Browse Items · Pediatric Palliative Care Library

Supporting the family after the death of a child.

The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to…

Changes in siblings after the death of a child from cancer.

IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…

A qualitative study of advice from bereaved parents and siblings.

Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40…

Tags: 2011, Backlog, Barrera M, Davies B, Foster TL, Gerhardt CA, Gilmer MJ, Hogan N, IM, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Miller KS, sibling bereavement, Thompson AL, Vannatta K

Sibling bereavement: research-based guidelines for nurses. [Review] [27 refs]

Despite the marked improvement in the treatment of childhood cancer in recent decades, there are children who die, leaving behind a legacy of grief for all who knew them, including their siblings. Nurses can play a significant role in facilitating…

Tags: 1993, Backlog, Davies B, IM, Journal Article, N, Seminars In Oncology Nursing, sibling bereavement

Sibling bereavement and grief responses. [Review] [63 refs]

A child's death can have a profound and lasting effect on surviving siblings. Early researchers and clinicians have suggested that siblings were at risk for serious psychopathology. However, in later studies, researchers found that although the grief…

Tags: 1993, Backlog, IM, Journal Article, Journal of Pediatric Nursing, N, Walker CL

Progressive sensorineural hearing loss in children with mitochondrial encephalomyopathies

OBJECTIVE: Mitochondrial disorders are responsible for a variety of neurological syndromes. Specific mitochondrial DNA mutations have been identified recently in some of these rare disorders. Clinical symptoms may occur in different organs to various…

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…

Shared life space and sibling bereavement responses.

1988-12

Tags: 1988, Backlog, Bereavement, Cancer Nursing, Davies B, IM, Journal Article, N, sibling bereavement

Wilson's disease: a longitudinal study of psychiatric symptoms

One hundred and twenty-nine cases of Wilson's disease (WD) were assessed at index admission and two follow-ups (F1 and F2) on a range of clinical and biochemical variables. The commonest psychiatric symptoms throughout were incongruous behavior,…

The natural course of infantile Pompe's disease: 20 original cases compared with 133 cases from the literature

OBJECTIVE: Infantile Pompe's disease is a lethal cardiac and muscular disorder. Current developments toward enzyme replacement therapy are promising. The aim of our study is to delineate the natural course of the disease to verify endpoints of…

Natural history of nonketotic hyperglycinemia in 65 patients

BACKGROUND: Glycine encephalopathy, also known as nonketotic hyperglycinemia (NKH), is an autosomal recessive disorder caused by a defect in the glycine cleavage system. NKH is classically associated with neonatal apnea, lethargy, hypotonia, and…

Tags: 2004, Adolescent, Age of Onset, AIM, Anticonvulsants/tu [Therapeutic Use], Apnea/et [Etiology], Apnea/th [Therapy], Applegarth D, Artificial, Backlog, Child, Corpus Callosum/ab [Abnormalities], Disease Progression, Female, Glycine/bl [Blood], Glycine/cf [Cerebrospinal Fluid], Hamosh A, Health Surveys, Hoover-Fong JE, Humans, Hydrocephalus/ep [Epidemiology], Hydrocephalus/et [Etiology], Hyperglycinemia, IM, Infant, Journal Article, Juvenile/dt [Drug Therapy], Juvenile/ep [Epidemiology], Juvenile/et [Etiology], Male, Myoclonic Epilepsy, Neurology, Newborn, Nonketotic/co [Complications], Nonketotic/ep [Epidemiology], Nonketotic/me [Metabolism], Nonketotic/mo [Mortality], Nystagmus, Pathologic/ep [Epidemiology], Pathologic/et [Etiology], Pregnancy, Pregnancy Complications/ep [Epidemiology], Preschool, Psychomotor Disorders/ep [Epidemiology], Psychomotor Disorders/et [Etiology], Questionnaires, Registries, Respiration, Retrospective Studies, Seizures/dt [Drug Therapy], Seizures/ep [Epidemiology], Seizures/et [Etiology], Sex Factors, Shah S, Survival Analysis, Toone J, Van Hove JL

Liver transplantation for Wilson's disease: long-term results and quality-of-life assessment

BACKGROUND: Wilson's disease associated with severe liver disease is effectively cured by orthotopic liver transplantation (OLT). However, there are also anecdotal reports of improved or resolved neurologic symptoms after OLT in patients with stable…

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

Siblings' needs and issues when a brother or sister dies of cancer.

