Browse Items · Pediatric Palliative Care Library

Resource utilization and outcome in gravely ill intensive care unit patients with predicted in-hospital mortality rates of 95% or higher by APACHE III scores: the relationship with physician and family expectations

OBJECTIVE: To assess resource utilization and outcome in gravely ill patients admitted to an intensive care unit (ICU) and the potential association with health care workers' and family members' expectations. PATIENTS AND METHODS: We retrospectively…

Developing an interdisciplinary palliative care plan for the patient with muscular dystrophy

The care of children with MD presents many complex issues. An interdisciplinary team, focused on patient and family outcome, that incorporates palliative care initiatives can best outline and meet the goals of family-centered care. The early…

Tags: 2005, Backlog, Journal Article, Pediatric Annals, PedPal Lit, Weidner NJ

The Holocaust as a context for telling life stories

Using a narrative approach, this study explores the role of the Holocaust in the life stories of Survivors, contrasted with two comparison groups (one Jewish and one non-Jewish) whose direct experiences did not include surviving the Holocaust. Using…

Narratives And Story Telling In Coping With Grief And Bereavement

She waged the toughest battle of her life, but died of cancer in the middle of her thirteenth year. How does a mother cope with so tragic a loss? I told and retold the story. I talked about how we faced the chemo, the pain, and the fear together,…

Tags: 2005, Backlog, Bereavement, Bosticco C, Coping, Grief, Journal Article, Loss, Narratives, Omega, Stories, Story Telling, Thompson TL

Defining the new abnormal: Scientific and social construction of complicated grief

2005

Tags: 2005, Backlog, Grief, Journal Article, Neimeyer RA, Omega, social construction

Strong opioids in pediatric palliative medicine

2005

Tags: 2005, Analgesics, Backlog, Devins M, early research in children does suggest some significant differences in opioid pharmacokinetics, Hain RD, illustrated by the WHO guidelines, is essential for the adequate management of pain complicating the palliative phase in children with life-limiting conditions., Journal Article, Miser A, much of what has been published regarding the management of pain in palliative medicine in adults can be extrapolated. On saying that, Opioid/administration & dosage/adverse effects/therapeutic use Child Child, Paediatr Drugs, particularly with respect to morphine clearance, PedPal Lit, Preschool Half-Life Humans InfantMorphine/adverse effects/pharmacokinetics/therapeutic use Pain/classification/drug therapy Palliative Care/methods Tissue Distribution, the use of opioids in pediatric palliative care presents some unique challenges. Confident and rational use of o pioids by pediatricians, unsuitable for use in children, Wallace WH, which seems to be faster in adults. Thus

The economic burden of home care for children with HIV and other chronic illnesses

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill…

Identifying, understanding, and working with grieving parents in the NICU, part II: strategies

Supporting parents in coping with stress and loss improves the health and development of their child. This article looks at the need for monitoring the health and well-being of parents of infants in the NICU, including practical matters for health…

Tags: 2005, Adaptation, Backlog, Dyer KA, Hospital/psychology Parent-Child Relations Parents/education/psychologyProfessional-Family Relations Referral and Consultation Self Care/methods/psychology Self-Help Groups Social Support Teaching Materials Time Factors, Journal Article, Neonatal Network, Neonatal/methods/psychology Internet Neonatal Nursing/methods Nurse's Role Nursing Staff, PedPal Lit, Psychological Aftercare/methods/psychology Attitude to Death Awareness Communication Cultural Diversity EmpathyGrief Health Promotion/methods Helping Behavior HumansIntensive Care

Parents and professionals in the NICU: communication within the context of ethical decision making--an integrative review

Communication between parents and professionals in the NICU is a necessary part of collaborative decision making in the provision of family-centered care. Decisions with ethical components, those regarding treatment plans or neonatal research…

Tags: 2005, Attitude to Health CanadaCommunication Cooperative BehaviorDecision Making/ethics Disabled Children/legislation & jurisprudence Europe Family Nursing/ethics/organization & administration/psychology Frustration Great Britain Humans Infant, Backlog, Hospital/ethics/psychology Parents/education/psychology Patient Care Planning/ethics Patient-Centered Care/ethicsProfessional-Family Relations/ethics United States Withholding Treatment/ethics/legislation & jurisprudence, Journal Article, neonatal intensive care, Neonatal Network, Neonatal/ethics/organization & administration/psychology Neonatal Nursing/ethics/organization & administration Nursing Methodology Research Nursing Staff, Newborn Informed Consent/ethics/psychology Intensive Care Units, PedPal Lit, Ward FR

