METHODS: Cross-sectional survey using an anonymous, semi-structured…

Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature

BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for…

Tags: 2017, Adolescent, Adult, Child, Humans, International Journal Of Nursing Studies, Kerr H, Nicholl H, O'Halloran P, October 2018 List, Price J, September 2018 List, Terminally Ill, Transition To Adult Care, Young Adult

Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison

BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to…

Tags: 2020, Adolescent, BMC Palliative Care, Continuity Of Patient Care, Cullen-Dean G, June 2021 List, Kerr H, Life-limiting Conditions, O'Halloran P, Price J, Widger K, Young Adult

Transition care for young people with chronic illness

Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…

Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer

Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our…

Transdermal fentanyl in the management of children with chronic severe pain: results from an international study

BACKGROUND: The current study was conducted to assess the safety and tolerability of a transdermal fentanyl delivery system for the relief of chronic pain in a pediatric population, and also to validate titration recommendations and conversion to…

Transdermal fentanyl for pain relief in a paediatric palliative care population

This multicentre, observational study examined the efficacy of the therapeutic transdermal fentanyl system (TTS-fentanyl) in children requiring opioids for pain in life-threatening disease. Forty-one children receiving oral morphine (median dose 60…

Toward youth friendly services: a survey of young people in primary care

BACKGROUND: The World Health Organization encourages the development of youth friendly services, yet little is known on how youth currently present in general practice. OBJECTIVE: To describe the perspectives, expectations, and service receipt of…

Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.

OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of…

Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…

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