To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had…

Sibling involvement at the end of life. [Review] [34 refs]

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide…

Tags: 2005, Backlog, Giovanola J, IM, Journal Article, Journal Of Pediatric Oncology Nursing, N

Cancer-associated cachexia and underlying biological mechanisms

Cancer metastases (spread to distant organs from the primary tumor site) signify systemic, progressive, and essentially incurable malignant disease. Anorexia and wasting develop continuously throughout the course of incurable cancer. Overall, in…

Tags: 2006, Annual Review Of Nutrition, Appetite, Backlog, Baracos VE, Cachexia/me [Metabolism], Cachexia/th [Therapy], Energy Intake/ph [Physiology], Energy Metabolism/ph [Physiology], Humans, IM, Journal Article, Neoplasms/co [complications], Neoplasms/me [Metabolism], Nutritional Support, Palliative Care, Weight Loss

Parenteral nutrition in advanced cancer: indications and clinical practice guidelines

Cachexia is a disturbing and disfiguring aspect of many advanced cancers. Parenteral nutrition (PN) is a controversial and expensive treatment for cancer cachexia. Guidelines for the use of PN for these patients have been suggested. These two case…

Quality of life related to type 1 Gaucher disease: Spanish experience

The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a…

Tags: 2005, Backlog, Exercise, Gaucher Disease/pp [Physiopathology], Giraldo P, Giralt M, Humans, IM, Journal Article, Perez-Calvo JI, Prospective Studies, Quality Of Life, Quality of Life Research, Questionnaires, Rubio-Felix D, Solano V, Spain, Spanish Group on Gaucher disease

The clinical and demographic characteristics of nonneuronopathic Gaucher disease in 887 children at diagnosis

OBJECTIVE: To describe the clinical and demographic characteristics of nonneuronopathic Gaucher disease (GD) in children at the time of diagnosis. DESIGN: Longitudinal observational database of the International Collaborative Gaucher Group Gaucher…

Siblings and child friends in death-related literature for children.

This article explores ways in which siblings and child friends are represented as being involved in death and loss experiences. These representations are taken from 51 selected examples of death-related literature designed to be read by or with…

Tags: 2009, Backlog, Corr CA, IM, Journal Article, Journal Of Death, sibling bereavement

Candles in the snow: ritual and memory for siblings of infants who died in the intensive care nursery.

CONCLUSIONS: Although death in the NICU often has a brief course, consequences for survivor siblings can be life-long. Siblings born both before and after the death of an infant may be at risk and in need of psychological support. Family rituals and…

Tags: 2009, AIM, Backlog, Edwards WH, Fanos JH, IM, Journal Article, Journal of Pediatrics, Little GA, sibling bereavement

Cost-effectiveness analysis of ziprasidone versus haloperidol in sequential intramuscular/oral treatment of exacerbation of schizophrenia: economic subanalysis of the ZIMO trial.

OBJECTIVE: This study aimed to assess the cost effectiveness of ziprasidone versus haloperidol in sequential intramuscular (IM)/oral treatment of patients with exacerbation of schizophrenia in Spain. METHODS: A cost-effectiveness analysis from the…

Long-term outcome and clinical spectrum of 73 pediatric patients with mitochondrial diseases

OBJECTIVES: We sought to determine the clinical spectrum, survival, and long-term functional outcome of a cohort of pediatric patients with mitochondrial diseases and to identify prognostic factors. METHODS: Medical charts were reviewed for 73…

Tags: 2007, AIM, Backlog, Cause Of Death, Chevalier I, Child, Cohort Studies, Debray FG, Decarie JC, DNA, DNA Fragmentation, Female, Follow-up Studies, HEREDITARY, Humans, IM, Infant, Journal Article, Lambert M, Leber/di [Diagnosis], Leber/ge [Genetics], Leber/mo [Mortality], Longitudinal Studies, Male, MELAS Syndrome/di [Diagnosis], MELAS Syndrome/mo [Mortality], MELAS Syndrome/th [Therapy], Mitchell GA, Mitochondrial Diseases/di [Diagnosis], Mitochondrial Diseases/ge [Genetics], Mitochondrial Diseases/mo [Mortality], Mitochondrial Encephalomyopathies/di [Diagnosis], Mitochondrial Encephalomyopathies/mo [Mortality], Mitochondrial Encephalomyopathies/th [therapy], Mitochondrial Myopathies/di [Diagnosis], Mitochondrial Myopathies/ge [Genetics], Mitochondrial Myopathies/mo [Mortality], Mitochondrial/ge [Genetics], Newborn, Optic Atrophy, Pediatrics, Preschool, Probability, Proportional Hazards Models, Q3 Scoping Review Results, Retrospective Studies, Robinson BH, Robitaille Y, Severity Of Illness Index, Shoubridge EA, Survival Analysis, Time Factors

Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec

OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents,…

No evidence for binding of clozapine, olanzapine and/or haloperidol to selected receptors involved in body weight regulation.

The underlying mechanisms of antipsychotic (AP)-induced weight gain are unknown, but both central and peripheral AP target receptors could potentially be involved. This study used radioligand binding assays to compare the binding affinities of…

A D2 antagonist enhances the rewarding and priming effects of a gambling episode in pathological gamblers.

Previous research indicated shared neurochemical substrates for gambling and psychostimulant reward. This suggests that dopamine substrates may directly govern the reinforcement process in pathological gambling. To investigate this issue, the present…

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