Browse Items · Pediatric Palliative Care Library

Symptoms and problem clusters in cancer and non-cancer patients in specialized palliative care-is there a difference?

CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to…

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Tags: 2014, Andrews GS, Archives of Disease in Childhood, Backlog, Cadell S, Charting the territory, Davies B, Feichtinger L, Genetics, Journal Article, Metabolic, Neurodisability, PEDI Study, Siden H, Singh M, Steele R

Impact of research participation on parents of seriously ill children

Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of…

Tags: 2014, Andrews GS, Backlog, Cadell S, Caregivers, Feichtinger L, Journal Article, Journal of Palliative Medicine, research participation, Siden H, Smit Quosai T, Steele R

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

CANSIM - 105-0592 - Health indicator profile, two-year period estimates, by age group and sex, Canada, provinces, territories, census metropolitan areas and influence zones

Health indicator profile, two-year period estimates, by age group and sex, Canada, provinces, territories, census metropolitan areas and influence zones

Tags: 2014, Backlog, Journal Article, none, Social Support and Chronic Pain, Statistics Canada Government of Canada

Comparing PECS and VOCA to promote communication opportunities and to reduce stereotyped behaviors by three girls with Rett syndrome

We compared PECS and VOCA intervention strategies to promote communication opportunities for three girls with Rett syndrome and severe to profound developmental disabilities. The first aim of the study was to assess the effectiveness of both…

Hospital medicine and pediatric palliative care

2014-08

Tags: 2014, Backlog, Child, Hospital Medicine, Humans, Journal Article, Palliative Care, Pediatric Clinics of North America, Pediatrics, Stanton BF

Autism traits in children and adolescents with Cornelia de Lange syndrome

Cornelia de Lange syndrome (CdLS) is a cohesinopathy causing delayed growth and limb deficits. Individuals with CdLS have mild to profound intellectual disability and autistic features. This study characterizes the behavioral phenotype of children…

Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales

Lexicon of Terms in Pediatric Palliative Care

PedPalASCNET-Lexicon-31-July2014-Final.pdf

This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the…

Tags: 2014, Davies D, Macdonald ME, Siden H, Spicer S, Vadeboncoeur C

Gemcitabine and docetaxel for the treatment of children and adolescents with recurrent or refractory osteosarcoma: Korea Cancer Center Hospital experience

BACKGROUND: We evaluated the efficacy of gemcitabine and docetaxel chemotherapy (GEM + DOC) in children and adolescents with recurrent or refractory osteosarcoma. METHODS: Data of 28 patients (20 male, 8 female) who received gemcitabine (675 or 900…

Changing the focus of care: from curative to palliative care.

The improvements in the obstetrical and neonatal diagnosis and therapies have resulted into an increase in the survival rate of infants previously considered as non-viable. Debate is focusing on professionals’ behaviour about withdrawal or…

Tags: 2014, Backlog, Conference Paper, Monari C, Sandri F, Soffritti S

The use of playing by the nursing staff on palliative care for children with cancer

This study aimed to describe ways of using play by the nursing staff on palliative care of children with cancer and analyze the facilitators and barriers of the use of playing on this type of care. Qualitative, descriptive research developed on…

Tags: 2014, Backlog, Cursino EG, da Silva LF, Goes Fernanda Garcia Bezerra, Journal Article, Revista Gaúcha De Enfermagem, Soares Vanessa Albuquerque

Using patient-reported outcomes in clinical practice: a promising approach?

2014-04

Tags: 2014, Backlog, Electronic Health Records, Female, Humans, Journal Article, Journal Of Clinical Oncology, Male, Neoplasms, Palliative Care, Snyder CF

Examining the effects of perceived social support on momentary mood and symptom reports in asthma and arthritis patients

Objective: Social support has been linked to beneficial effects on health directly (main effect) and as a buffer to stress. Most research, however, has examined these relationships using global and retrospective assessments of health and stress,…

Tags: 2014, Backlog, Filipkowski KB, Journal Article, Psychology & Health, Santuzzi AM, Smyth JM, Social Support and Chronic Pain, Zawadzki MJ

Family-Centered Developmentally Supportive Care in the Neonatal Intensive Care Unit: Exploring the Role and Training of Child Life Specialists

Child life specialists provide family-centered, developmentally supportive care for infants in the NICU. However, there is limited research concerning this role. Using an online survey, this study explores child life specialists’ responsibilities in…

Tags: 2014, Backlog, Children's Health Care, Desai PP, Engelke SC, Journal Article, Sira N, Smith JG

Giving hope to families in palliative care and implications for practice

Caring for a dying child and the family is one of the greatest nursing challenges. The way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope, and healthcare professionals can…

Tags: 2014, Attitude To Death, Backlog, Child, Communication, Family Nursing, Female, Hope, Hospice And Palliative Care Nursing, Humans, Infant, Journal Article, Male, Nursing Children and Young People, Smith H

Postnatal care by provider type and neonatal death in sub-Saharan Africa: a multilevel analysis

Globally postnatal care (PNC) of the newborn is being promoted as a strategy to reduce neonatal deaths, yet few studies have looked at associations between early PNC and neonatal outcomes in sub-Saharan Africa. In this study we look at the…

Tags: 2014, Backlog, Bmc Public Health, Brodish P, Haney E, Infant Mortality, Journal Article, Neonatal mortality, Scale-up, Singh K, Skilled providers, Unskilled providers

Risk factors for perinatal death in two different levels of care: a case–control study

According to the World Health Organization, there are over 6.3 million perinatal deaths (PND) a year worldwide. Identifying the factors associated with PND is very helpful in building strategies to improve the care provided to mothers and their…

