Browse Items · Pediatric Palliative Care Library

Comprehensive care programmes for children with medical complexity

Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been…

Tags: 2024, Adolescent, adverse outcome, August List 2024, Bias, Caregiver, Child, Child Health Care, Child Preschool, Children With Medical Complexity, Chronic Disease, Cochrane Database of Systematic Reviews, Cohen E, community care, Comprehensive Health Care, Connell TG, Controlled Before-After Studies, controlled clinical trial (topic), Cox GR, D’Aprano AL, Decision Making, Emergency Health Service, Emergency Ward, Epidemiology, Functional Status, Gibb SM, Harvey AR, Health Care, Health Care Cost, Health Care Delivery, health care need, health care organization, Health Care Personnel, Health Care Quality, Health Care Utilization, health Insurance, Hospital Admission, hospital readmission, Human, Humans, Infant, Interrupted Time Series Analysis, life satisfaction, Medical Care, Meehan E, Merrick N, meta analysis, Mountford NJ, Multidisciplinary team, Multiple Chronic Conditions, Non-Randomized Controlled Trials as Topic, outcome assessment, Patient Safety, Perception, Preschool Child, Primary Health Care, Program Evaluation, pulmonary aspiration, Quality Of Health Care, Quality Of Life, Randomized Controlled Trial (topic), Randomized Controlled Trials as Topic, remuneration, Review, social determinants of health, Social Worker, statistical bias, Survival Rate, Telemedicine, Therapy, Transition To Adult Care, Williams K

Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents

Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care…

Children's palliative care: examination of a nursing rotation programme

An 8-month rotation programme was implemented for five nurses employed in two kinds of children's palliative care environments: hospital wards and hospices. This study reports the views of the nurses completing the rotation. The research drew on…

Tags: 2021, Attitude Of Health Personnel, Children's Hospice, Children's palliative nursing, Clinical Competence, Hospice And Palliative Care Nursing/education, Humans, International Journal of Palliative Nursing, Job Satisfaction, London, May 2021 List, Nursing Staff/education, O'Grady M, Pediatric Nursing/education, Petty J, Program Evaluation, Rotation programmes, Whiting L, Whiting M

Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review

Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the…

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention

Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental,…

Tags: 2019, Action Research, Adaptation, Adult, American Journal of Hospice & Palliative Medicine, August 2019 List, Beaupin L K, Breier J M, Byrwa D J, Caregiver, Caregiver Support, Caregivers -- Psychosocial Factors, Coefficient Alpha, Criterion-Related Validity, Data Analysis Software, Depner R M, Descriptive Statistics, Discriminant Validity, Female, Grant P C, Health Facilities, Human, Internal Consistency, Levy K, Life Purpose, Married Women, meaning-centered psychotherapy, Middle Age, Mothers, Multimethod Studies, Narratives, New York, Pailler M E, Paired T-Tests, Palliative Care -- Psychosocial Factors, Pediatric, Pediatric Care, pediatric caregiver, Pediatric Palliative Care, Personal Satisfaction, Photography, photovoice, Pilot Studies, Pretest-Posttest Design, Program Development, Program Evaluation, Program Implementation, Psychological, Psychotherapy -- Methods, Questionnaires, Reliability, Research Subject Recruitment, Semi-Structured Interview, social media, surveys, Tenzek K E, Whites

Impact of a palliative care initiative on end-of-life care in the general wards: A before-and-after study._

BACKGROUND: Data on deaths in the general wards of our hospital in 2007 revealed infrequent discussions on end-of-life care and excessive burdensome interventions., AIM: A physician order form to withhold inappropriate life-sustaining interventions…

Tags: 2014, Advance Care Planning/st [Standards], Advance Care Planning/standards, Aged, Asian, Backlog, Cardiopulmonary Resuscitation, Chronic Disease/ep [Epidemiology], Chronic Disease/epidemiology, Chronic Disease/th [Therapy], Chronic Disease/therapy, Chua G, Clinical Audit, Comorbidity, DNAR, DNAR Outcomes, Do-not-resuscitate Orders, Female, Forms and Records Control, general wards, Hospital Mortality/td [Trends], Hospital Mortality/trends, Humans, Journal Article, Life Support Care/methods, Life Support Care/mt [Methods], Life Support Care/sn [Statistics & Numerical Data], Life Support Care/statistics & numerical data, Lim Tow K, Logistic Models, Male, Palliative Care, Palliative Medicine, Patient Admission/statistics & numerical data, Patient Admission/td [Trends], Patient Admission/trends, Phua J, Program Evaluation, Resuscitation Orders, Retrospective Studies, Seah A, Singapore/ep [Epidemiology], Singapore/epidemiology, Social Class, Tan A, Withholding Treatment/sn [statistics & Numerical Data], Withholding Treatment/statistics & Numerical Data

Ethnicity, race, and advance directives in an inpatient palliative care consultation service.

