Browse Items · Pediatric Palliative Care Library

Metronomics during palliative care in paediatric oncology? For sure! But handle me with care

Tags: 2016, Acta Paediatrica, Administration, Andre N, Child, Humans, Metronomic, Neoplasms/dt [drug Therapy], Oncology 2017 List, Palliative Care/mt [methods], Pasquier E

Current classification of mitochondrial disorders

2003

Tags: 2003, Adolescent, Adult, Andreu AL, Animals, Backlog, Child, DiMauro S, DNA, Humans, Journal Article, Journal Of Neurology, Mitochondrial Diseases/classification/genetics, Mitochondrial/genetics, Mutation

Locating a geography of nursing: space, place and the progress of geographical thought

Although traditionally, nursing research has paid little attention to geographical approaches, recent years have witnessed some initial research interest in the dynamic between nursing, space and place. Such research potentially represents the…

Tags: 2003, Andrews GJ, Backlog, Demography, Humans, Journal Article, Nursing, Nursing Philosophy, Nursing Research, Philosophy

GRADE guidelines: 15. Going from evidence to recommendation-determinants of a recommendation's direction and strength

In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach…

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

OBJECTIVE: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it…

ESPEN Guidelines on Enteral Nutrition: Cardiology and pulmonology

These guidelines are intended to give evidence-based recommendations for the use of enteral nutrition (EN) in patients with chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD). They were developed by an interdisciplinary…

The syndrome of cardiac cachexia

Cachexia, i.e. body wasting, has long been recognised as a serious complication of chronic illness. The occurrence of wasting in chronic heart failure (CHF) has been known for many centuries, but it has not been investigated extensively until…

Tags: 2002, Anker SD, Backlog, Cachexia/diagnosis/etiology/therapy, Congestive/complications/diagnosis/therapy, Greece, Heart Failure, Humans, International Journal Of Cardiology, Journal Article, Non-U.S. Gov't, Prognosis, Research Support, Sharma R, Syndrome

Cardiac cachexia

Chronic heart failure (CHF) remains an important and increasing public health care problem. It is a complex syndrome affecting many body systems. Body wasting (i.e., cardiac cachexia) has long been recognised as a serious complication of CHF. Cardiac…

Tags: 2004, Anker SD, Annals Of Medicine, Backlog, Cachexia/etiology/therapy, Cytokines/immunology, Heart Diseases/etiology/therapy, Humans, Journal Article, Neurosecretory Systems/physiopathology, Non-U.S. Gov't, Research Support, Steinborn W, Strassburg S

A Delphi study of district nursing research priorities in Australia

This study, using a Delphi approach, sought the opinion of a self-selected panel of 320 district nurses regarding research priorities for district nursing in Australia. Over three rounds of questionnaires, the 419 research clinical problem areas…

Tags: 2005, Annells M, Applied Nursing Research, Australia, Backlog, Delphi Technique, Deroche M, Evidence-based Medicine, Humans, Journal Article, Koch T, Lewin G, Lucke J, Non-U.S. Gov't, Nursing Research, Research, Research Support

Improvements In Communication And Relationship Building Are Essential

Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ).…

Tags: 2016, Anonymous, Communication, Humans, Nurse-patient Relations, Nursing Children and Young People, Palliative Care/st [standards], Pediatric Nursing/mt [methods], Pediatric Nursing/st [standards], September 2017 List

Challenging the framework for evidence in palliative care research

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the…

Tags: 2005, Aoun S, Backlog, Evidence-Based Medicine/standards, Health Services Research, Humans, Journal Article, Kristjanson LJ, Palliative Care, Palliative Medicine, Randomized Controlled Trials/methods, Research Design/standards

A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

What is a pilot or feasibility study? A review of current practice and editorial policy

BACKGROUND: In 2004, a review of pilot studies published in seven major medical journals during 2000-01 recommended that the statistical analysis of such studies should be either mainly descriptive or focus on sample size estimation, while results…

