Browse Items · Pediatric Palliative Care Library

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…

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…

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…

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

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

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…

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

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…

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…

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…

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

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

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…

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

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

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

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

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

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…

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…

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…

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…

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…

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

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…

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,…

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…

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…

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…

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…

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…

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…

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

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…

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