OBJECTIVE: Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate…

Tags: 2013, 80 And Over, Adult, Advance Directives/eh [Ethnology], African Americans/statistics & numerical data, Aged, Asian Continental Ancestry Group/sn [Statistics & Numerical Data], Attitude to Death/eh [Ethnology], Backlog, Cooper LB, Cross-cultural Comparison, Decision Making, DNAR, European Continental Ancestry Group/sn [Statistics & Numerical Data], Female, Hispanic Americans/sn [Statistics & Numerical Data], Humans, Journal Article, Lesser ML, Liberman T, Male, Middle Aged, Mir Tanveer P, New York/ep [Epidemiology], Nouryan CN, Palliative & Supportive Care, Palliative Care/og [Organization & Administration], Pekmezaris R, Program Evaluation, Referral and Consultation/og [Organization & Administration], Resuscitation Orders, Sison CP, Spirituality, Terminal Care/og [organization & Administration], Wolf-Klein GP, Zaide GB

Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors

PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed…

Evaluation of the effect of a comprehensive multidisciplinary care pathway for hip fractures: design of a controlled study.

BACKGROUND: Hip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved…

Integrating oncology and palliative home care in Italy: the experience of the "L'Aquila per la Vita" Home Care Unit

AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit…

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis

BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study…

Variation in Institutional Review processes for a multisite observational study

BACKGROUND: The Veterans Administration is an ideal setting for multisite studies; however, individual VA Institutional Review Board (IRB) approval is necessary. This study examines the burden of multisite IRB approval on a Health Services Research…

Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective,…

Tags: 2006, Adolescent, Adult, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Analysis of Variance, Attitude To Health, Backlog, Child, Choice Behavior, Consent Forms, Developmental Disabilities/co [Complications], Developmental Disabilities/complications/therapy, Developmental Disabilities/th [Therapy], DNAR, Documentation, Female, Friedman SL, Health Education/og [Organization & Administration], Health Education/organization & administration, Humans, Journal Article, Journal Of The American Medical Directors Association, Male, Massachusetts, Organizational Policy, Parents, Parents/ed [education], Parents/education/psychology, Parents/px [psychology], Preschool, Program Evaluation, Resuscitation Orders/psychology, Resuscitation Orders/px [Psychology], Retrospective Studies, Skilled Nursing Facilities/og [Organization & Administration], Skilled Nursing Facilities/organization & administration, Treatment Refusal/psychology, Treatment Refusal/px [Psychology]

Evaluation of transition services for young people with cystic fibrosis in Southeast London

We report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either King's College Hospital (KCH) or University Hospital Lewisham (UHL).

Tags: 2005, Adolescent Transitions, Adult, Backlog, Carmel S, Child, Continuity Of Patient Care/organization & Administration, Cystic Fibrosis/therapy, England, Humans, Journal Article, Journal Of Interprofessional Care, Lowton K, Luce P, Mathes L, Patient Care Team/organization & administration, Program Evaluation, While A, Wyatt H

Bereavement care for families part 2: Evaluation of a paediatric follow-up programme

In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they…

Tags: 2006, Backlog, Bereavement, Child, deJong-Berg MA, Family, Female, Follow-up Studies, Humans, International Journal of Palliative Nursing, Journal Article, Kane L, Male, Pediatrics, Program Evaluation

The evolution of pediatric palliative medicine and its integration with anesthesia

2006

Tags: 2006, Anesthesia, Backlog, Child, Humans, International Anesthesiology Clinics, Journal Article, Palliative Care/organization & Administration, Pediatric Nursing/organization & administration, Pediatrics, PedPal Lit, Program Evaluation, Weidner NJ

Survey of specialized tertiary care facilities for adults with congenital heart disease

BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest,…

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…

Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy

Aim: To determine the effectiveness of an interdisciplinary cognitive behavioural treatment for adolescents with chronic pain. METHODS: Fifty seven adolescents (mean age 14.28 years) with chronic pain and 57 accompanying adults underwent an…