Tags: 2014, Angulski LFRB, Backlog, Caldeira AP, Care levels, Journal Article, Maestá I, Maternity, Peraçoli JC, Perinatal Death, Reproductive Health, Risk Factors, Rudge MVC, Rugolo Lígia Maria Souza Suppo, Silveira Soares Moura PM

Pediatric euthanasia in Belgium: disturbing developments

2014-05

Tags: 2014, Active, Backlog, Belgium, Caplan AL, Child, Chronic Disease, Euthanasia, Humans, JAMA, Journal Article, Palliative Care, Personal Autonomy, Psychological, Siegel AM, Sisti DA, Stress, Terminal Care

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This…

Patterns of child death in England and Wales

2014-09

Tags: 2014, Backlog, Fleming P, Fraser J, Hain R, Journal Article, Sidebotham P, The Lancet, Ward-Platt M

Prognostic indicators for children and young people at the end of life: A Delphi study

BACKGROUND: Recognizing transitions in end of life care for children is difficult and hinders communication and care planning. AIM: To identify the signs and symptoms that are most useful in signalling which children may have end of life care needs.…

Tags: 2014, Backlog, Brook L, Cuddeford L, Delphi Technique, Fitzmaurice N, Journal Article, Palliative Medicine, Prognosis, Shaw KL, Thomas C, Thompson A, Wallis M

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

OBJECTIVE: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes. DESIGN: Pooled analysis of a retrospective cohort study. SETTING: Ontario, Canada. PARTICIPANTS: 3109 patients…

Exhaustion Of Food Budgets At Month’s End And Hospital Admissions For Hypoglycemia

One in seven US households cannot reliably afford food. Food budgets are more frequently exhausted at the end of a month than at other points in time. We postulated that this monthly pattern influenced health outcomes, such as risk for hypoglycemia…

Tags: 2014, Backlog, Bibbins-Domingo K, Bolger AF, Determinants Of Health, Disparities, Guzman D, Health Affairs, Journal Article, López A, Seligman HK

Pediatric Palliative Care for Children with Complex Chronic Medical Conditions

Children with complex chronic medical conditions are at risk for significant distress during multiple points in their life. Pediatric palliative care can meaningfully assist in providing support to the child and family throughout their complex care,…

Tags: 2014, Backlog, Children with complex chronic conditions, Dysautonomia, Feeding intolerance, Journal Article, Neuroirritability, Pediatric Clinics of North America, Schwantes S, Spiritual Care, Wells O'Brien H

Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise.

BACKGROUND: Although several tools to evaluate the credibility of health care guidelines exist, guidance on practical steps for developing guidelines is lacking. We systematically compiled a comprehensive checklist of items linked to relevant…

The Impact of a Wish: Caregiver Perceptions of the Benefits of Granted Wishes for Children with Life-Threatening Illnesses and their Families

Wish-granting organizations have provided wishes to families of children with serious illnesses for years, yet scant research has examined their benefits. This mixed-method investigation of 682 households explored the benefits of granted wishes to…

Tags: 2014, Backlog, Children's Health Care, family functioning, Journal Article, Psychological, Quality Of Life, Sarigiani P, Schilling ML, Stress

Caring for the Infant With Trisomy 18: The Bioethical Implications of Treatment Decisions on Nurses

2014-10

Tags: 2014, Backlog, Battista V, Journal Article, Journal Of Hospice & Palliative Nursing, Kang TI, Santucci G

Resilience and death: the nursing professional in the care of children and adolescents with life-limiting illnesses.

2014

Tags: 2014, Backlog, Ciência & Saúde Coletiva, Journal Article, Moreira MCN, Santos RAD

End-of-life Care In A Regional Level Iv Neonatal Intensive Care Unit After Implementation Of A Palliative Care Initiative

OBJECTIVE:
We hypothesized that the implementation of a neonatal palliative care initiative will result in improved markers of end-of-life care.

STUDY DESIGN:
A retrospective and prospective chart review of neonatal intensive care unit deaths…

Tags: 2014, Backlog, Journal Article, Journal Of Perinatology, Lechner BE, Samsel C

Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy

UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain…

Contributors and Inhibitors of Resilience Among Adolescents and Young Adults with Cancer

Purpose: Self-perceived resilience may enable coping and mitigate poor psychosocial outcomes among adolescent and young adult (AYA) patients with cancer. In order to inform the development of resilience-promoting interventions, we aimed to: (1)…

Tags: 2014, Backlog, Gordon K, Jones BL, Journal Article, Journal Of Adolescent And Young Adult Oncology, Rosenberg AR, Wharton C, Yi-Frazier JP

"I know it when I see it." The complexities of measuring resilience among parents of children with cancer

PURPOSE: Promoting parent resilience may provide an opportunity to improve family-level survivorship after pediatric cancer; however, measuring resilience is challenging. METHODS: The "Understanding Resilience in Parents of Children with Cancer" was…

Tags: 2014, Backlog, Jones BL, Journal Article, Rosenberg AR, Starks H, Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer

Long-Term Psychosocial Outcomes Among Bereaved Siblings of Children With Cancer

CONTEXT.: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and…

Tags: 2014, Backlog, Dussel V, Journal Article, Journal of Pain and Symptom Management, Kreicbergs U, Neville B, Osenga K, Postier A, Rosenberg AR, Wolfe J

Differences in Parent-Provider Concordance Regarding Prognosis and Goals of Care Among Children With Advanced Cancer

Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type.…

Tags: 2014, Backlog, Dussel V, Feudtner C, Geyer JR, Journal Article, Journal Of Clinical Oncology, Kang TI, Orellana L, Rosenberg AR, Wolfe J

What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer

Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…

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