Browse Items · Pediatric Palliative Care Library

Air swallowing in Rett syndrome

The possible causes of excessive swallowing of air leading to bloating, which is common in Rett syndrome (RS), were investigated during feeding and at rest. Seven individuals with RS aged between 4 and 33 years (three with air bloat) underwent…

Oropharyngeal dysphagia and aspiration in patients with ataxia-telangiectasia

Objectives: To determine whether patients with ataxia-telangiectasia exhibit oropharyngeal dysphagia with concomitant aspiration and to examine the relationships among swallowing function, age, and nutritional status. Study design: Seventy patients…

Tags: 2000, ataxia telangectasia, characteristics, Children, Crawford T O, dysphagia aspiration, feeding difficulties, Journal of Pediatrics, Koerner C B, Lederman H M, Lefton-Greif M A, Loughlin G M, low weight, Pediatrics, Trajectory, Winkelstein J A, Zaburak M

Sleep alterations in juvenile neuronal ceroid-lipofuscinosis

In juvenile neuronal ceroid-lipofuscinosis (JNCL), sleep disorders are common. The purpose of this study was to investigate the sleep structure of 28 patients with JNCL compared with healthy controls subjects and to clarify the pathophysiology…

The effect of continuity of care on emergency department use

OBJECTIVE: To examine whether continuity of care with an individual health care provider is associated with the number of hospital emergency department (ED) visits in a statewide Medicaid population. DESIGN: A cross-sectional study based on a 100%…

Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians

2000

Tags: 2000, Archives Of Internal Medicine, Backlog, Caldwell ES, Collier AC, Curtis JR, Journal Article, Patrick DL, Physicians, Syndrome

Preventive services in a health maintenance organization: how well do pediatricians screen and educate adolescent patients?

OBJECTIVE: To determine whether pediatricians in managed care settings adhere to national guidelines concerning the provision of clinical preventive services. DESIGN: Surveys were mailed between September 1996 and April 1997 to all pediatricians…

Coordination of speciality referrals and physician satisfaction with referral care

2000

Tags: 2000, Archives Of Pediatrics & Adolescent Medicine, Backlog, Baker A, Bocian A, Forrest C, Glade G, Journal Article, Starfield B, von Schrader S

Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study

CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine…

Hospital care of patients with dementia.

Learning to care for people with chronic illness facing the end of life

2000

Tags: 2000, Backlog, Death and Euthanasia, Health Services Accessibility, Health Services Research, JAMA, Journal Article, Lynn J, Palliative Care/economics/standards/trends, Policy Making, Professional Patient Relationship, Quality Of Health Care, RDF Project, Terminal Care/economics/standards/trends, United States

Whatever happened to qualitative description?

The general view of descriptive research as a lower level form of inquiry has influenced some researchers conducting qualitative research to claim methods they are really not using and not to claim the method they are using: namely, qualitative…

Tags: 2000, Backlog, Data Collection, Data Interpretation, Humans, Journal Article, Nursing Research/methods, Research Design, Research In Nursing & Health, Sandelowski M, statistical

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…

Causal links between stressful events, coping style, and adolescent symptomatology

In a longitudinal study, the causal links between different types of stressors, coping styles and adolescent symptomatology were investigated. A total of 94 adolescents and their mothers participated in three annual assessments of critical life…

Tags: 2000, Adaptation, Adolescent, Adolescent Behavior/psychology, Backlog, Female, Follow-up Studies, Humans, Journal Article, Journal Of Adolescence, Life Change Events, Male, Prospective Studies, Psychological, Psychological/psychology, Seiffge-Krenke I, Stress

The determinants of health care seeking behaviour of adolescents attending STD clinics in South Africa

The study investigated the determinants of delay behaviour in health care seeking in a sample of 292 adolescent patients (20 years and younger) with STD symptoms. Fifty six percent (56%) of the adolescents sought health care within the first 6 days…

Stories of life transition: subjective well-being and ego development in parents of children with down syndrome

Eighty-seven parents of children with Down Syndrome (DS; 63 women, 24 men) wrote narratives about finding out that their child had DS and completed questionnaire measures of subjective well-being (SWB) and stress-related growth and completed the…