The development of an interdisciplinary outpatient clinic in specialist palliative care

The interdisciplinary team approach is essential in the assessment and management of the palliative care of patients and their families. An innovative approach has been developed to allow the interdisciplinary team to see patients and their families…

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

Transition program from pediatric to adult care for cystic fibrosis patients

A survey of adolescents and young adults with cystic fibrosis (CF) attending an adult CF center was conducted to evaluate a transition program as a means of transferring care from pediatric to adult setting. A total of 40 patients completed a…

The Cardiovascular Health Education Program: assessing the impact on rural and urban adolescents' health knowledge

In this research study, a quasi-experimental, nonequivalent control group pretest-posttest design was used to assess the impact of the Cardiovascular Health Education Program (CHEP) on the cardiovascular health knowledge of grade eight adolescents. A…

Contextual influences on school provision of health services

PURPOSE: To examine contextual factors that may facilitate or impede the provision of school health services. METHODS: Using a composite database derived primarily from the National Longitudinal Study of Adolescent Health, we used logistic regression…

Pain management: a quality improvement project

Pain management in the PACU is vital to patient care and favorable outcomes. Understanding all aspects of pain management is essential when caring for surgical patients. Most PACUs have quality improvement (QI) and/or risk management projects that…

Tags: 1997, Backlog, Dolezal D, Humans, Journal Article, Journal Of Perianesthesia Nursing, Pain, Postoperative/nursing/therapy, Program Evaluation, Quality of Health Care/organization & administration, RDF Project, Recovery Room/standards, Rittenmeyer H, Vogel E

Planning for the evaluation of a pediatric end-of-life curriculum

BACKGROUND: Decision making at the end of life can be complex and emotionally challenging for healthcare providers, particularly in pediatrics. Unfortunately, few undergraduate and graduate medical education curricula adequately address these issues.…

Tags: 2000, Backlog, Child, Evaluation Studies, Feldman J, Journal Article, Journal of Palliative Medicine, Palliative Care, Palliative Treatment, Program Evaluation, Slavin S, Terminal Care

End-of-life care in the intensive care unit: a research agenda.

BACKGROUND: The intensive care unit (ICU) represents a unique clinical setting in which mortality is relatively high and the professional culture tends to be one of "rescue therapy" using technological and invasive interventions. For these reasons,…

Treasure Weekend: supporting bereaved siblings

The importance of allowing bereaved siblings the opportunity to be involved and mourn the loss of a sibling family member has gained increasing recognition. Child family members may need support in the same way that parents might need support to cope…

Advance directives in a pediatric emergency department.

Parents of children with terminal illnesses are not always present when a life-threatening event occurs. For many of these children, an advance directive specifying alternate code orders has been written by the parent or legal guardian (hereafter the…

Unique aspects of caring for dying children and their families

Pediatric hospice has become an important service for children and their families in the past decade. In this article we present unique aspects of StarShine, the hospice of Children's Hospital Medical Center in Cincinnati, Ohio. Length-of-service…

Implementation and evaluation of a quality improvement process to improve pain management in a hospice setting

The purpose of this article is to describe the implementation and evaluation of a quality improvement process to improve pain management in a hospice setting. A retrospective chart audit of 702 patient visits pre- and 536 patient visits…

Tags: 1998, Administration, Alden C, American Journal of Hospice & Palliative Medicine, Backlog, Duggleby W, Hospice Care/standards, Human, Journal Article, Non-U.S. Gov't, Nursing Audit, Outcome and Process Assessment (Health Care)/organization &, Pain/nursing, Program Development, Program Evaluation, Retrospective Studies, Support, Total Quality Management/organization & administration

Issues in research: Formative evaluation and its relevance to palliative care

1998

Tags: 1998, Backlog, Clark D, Data Collection, England, Field D, Health Care, Ingleton C, Journal Article, Palliative Care/standards, Palliative Medicine, Program Evaluation, Quality Indicators, Quality Of Health Care

Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care

The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…

Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…

An integrative approach to music therapy in pediatric palliative care.

Tags: 2014, Adolescent, British Columbia, Child, Child Preschool, Clark BA, Female, Hospices, Humans, Infant, Journal Of Palliative Care, Male, Music Therapy, Palliative Care, Program Development, Program Evaluation, Siden H, Straatman L, Young Adult

Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer

Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe…

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