Browse Items · Pediatric Palliative Care Library

Rising national prevalence of life-limiting conditions in children in England.

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the…

Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families

The forgotten griever: a nationwide follow-up study of mortality subsequent to the death of a sibling

Previous findings have suggested that the loss of a family member is associated with mortality among bereaved family members. The least-studied familial relationship in the bereavement literature is that of siblings, although loss of a sibling may…

Pediatric palliative care patients: a prospective multicenter cohort study

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients…

Annual summary of vital statistics: 2008

The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years.…

Transition to adult services for children and young people with palliative care needs: a systematic review

OBJECTIVE: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN: Systematic review. SETTING: Child and adult services and interface between healthcare providers. PATIENTS:…

Care goals and decisions for children referred to a pediatric palliative care program

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates

BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are…

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles…

Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

Palliative care in adolescents and young adults with cancer

Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a…

Association between opioid prescribing patterns and opioid overdose-related deaths

CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of…

Advanced care planning in children with life-limiting conditions – the Wishes Document

Cystic fibrosis and transition to adult medical care

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older…

Tags: 2010, Adolescent, Adolescent Transitions, Age Factors, Backlog, Britto MT, Cystic Fibrosis/therapy, Humans, Journal Article, Pediatrics, Referral And Consultation, Sawicki GS, Schwartz L, Tuchman LK, Young Adult

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…

Direct measurement of intracranial pressure at high altitude and correlation of ventricular size with acute mountain sickness: Brian Cummins' results from the 1985 Kishtwar expedition

OBJECTIVE AND IMPORTANCE: The "tight-fit" hypothesis and subsequent current understanding of acute mountain sickness (AMS) is that individuals with less compliant cerebrospinal fluid systems (smaller ventricles and cerebrospinal fluid spaces) have a…

Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives.

PURPOSE: Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to…

Role of palliative care in adolescent and young adult oncology

Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary…

Tags: 2010, Adolescent, Backlog, Behavior, Humans, Journal Article, Journal Of Clinical Oncology, Neoplasms/psychology/therapy, Palliative Care, Patient Care Team, Pery S, Wein S, Young Adult, Zer A

Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC)

BACKGROUND: Chronic rheumatic diseases are painful conditions which are not entirely controllable and can place high emotional demands on individuals. Increasing evidence has shown that emotion regulation in terms of actively processing and…

Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

Transition of care from child to adult mental health services: the great divide

PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the…

Adherence to medical recommendations and transition to adult services in pediatric transplant recipients

PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ…

Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care planning implications.

OBJECTIVES: Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and…

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…

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

A short form of the Posttraumatic Growth Inventory

A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form…

Self-portraits of families with young adult cancer survivors: using photovoice

Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and…

A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level

OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns'…

Period prevalence of epilepsy in children in BC: a population-based study

BACKGROUND: Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the…

Meditation experience predicts less negative appraisal of pain: electrophysiological evidence for the involvement of anticipatory neural responses

The aim of mindfulness meditation is to develop present-focused, non-judgmental, attention. Therefore, experience in meditation should be associated with less anticipation and negative appraisal of pain. In this study we compared a group of…

Gender differences in violence exposure among university students attending campus health clinics in the United States and Canada

PURPOSE: To explore gender differences in prevalence, types, perpetrators, and correlates of recent violence experiences among university students at campus clinics at five universities in the Midwest and Pacific Northwest U.S. and Canada. METHODS:…

Changing mortality in congenital heart disease

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue

OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis.…

Transition from pediatric to adult care: experience of a cystic fibrosis care center]

BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the…

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is…

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Palliative care of children with brain tumors: a parental perspective

OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents…

Mental Health Services for Parents Who Lost a Child to Cancer: If We Build Them, Will They Come?

PURPOSE: To examine bereavement mental health service use, barriers to use, and factors associated with use in parents bereaved by cancer. PATIENTS AND METHODS: A multicenter, cross-sectional study of 120 parents bereaved by cancer between 6 months…

Development and validation of the Communicating with Family about Brain Death Scale

This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…

Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting…

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