Browse Items · Pediatric Palliative Care Library

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

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

The role of nurses in physician-assisted deaths in Belgium

BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request…

Paediatric pain profile

The Paediatric Pain Profile is a tool that has been developed specially to help in assessing and monitoring pain in children with severe neurological impairments, especially those with impairments which lead them to be unable to communicate pain…

Tags: 2003, Backlog, Child, Health Care, Institute of Child Health, Journal Article, Pain, Pediatrics, Quality Assurance, Questionnaires, Royal College of Nursing Institute

Availability and use of palliative care and end-of-life services for pediatric oncology patients

PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We…

Pediatric palliative care: feedback from the pediatric intensivist community

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and…

Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception

CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to…

Hospital Practices for Parents Following Perinatal Loss

The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Parent perceptions of the quality of information received about a child's cancer

BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…

A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment

Impact of caring for a child with cancer on parents' health-related quality of life

PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND…

Psychiatric morbidity in children with medically unexplained chronic pain: diagnosis from the pediatrician's perspective

CONTEXT: There is very little general evidence to support the clinical management, particularly diagnosis, of medically unexplained chronic pain (UCP) in children. OBJECTIVE: We sought to assess in children with UCP if clinical characteristics held…

A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

A prospective comparative study of 2540 infants and children with newly diagnosed idiopathic thrombocytopenic purpura (ITP) from the Intercontinental Childhood ITP Study Group

OBJECTIVE: To analyze prospectively the impact of age at diagnosis in childhood idiopathic thrombocytopenic purpura (ITP). STUDY DESIGN: International registry from June 1997 to May 2001, with analysis of data from baseline and 6-month-follow-up…

Support as a crucial predictor of good compliance of adolescents with a chronic disease

The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and…

Predictors of good adherence of adolescents with diabetes (insulin-dependent diabetes mellitus)

OBJECTIVES: The purpose of this study was to identify the factors that predict good adherence to health regimens by adolescents with diabetes (insulin-dependent diabetes mellitus). METHODS: Altogether, 300 individuals aged 13-17 years were randomly…

Mothers' experience of social support following the death of a child

1. This study aimed at analysing the grief and coping of mothers whose child had died under the age of 7 years. The paper describes the social support received as experienced by mothers. 2. Data were collected using a survey (n=91) and interviews…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Predictors of husbands' and wives' grief reactions following infant death: the role of marital intimacy

This follow-up study examined how bereaved couples' grief reactions change over time and how the quality of the marriage can predict these reactions for men and women. A group of 31 bereaved couples who 2 to 4 years earlier had lost an infant (…

Tags: 1996, Amsel R, Backlog, Death studies, Fetal Death, Follow-up Studies, Gottlieb LN, Grief, Humans, Infant, Infant Mortality, Journal Article, Lang A, Marriage, Newborn, Parent caregivers, Questionnaires, Spouses/psychology

A survey of IRB process in 68 U.S. hospitals

PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and…

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention

Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental,…

Tags: 2019, Action Research, Adaptation, Adult, American Journal of Hospice & Palliative Medicine, August 2019 List, Beaupin L K, Breier J M, Byrwa D J, Caregiver, Caregiver Support, Caregivers -- Psychosocial Factors, Coefficient Alpha, Criterion-Related Validity, Data Analysis Software, Depner R M, Descriptive Statistics, Discriminant Validity, Female, Grant P C, Health Facilities, Human, Internal Consistency, Levy K, Life Purpose, Married Women, meaning-centered psychotherapy, Middle Age, Mothers, Multimethod Studies, Narratives, New York, Pailler M E, Paired T-Tests, Palliative Care -- Psychosocial Factors, Pediatric, Pediatric Care, pediatric caregiver, Pediatric Palliative Care, Personal Satisfaction, Photography, photovoice, Pilot Studies, Pretest-Posttest Design, Program Development, Program Evaluation, Program Implementation, Psychological, Psychotherapy -- Methods, Questionnaires, Reliability, Research Subject Recruitment, Semi-Structured Interview, social media, surveys, Tenzek K E, Whites

Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.

Sleep disturbances are common in many progressive metabolic encephalopathies. The possible presence of disturbed sleep-wake behaviour in the lysosomal storage disorder aspartylglucosaminuria, has not been previously studied, however. The sleep-wake…

Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.

Sleep disturbances are common in many progressive metabolic encephalopathies. The possible presence of disturbed sleep-wake behaviour in the lysosomal storage disorder aspartylglucosaminuria, has not been previously studied, however. The sleep-wake…

Treatment of pain in pediatric oncology: a Swedish nationwide survey

Pain treatment is a crucial aspect in the care of children with cancer and there are many studies demonstrating inefficient pain treatment. In this study, questionnaires dealing with pain treatment of children with malignant diseases were sent to all…

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…

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

Parents' views of cancer-directed therapy for children with no realistic chance for cure

PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of…

The impact of consent on observational research: a comparison of outcomes from consenters and non consenters to an observational study

BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an…

Tags: 2008, Backlog, Bmc Medical Research Methodology, Breast Neoplasms/pathology/therapy, Female, Humans, Informed Consent, Journal Article, Macleod U, Medical Records, Neoplasm Staging, Observation/methods, Questionnaires, Socioeconomic Factors, Watt GC

Reasons for dissatisfaction: A survey of relatives of intensive care patients who died

OBJECTIVE: To describe the reasons for eventual dissatisfaction among the families of patients who died in the intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the information received…

Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…

Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff

BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by…

Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction

OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that…

Pain in the pediatric patient: practical aspects of assessment

A child's pain is plastic and complex. In order to more effectively alleviate suffering, emphasis must shift from an exclusive focus on the source of tissue damage to a more comprehensive focus that includes factors that modulate pain. Evaluating a…

Tags: 1995, Adolescent, Backlog, Child, Child Behavior, Female, Humans, Infant, Journal Article, Male, McGrath PA, Pain Measurement/methods, Pain/etiology/psychology/therapy, Pediatric Annals, Preschool, Questionnaires

Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…

Nurses' attitudes to pain management during routine venepuncture in young children

Venepuncture is one of the most commonly performed clinical procedures carried out on young children. Evidence indicates inconsistency in the use of pain management strategies during these procedures. A survey method was used to explore nurses' views…

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

Browse Items (209 total)