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palliative care and pediatric

Jürg C Streuli, Kimberley Widger, Christina Medeiros, Gregorio Zuniga-Villanueva, Madeline Trenholm
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. RESULTS: We reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators...
February 11, 2019: Patient Education and Counseling
Thomas Stegemann, Monika Geretsegger, Eva Phan Quoc, Hannah Riedl, Monika Smetana
Background: In pediatric health care, non-pharmacological interventions such as music therapy have promising potential to complement traditional medical treatment options in order to facilitate recovery and well-being. Music therapy and other music-based interventions are increasingly applied in the clinical treatment of children and adolescents in many countries world-wide. The purpose of this overview is to examine the evidence regarding the effectiveness of music therapy and other music-based interventions as applied in pediatric health care...
February 14, 2019: Medicines (Basel, Switzerland)
Kevin Madden, Maira Magno Charone, Sarah Mills, Seyedeh Dibaj, Janet L Williams, Diane Liu, Eduardo Bruera
BACKGROUND: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. OBJECTIVE: The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment...
February 13, 2019: Journal of Palliative Medicine
Quentin Baca, Carole Lin, Kelly O'Hare, Brenda Golianu, Ban Tsui
We read with great interest the excellent editorial by Dr.Bosenberg addressing innovative peripheral nerve blocks1 . As highlighted by Dr.Bosenberg, the newly described erector spinae plane (ESP) peripheral nerve block is used across multiple surgical specialties to provide perioperative pain control.2 With patient's father consent, we would like to share our recent experience with using continuous ESP for management of refractory pain in a pediatric patient receiving palliative care. This article is protected by copyright...
February 13, 2019: Paediatric Anaesthesia
Priyal P Fadadu, Joy C Liu, Brenda M Schiltz, Tran Dang Xoay, Phan Huu Phuc, Ashok Kumbamu, Yves Ouellette
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices surrounding end-of-life care in Vietnam. METHODS: This is a mixed-methods study conducted at a tertiary pediatric and neonatal intensive care unit in Hanoi. Physicians and nurses completed a quantitative survey about their views on end-of-life care...
February 6, 2019: Journal of Palliative Medicine
Zeng Jie Ye, Zhang Zhang, Mu Zi Liang, Xiao Xiao Liu, Zhe Sun, Jing Jing Zhao, Guang Yun Hu, Yuan Liang Yu
PURPOSE: This study was designed to report information regarding symptomology of incurable pediatric cancer to promote proactive medicine and support for children and their families in the palliative phase in Mainland China. METHOD: A multi-center retrospective cohort study including 205 children who died from incurable cancer between June 2008 and September 2013 were analyzed. RESULTS: An incurable diagnosis was confirmed between 0 and 1726 (median, 279) days from initial diagnosis with death occurring between 1 and 239(median, 83) days...
February 2019: European Journal of Oncology Nursing: the Official Journal of European Oncology Nursing Society
Gregorio Zuniga-Villanueva, Jose Luis Ramirez-GarciaLuna, Kevin Weingarten
BACKGROUND: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. OBJECTIVE: To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care. METHODS: A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists...
February 3, 2019: Journal of Palliative Care
William Splinter
PURPOSE OF REVIEW: Good pain management in children, especially those at end of life, is a crucial component of palliative medicine. The current review assesses some of the new and/or innovative ways to manage pain in children. The article focuses on some recent medications/pharmaceutical options such as cannabinoids and also innovative ways to administer medication to children, such as intranasal and inhalation. RECENT FINDINGS: Current approaches to pain management now include (1) new uses of old drugs such as ketamine and lidocaine, (2) use of new drugs/medications such as cannabinoids, and (3) creative use of old technology such as atomizers, intranasal drops, and inhalation...
February 4, 2019: Current Oncology Reports
Lydia K Wright, Jessica H Knight, Amanda S Thomas, Matthew E Oster, James D St Louis, Lazaros K Kochilas
OBJECTIVE: Pulmonary atresia with intact ventricular septum (PA/IVS) can be treated by various operative and catheter-based interventions. We aim to understand the long-term transplant-free survival of patients with PA/IVS by treatment strategy. METHODS: Cohort study from the Pediatric Cardiac Care Consortium, a multi-institutional registry with prospectively acquired outcome data after linkage with the National Death Index and the Organ Procurement and Transplantation Network...
February 2, 2019: Heart: Official Journal of the British Cardiac Society
Abby R Rosenberg, Kira Bona, Tumaini Coker, Chris Feudtner, Kelli Houston, Anisa Ibrahim, Robert Macauley, Joanne Wolfe, Ross Hays
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care-delivery. METHODS: Participants explored cases in one of four workshops focused on differences based on either race/ethnicity, economic disparity, religion/spirituality, or family-values...
January 24, 2019: Journal of Pain and Symptom Management
Kathryn Levy, Pei C Grant, Rachel M Depner, Kelly E Tenzek, Megan E Pailler, Lynda K Beaupin, Jennifer M Breier, David J Byrwa
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, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers...
