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https://www.readbyqxmd.com/read/29451689/barriers-to-accessing-palliative-care-for-pediatric-patients-with-cancer-a-review-of-the-literature
#1
REVIEW
Emily R Haines, A Corey Frost, Heather L Kane, Franziska S Rokoske
Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases...
February 16, 2018: Cancer
https://www.readbyqxmd.com/read/29443654/palliative-care-consultation-should-be-routine-for-all-children-who-enroll-in-a-phase-i-trial
#2
Sarah Lord, Kevin Weingarten, Adam Rapoport
No abstract text is available yet for this article.
February 14, 2018: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/29440127/ethics-and-patient-and-public-involvement-with-children-and-young-people
#3
Sarah Jane Mitchell, Anne-Marie Slowther, Jane Coad, Shazaan Akhtar, Elizabeth Hyde, Dena Khan, Jeremy Dale
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care...
February 9, 2018: Archives of Disease in Childhood. Education and Practice Edition
https://www.readbyqxmd.com/read/29433576/barriers-and-facilitators-to-the-implementation-of-a-paediatric-palliative-care-team
#4
Lisa M Verberne, Marijke C Kars, Sasja A Schepers, Antoinette Y N Schouten-van Meeteren, Martha A Grootenhuis, Johannes J M van Delden
BACKGROUND: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home...
February 12, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29427739/predictors-of-late-palliative-care-referral-in-children-with-cancer
#5
Erica C Kaye, Jonathan Jerkins, Courtney A Gushue, Samantha DeMarsh, April Sykes, Zhaohua Lu, Jennifer M Snaman, Lindsay Blazin, Liza-Marie Johnson, Deena R Levine, R Ray Morrison, Justin N Baker
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown. OBJECTIVES: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service...
February 7, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29425881/pediatric-oncology-provider-perceptions-of-a-pediatric-palliative-care-service-the-influence-of-emotional-esteem-and-emotional-labor
#6
Julia E Szymczak, Theodore Schall, Douglas L Hill, Jennifer K Walter, Shefali Parikh, Concetta DiDomenico, Chris Feudtner
CONTEXT: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns. OBJECTIVE: To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation...
February 6, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29418063/perceptions-of-barriers-and-facilitators-to-early-integration-of-pediatric-palliative-care-a-national-survey-of-pediatric-oncology-providers
#7
Todd Dalberg, Neil L McNinch, Sarah Friebert
OBJECTIVES: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. METHODS: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally...
February 8, 2018: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29417474/the-impact-of-fellowship-in-dietetics-on-clinical-practice
#8
Terezie Tolar Mosby
Medical nutrition therapy (MNT) in pediatric cancer treatment is essential. The Nutrition Department and the International Outreach Program at St. Jude Children's Research Hospital in Memphis, TN have worked together from 2005 to 2013 to develop and implement a training program for international dietitians working with pediatric oncology patients. During that time, St. Jude hosted 15 dietitians from various countries for this 3-week-long program. The curriculum provided experience in nutrition risk screening, nutrition care process, nutrition for cancer prevention, palliative care, and exposure to nutrition support...
February 7, 2018: Journal of Cancer Education: the Official Journal of the American Association for Cancer Education
https://www.readbyqxmd.com/read/29412772/physician-perspectives-on-palliative-care-for-children-with-advanced-heart-disease-a-comparison-between-pediatric-cardiology-and-palliative-care-physicians
#9
Emily Morell Balkin, Lynn A Sleeper, James N Kirkpatrick, Keith M Swetz, Mary Katherine Coggins, Joanne Wolfe, Elizabeth D Blume
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE: To compare the perspectives of PPC physicians and pediatric cardiologists regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based surveys. RESULTS: Responses from 183 pediatric cardiologists were compared to those of 49 PPC physicians (response rates 31% [183/589] and 28% [49/175], respectively)...
February 7, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29410951/a-review-of-the-integrated-model-of-care-an-opportunity-to-respond-to-extensive-palliative-care-needs-in-pediatric-intensive-care-units-in-under-resourced-settings
#10
REVIEW
Michelle Grunauer, Caley Mikesell
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. The consultative model and the integrated model of care (IMOC) are the most common strategies used to make PPC available to critically ill children. In the consultative model, the pediatric intensive care unit (PICU) team, the patient, or their family must request a palliative care (PC) consultation with the external PC team for a PICU patient to be evaluated for special care needs...
