Browse Items · Pediatric Palliative Care Library

The Development And Evaluation Of A Holistic Needs Assessment Within Children’s Palliative Care.

Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well…

Tags: 2016, Assessment, Berger Z, Child, Hartley G, Holistic, Holistic Nursing, Humans, International Journal of Palliative Nursing, May 2016 List, Maynard L, Needs Assessment, Palliative, Palliative Care, Pediatrics, Pilot Projects, Qualitative

Family And Healthcare Professionals’ Perceptions Of A Pilot Hospice At Home Programme For Children: A Qualitative Study

Background
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the…

Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education

BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved…

Neonatal Palliative Care-alice's Journey

Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and…

Interactive Palliative And End-of-life Care Modules For Pediatric Residents

Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care…

Tags: 2017, Auger J, Baker A, Carrasca L, Doshi A, International Journal of Paediatrics, Internship And Residency, May 2017 List, Palliative Care, Pian MS, Pian P, Pilot Projects, Proudfoot JA, Ross MK, Terminal Care

A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care

We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families…

Impact Of A Multifaceted Education Program On Implementing A Pediatric Palliative Care Guideline: A Pilot Study

BACKGROUND: A national clinical practice guideline for pediatric palliative care was published in 2013. So far there are only few reports available on whether an educational program fosters compliance with such a guideline implementation. We aimed to…

Tags: 2015, BMC medical education, Child, Education Medical Continuing/methods, Guideline Adherence, Humans, Jagt Van Kampen CT, July 2017 List, Kremer LC, Palliative Care/standards, Palliative Medicine/education, Palliative Medicine/standards, Pediatrics/education, Pediatrics/standards, Pilot Projects, Prospective Studies, Quality Indicators Health Care, Schouten-Van Meeteren AYN, Verhagen AA

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…

Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment

BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…

Tags: 2013, Adolescent, Analgesics/ Therapeutic Use, Carleton BC, Child, Developmental Disabilities/ Complications, Female, Humans, Male, Oberlander TF, Pain and Irritability Project, Pain Management/ Methods, Pain Research & Management, Pain/complications/ Drug Therapy, Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment, Pilot Projects, Practice Patterns Physicians'/ Statistics & Numerical Data, Siden H

Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…

Tags: 2011, BMC Health Services Research, British Columbia, Community-institutional Relations, Continuity Of Patient Care, Hospice Care, Humans, Models Theoretical, Palliative Care, Pediatrics, Pilot Projects, Risk Management/ Organization & Administration, Siden H, Urbanoski K, Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Tags: 2008, Cadell S, Canada, Child, Davies B, Derman S, Health Planning, Health Services Needs And Demand, Hospices/organization & administration, Humans, International Journal of Palliative Nursing, Palliative Care, Pediatrics, Pilot Projects, Siden H, Steele R, Straatman L

Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study

CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality…

A pilot study of palliative medicine fellows' hospice home visits.

This was a prospective descriptive study of hospice physician home visits (HVs) conducted by Hospice and Palliative Medicine Fellows. Our objectives were 1) to improve our knowledge of hospice care at home by describing physician HVs 2) to identify…

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…

Challenges in identifying children for palliative care

1996

Tags: 1996, Attitude Of Health Personnel, Attitude To Death, Backlog, Caregivers/psychology, Child, Davies B, Human, Journal Article, Journal Of Palliative Care, Palliative Care, Patient Care Team, Patient Selection, Pilot Projects, Quality Of Life, Steele R

Audit of deaths in general practice: pilot study of the critical incident technique

OBJECTIVE--To develop and pilot a method for conducting an audit of deaths in general practice by the critical incident technique. DESIGN--Prospective use of the technique within a primary health care team, with the aid of a facilitator, to analyse…

The health-line--a method for collecting data on self-rated health over time: a pilot study

BACKGROUND: There is a need for an instrument to record a life-course perspective of self-rated health. AIM: To test the "health-line", a simple, comprehensive method of collecting data on self-rated health over time. METHOD: In 1996, a questionnaire…

The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.

