Browse Items · Pediatric Palliative Care Library

The Behavior Problems Inventory-Short Form for individuals with intellectual disabilities: part I: development and provisional clinical reference data

BACKGROUND: The Behavior Problems Inventory-01 (BPI-01) is an informant-based behaviour rating instrument that was designed to assess maladaptive behaviours in individuals with intellectual disabilities (ID). Its items fall into one of three…

Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.

CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a…

Tags: 2014, Aged, Backlog, Chen JS, Chou WC, DNAR, Family/px [psychology], Female, Hsieh C-H, Hsu H-C, Huang K-G, Humans, Hung Y-S, Jaing T-H, Journal Article, Journal of Pain and Symptom Management, Kao Chen-Yi, Liau Chi-Ting, Lin Yung-Chang, Liu Chien-Ying, Liu Keng-Hao, Liver Neoplasms/di [Diagnosis], Liver Neoplasms/pp [Physiopathology], Liver Neoplasms/px [Psychology], Liver Neoplasms/th [Therapy], Male, Middle Aged, Multivariate Analysis, Neoplasms/di [Diagnosis], Neoplasms/pp [Physiopathology], Neoplasms/px [psychology], Neoplasms/th [therapy], Palliative Care, Prognosis, Referral And Consultation, Resuscitation Orders, Resuscitation Orders/px [Psychology], Retrospective Studies, Sex Factors, Shen W-C, Su Po-Jung, Taiwan, Tang Shu-Chuan, Terminally Ill, Terminally Ill/px [Psychology], Time Factors, Wang Hung-Ming, Wu Jin-Hou

Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…

Clinical and laboratory factors that predict death in very low birth weight infants presenting with late-onset sepsis

BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…

Linking MECP2 and pain sensitivity: the example of Rett syndrome

Recent animal studies suggest links between MeCP2 function and sensitivity to pain. This study investigated the nature and prevalence of atypical pain responses in Rett syndrome and their relationships with specific MECP2 mutations. Families enrolled…

Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.

OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of…

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

Hope and prognostic disclosure

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

Factors associated with location of death of children with cancer in palliative care

OBJECTIVE: The aim of this study was to identify factors associated with location of death of patients receiving palliative care in a pediatric oncology unit. METHODS: A palliative care program was developed in the pediatric department in order to…

The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis

OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA…

The use of conscious sedation for pain control during forearm fracture reduction in children: does race matter?

Recent reports in the medical literature indicate that certain racial disparities have been identified in healthcare. The authors sought to identify the potential relationship between the use of pain medications in African-American and Caucasian…

Risk factors for long intensive care unit stay after cardiopulmonary bypass in children

OBJECTIVES: To determine whether children who experience longer intensive care unit (ICU) stays after open heart surgery may be identified at admission by clinical criteria. To identify factors associated with longer ICU stays that are potential…

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…

Children and young people who die from cancer: epidemiology and place of death in England (1995-9)

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…

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…

Whose utilities for decision analysis?

The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of…

The effect of continuity of care on emergency department use

OBJECTIVE: To examine whether continuity of care with an individual health care provider is associated with the number of hospital emergency department (ED) visits in a statewide Medicaid population. DESIGN: A cross-sectional study based on a 100%…

Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health

CONTEXT: The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. OBJECTIVE: To identify risk and protective factors at the family, school, and individual levels…

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…

Stressors and well-being among caregivers to older adults with dementia: the in-home versus nursing home experience

We examined differences in stressors and well-being for caregivers who care for a relative with dementia at home and those who had placed their relative in a nursing home. The groups did not differ in depression or somatic complaints, but nursing…

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses

OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…

Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity

OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the…

An Unexpected Success Story: Transition to Adulthood in Youth With Chronic Physical Health Conditions.

We used data from the National Longitudinal Survey of Youth (NLSY; 1987) to examine the relationship between having a chronic physical health condition during youth (ages 14 to 21), and the subsequent transition to adulthood among a nationally…

Tags: 1993, Adolescent Transitions, ADULTHOOD, Backlog, Gortmaker SL, Homer CJ, Journal Article, Journal Of Research On Adolescence (lawrence Erlbaum), Multivariate Analysis, Perrin JM, Sobol Arthur M, TEENAGERS -- Health & hygiene, UNEMPLOYMENT, Weitzman M

Life expectancy of children in vegetative and minimally conscious states

We determined estimates of survival in children, 3-15 years of age, in the vegetative state (VS) (n = 564), immobile minimally conscious state (MCS) (n = 705), and mobile MCS (n = 3,806). Data were extracted from the annual Client Development…

A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care

BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the…

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