Browse Items · Pediatric Palliative Care Library

Integrating palliative care in pediatrics

An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all…

Tags: 2004, Adolescent, Child, Current Pain & Headache Reports, Delivery of Health Care, February 2018 List, Humans, Infant, Integrated/og [Organization & Administration], Only Child, Palliative Care, Pediatrics/og [Organization & Administration], Walton O, Weinstein SM

Role of palliative care in adolescent and young adult oncology

Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary…

Tags: 2010, Adolescent, Backlog, Behavior, Humans, Journal Article, Journal Of Clinical Oncology, Neoplasms/psychology/therapy, Palliative Care, Patient Care Team, Pery S, Wein S, Young Adult, Zer A

Spirituality In Adolescent Patients

Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality,…

Tags: 2017, Adolescent, Annals Of Palliative Medicine, Illness, September 2017 List, Spirituality, Weaver M, Wratchford D

Body composition in cachexia resulting from malignant and non-malignant diseases

The body composition of 23 patients with cachexia resulting from malignant or benign inflammatory disease was studied. Skinfold thickness and radioisotope tracer measurements enabled us to estimate total body fat, lean body mass, the ratio of fat…

CAMHS liaison: supporting care in general paediatric settings

Increasing numbers of children and young people with mental health problems are being cared for in general paediatric settings, presenting a challenge to nurses who do not have mental health nursing qualification and experience. A survey of nurses in…

Problems and pitfalls of transition from paediatric to adult renal care

Transition is a generic issue for subspecialties dealing with chronic illness and has received little attention to date. Transfer to adult care occurs at the end of a transition process that must be individualised for each patient and takes into…

Tags: 2005, Adolescent, Adolescent Health Services, Adolescent Transitions, Adult, Backlog, Child, Chronic Disease, Continuity of Patient Care/standards, Humans, Journal Article, Kidney Diseases/psychology/therapy, Patient Transfer/standards, Pediatric Nephrology (berlin, Germany), Pediatrics, Watson AR

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…

Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study

Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…

Tags: 2023, 2023 SE5 - Low Resource Setting, acute lymphoblastic leukemia/di [Diagnosis], Adolescent, Adult, Anga G, Article, BMC Palliative Care, bronchiectasis/di [Diagnosis], Cerebral Palsy/di [Diagnosis], Child, Child Health Care, Clinical Article, congenital heart disease/di [Diagnosis], congenital malformation/di [Diagnosis], Controlled Study, Descriptive Research, Duke T, dyspnea/co [Complication], Female, germ cell tumor/di [Diagnosis], Guillain Barre syndrome/di [Diagnosis], health care need, Health Care Personnel, Health Care Quality, hemosiderosis/di [Diagnosis], Human, Human immunodeficiency virus infection/di [Diagnosis], Infant, Interview, job experience, Kilalang C, knowledge gap, Male, malignant neoplasm/di [Diagnosis], Medical Record, Melanesia, neuroblastoma/di [Diagnosis], Only Child, Pacific Islands, Pain/co [complication], Palliative Care, Palliative Therapy, Papua New Guinea, Parent, pediatric ward, Preschool Child, pulmonary hypertension/di [Diagnosis], Pulsan F, Qualitative Research, retinoblastoma/di [Diagnosis], School Child, thalassemia/di [Diagnosis], Thematic Analysis, tuberculosis/di [Diagnosis], Vince JD, Watch V

The natural history of type B Niemann-Pick disease: Results from a 10-year longitudinal study.

OBJECTIVES: Type B Niemann-Pick disease (NPD-B) caused by acid sphingomyelinase deficiency is a rare, autosomal recessive, lysosomal storage disorder with a broad range of disease severity. The objectives of this study were to document the natural…

Task force 1: the changing profile of congenital heart disease in adult life

Childhood and adolescent cancer statistics, 2014

In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…

Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life

Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to…

Family, maternal, and child health through photovoice

OBJECTIVE: (1) To introduce photovoice, a participatory action research methodology, for use by MCH program managers to enhance community health assessments and program planning efforts, (2) to enable community people to use the photovoice…

Relational autonomy: moving beyond the limits of isolated individualism

Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…

A double-blind, randomized, placebo-controlled trial of escitalopram in the treatment of pediatric depression

OBJECTIVE: Escitalopram is a selective serotonin reuptake inhibitor antidepressant indicated for use in adults. This trial examined the efficacy and safety of escitalopram in pediatric depression. METHOD: Patients (6-17 years old) with major…

A two-step multidisciplinary approach to treat recurrent esophageal strictures in children with epidermolysis bullosa dystrophica

In children with severe generalized recessive dystrophic epidermolysis bullosa (RDEB), esophageal scarring leads to esophageal strictures with dysphagia, followed by malnutrition and delayed development. We describe a two-step multidisciplinary…

Congenital malformations of the central nervous system in a 1-year birth cohort followed to the age of 14 years

A 1-year birth cohort from northern Finland comprised 12,058 children, 96% of all live-born infants born in the region in 1966. The development and morbidity of these children were followed up to the age of 14 years. Altogether, 40 children (25 boys…

Global and specific behavioral measures of pain in children with cerebral palsy.

