Browse Items · Pediatric Palliative Care Library

For purposes of research, palliative care patients should not be considered a vulnerable population

2004

Tags: 2004, Backlog, Berry SR, Biomedical and Behavioral Research, Biomedical Research/ethics, Clinical Oncology, Death and Euthanasia, Ethics, Guidelines As Topic, Humans, Journal Article, Medical, Multi-site Ethics, Neoplasms/therapy, Palliative Care/ethics/trends, Patient Advocacy, Prejudice, Terminology as Topic, Vulnerable Populations

Forgoing life support across borders: who decides and why?

Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine…

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about…

Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians

We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their…

Functional ability, social support, and depression in rheumatoid arthritis

OBJECTIVE: First, to investigate the patterns of functional ability, depressive feelings, and social support in early stage rheumatoid arthritis (RA) patients. Second, to demonstrate the stress buffering effect of social support. Social support is…

Gastrostomy feeding versus oral feeding alone for children with cerebral palsy

BACKGROUND: Children with cerebral palsy (CP) can be significantly disabled in terms of their ability to suck, chew and swallow. This can lead to significant impairment in feeding ability and, eventually, to under-nutrition. It can also result in…

Tags: 2004, Adolescent, Backlog, Cerebral Palsy/complications, Child, Cochrane Database of Systematic Reviews, Eating, Gastrostomy/adverse effects, Humans, Infant, Journal Article, Nutrition Disorders/etiology/prevention & control, Preschool, Sleigh G, Sullivan P, Thomas AG

Goal setting as a measure of outcome in palliative care

Setting goals and assessing outcomes are essential elements in palliative care. This paper describes a multiprofessional project, conducted under the auspices of clinical audit, which attempted to evaluate important outcomes of care. Over a six-month…

Good practices that address continuity during transition from child to adult care: synthesis of the evidence

BACKGROUND: Effective transition to adult services is required by an increasing number of children with ongoing needs. AIM: To identify practices that promote continuity at transition between child and adult services. METHODS: Systematic examination…

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…

Health services use and health care expenditures for children with disabilities

OBJECTIVE: To examine health care utilization and expenditure patterns for children with disabilities. METHODS: Secondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally…

Hormones and the stressed brain

The stress system orchestrates brain and body responses to the environment. Cortisol (in humans) or corticosterone (in rodents) are important mediators of the stress system. Their action-in concert-is crucial for individual differences in coping with…

Tags: 2004, Animals, Annals Of The New York Academy Of Sciences, Backlog, Biomarkers of Pain, Brain/pathology/physiopathology, De Kloet ER, Glucocorticoid/physiology, Hormones/physiology, Journal Article, Mineralocorticoid/physiology, Receptors, Stress/physiopathology

Hospital charges for a community inpatient palliative care program

Defining financial parameters of palliative care (PC) is important for providing sustainable programming. In our study, we evaluated hospital length of stay (LOS) and charges for the first 164 inpatient PC consultations performed by the Advanced…

Hospital staff and family perspectives regarding quality of pediatric palliative care.

BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and…

How well do parents know their children? Implications for proxy reporting of child health-related quality of life

2004

Tags: 2004, 26 and 11% of the parents gave > or = 3 and 6 > or = DK responses to 33 items comprising the PPQ. DK responses were associated with child's age and clinical co ndition, Adolescent Chi-Square Distribution ChildChild Welfare Female Humans MaleOral Health Parents/psychologyProxyQuality of Life Questionnaires Research Support, Backlog, given that parental and child reports are measuring different realities, Guyatt G, imputation of the value zero and adjustment of scores to account for items with DK responses. RESULTS: Respectively, information provided by parents is useful even if it is incomplete., item mean imputation, Jokovic A, Journal Article, Locker D, Non-U.S. Gov't%X OBJECTIVES: This study examined parental knowledge of their children's oral-health-related quality of life (OHRQoL) (Objective 1), PedPal Lit, Quality of Life Research

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was…

Tags: 2004, Adult, Attitude To Health, Backlog, Chronic Disease, Female, Feminism, Humans, Isaksen LW, Journal Article, Malterud K, Middle Aged, Narration, Pain/psychology, Social science & medicine, Werner A

Improving functional skills and physical fitness in children with Rett syndrome

BACKGROUND: To investigate the feasibility of a physical exercise programme with treadmill for persons with Rett syndrome (RS) in order to promote fitness and health. METHODS: A daily training programme on a treadmill was designed for four females…

Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts

OBJECTIVES: To identify barriers to, models of care for, and initiatives to improve health care of adult survivors of childhood cancer. METHODS: Seventeen health care policy experts were asked to respond to the three objectives through a…

Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care

Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is…

Increased numbers of opioid expressing inflammatory cells do not affect intra-articular morphine analgesia

BACKGROUND: Both locally expressed beta-endorphin (END) and low doses of morphine relieve pain within inflamed knee joints. Here we examined whether enhanced inflammation and END expression within the synovial tissue of patients undergoing…

Individual differences, mood, and coping with chronic pain in Rheumatoid Arthritis: a daily process analysis.