Tags: 2010, Arain M, Backlog, Bmc Medical Research Methodology, Campbell MJ, Cooper CL, Data Interpretation, Editorial Policies, Feasibility Studies, Humans, Journal Article, Lancaster GA, Methods, Pilot Projects, statistical

The long-term effects of later life spousal and parental bereavement on personal functioning

Using data from Americans' Changing Lives: Wave 1, 1986, this study examined the long-term effects on the personal functioning of older women and men following the death of an adult child or a spouse. Guided by Weiss's (1993) theoretical framework,…

Pediatric end-of-life decisions when abuse is suspected

Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors

PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed…

Exploring fathers' experiences of pregnancy after a prior perinatal loss

PURPOSE: To explore fathers' experiences of pregnancy after a prior perinatal loss. STUDY DESIGN AND METHODS: This phenomenological study used unstructured, in-depth interviews with four men whose wives were currently pregnant subsequent to previous…

Tags: 2001, Adult, Armstrong D, Backlog, Fathers, Female, Fetal Death, Grief, Humans, Journal Article, Male, Maternal-Child Nursing, Pregnancy/psychology, Spirituality, The American Journal Of Maternal Child Nursing

AIMP1 deficiency presents as a cortical neurodegenerative disease with infantile onset

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

Pharmacokinetic drug interactions of morphine, codeine, and their derivatives: theory and clinical reality, Part II

Pharmacokinetic drug-drug interactions with codeine, dihydrocodeine, hydrocodone, oxycodone, and buprenorphine are reviewed in this column. These compounds have a very similar chemical structure to morphine. Unlike morphine, which is metabolized…

Tags: 2003, Armstrong SC, Backlog, Codeine/chemistry/metabolism/pharmacology, Cozza KL, Drug Synergism, Humans, Journal Article, Morphine/chemistry/metabolism/pharmacology, Pain/drug Therapy, Psychosomatics

Fathers' experiences in the neonatal intensive care unit: a search for control.

OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male…

Prevalence and progression of mitochondrial diseases: a study of 50 patients

We report 50 patients with various clinical phenotypes of mitochondrial disease studied over the past 10 years in a large urban area (Madrid Health Area 5). The clinical phenotypes showed a large variety of abnormalities in molecular biology and…

Tags: 2003, Adolescent, Adult, Age of Onset, Aged, Arenas J, Arpa J, Arpa-Fernandez A, Backlog, Campos Y, Chronic Progressive External/ep [Epidemiology], Chronic Progressive External/ge [Genetics], Chronic Progressive External/pa [Pathology], Cruz-Martinez A, Del Hoyo P, Disease Progression, DNA, Electromyography, Epilepsies, Female, Garcia-Rio F, Gutierrez-Molina M, Humans, IM, Journal Article, Lactic Acid/bl [Blood], Male, Martin MA, MELAS Syndrome/ep [Epidemiology], MELAS Syndrome/ge [Genetics], MELAS Syndrome/pa [Pathology], Middle Aged, Mitochondrial Diseases/ep [Epidemiology], Mitochondrial Diseases/ge [Genetics], Mitochondrial Diseases/pa [Pathology], Mitochondrial/ge [Genetics], Muscle, Muscle & Nerve, Myoclonic/ep [Epidemiology], Myoclonic/ge [Genetics], Myoclonic/pa [Pathology], Neural Conduction/ph [Physiology], Ophthalmoplegia, Perez-Conde C, Phenotype, Rubio JC, Skeletal/pa [Pathology], Spain/ep [Epidemiology], Survival Analysis

Late onset globoid cell leukodystrophy (Krabbe's disease)--Swedish case with 15 years of follow-up.