Few tools are available to pediatricians for tracking and monitoring disability status in children. We describe the conceptual basis and pilot use of the Functional Independence Measure for Children (WeeFIM). Our pilot use of this instrument in…

Adult education program in palliative care for nursing facility physicians: design and pilot test

Nursing facilities (NF) are important sites for the care of dying patients. Curricula likely to improve end-of-life care are needed for NF physicians. To this end, a model medical school palliative care curriculum was modified for experienced NF…

Can the needs of the critically ill child be identified using scenarios? Experiences of a modified Delphi study

The Delphi technique enables the structuring of group opinion and discussion using a survey approach, maintaining the anonymity of panel members and preventing contamination of individual responses through peer pressure. The Delphi technique was used…

Tags: 1999, Backlog, Child, Clifford CM, Critical Illness/nursing, Delphi Technique, Endacott R, Evaluation Studies, Health Services Needs and Demand/statistics & numerical data, Humans, Intensive Care/statistics & numerical data, Journal Article, Journal Of Advanced Nursing, Pilot Projects, Questionnaires, Reproducibility of Results, Tripp JH

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling…

Computer-assisted health counselor visits: a low-cost model for comprehensive adolescent preventive services

OBJECTIVE: To evaluate a low-cost strategy for providing preventive health services to adolescents using computerized health assessments with individualized educational videos, trained health counselors, and nurses. DESIGN: Feasibility study, cost…

Raising the standard of care for imminently dying patients using quality improvement

2002

Tags: 2002, Backlog, Bookbinder M, Critical Pathways, Human, Journal Article, Journal of Palliative Medicine, Non-U.S. Gov't, Pilot Projects, Program Development, Program Evaluation, Romer AL, Support, Terminal Care/standards, Total Quality Management

Nutritional status in childhood malignancies

In children affected by tumor, nutritional status is important to sustain aggressive chemotherapy and to support normal growth during and after therapy. The aim of this study was to investigate the prevalence of nutritional status disorders in a…

Individualizing treatment decisions. The likelihood of being helped or harmed

Clinical decision making cannot rely on evidence alone. Although significant advances have occurred in the development of high-quality evidence, similar efforts must be made to develop and evaluate tools that can be used at the bedside to…

Tags: 2002, Anticoagulants/therapeutic use, Backlog, Decision Making, Evaluation And The Health Professions, Evidence-based Medicine, Humans, Journal Article, Patient Participation, Pilot Projects, Risk Assessment, Straus SE, Stroke/prevention & control, Warfarin/therapeutic use

Does a palliative care clinic have a role in improving end-of-life care? Results of a pilot program

OBJECTIVE: To assess the efficacy of a palliative care clinic (PCC), which provided some of the interdisciplinary services and expertise of an inpatient consult service to outpatients, in traditional clinic sessions. DESIGN: Chart review. SETTING: A…

The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P)

Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…

A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…

Osteopenia in children with acute lymphoblastic leukemia: a pilot study of amelioration with Pamidronate

Developing the Liverpool Care Pathway for the dying child

In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice,…

Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback

OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a…

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

Effect of sublingual application of cannabinoids on intraocular pressure: a pilot study

PURPOSE: The purpose of this study was to assess the effect on intraocular pressure (IOP) and the safety and tolerability of oromucosal administration of a low dose of delta-9-tetrahydrocannabinol (Delta-9-THC) and cannabidiol (CBD). PATIENTS AND…

Experience in the use of the palliative care outcome scale.

GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

What is a pilot or feasibility study? A review of current practice and editorial policy

BACKGROUND: In 2004, a review of pilot studies published in seven major medical journals during 2000-01 recommended that the statistical analysis of such studies should be either mainly descriptive or focus on sample size estimation, while results…

Tags: 2010, Arain M, Backlog, Bmc Medical Research Methodology, Campbell MJ, Cooper CL, Data Interpretation, Editorial Policies, Feasibility Studies, Humans, Journal Article, Lancaster GA, Methods, Pilot Projects, statistical

A tutorial on pilot studies: the what, why and how

Pilot studies for phase III trials - which are comparative randomized trials designed to provide preliminary evidence on the clinical efficacy of a drug or intervention - are routinely performed in many clinical areas. Also commonly know as…

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…

Case study: the Interact Home Telehealth Project

Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service…

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