Browse Items · Pediatric Palliative Care Library

Comparing parent loss with sibling loss

The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's…

Neuropathic pain: aetiology, symptoms, mechanisms, and management

We highlight current theories about peripheral neuropathic pain and show that progress in management is contingent on targeting treatment not at the aetiological factors or the symptoms but at the mechanisms that operate to produce the symptoms. This…

Tags: 1999, Backlog, Humans, Journal Article, Lancet, Mannion RJ, Pain Threshold/physiology, Pain/drug therapy/etiology/physiopathology, Peripheral Nerves/physiopathology, Peripheral Nervous System Diseases/drug therapy/etiology/physiopathology, Woolf CJ

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

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…

Advance directives in a pediatric emergency department.

Parents of children with terminal illnesses are not always present when a life-threatening event occurs. For many of these children, an advance directive specifying alternate code orders has been written by the parent or legal guardian (hereafter the…

Sedation and analgesia in paediatric intensive care units: a guide to drug selection and use

The indications for sedation in the paediatric intensive care unit (PICU) patient are varied ranging from short term use for various procedures to prolonged administration to provide comfort during mechanical ventilation. When faced with the decision…

Tags: 1999, Analgesics/tu [Therapeutic Use], Backlog, Child, Human, Hypnotics and Sedatives/tu [Therapeutic Use], Intensive Care Units, Journal Article, Paediatric Drugs, Pediatric, Tobias JD

Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research…

Tags: 1999, Backlog, Byock I, Field MJ, Journal Article, Journal of Pain and Symptom Management, Palliative Care, Patients, Quality Of Health Care, Quality Of Life, Research Design, Teno JM, Terminal Care, Terminally Ill

Putting patient and family voice back into measuring quality care for the dying

1999

Tags: 1999, Backlog, Journal Article, Teno JM, The Hospice Journal

Lessons learned and not learned from the SUPPORT project

1999

Tags: 1999, Adult, Backlog, Decision Making, Euthanasia, Health Care Costs, Hospitalization, Human, Journal Article, Palliative Medicine, Passive, Quality Of Life, Randomized Controlled Trials, Teno JM, Terminally Ill

Operationalizing a conceptually based noncategorical definition: a first look at US children with chronic conditions

1999

Tags: 1999, Archives Of Pediatrics & Adolescent Medicine, Backlog, Journal Article, Miller 2009 BMC HSR Refs, Silver EJ, Stein RE

Bisphosphonates: from grandparents to grandchildren

Bisphosphonates are synthetic analogues of pyrophosphate that inhibit bone resorption by their action on osteoclasts. Bisphosphonates have been extensively used in the elderly with primary and secondary osteoporosis, Paget's disease, and…

Research in children: ethical and scientific aspects

Living with cerebral palsy and tube feeding: A population-based follow-up study

OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children…

Levomepromazine for nausea and vomiting in advanced cancer

Levomepromazine (previously known as methotrimeprazine), despite virtually no high quality scientific data to support its use, has become a very popular antiemetic for use in patients with advanced cancer. This article considers the reasons for this.

Tags: 1999, Backlog, Dopamine Antagonists/adverse effects/therapeutic use, Hospital Medicine, Humans, Journal Article, Methotrimeprazine/adverse effects/therapeutic use, Nausea/drug therapy/etiology, Neoplasms/complications, Non-U.S. Gov't, Palliative Care, Research Support, Skinner A, Skinner J, Vomiting/drug therapy/etiology

Efficacy of pharmacological treatments of neuropathic pain: An update and effect related to mechanism of drug action

Tricyclic antidepressants and carbamazepine have become the mainstay in the treatment of neuropathic pain. Within the last decade, controlled trials have shown that numerous other drugs relieve such pain. We identified all placebo-controlled trials…

Expanding role of bisphosphonate therapy in children

1999

Tags: 1999, Backlog, Bone Diseases/drug therapy, Calcinosis/drug therapy, Child, Clodronate, Diphosphonates/pharmacokinetics/pharmacology/therapeutic use, Humans, Hypercalcemia/drug therapy, Journal Article, Shoemaker LR, The Journal Of Pediatrics

Methadone titration in opioid-resistant cancer pain

AIM: To assess the use of methadone in patients with cancer pain who fail to respond to increasing doses of other opioids or experience intolerable side-effects from them. METHOD: Inpatients of a specialist palliative care unit were titrated onto…

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…

Proopiomelanocortin (POMC) disregulation and response to opiate blockers

Autism is a collection of disorders or subtypes with distinctive or prominent phenotypes and genotypes. The study of adults with autism offers a unique opportunity to examine its phenotypic diversity. Recent evidence has identified disturbances in…

Tags: 1999, Adult, Autistic disorder, Backlog, Journal Article, Mental Retardation And Developmental Disabilities Research Reviews, Naltrexone, Pro-Opiomelanocortin, Sandman CA, Self-Injurious behavior, Smith M, Spence MA

Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted…

Perceptions of control and long-term recovery from rape

The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and…

Variability in physician opinion on limiting pediatric life support

OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…

Consulting with the bereaved mother

1999

Tags: 1999, Backlog, Journal Article, Journal Of Human Lactation, Pugmire L

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…

Neostigmine for the treatment of acute colonic pseudo-obstruction

BACKGROUND: Acute colonic pseudo-obstruction -- that is, massive dilation of the colon without mechanical obstruction -- may develop after surgery or severe illness. Although it may resolve with conservative therapy, colonoscopic decompression is…

The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy.

OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted…

Computer-assisted health counselor visits: a low-cost model for comprehensive adolescent preventive services

OBJECTIVE: To evaluate a low-cost strategy for providing preventive health services to adolescents using computerized health assessments with individualized educational videos, trained health counselors, and nurses. DESIGN: Feasibility study, cost…

Psychosocial impact of pediatric BMT on siblings

1999

Tags: 1999, Backlog, Bone Marrow Transplantation, Journal Article, Packman WL

Pain in Children with Significant Neurological Impairment

1999

Tags: 1999, Analgesics/therapeutic use, Backlog, Cerebral Palsy/complications, Child, Communication, Developmental And Behavioral Pediatrics, Humans, Journal Article, Montgomery C, Nervous System Diseases/complications, O'Donnell M, Oberlander T, Pain Measurement, Pain/complications/diagnosis/drug therapy/etiology, RDF Project

Levomepromazine (methotrimeprazine) and the last 48 hours

Levomepromazine (previously known as methotrimeprazine) has a broad range of beneficial effects in the terminal phase of many illnesses, resulting from its combined antipsychotic, anxiolytic and sedative actions. Levomepromazine can safely be…

Tags: 1999, Antipsychotic Agents/pharmacology/therapeutic use, Backlog, Fountain A, Hospital Medicine, Humans, Journal Article, Methotrimeprazine/pharmacology/therapeutic use, Non-U.S. Gov't, O'Neill J, Psychomotor Agitation/therapy, Psychotic Disorders/drug therapy, Research Support, Terminal Care, Terminally Ill/psychology

Use of melatonin to treat sleep disorders in tuberous sclerosis

The results of a therapeutic trial of the use of melatonin in patients with tuberous sclerosis complex who also have severe sleep problems are reported. We used a randomized double-blind placebo-controlled crossover design. Seven patients with…

Tags: 1999, Clarke A, Developmental Medicine and Child Neurology, Hancock E, Hunt A B A, melatonin, O'Callaghan F J K, Osborne J P, pharmacologic intervention, sleep disturbance/disorders, Tuberous Sclerosis

Narrative strategies in grief therapy

The field of grief therapy is currently in a state of conceptual revolution, opening the prospect of reconfiguring our understanding of the human experience of loss along constructivist lines. In this article I outline some of the tenets of such an…

Tags: 1999, Backlog, Grief, Human, Journal Article, Journal Of Constructivist Psychology, Meaning, Narrative, Neimeyer RA

Trisomy 18 in Kuwait.

1999

Tags: 1999, Abulhassan SA, Al-Awadi SA, Backlog, Bastaki L, Gouda S, International Journal Of Epidemiology, Journal Article, Longitudinal Studies, Moussa MA, Murthy DS, Mustafa F, Naguib KK, Redha MA, Tayel SM

Insider or outsider, both or neither: some dilemmas of interviewing in a cross-cultural setting

This paper contributes to the growing literature on methods and techniques for conducting qualitative research in economic geography, as well as to recent feminist debates on the impact that relationships of power between researchers and their…

Tags: 1999, Backlog, Geoforum, Journal Article, Mullings B

Oropharyngeal dysfunction and gastroesophageal dysmotility are present in girls and women with Rett syndrome

BACKGROUND: Feeding impairment frequently complicates the course of children with neurologic disorders and places them at risk for malnutrition and growth failure. Although feeding abnormalities have been reported in female patients with Rett…

Systematic review and meta-analysis of randomized controlled trials of cognitive behaviour therapy and behaviour therapy for chronic pain in adults, excluding headache

A computer and a hand search of the literature recovered 33 papers from which 25 trials suitable for meta-analysis were identified. We compared the effectiveness of cognitive-behavioural treatments with the waiting list control and alternative…

Serum melatonin kinetics and long-term melatonin treatment for sleep disorders in Rett syndrome

We studied the circadian rhythm of serum melatonin levels in two patients with classical Rett syndrome having severe sleep disorders; serum melatonin levels were measured before and during melatonin treatment using radioimmunoassay. Patient 1 had a…

Tags: 1999, Brain and Development, melatonin, Miyamoto A, Oki J, Okuno A, pharmacologic intervention, Rett syndrome, sleep disturbance/disorders, Takahashi S

Methadone response in advanced cancer patients with pain followed at home

Concerns about the safety of therapy with methadone, which may arise because of its pharmacokinetic characteristics and inappropriate dosing, may deter clinicians from using this drug, especially in elderly patients. Experience is accumulating that…

Better for it: how people benefit from adversity

Recently, researchers in several different fields have discovered that people who have experienced seriously adverse events frequently report that they were positively changed by the experience. Respondents in these studies typically have reported a…

Tags: 1999, Adaptation, Backlog, Humans, Internal-External Control, Journal Article, Life Change Events, McMillen JC, P.H.S., Psychiatric, Psychological, Research Support, Social Work, Survivors/psychology, U.S. Gov't

Guidelines for assistance to terminally ill children with cancer: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology

This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the…

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