Browse Items · Pediatric Palliative Care Library

Parental perceived value of a diagnosis for intellectual disability (ID): a qualitative comparison of families with and without a diagnosis for their child's ID

Although new technologies such as array genomic hybridization to diagnosis the cause of intellectual disabilities (ID) are exciting to clinicians, the value of an etiological diagnosis to the families of affected children is largely unknown. Parents…

Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools

BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to…

Pediatric Functional Independence Measure: Clinical trials with disabled and nondisabled children.

Content validity of a pediatric functional independence measure.

1990

Tags: 1990, Activities of Daily Living, Applied Nursing Research, Backlog, Child, Granger CV, Humans, Infant, Journal Article, Longitudinal Studies, McCabe MA, Nursing Assessment/standards, Preschool, Psychometrics, Reproducibility of Results, Self Care

The Delphi technique: a worthwhile research approach for nursing?

Since its introduction as a research approach in the late 1940s the Delphi technique has had over 1000 published research utilizations. Most of these have been in the field of social policy. However, a review of contemporary nursing literature…

Tags: 1994, Backlog, Choice Behavior, Decision Making, Delphi Technique, Humans, Journal Article, Journal Of Advanced Nursing, Judgment, McKenna HP, Nursing Research/education/methods/standards, Reproducibility of Results, Research Personnel/psychology

Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…

Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.

OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The…

Peripheral blood mononuclear cell beta-endorphin concentration is decreased in chronic fatigue syndrome and fibromyalgia but not in depression: preliminary report

OBJECTIVE: The aim of this study was to examine the possible role of the immune system in the pathophysiology of chronic fatigue syndrome and fibromyalgia syndrome and in the differential diagnosis of depression by investigating changes in peripheral…

Development of an instrument to measure stress in Korean nurses performing end-of-life care for children

PURPOSE: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale. BACKGROUND: Nurses caring for children experience various stressors that are…

Tags: 2020, August 2020 List, Child, Journal of Pediatric Nursing, Ju H O, Park S Y, Physiological stress, Reproducibility of Results, Terminal Care

Assessing preferences about the DNR order: does it depend on how you ask?

Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a…

A scale to monitor progression and treatment of mitochondrial disease in children.

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

Statistical aspects of measurement in palliative care

2002

Tags: 2002, Backlog, Bias (Epidemiology), Epidemiologic Measurements, Humans, Journal Article, Palliative Care/statistics & Numerical Data, Palliative Medicine, Pickering RM, Reproducibility of Results, Sensitivity and Specificity

Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators

Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient…

Tags: 2022, Beernaert K, Cohen J, Consensus, Deliens L, Palliative Medicine, Piette V, Quality Assurance, Reproducibility of Results, September 2022 List, Smets T, Terminal Care, Van Berlaer G

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…

The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress

The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the…

Beta-Endorphin Response to an Acute Pain Stimulus

The timing of the measurement of biological samples (e.g. biomarkers) is not always standardized. Biomarkers are the focus of many recent studies and treatments. The purpose of this study was to determine the timing of the release of beta-endorphin…

Classification and definition of disorders causing hypertonia in childhood

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

Dealing with missing data in a multi-question depression scale: a comparison of imputation methods

BACKGROUND: Missing data present a challenge to many research projects. The problem is often pronounced in studies utilizing self-report scales, and literature addressing different strategies for dealing with missing data in such circumstances is…

[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]

INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…

Tags: 2023, Acta Médica Portuguesa, Adolescent, Child, Chronic Disease, Humans, July List 2023, Machado MdC, Needs Assessment, Portugal, Psychometrics, Reproducibility of Results, Simoes MJP, Surveys And Questionnaires, Tavares F, Translations, Young Adult

Contrasting emotional approach coping with passive coping for chronic myofascial pain

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

Active and passive coping strategies in chronic pain patients

This study assessed the validity of active and passive coping dimensions in chronic pain patients (n = 76) using the Coping Strategies Questionnaire and the Vanderbilt Pain Management Inventory. The validity of active and passive coping dimensions…

Pain assessment in nonverbal children with severe cognitive impairments: the Individualized Numeric Rating Scale (INRS)

Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings…

Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.

OBJECTIVE: This study examined the equivalence reliability of two administration methods for the Functional Independence Measure for Children (WeeFIM). The two methods were direct observation of child performance and parental interview. METHOD:…

Measuring end-of-life care outcomes prospectively

This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to…

Tags: 2005, Backlog, Data Collection/methods, Health Services Research/methods, Humans, Journal Article, Journal of Palliative Medicine, Outcome and Process Assessment (Health Care)/methods, Palliative Care/psychology/standards, Prospective Studies, Psychometrics/instrumentation/methods, Quality Of Life, Reproducibility of Results, Steinhauser KE, Terminal Care/psychology/standards, United States

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

Improvement in pediatric critical care outcomes

Differences in pediatric ICU mortality risk over time

OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND…

Effect of hand splints on stereotypic hand behavior of girls with Rett syndrome: a replication study

The purposes of this study were to replicate a recent report of the positive effects of hand splinting on the stereotypic hand movement of children with Rett syndrome and to evaluate the generality of these results to a different setting. Two…

Tags: 1989, Child Preschool, Female, Hand, hand splints, hand wringing, Humans, Miedaner J, physical intervention, Physical Therapy, Reproducibility of Results, Rett syndrome, Rett Syndrome/rehabilitation, splints, Stereotyped Behavior, tone and motor problems, Tuten H

Choices and control: parental experiences in pediatric terminal home care

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

The feasibility and validity of forced spirometry in ataxia telangiectasia

OBJECTIVES: To explore the feasibility and validity of forced spirometry in patients with ataxia telangiectasia (A-T). STUDY DESIGN: Twenty-eight patients (aged 3.7-19.3 years) performed spirometry on 47 occasions. Parameters studied were technical…

Global and specific behavioral measures of pain in children with cerebral palsy.

OBJECTIVES: The aim of this research was to validate global and behavioral observation methods for measuring pain in children with cerebral palsy (CP)., MATERIALS AND METHODS: Nineteen children diagnosed with CP (2-21 years of age) and their primary…

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