This study examines individual differences in coping and associated health outcomes as they unfold across time. Twice daily for one week, 71 individuals with Rheumatoid Arthritis reported their pain, coping efforts, and negative mood via structured…

Tags: 2004, Adaptation, Arthritis, Backlog, Chronic Pain, Coping, Coping Behavior, Coping Skills, DeLongis A, Journal Article, Mood, Newth S, Pain, Psychological, Psychology & Health, Rheumatoid, Rheumatoid Arthritis

Infantile neuroaxonal dystrophy.

Infantile neuroaxonal dystrophy (INAD) is a rare autosomal recessive neurodegenerative disorder with onset in the first or second year of life. Frequency is unknown. It is characterized by a progressive motor and mental deterioration, bilateral…

Tags: 2004, Backlog, Disease Specific, Hallervorden-Spatz syndrome, Infantile neuroaxonal dystrophy, Journal Article, Nardocci N, Neurodegenerescence, Seitelberger Disease, Spheroid Bodies

Infantile systemic hyalinosis or juvenile hyaline fibromatosis?

Infantile systemic hyalinosis and juvenile hyaline fibromatosis are presumably autosomal recessive inherited diseases of unknown origin in which accumulation of an amorphous, hyaline material occurs in the skin and other organs. Both disorders may…

Tags: 2004, Backlog, Child, Diagnosis, Differential, Fibroma/pathology, Humans, Hyalin, Journal Article, Male, Murray G, Pediatric Dermatology, Preschool, Sazunic I, Skin Neoplasms/pathology, Urbina F

Initial experiences with medicinal extracts of cannabis for chronic pain: results from 34 'N of 1' studies

Three Cannabis Based Medicinal Extracts (CBMEs) for sublingual use became available in 2000. A total of 34 'N of 1' studies were undertaken using this novel therapy for patients with chronic, mainly neuropathic, pain and associated symptoms to…

Integrating palliative care in pediatrics

An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all…

Tags: 2004, Adolescent, Child, Current Pain & Headache Reports, Delivery of Health Care, February 2018 List, Humans, Infant, Integrated/og [Organization & Administration], Only Child, Palliative Care, Pediatrics/og [Organization & Administration], Walton O, Weinstein SM

Inter-rater reliability in assigning ICF codes to children with disabilities

2004

Tags: 17/40 codes using the PEDI, 2004, 9 months to 17.75 years old, Activities of Daily Living Adolescent Child Child, alternative assessment strategies may be necessary to improve assigning ICF codes to children with disabilities., and 17/40 codes using the SFA. The mean kappa statistic reached > /= 0.70 for the Self care domain, and Health (ICF) to assign to children with disabilities based on the results of standard paediatric functional assessment measures. METHOD: Children (N = 60), Backlog, diagnosis/therapy, Disability, Disability And Rehabilitation, Disability Evaluation, Disabled Children Female Humans Infant Interpersonal Relations Male Observer Variation Reproducibility of Results Self Care Sensitivity and Specificity Sickness Impact Profile, Feldman H, for 23/40 codes using the Vineland, Journal Article, Kronk R, Ogonowski J, PedPal Lit, Preschool Cohort Studies Comparative Study Developmental Disabilities/, Rice C, the criterion for good agreement in this study, the Pediatric Evaluation of Disability Inventory (PEDI) (n = 20), with a range of disabilities were assessed using either the Vineland Adaptive Behavior Scales (n = 20)

Interdisciplinary management of adolescent chronic pain: developing the role of physiotherapy

Children and adolescents report chronic pain, and a significant minority develop pain associated distress and disability. Unidisciplinary and uni-modal treatments are rarely successful, but recent developments in interdisciplinary programmes of…

Tags: 2004, Adolescent, Backlog, Eccleston C, Eccleston Z, Journal Article, Pain, Physical therapy techniques, Physiotherapy

Internet versus mailed questionnaires: A randomized comparison.

BACKGROUND: The use of Internet-based questionnaires for collection of data to evaluate patient education and other interventions has increased in recent years. Many self-report instruments have been validated using paper-and-pencil versions, but we…

Intravenous ketamine infusion as an adjuvant to morphine in a 2-year-old with severe cancer pain from metastatic neuroblastoma

A 2.8-year-old female patient (11.6 kg) was admitted to the hospital for uncontrolled pain and swelling in the left leg relating to a metastatic neuroblastoma. Initially, her pain was managed with oral morphine 2 mg (approx. 0.2 mg/kg) every 4 hours.…

Irreversible intestinal failure

Intestinal failure (IF) can be defined as the reduction of functional gut mass below the minimal amount necessary for digestion and absorption adequate to satisfy the nutrient and fluid requirements for maintenance in adults or growth in children. In…

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