Tags: 2000, Backlog, Down Syndrome, Growth, Journal Article, Journal Of Research In Personality, King LA, Narrative, Parent caregiving, Ramsey C, Scollon CK, Subjective Well-Being, Transition, Well Being, Williams T

Terminal nutrition: framing the debate for the withdrawal of nutritional support in terminally ill patients

Nutrition and hydration have long been considered to be life-sustaining therapies that are associated with comfort and relief of suffering. This belief is largely based on our own experiences with the sensations of thirst and hunger, which have led…

Tags: 2000, Backlog, Death and Euthanasia, Enteral Nutrition/adverse effects, Ethics, Fasting/physiology/psychology, Humans, Journal Article, Medical, Medical Futility, Parenteral Nutrition/adverse effects, Terminal Care/methods/standards, The American Journal Of Medicine, United States, Winter SM

Pediatric acute pain management

The past decade has brought about an explosion of knowledge about the physiology of nociception and many new techniques for pain relief, new analgesic drugs, and new applications of old analgesic drugs. These techniques include methods of opioid…

Novel opioid peptides endomorphin-1 and endomorphin-2 are present in mammalian immune tissues

Endomorphin (EM)-1 and EM-2 are opioid tetrapeptides, reported within the central nervous system, which have very high specificity and affinity for the mu-opioid receptor. We have used newly developed and well-characterised radioimmunoassays (RIAs)…

Systemic lidocaine for neuropathic pain relief

The effectiveness of systemic lidocaine in relieving acute and chronic pain has been recognized for over 35 years. In particular, systemic lidocaine has been utilized both as a diagnostic and therapeutic tool for intractable neuropathic pain during…

Tags: 2000, Administration, Analgesics/administration & dosage/diagnostic use/therapeutic use, Animals, Backlog, Chen LL, Humans, Journal Article, Lidocaine/administration & dosage/diagnostic use/therapeutic use, Mao J, Mexiletine/therapeutic use, Neuralgia/drug therapy/metabolism, Oral, P.H.S., Pain, Research Support, Sodium Channel Blockers, U.S. Gov't

Pain in children and adolescents: a common experience

2000

Tags: 2000, Backlog, Bohnen AM, Hazebroek-Kampschreur AA, Hunfeld Joke AM, Journal Article, Pain, Passchier J, Perquin CW, van der Wouden JC, van Suijlekom-Smit Lisette WA

Quantitative estimation of rare adverse events which follow a biological progression: a new model applied to chronic NSAID use

Randomised controlled trials (RCTs) alone are unlikely to provide reliable estimates of the incidence of rare events because of their limited size. Cohort, case control, and other observational studies have large numbers but are vulnerable to various…

Evaluative research on palliative support teams: a literature review

Sixteen studies on the effectiveness of palliative support teams were analyzed. It was established that in most cases uncontrolled designs with repeated measurements were used. The assessment methods varied strongly. However, the Support Team…

Tags: 2000, Backlog, Evaluation Studies, Francke AL, Human, Journal Article, Palliative Care/st [standards], Patient Care Team/st [Standards], Patient Education and Counseling, Process Assessment (Health Care), Process Assessment (Health Care)/mt [Methods], Process Assessment (Health Care)/st [Standards]

Physician-older patient communication at the end of life.

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews…

Variability of analgesic practices for hospitalized children on different pediatric specialty units

This study examined the differences in the prescription and administration of analgesics in eight pediatric specialty units. Medical records of patients (n = 153) who were reported by nurses to be having pain were reviewed. Results showed that there…

Tags: 2000, Analgesics/administration & dosage/therapeutic use, Backlog, Child, Female, Hospital Units, Humans, Jacob E, Journal Article, Journal of Pain and Symptom Management, Male, Non-U.S. Gov't, P.H.S., Pain/drug Therapy, Pediatrics, Preschool, Puntillo KA, Research Support, U.S. Gov't

Are special ethical guidelines needed for palliative care research?

Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort.…

Tags: 2000, Backlog, Biomedical and Behavioral Research, Casarett DJ, Death and Euthanasia, Ethics, Guidelines As Topic, Humans, Journal Article, Journal of Pain and Symptom Management, Karlawish J, Medical, Multi-site Ethics, Palliative Care/standards, Research

An evaluation of the Faces Pain Scale with young children

The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It…

Tags: 2000, Backlog, Cassey J, Child, Facial Expression, Female, Hennessy R, Humans, Hunter M, Journal Article, Journal of Pain and Symptom Management, Male, McDowell L, Non-U.S. Gov't, Pain Measurement/methods/psychology, Preschool, Reproducibility of Results, Research Support

How children die in hospital.