January 21, 2019: American Journal of Hospice & Palliative Care
Natalia Arias, Eduardo Garralda, Liliana De Lima, John Y Rhee, Carlos Centeno
BACKGROUND: Indicators assessing national-level palliative care (PC) development used for cross-national comparison depict progress on this field. There is current interest on its inclusion in global monitoring frameworks. OBJECTIVE: Identify and conceptualize those most frequently used for international PC development reporting. DESIGN: Systematic review. DATA SOURCES: PubMed, CINAHL, Google Scholar, and Google targeting national-level development indicators used for cross-national comparison...
January 7, 2019: Journal of Palliative Medicine
Holly L Spraker-Perlman, Reena P Tam, Tyler Bardsley, Jacob Wilkes, Leah Farley, Dominic Moore, Joan Sheetz, Justin N Baker
BACKGROUND: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. OBJECTIVE: To determine the incidence and impact of PPC for previously healthy patients who died in a pediatric hospital. DESIGN: Retrospective chart review of all pediatric deaths over four years. SETTING/SUBJECTS: Patients were 0 to 25 years old, died during an inpatient stay at an academic pediatric hospital ≥48 hours after admission, and had no complex chronic conditions (CCCs) before admission...
December 27, 2018: Journal of Palliative Medicine
Penelope J Slater, Anthony R Herbert, Sarah J Baggio, Leigh A Donovan, Alison M McLarty, Julie A Duffield, Lee-Anne C Pedersen, Jacqueline K Duc, Angela M Delaney, Susan A Johnson, Melissa G Heywood, Charlotte A Burr
Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliative care services, through funding for Nurse Educators, Medical Fellows, a National Allied Health Educator, and national project staff. Methods: Pre- and post-education surveys were completed by participants immediately following the education, and confidence and knowledge were measured along nine domains related to the care of the child and family, including managing a new referral, symptom management, medications, preparing the family, and using local agencies...
2018: Advances in Medical Education and Practice
Gerhard Josef Kluger, Andreas Kirsch, Melanie Hessenauer, Holger Aust, Steffen Berweck, Wolfgang Sperl, Cornelia Betzler, Celina von Stülpnagel-Steinbeis, Martin Staudt
Among 131 children admitted to our institution for early phase rehabilitation after freshwater near-drowning (ND) between the year 1986 and 2000, 87 were in unresponsive wakefulness syndrome (UWS) for at least 4 weeks after the accidents. An anonymous questionnaire was sent to the families after 0.5 to 15.0 years (median: 4.6) and 48 mothers and 51 fathers of 55 of these 87 children were interviewed after 6.6 to 23.8 years (median: 13.8) of ND. At the time of the interviews, 8/55 children were able to perform daily living activities independently, 36/55 children were not able to do so (many of them suffered from chronic medical conditions like spasticity or disorders of swallowing), and 11/55 children had died...
December 20, 2018: Neuropediatrics
Hannah Lively-Endicott, Diego A Lara
Background: Heterotaxy is a condition of abnormal lateralization of organs across the body's left-right axis, causing multiple congenital malformations. The anatomic manifestations of heterotaxy syndrome generally follow one of two patterns, referred to as right atrial isomerism (with two similar right atria and duplication of right-sided features of multiple organs) and left atrial isomerism (with two similar left atria and duplication of left-sided features of multiple organs). Cardiac surgical intervention for patients with heterotaxy syndrome depends on ventricular physiology and circulatory balance...
2018: Ochsner Journal
Christopher J Plymire, Elissa G Miller, Meg Frizzola
Limited studies exist regarding the timing, location, or physicians involved in do-not-resuscitate (DNR) order placement in pediatrics. Prior pediatric studies have noted great variations in practice during end-of-life (EOL) care. This study aims to analyze the timing, location, physician specialties, and demographic factors influencing EOL care in pediatrics. We examined the time preceding and following the implementation of a pediatric palliative care team (PCT) via a 5-year, retrospective chart review of all deceased patients previously admitted to inpatient services...
December 10, 2018: Children
Boris Zernikow, Katharina Szybalski, Bettina Hübner-Möhler, Julia Wager, Michael Paulussen, Lisa Lassay, Norbert Jorch, Carola Weber, Dominik T Schneider, Gisela Janßen, Prasad T Oommen, Michaela Kuhlen, Thomas Brune, Regina Wieland, Michael Schündeln, Bernhard Kremens, Alfred Längler, Aram Prokop, Rita Kiener, Tim Niehues, Martina Rose, Margit Baumann-Köhler, Monika Pöppelmann, Heike Thorer, Martin Irnich, Kumar Sinha, Joanne Wolfe, Pia Schmidt
BACKGROUND: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care. DESIGN: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015)...
December 12, 2018: Palliative Medicine
Stephanie L Graff, Julia Close, Suzanne Cole, Laurie Matt-Amaral, Rasha Beg, Merry-Jennifer Markham
PURPOSE: Meaningful connections are an important aspect of career satisfaction. The Hematology Oncology Women Physician Group (HOWPG) is a private Facebook (FB) group of 936 women who practice within the hematology/oncology (H/O) field. We hypothesized that HOWPG adds value to education, emotional wellness, and practice of oncology for its membership. A survey was conducted within HOWPG to define group impact on members. MATERIALS AND METHODS: A voluntary, anonymous 12-question online survey was distributed to members of HOWPG by sharing the survey link within the FB group...
December 2018: Journal of Oncology Practice
Penelope J Slater, Rachel M Edwards, Ashraf A Badat
Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication...
2018: Journal of Healthcare Leadership
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