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https://www.readbyqxmd.com/read/28224842/-the-transition-to-palliative-care-is-profoundly-emotional
#1
Jennifer Trueland
In the past 20 years or so, the outlook for children diagnosed with cancer has changed dramatically. New treatments have transformed outcomes and the prognosis is generally positive, particularly for the most common childhood cancer, acute lymphoblastic leukaemia. But that is not true for everyone; some children with cancer will die.
February 22, 2017: Nursing Standard
https://www.readbyqxmd.com/read/28216861/poverty-reduction-in-india-through-palliative-care-a-pilot-project
#2
Cathy Ratcliff, Ann Thyle, Savita Duomai, Manju Manak
INTRODUCTION: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything...
January 2017: Indian Journal of Palliative Care
https://www.readbyqxmd.com/read/28193270/the-experience-of-providing-end-of-life-care-at-a-children-s-hospice-a-qualitative-study
#3
Tracey McConnell, Sam Porter
BACKGROUND: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice. METHODS: Qualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children's hospice offering palliative and specialist care to life-limited children and young people...
February 13, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#4
Jamie Burns, Kevin Jackson, Kathy A Sheehy, Julia C Finkel, Zenaide M Quezado
OBJECTIVE: To evaluate the effect of dexmedetomidine infusions in patients with advanced malignancies, advanced heart disease, or after stem cell transplantation (SCT), who during end-of-life care had pain and/or agitation unresponsive to conventional therapies. BACKGROUND: Pediatric patients with intractable advanced malignancies, end-stage congenital heart diseases, or after SCT can suffer a great deal during end of life. Pain, drowsiness, fatigue, irritability, and worrying are experienced frequently, considered distressing, and are strongly associated with reductions in health-related quality-of-life scores...
February 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28185147/incompatible-with-care-examining-trisomy-18-medical-discourse-and-families-counter-discourse-for-recuperative-ethos
#5
Megan J Thorvilson, Adam J Copeland
Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric...
February 10, 2017: Journal of Medical Humanities
https://www.readbyqxmd.com/read/28160116/family-caregiving-for-persons-with-heart-failure-at-the-intersection-of-heart-failure-and-palliative-care-a-state-of-the-science-review
#6
J Nicholas Dionne-Odom, Stephanie A Hooker, David Bekelman, Deborah Ejem, Gwen McGhan, Lisa Kitko, Anna Strömberg, Rachel Wells, Meka Astin, Zehra Gok Metin, Gisella Mancarella, Salpy V Pamboukian, Lorraine Evangelista, Harleah G Buck, Marie A Bakitas
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers...
February 4, 2017: Heart Failure Reviews
https://www.readbyqxmd.com/read/28156553/are-families-the-barrier-evaluating-attitudes-toward-early-integration-of-palliative-care-in-pediatric-hematopoietic-stem-cell-transplant
#7
Justin N Baker
: 112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28156547/psychological-distress-and-communication-with-children-about-a-parent-s-advanced-cancer-a-mixed-methods-study
#8
Justin M Yopp, Allison Mary Deal, Deborah Mayer, Katherine Elizabeth Reeder-Hayes, Laura C Hanson, Gili Grunfeld, Donald L Rosenstein, Eliza M Park
: 236 Background: Cancer affects 1.6 million parents with dependent children in the United States, many of whom experience heightened distress related to the impact of their illness on children. Palliative medicine and oncology providers frequently recommend open communication with children. However, there is little empirical research on the relationship between illness-related communication with children and parental psychological distress. The objective of this study was to explore the association between parental psychological distress and communication with children about a parent's advanced cancer...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28156531/spirituality-religiosity-spiritual-pain-and-quality-of-life-among-caregivers-of-latin-american-patients-with-advanced-cancer-a-multicenter-study
#9
Alejandra Palma, Eva Rossina Duarte, Monica Grez, Laura Tupper, Diane D Liu, Andrea Octavia Ferguson, Hilda Cantu, Jewel Ochoa, Janet L Williams, Eduardo Bruera
: 245 Background: Caregivers of cancer patients often face physical, and psychosocial hardship. The association between spirituality (S), religiosity (R), spiritual pain (SP), coping, and quality of life (QOL) have not been well characterized. The main purpose of this multicenter study was to determine these associations among LACs. METHODS: We interviewed 319 LACs at palliative care clinics in Chile, Guatemala, and the US. LACs completed FICA (S/R assessment), ESAS-FS, PSWQ (worry), B-COPE/B-R-COPE (coping), and FACIT-Sp (spiritual well-being)...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28156496/influence-of-early-phase-clinical-trial-enrollment-on-patterns-of-end-of-life-care-for-children-with-advanced-cancer
#10
Chalinee Monsereenusorn, Clement Ma, Hasan Al-Sayegh, Joanne Wolfe, Carlos Rodriguez-Galindo
: 151 Background: Early phase clinical trials are critical to enhancing therapies for children with advanced cancer. However, trial enrollment may intensify end-of-life (EOL) care. We evaluated patterns of EOL care for patients at a large cancer center. METHODS: Single-center, retrospective cohort study of pediatric oncology patients, ages 6 months-21 years, who died in 2010-2014. We queried electronic medical records to assess frequencies of medical procedures (e...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28145187/end-of-life-care-for-infants-children-and-young-people-with-life-limiting-conditions
#11
Lynne Pearce
Essential facts According to the Royal College of Paediatrics and Child Health, the UK has one of the worst child mortality rates in western Europe, with more than 2,000 children and young people dying in 2012. In addition, it is estimated that about 50,000 children and young people in the UK have a life-limiting condition that may need palliative care.