OBJECTIVES: The aim of this research was to validate global and behavioral observation methods for measuring pain in children with cerebral palsy (CP)., MATERIALS AND METHODS: Nineteen children diagnosed with CP (2-21 years of age) and their primary…

Pain in children with cerebral palsy: common triggers and expressive behaviors.

To obtain parents' identification and description of the behaviors, health care procedures and daily living situations associated with pain in children with cerebral palsy (CP), surveys were sent to parents of children with CP recruited via a clinic…

Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach

BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of…

Musicotherapy and narrative creations with an adolescent admitted to the pediatric hematology-oncology department

This groundbreaking study focuses on the link between music-therapy and narrativity in a pediatric hematology-oncology unit. The goal is to observe and analyse the psychic processes in this therapeutic mediation. We aim to study the creative…

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

The feasibility and validity of forced spirometry in ataxia telangiectasia

OBJECTIVES: To explore the feasibility and validity of forced spirometry in patients with ataxia telangiectasia (A-T). STUDY DESIGN: Twenty-eight patients (aged 3.7-19.3 years) performed spirometry on 47 occasions. Parameters studied were technical…

Pediatric Palliative Care Referral Criteria Following Moderate or Severe Traumatic Brain Injuries

Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI…

Tags: 2023, Adolescent, Baird M, Brain, Brain Injuries, Brown M, Child, Delahanty S, Friebert S, Goals Of Care, Grossoehme DH, Journal of Palliative Medicine, June 2022 List, Palliative Care, Referral And Consultation, Richner G, traumatic brain injury, Villarosa R

End of Life Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…

Choices and control: parental experiences in pediatric terminal home care

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group

PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United…

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…

Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales

BACKGROUND: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The…

The use of conscious sedation for pain control during forearm fracture reduction in children: does race matter?

Recent reports in the medical literature indicate that certain racial disparities have been identified in healthcare. The authors sought to identify the potential relationship between the use of pain medications in African-American and Caucasian…

A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles

PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the…

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…

Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation

BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and…

Care for patients in the last months of life: the Belgian Sentinel Network Monitoring End-of-Life Care study

BACKGROUND: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life…

Resting muscle pain as the first clinical symptom in children carrying the MTTK A8344G mutation

The characteristic clinical presentation, especially the appearance of muscle symptoms, is quite unique in children carrying the mtA8344G mutation. The diagnosis of MERRF syndrome is seldom made in the pediatric age. Fatigue is a common finding in…

Risperidone in children with autism and serious behavioral problems

2002

Tags: 2002, Adolescent, Adult, Antipsychotic Agents/adverse effects, Autistic Disorder/drug therapy, Backlog, Humans, Hyperprolactinemia/chemically induced, Hypogonadism/chemically induced, Journal Article, Osteoporosis/chemically induced, Risperidone/adverse effects, The New England Journal Of Medicine, Valiquette G

Niemann-Pick disease type C: Two cases and an update.

We describe two patients with juvenile-onset Niemann-Pick disease type C (NPC) to illustrate the variable neurologic features of this condition. One presented with hypersplenism at age 10 and was misdiagnosed with Gaucher disease. He developed…

Late consequences of chronic pediatric illness

There are many challenges in coping with and adapting to life with a chronic disease, and increased survival cannot be assumed to be associated with increased quality of life. A recent systematic review shows there is wide variation in outcomes…

Tags: 2007, Adolescent, Arthritis, Backlog, Child, Chronic Disease/psychology, Congenital/diagnosis/epidemiology/psychology, Cystic Fibrosis/diagnosis/epidemiology/psychology, Diagnosis, Differential, Heart Defects, Humans, Journal Article, Juvenile Rheumatoid/diagnosis/epidemiology/psychology, Mental Disorders/diagnosis/epidemiology/etiology, Pao M, The Psychiatric Clinics Of North America, Time Factors, Turkel S

Cystic fibrosis and transition to adult medical care

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older…

Tags: 2010, Adolescent, Adolescent Transitions, Age Factors, Backlog, Britto MT, Cystic Fibrosis/therapy, Humans, Journal Article, Pediatrics, Referral And Consultation, Sawicki GS, Schwartz L, Tuchman LK, Young Adult

Quality of end of life care in adolescent and young adults with cancer in Japan

Introduction About 4% of all cancers occur in adolescent and young adults (AYA) population in Japan. Quality and intensity of end-of-life (EOL) care in this population vary among different nationalities or cultures. Objectives We aimed to evaluate…

Browse Items (984 total)