A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236…

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…

Melatonin for the treatment of handicapped children with severe sleep disorders

Sleep disorders are common in children with mental retardation and neurologic disorders. Melatonin, a recently developed natural compound, has been used successfully in sleep disorders. I report my experience with melatonin in an open, prospective…

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…

Essential fatty acids in the nutrition of severely neurologically disabled children

Essential fatty acids (EFA) are important for the normal development and functioning of the brain, retina and immune competent cells. Severely neurologically handicapped children often have feeding difficulties, and the composition of the diet may be…

Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study

The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377…

An assessment of gender differences in the perception of benefit resulting from the loss of a child.

The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma,…

Patterns of children's coping with life stress: implications for clinicians

In a study of children's patterns of coping with daily stressors, boys and girls 9-17 years old were asked to complete a coping checklist in response to one of four types of stressors--school, parents/family, siblings, or peer/interpersonal. Patterns…

Tags: 2000, Adaptation, Adolescent, Backlog, Child, Danovsky M, Defense Mechanisms, Donaldson D, Female, Humans, Journal Article, Male, Personality Inventory, Prinstein MJ, Psychological, Psychological/psychology, Spirito A, Stress, The American Journal Of Orthopsychiatry

Greek Parents' ractions, difficulties and resources in childhood leukaemia at the time of diagnosis

2000

Tags: 2000, Backlog, European Journal Of Cancer, Journal Article, Makrodimitri P, Panteli V, Patistea E

The importance of 'knowing the patient': community nurses' constructions of quality in providing palliative care

This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which…

Tags: 2000, Austin L, Backlog, Caress A, Community Health Nursing, Death and Euthanasia, Empirical Approach, England, Hallett CE, Health Care Reform, Humans, Journal Article, Journal Of Advanced Nursing, Luker KA, Nurse-patient Relations, Palliative Care/standards, Quality Of Health Care, Questionnaires

Pain control by immune-derived opioids

1. The nervous and immune systems communicate with each other by use of cytokines and neuropeptides. 2. Interactions between immune cell-derived opioid peptides and opioid receptors located in peripheral inflamed tissue lead to endogenous analgesia.…

Tags: 2000, Analgesics, Backlog, Biomarkers of Pain, Clinical And Experimental Pharmacology & Physiology, Humans, Journal Article, Machelska H, Neuropeptides/therapeutic use, Opioid/drug effects/immunology, Opioid/therapeutic use, Pain/drug therapy/immunology, Peripheral Nervous System/drug effects, Receptors, Stein C

Cudahy high school survey and focus groups: assessment of the needs of a teen population. A community-campus collaboration

Collaboration between local public health agencies and university schools of nursing can be advantageous to both parties. Students need opportunities to learn aggregate-based care; health officers need community partnerships that expand their…

Communication breakdown in the outpatient referral process

Objective: To evaluate primary care and specialist physicians' satisfaction with interphysician communication and to identify the major problems in the current referral process. Design: Surveys were mailed to providers to determine satisfaction with…

Tags: 2000, Ambulatory Care, Backlog, Bates D, Communication, Consultation, Fairchild D, Franklin M, Gandhi T, Journal Article, Journal Of General Internal Medicine, Referral, Sittig D, Sussman A

Prophylactic pharmacological treatment of chronic daily headache

OBJECTIVE: To review all the prophylactic pharmacological treatments for chronic daily headache from the past decade. BACKGROUND: Chronic daily headache is among the most common diagnoses seen in specialized headache centers. Prior to 1988, there…

Tags: 2000, Anticonvulsants/therapeutic use, Antidepressive Agents/contraindications/therapeutic use, Backlog, Chronic Disease, Headache, Headache Disorders/classification/drug therapy/etiology/prevention & control, Headache/diagnosis/drug therapy/etiology/prevention & control, Humans, Journal Article, Periodicity, Redillas C, Solomon S

Browse Items (122 total)