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Pediatric palliative nursing care

Lisa C Lindley, Laura V Trujillo
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i...
September 20, 2016: Hispanic Health Care International: the Official Journal of the National Association of Hispanic Nurses
Kara J Thieleman, Cara Wallace, Andrea N Cimino, Heidi A Rueda
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts...
July 2016: Journal of Social Work in End-of-life & Palliative Care
Debbie Stayer, Joan Such Lockhart
BACKGROUND: Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units. OBJECTIVES: To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families...
July 2016: American Journal of Critical Care: An Official Publication, American Association of Critical-Care Nurses
Lynn S Adams, Jeri L Miller, Patricia A Grady
Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. In June 2015, the National Institute of Nursing Research (NINR), the lead institute at the National Institutes of Health for end-of-life research, in conjunction with the National Center for Advancing Translational Sciences, Office of Rare Diseases Research (ORDR) held an interdisciplinary workshop on the unique challenges of caregiving and palliative care in adult and pediatric rare diseases...
July 2016: Journal of Palliative Medicine
Lisa C Lindley, Melanie J Cozad
OBJECTIVE: To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations. METHODS: Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data. RESULTS: Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -...
May 17, 2016: American Journal of Hospice & Palliative Care
Alison J Falck, Sheela Moorthy, Brenda Hussey-Gardner
BACKGROUND AND PURPOSE: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care...
June 2016: Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses
Karen Meneses, Wendy Landier, J Nicholas Dionne-Odom
OBJECTIVES: To consider current trends and future strategies that will bring about change in cancer care delivery for vulnerable populations. DATA SOURCES: Institute of Medicine reports, literature review, clinical practice observations and experiences. CONCLUSION: Vulnerable populations are older adults, both minorities and the underserved, children, and individuals at end of life. These groups pose unique challenges that require health system changes and innovative nursing models to assure access to patient-centered care in the future...
May 2016: Seminars in Oncology Nursing
Kathleen E Montgomery, Kathleen J Sawin, Verna Hendricks-Ferguson
BACKGROUND: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level of nursing experience influences the perspectives of nurses communicating during EOL. OBJECTIVE: The aim of this study is to describe the commonalities of experienced nurses' perceptions of communicating during PC and EOL and perceptions of barriers and facilitators to effective communication...
April 1, 2016: Cancer Nursing
Gwenaëlle Bidet, Lysanne Daoust, Michel Duval, Thierry Ducruet, Baruch Toledano, Nago Humbert, France Gauvin
BACKGROUND: An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered. OBJECTIVES: The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD...
March 2016: Journal of Palliative Medicine
Caroline Drolet, Helene Roy, Julie Laflamme, Marie-Eve Marcotte
BACKGROUND: The oral transmucosal (OTM) route for administration of comfort medication in infants at the end-of-life has long been favored by our pediatric palliative care team but has rarely been described in the literature. OBJECTIVE: To determine the feasibility of implementing a standardized comfort care protocol using OTM medications in dying neonates. METHOD: A comfort protocol prescribing medication by the OTM route and standardized assessment were established...
April 2016: Journal of Palliative Medicine
Charissa Thari Jagt-van Kampen, Leontien C M Kremer, A A Eduard Verhagen, Antoinette Y N Schouten-van Meeteren
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 test the effect of the education program on actual compliance as well as documentation of compliance to the guideline. METHODS: We performed a prospective study with pre- and post-intervention evaluation on compliance to the guideline of the nurse specialists of a pediatric palliative care team for case management at a children's university hospital...
2015: BMC Medical Education
Lindsey Justice, Misty Ellis, Cecilia St George-Hyslop, Amy Donnellan, Amiee Trauth, Brenda Drouillard, Claire Watt, Louise Callow
The Pediatric Cardiac Intensive Care Society (PCICS) Nursing Guidelines were developed to provide an evidence-based resource for bedside cardiac intensive care unit nursing care. Guideline topics include postoperative care, hemodynamic monitoring, arrhythmia management, and nutrition. These evidence-based care guidelines were presented at the 10th International Meeting of PCICS and have been utilized in the preparation of this article. They can be accessed at
October 2015: World Journal for Pediatric & Congenital Heart Surgery
LeeAi Chong, Adina Abdullah
OBJECTIVE: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. METHOD: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies...
September 29, 2015: American Journal of Hospice & Palliative Care
Kari A Mastro, Joyce E Johnson, Nicole McElvery, Christa Preuster
This article describes the program and outcomes of a nurse driven, patient- and family-centered pediatric advanced comprehensive care team (PACCT) palliative program. This care delivery model improved patient outcomes by providing care across the healthcare continuum for pediatric patients. Since the inception of PACCT, no child has died on a ventilator in the pediatric ICU associated with end-of-life-related issues.
September 2015: Journal of Nursing Administration
Norma E Conner, Nizam Uddin
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care...
August 2016: American Journal of Hospice & Palliative Care
Michael H Chan, Frederick Boop, Ibrahim Qaddoumi
PURPOSE: As the morbidity and mortality associated with communicable diseases continue to decrease in the developing world, the medical burden of childhood cancer continues to expand. Although international aid and relief groups such as the World Health Organization recognize the importance of childhood cancer, their main emphasis is on the more easily treated malignancies, such as leukemias and lymphomas, and not pediatric brain tumors, which are the second most common malignancy in children and the leading cause of cancer-related deaths in the pediatric population...
August 2015: Child's Nervous System: ChNS: Official Journal of the International Society for Pediatric Neurosurgery
Lucy P O'Quinn, Barbara K Giambra
Pediatric nurses provide holistic family-centered care for children with life-limiting illnesses while being sensitive to children's growth and developmental needs. To learn how pediatric palliative care programs benefit children and their families, the following clinical question was asked: Among children with a life-limiting illness, does the use of a palliative care program compared with not using a palliative care program improve quality of life for patients and their families? Evidence from two studies found that palliative care services improve quality of life for children with life-limiting illness and their families in the areas of the child's emotional well-being and parental perception of preparation for the child's end of life, resulting in a low grade for the body of evidence...
November 2014: Pediatric Nursing
Eileen R O'Shea, Suzanne Hetzel Campbell, Arthur J Engler, Rachel Beauregard, Elizabeth C Chamberlin, Leanne M Currie
BACKGROUND: Educational practices and national guidelines for best practices of providing palliative care to children and their families have been developed and are gaining support; however, the dissemination of those practices lags behind expectations. Incorporating education for pediatric palliative care into nursing pre-licensure programs will provide guidelines for best practices with opportunities to enact them prior to graduation. OBJECTIVE: To evaluate the effect of an integrated curriculum for palliative care on nursing students' knowledge...
June 2015: Nurse Education Today
Renee D Boss, Nancy Hutton, Pamela L Griffin, Beth H Wieczorek, Pamela K Donohue
BACKGROUND: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment. AIM: To explore pediatric clinicians' experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for Life-Sustaining Treatment. DESIGN: Clinician surveys and clinician and parent focus groups...
April 2015: Palliative Medicine
Verna L Hendricks-Ferguson, Javier R Kane, Kamnesh R Pradhan, Chie-Schin Shih, Karen M Gauvain, Justin N Baker, Joan E Haase
When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors...
September 2015: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
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