Browse Items · Pediatric Palliative Care Library

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

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…

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…

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

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

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…

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…

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…

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…

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

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…

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

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

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…

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

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…

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…

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…

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…

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

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

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…

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…

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…

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

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

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…

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…

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…

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

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

Browse Items (56 total)