2018: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/29397521/end-of-life-care-of-children-with-diffuse-intrinsic-pontine-glioma
#11
Fyeza Hasan, Kevin Weingarten, Adam Rapoport, Eric Bouffet, Ute Bartels
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010...
February 3, 2018: Journal of Neuro-oncology
https://www.readbyqxmd.com/read/29395891/hemodynamic-support-of-a-15-year-old-waiting-for-a-heart-transplant-is-there-a-role-for-levosimendan-in-pediatric-heart-failure
#12
I Goyer, D Brossier, B Toledano
Decompensated heart failure in children requires rapid and aggressive support. In refractory cases, invasive supportive care is essential to ensure cardiac output. This results in lengthy pediatric intensive care unit (PICU) stays, secondary morbidity, and high cost. Levosimendan may help palliate the pitfalls encountered with the usual treatment. It has been shown to improve hemodynamics and decrease morbidity and mortality from heart failure in adult trials and pediatric cohorts. We report the case of a 15-year-old boy with dilated cardiomyopathy and refractory ventricular dysfunction who was weaned from continuous inotropes and discharged from the PICU with levosimendan while waiting for heart transplantation...
January 26, 2018: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/29393840/palliative-care-professional-s-perceptions-of-barriers-and-challenges-to-accessing-children-s-hospice-and-palliative-care-services-in-south-east-london-a-preliminary-study
#13
Panagiotis Pentaris, Danai Papadatou, Alice Jones, Georgina M Hosang
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. METHODS: Qualitative- five children's palliative care professionals perceptions obtained from semi-structured interviews. RESULTS: Three themes emerged: availability and adequacy of child palliative care (e...
February 2, 2018: Death Studies
https://www.readbyqxmd.com/read/29388714/-i-didn-t-want-to-be-in-charge-and-yet-i-was-bereaved-caregivers-accounts-of-providing-home-care-for-family-members-with-advanced-cancer
#14
Shan Mohammed, Nadia Swami, Ashley Pope, Gary Rodin, Breffni Hannon, Rinat Nissim, Sarah Hales, Camilla Zimmermann
OBJECTIVE: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. METHODS: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving...
February 1, 2018: Psycho-oncology
https://www.readbyqxmd.com/read/29379824/palliative-care-opportunities-for-nursing
#15
EDITORIAL
Ayda Gan Nambayan
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of Alabama at Birmingham, where she taught Adult Health Nursing for 25 years...
January 2018: Asia-Pacific Journal of Oncology Nursing
https://www.readbyqxmd.com/read/29373515/a-review-of-apps-for-calming-relaxation-and-mindfulness-interventions-for-pediatric-palliative-care-patients
#16
Taelyr Weekly, Nicole Walker, Jill Beck, Sean Akers, Meaghann Weaver
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients...
January 26, 2018: Children
https://www.readbyqxmd.com/read/29358429/the-journey-through-care-study-protocol-for-a-longitudinal-qualitative-interview-study-to-investigate-the-healthcare-experiences-and-preferences-of-children-and-young-people-with-life-limiting-and-life-threatening-conditions-and-their-families-in-the-west-midlands
#17
Sarah Mitchell, Anne-Marie Slowther, Jane Coad, Jeremy Dale
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive...
January 21, 2018: BMJ Open
https://www.readbyqxmd.com/read/29356606/predictors-of-specialized-pediatric-palliative-care-involvement-and-impact-on-patterns-of-end-of-life-care-in-children-with-cancer
#18
Kimberley Widger, Rinku Sutradhar, Adam Rapoport, Christina Vadeboncoeur, Shayna Zelcer, Alisha Kassam, Katherine Nelson, Ying Liu, Joanne Wolfe, Craig C Earle, Jason D Pole, Sumit Gupta
Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team...
January 22, 2018: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/29346304/-total-pain-in-children-with-severe-neurological-impairment
#19
REVIEW
Timothy A Warlow, Richard D W Hain
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service...
January 18, 2018: Children
https://www.readbyqxmd.com/read/29333484/approaching-the-third-decade-of-paediatric-palliative-oncology-investigation-historical-progress-and-future-directions
#20
Abby R Rosenberg, Joanne Wolfe
Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent-provider concordance with regards to prognosis, as well as the need for bereavement supports...
September 2017: Lancet Child & Adolescent Health
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