Fear of death

2005

Tags: 2005, a cancer patient at Massachusetts General Hospital (MGH) founded The Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, Adolescent Adolescent Behavior/psychology AdultAttitude to Death Child Child Behavior/psychology Child, and gain insight and support from fellow staff members. For many, and their caregivers, Backlog, cancer is synonymous with death. Fearing death is a rational response. For too long, Chabner BA, clinicians recognize and address end-of-life issues, Giansiracusa D, is reviewed., Journal Article, Kenneth B. Schwartz, Lynch TJ, medicine has ignored this primeval fear. Increasingly, Oncologist, particularly in regard to challenging fear, Partridge RA, PedPal Lit, Penson RT, Preschool Empathy Fear/psychology Humans Middle Aged Neoplasms/psychology Oncologic Nursing Palliative Care/psychology Professional-Patient Relations Religion and Medicine Spirituality Terminal Care/psychology%X Shortly before his death in 1995, Shah MA, the role of the health care provider in the dying process, their families, which provides hope to the patient and support to caregivers and encourages the healing process. The center sponsors the Schwartz Center Rounds

Care coordination in the medical home: integrating health and related systems of care for children with special health care needs

2005

Tags: 2005, American Academy of Pediatrics Council on Children with Disabilities, Backlog, Journal Article, Miller 2009 BMC HSR Refs, Pediatrics

Baby doe redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: a cautionary note on normative neonatal practice

2005

Tags: 2005, Backlog, Journal Article, Pediatrics, PedPal Lit, Sayeed SA

A clinical decision rule to identify children at low risk for appendicitis

OBJECTIVE: Computed tomography (CT) has gained widespread acceptance in the evaluation of children with suspected appendicitis. Concern has been raised regarding the long-term effects of ionizing radiation. Other means of diagnosing appendicitis,…

Helping families raise children with special health care needs at home

One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in…

Tags: 2005, Adolescent, American Academy of Pediatrics Committee/Section on Children With Disabilities, Backlog, Child, Community Health Services, Disabled Children/legislation & jurisprudence/rehabilitation, Family, Health Services Needs And Demand, Healthy People Programs, Home Nursing, Humans, Infant, Johnson CP, Journal Article, Kastner TA, Pediatrics, Respite Care

Long-term follow-up of neonatal mitochondrial cytopathies: a study of 57 patients

OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…

Quality-adjusted life-years lack quality in pediatric care: a critical review of published cost-utility studies in child health

OBJECTIVES: Cost-utility analysis in which health benefits are quantified in terms of quality-adjusted life-years (QALYs) has now become the standard type of cost-effectiveness analysis. These studies are potentially influential in determining the…

Tags: 2005, Adolescent, Backlog, Brown J, Child, Coast J, Cost-Benefit Analysis/standards, Costs and Cost Analysis/standards, Decision Support Techniques, Griebsch I, Health Services Research/standards, Health Status, Humans, Infant, Journal Article, Pediatrics, Quality-Adjusted Life Years

Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic

OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…

Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death

OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending…

The health and well-being of caregivers of children with cerebral palsy.

OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…

Health care transition: youth, family, and provider perspectives

OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…

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…

New and lingering controversies in pediatric end-of-life care

OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of…

Addressing transition to adult health care for adolescents with special health care needs

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the…

Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic

2005

Tags: 1998, 2002, 2005, Academic Medical Centers Adolescent AdultCause of Death Child Child, and 19 (52%) were identified through the clinic-initiated tracking system for deaths that occurred outside the institution. Only 1 anticipated death occurred in the patient's home. Sixty-six percent of patients h(TRUNCATED), and June 31, and to compare the characteristics of deaths that were sudden, and whether an autopsy was performed. RESULTS: Thirty-six patient deaths were identified between July 1, Backlog, epidemiology United States%X BACKGROUND: The Institute of Medicine's report When Children Die emphasizes the importance of the medical home in end-of-life care, Hospital, Hospital-Based, Journal Article, Nellis ME, Newborn Male Outpatient Clinics, Pediatrics, PedPal Lit, preexisting medical conditions, Preschool Death FemaleHospital Mortality Hospitals, resident continuity clinic, Serwint JR, setting and cause of death, statistics & numerical data Primary Health Care Professional-Family Relations Sudden Infant Death, to determine the mechanisms of communication about these deaths, unexpected, Urban/statistics & numerical data Humans Infant Infant, within a clinic population of 7000 patients (average annual mortality rate: 0.13%). Seventeen patient deaths (48%) were identified through the institutional tracking system

Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis

The diagnosis of fetal alcohol spectrum disorder (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated…

Tags: 2005, Abnormalities, Adult, Alcohol Drinking/prevention & control, Alcoholism/diagnosis/prevention & control, Backlog, Canada/epidemiology, Canadian Medical Association Journal, Child, Chudley AE, Conry J, Cook JL, Diagnosis, Differential, Ethanol, Female, Fetal Alcohol Syndrome/diagnosis/epidemiology/prevention & control, Humans, Infant, Journal Article, LeBlanc N, Loock C, Mass Screening/standards, Medical History Taking/standards, Multiple/diagnosis, Nervous System Diseases/diagnosis, Newborn, Non-U.S. Gov't, Physical Examination/standards, Pregnancy, Pregnancy Complications/diagnosis/prevention & control, Prenatal Exposure Delayed Effects, Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder, Referral and Consultation/standards, Research Support, Risk Factors, Rosales T

The costs of nonbeneficial treatment in the intensive care setting

Ethics consultations have been shown to reduce the use of "nonbeneficial treatments," defined as life-sustaining treatments delivered to patients who ultimately did not survive to hospital discharge, when treatment conflicts occurred in the adult…

Social network analysis as an analytic tool for interaction patterns in primary care practices

PURPOSE: Social network analysis (SNA) provides a way of quantitatively analyzing relationships among people or other information-processing agents. Using 2 practices as illustrations, we describe how SNA can be used to characterize and compare…

Interpersonal continuity of care and care outcomes: a critical review

PURPOSE: We wanted to undertake a critical review of the medical literature regarding the relationships between interpersonal continuity of care and the outcomes and cost of health care. METHODS: A search of the MEDLINE database from 1966 through…

Tags: 2005, Annals Of Family Medicine, Backlog, Continuity of Patient Care/standards, Humans, Journal Article, Lochner J, Outcome Assessment (health Care), Saultz J

Pediatric palliative and end-of-life care: the role of social work in pediatric oncology

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has…

Tags: 2005, Backlog, Communication, Family/psychology, Humans, Interdisciplinary Communication, Jones BL, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Medical Oncology, Pain/drug Therapy, Palliative Care/organization & Administration, Patient Care Team/organization & administration, Pediatrics, Professional Role, Social Work/organization & administration, Terminal Care/organization & Administration

Social work and end-of-life care: reviewing the past and moving forward

This paper reviews the professional literature with respect to the social work profession's involvement in end-of-life care. The search process was conducted by entering key words in various combinations to electronic databases. Eligible articles…

Tags: 2005, Altruism, Attitudes, Backlog, Brandsen CK, Clinical Competence, Health Knowledge, Health Services Accessibility, Humans, Interdisciplinary Communication, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Practice, Social Work/education/organization & administration, Terminal Care/organization & Administration

Professional social work education in end-of-life care: contributions of the Project on Death in America's Social Work Leadership Development program

Social work education in both BSW and MSW level courses is missing vital content about end-of-life care, palliative care, and bereavement. End-of-life care training opportunities through continuing education programs have also been limited. This…

Tags: 2005, Backlog, Bereavement, Csikai EL, Curriculum, Humans, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Palliative Care, Social Work/education, Terminal Care, Walsh-Burke K

Social work competencies in palliative and end-of-life care

Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a…

Setting an agenda for social work in end-of-life and palliative care: an overview of leadership and organizational initiatives

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in…

Tags: 2005, Backlog, Blacker S, Christ GH, Cooperative Behavior, Humans, Interdisciplinary Communication, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Leadership, Organizational Innovation, Palliative Care/organization & Administration, Social Work/organization & administration, Terminal Care/organization & Administration