Browse Items · Pediatric Palliative Care Library

Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research

BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in…

Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research.

AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND:…

Tags: *Bereavement, *Fathers/px [Psychology], *Social Support, 2011, 2023 SE4 - Parent Perspectives, Aho, Anna L, Astedt-Kurki, Paivi, Evidence-Based Nursing, Finland, Health Services Research, Humans, Journal of Clinical Nursing, Kaunonen, Marja, Male, Program Development, Tarkka, Marja-Terttu

Polypharmacy among Pediatric Cancer Patients Dying In the Hospital

BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life…

Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals

OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care…

Tags: 2021, Archives of Disease in Childhood, Bertaud S, Child, Coad J, Dale J, Health Services Research, July 2021 List, Mitchell S, Palliative Care, Qualitative Research, Slowther AM

Hospitalizations for mitochondrial disease across the lifespan in the U.S

IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the…

Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network

BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication…

Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…

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…

A Systematic Review of Measures of End-of-Life Care and Its Outcomes

Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published…

Documenting end of life decisions in residential aged care facilities in South Australia.

OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in…

Variations among Institutional Review Board reviews in a multisite health services research study

OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…

Institutional review boards and multisite studies in health services research: is there a better way?

OBJECTIVE: The following paper examines the issue of whether the current system for ethics review of multisite health services research protocols is adequate, or whether there exist alternative methods that should be considered. PRINCIPAL FINDINGS:…

Tags: 2005, Backlog, Biomedical and Behavioral Research, Dewa CS, Efficiency, Ethics Committees, Gold JL, Health Services Research, Health Services Research/ethics, Humans, Journal Article, Multi-site Ethics, Multicenter Studies as Topic/ethics, Organizational, Reference Standards, Research/organization & administration

Impact of institutional review board practice variation on observational health services research

OBJECTIVE: To describe, qualitatively and quantitatively, the impact of a review by multiple institutional review boards (IRBs) on the conduct of a multisite observational health services research study. DATA SOURCE AND SETTING: Primary data…

Tags: 2006, Backlog, Ethics Committees, Green LA, Health Services Research, Health Services Research/methods, Journal Article, Kowalski CP, Lowery JC, Multi-site Ethics, Qualitative Research, Research/organization & administration, United States, United States Department of Veterans Affairs, Wyszewianski L

Socioeconomic differences in childhood hospital inpatient service utilisation and costs: prospective cohort study

STUDY OBJECTIVE: To examine the association between socioeconomic position at the time of birth and the use and cost of hospital inpatient services during the first 10 years of life. DESIGN: Analysis of a database of linked birth registrations,…

Challenging the framework for evidence in palliative care research

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the…

Tags: 2005, Aoun S, Backlog, Evidence-Based Medicine/standards, Health Services Research, Humans, Journal Article, Kristjanson LJ, Palliative Care, Palliative Medicine, Randomized Controlled Trials/methods, Research Design/standards

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…

Oral morphine and respiratory function amongst hospice inpatients with advanced cancer

BACKGROUND: Respiratory depression is the opioid adverse effect feared most by physicians. This may hinder adequate dosing in cancer pain. The study was conducted to examine the respiratory function of patients with advanced cancer receiving…

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…

The effect of inpatient hospice units on hospice use post-admission

The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using…

Do we need another "stress and caregiving" study?

1989

Tags: 1989, Backlog, Health Services Research, home care services, Humans, Journal Article, Psychological, Stress, The Gerontologist, Zarit SH

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…

Advice seeking and appropriate use of a pediatric emergency department

OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical…

Learning to care for people with chronic illness facing the end of life

2000

Tags: 2000, Backlog, Death and Euthanasia, Health Services Accessibility, Health Services Research, JAMA, Journal Article, Lynn J, Palliative Care/economics/standards/trends, Policy Making, Professional Patient Relationship, Quality Of Health Care, RDF Project, Terminal Care/economics/standards/trends, United States

Frequent school-based clinic utilization: a comparative profile of problems and service needs

The purpose of this study is to compare frequent users of school-based clinic services with students who have an average rate of utilization. SAMPLE: Of the 1413 students enrolled in a Denver school-based clinic (DSBC) during the 1989-1990 school…

Preparation for oncology settings: what hospice social workers say they need

According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study…

Tags: 1999, Attitude Of Health Personnel, Backlog, Bronstein LR, Cooperative Behavior, Florida, Health & Social Work, Health Services Research, Hospice Care/manpower/methods, Humans, Inservice Training, Journal Article, Kovacs PJ, Needs Assessment, Neoplasms/nursing, Oncologic Nursing/education/manpower, Patient Care Team, Professional Competence, Social Work/education

Long-stay patients in the pediatric intensive care unit

OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of…

Hospice care for children: past, present, and future

Of the 100,000 children who die each year in the United States, close to 15,000 children could benefit from hospice/home care services. This article describes the concept of pediatric hospice care, reviews the Martinson study that was conducted in…

Tags: 1993, administration/statistics &, Adolescent, Backlog, Child, Child Health Services/organization &, Forecasting, Health Services Research, Home Care Services/organization &, Hospices/organization &, Humans, Infant, Journal Article, Journal Of Pediatric Oncology Nursing, Martinson IM, Mortality, numerical data/trends, Preschool

Quality-of-life measures in chronic diseases of childhood

SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what…

Tags: 2001, Adolescent, Backlog, Child, Chronic Disease, Disabled Children, Eiser C, Female, Great Britain, Health Services Research, Health Status Indicators, Health Technology Assessment (winchester, England), Humans, Journal Article, Male, Morse R, Preschool, Quality Of Life, Self Assessment (Psychology)

The WHO objectives for palliative care: to what extent are we achieving them?

This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are…

Quality of health care. Part 4: The origins of the quality-of-care debate

1996

Tags: 1996, Backlog, Blumenthal D, Cost Control, Health Care Costs, Health Services Research, Journal Article, New England Journal Of Medicine, Outcome Assessment (health Care), Professional Practice/trends, Quality of Health Care/economics, United States

Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.

AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by…

Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities.

BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth…

Tags: 2017, Adolescence, Child Development, Child: Care, Health and Development, December 2017 List, Disability, Gorter JW, Health Services Research, Nguyen T, Stewart D, Transition

'Why Does It Happen Like This?' Consulting With Users and Providers Prior to an Evaluation of Services for Children with Life Limiting Conditions and their Families

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…

“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.

Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical…

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