Browse Items · Pediatric Palliative Care Library

Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study

OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a…

Current Status of the Pediatric Palliative Care Pilot Project in South Korea Based on the Experience of a Single Center

Purpose: We evaluated the status of patients enrolled in South Korea’s pediatric palliative care pilot project based on the experience of a single center. This study examined factors related to end-of-life services and differences in medical costs.…

Tags: 2023, Journal of Hospice and Palliative Care, Palliative Care, Pilot Projects, September List 2055, Sun HC, Yeonhee L

A pilot study on sports activities in pediatric palliative care: just do it

Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals

OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.…

A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…

Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot

BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones,…

Tags: 2022, Anstey S, Cell Phone, Child, COVID-19, Data Collection, Davies J, Dunn C, February List 2023, Humans, Interviews, Jane BM, Jones A, Methodology, Nursing Research, Parents, Pilot Projects, Research, Research Methods

Training in Expression of Authentic Condolences in Healthcare: A Pilot Study

Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…

Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…

Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study

BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the…

Tags: 2017, Adolescent, Adult, Aged, Aguilera-Albesa S, Behavior, Castro C A, Child, Coelho M, Cognitive Dysfunction/di [Diagnosis], Cognitive Dysfunction/et [Etiology], Correia G L, Costa C, Cross-sectional Studies, Cuadras P D, Darling A, Disabled Persons, dystonia/di [Diagnosis], Dystonia/et [Etiology], Espinos C, Ferreira J, Garcia P J, Garrido C, Gaston I, Gavilan I T, Gonzalez G L, Gutierrez F, Hernandez L C, Humans, IND, Lin J P, Lorenzo S G, Lupo V, Madruga M, Magalhaes M, Marti M J, Marti S L, Martinez-Martin P, Martorell L, Mental Disorders/di [Diagnosis], Mental Disorders/et [Etiology], Middle Aged, Moreira F, Movement Disorders, Nardocci N, Ocular Motility Disorders/di [Diagnosis], Ocular Motility Disorders/et [Etiology], Ortigoza E J D, Pantothenate Kinase-Associated Neurodegeneration/co [Complications], Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis], Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics], Parkinsonian Disorders/di [Diagnosis], Parkinsonian Disorders/et [Etiology], Perez D B, Pilot Projects, Pires P, PKANDRS, Pons R, Pujol M, Ramos L J, Rego P, Reproducibility of Results, Rodriguez-Blazquez C, scale development, Severity Of Illness Index, Stamelou M, Stefanis L, Tello C, Temudo T, Tomas V M, tone and motor problems, tool development, Tustin K, Vela L, Young Adult, Zorzi G

Early Identification of Pediatric Neurology Patients With Palliative Care Needs: A Pilot Study

Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot…

Tags: 2019, American Journal of Hospice and Palliative Medicine®, Emrick L, interdisciplinary research, Jarrell JA, Lyons-Warren AM, Neurology, Palliative Care, Patient Care, Pediatrics, Pilot Projects, September 2019 List, Stowe RC

Individualised advance care planning in children with life-limiting conditions

INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to…

A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States

OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career…

Tags: 2018, April 2018 List, Burnout, Cesarean Section, Compassion Fatigue, compassion satisfaction, Fatigue, Kase SM, Palliative And Supportive Care, Palliative Care, Pediatric Palliative Care, Pilot Projects, United States, Waldman ED, Weintraub AS

Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows

BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…

Tags: 2018, April 2018 List, Baker JN, Bereavement, Cunningham MJ, Kaye E, Levine DR, Mahoney D, Pediatrics, Pilot Projects, Snaman JM, Sykes A

Barriers and facilitators to the implementation of a paediatric palliative care team

Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…

Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This…

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…

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…

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…

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

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…

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.…

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…

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…

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…

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…

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,…

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

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…

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…

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…

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

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…

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

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…

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…

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

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…

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…

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…

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