We describe a male patient with late onset globoid cell leukodystrophy (GLD) (Krabbe's disease) still alive at 24 years of age, with a well preserved intellectual and communicative capacity, in contrast to visual failure and severe central pyramidal…

Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff

OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect…

Palliative Care. Workforce Development

Palliative care is delivered in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, community settings and aged care services. People who are dying have needs which…

Tags: 2016, Ash K, Australia, Australian Nursing & Midwifery Journal, Clinical Competence, Continuing, Education, Hospice and Palliative Care Nursing/ed [Education], Hospice and Palliative Care Nursing/ma [Manpower], Humans, March 2018 List, Nursing, Yates P

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies

BACKGROUND: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. OBJECTIVE: The objective of this systematic review was to…

Tags: 2019, Asato M, Ashcraft LE, Health Facilities, Houtrow AJ, Humans, Kavalieratos D, Miller E, Observational Studies as Topic, Parents/psychology, Patient, Pediatrics, Power (psychology), Ray KN, September 2019 List

The ocular features of the mucopolysaccharidoses

AIMS: The mucopolysaccharidoses (MPS) are a heterogeneous group of rare disorders characterised by accumulation of glycosaminoglycans within multiple organ systems. This study aimed to determine the prevalence and severity of ocular complications in…

Coping through emotional approach: a new look at emotion, coping, and health-related outcomes

Researchers studying stress and coping processes have attempted to identify which coping strategies are most adaptive in stressful encounters. A generally accepted conclusion has been that emotion-focused coping processes are associated with…

Tags: 2004, Adaptation, Adult, Austenfeld Jennifer L, Backlog, Emotions, Health Status, Humans, Journal Article, Journal Of Personality, Outcome Assessment (health Care), Psychological, Psychometrics, Stanton AL, Stress

Risperidone treatment of autistic disorder: longer-term benefits and blinded discontinuation after 6 months

OBJECTIVE: Risperidone is effective for short-term treatment of aggression, temper outbursts, and self-injurious behavior in children with autism. Because these behaviors may be chronic, there is a need to establish the efficacy and safety of…

Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn

BACKGROUND: It has been argued that having a stillborn baby in the family affects older siblings more than parents realize. The aim of this study was to describe parenthood and the needs of siblings after stillbirth from the parents' perspective.…

Tags: 2011, Adolescent, Adult, Avelin P, Backlog, Birth (berkeley, Calif.), Child, Erlandsson K, Female, Hildingsson I, Humans, Infant, Journal Article, Male, Parenting, Preschool, Rådestad I, sibling bereavement, Siblings, Stillbirth, Sweden

Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement…

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize…

Endogenous opioids in wound-site neutrophils of sternotomy patients

Medical care utilization by incurable cancer patients in a Swedish county

A retrospective study of patients with cancer diagnoses treated at a Swedish county hospital was carried out in order to analyse medical care utilization by incurable cancer patients. All 208 patients customarily treated at the Department of General…

Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units

OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been…

Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death

OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute…

Plasma beta-endorphin during clinical and experimental ischaemic pain

An improved radio-immunoassay using an antiserum directed towards the N-terminal part of the endogenous opioid peptide beta-endorphin 1-31 (beta-EP) was validated and applied to a study of beta-EP in plasma during ischaemic pain. Experimental…

Increase of plasmatic beta-endorphin immunoreactive material in children in the perioperative period: the influence of the site of surgery

BACKGROUND: The primary aim of the study was to confirm the increase of plasmatic IR beta-endorphin material during the perioperative period in children. The second was to search for the factors responsible for this increment. METHODS: Seventy-two…

Vignette studies of medical choice and judgement to study caregivers' medical decision behaviour: systematic review

Compassionate silence in the patient-clinician encounter: a contemplative approach

In trying to improve clinician communication skills, we have often heard clinicians at every level admonished to "use silence," as if refraining from talking will improve dialogue. Yet we have also noticed that this "just do it," behavior-focused…

Tags: 2009, Back AL, Backlog, Bauer-Wu SM, Communication, Empathy, Halifax J, Humans, Journal Article, Journal of Palliative Medicine, Physician-patient Relations, Professional-family Relations, Rushton CH, Truth Disclosure

Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center

BACKGROUND: The VA Puget Sound Health Care System (VAPSHCS) started a palliative care service (PCS) in October 2001 to provide case management for patients with advanced cancer. OBJECTIVE: To examine resource use during the last 60 days of life for…

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