February 1, 2017: Nursing Standard
https://www.readbyqxmd.com/read/28144610/pediatric-hepatocellular-carcinoma-challenges-and-solutions
#12
REVIEW
Irene Schmid, Dietrich von Schweinitz
Hepatocellular carcinoma (HCC) is a very rare entity in children, making it nearly impossible to orchestrate Phase II/III studies even as multinational cooperative trials. In contrast to adults, nearly 50% of the children have a response (α-fetoprotein decline and/or tumor shrinkage) to chemotherapeutic agents such as cisplatin and doxorubicin (PLADO), demonstrating that HCC in childhood can be chemotherapy sensitive. As a result, the main treatment options in pediatric HCC focus on systemic drug therapies and resection as the central therapy...
2017: Journal of Hepatocellular Carcinoma
https://www.readbyqxmd.com/read/28137343/identifying-domains-of-quality-of-life-in-children-with-cancer-undergoing-palliative-care-a-qualitative-study-with-professionals
#13
Josianne Avoine-Blondin, Véronique Parent, Magali Lahaye, Nago Humbert, Michel Duval, Serge Sultan
OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers. METHOD: Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montréal, Canada)...
January 31, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28135759/regional-paediatric-palliative-care-model-improves-the-quality-of-life-of-children-on-long-term-ventilation-at-home
#14
F Rusalen, C Agosto, L Brugnaro, F Benini
In the last 20 years, the prevalence of children on domiciliary long-term ventilation (LTV) has increased in many countries and in Italy it is now 4.3/100,000 (1). The complex management of these patients' conditions requires highly specialised expertise that is provided by integrated multi-disciplinary teams and calls for solutions from a number of institutional agencies (2). The global care offered to these patients by paediatric palliative care (PPC) also embraces their social needs (3-4). This article is protected by copyright...
January 30, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28131553/-end-of-life-in-specialized-medical-pediatrics-department-a-french-national-survey
#15
Alice Ravanello, Isabelle Desguerre, Sandra Frache, Philippe Hubert, Daniel Orbach, Régis Aubry
AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments. MATERIAL AND METHODS: This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015...
January 25, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28112748/outcome-after-failure-of-allogeneic-hematopoietic-stem-cell-transplantation-in-children-with-acute-leukemia-a-study-by-the-soci%C3%A3-t%C3%A3-francophone-de-greffe-de-moelle-et-de-th%C3%A3-rapie-cellulaire-sfgm-tc
#16
C Roux, K Tifratene, G Socié, C Galambrun, Y Bertrand, F Rialland, C Jubert, C Pochon, C Paillard, A Sirvent, B Nelken, J P Vannier, C Freycon, Y Beguin, N Raus, I Yakoub-Agha, M Mohty, J-H Dalle, G Michel, C Pradier, R Peffault de Latour, P-S Rohrlich
Allogeneic hematopoietic stem cell transplantation (SCT) contributes to improved outcome in childhood acute leukemia (AL). However, therapeutic options are poorly defined in the case of post-transplantation relapse. We aimed to compare treatment strategies in 334 consecutive children with acute leukemia relapse or progression after SCT in a recent 10-year period. Data could be analyzed in 288 patients (157 ALL, 123 AML and 8 biphenotypic AL) with a median age of 8.16 years at transplantation. The median delay from first SCT to relapse or progression was 182 days...
January 23, 2017: Bone Marrow Transplantation
https://www.readbyqxmd.com/read/28103764/multimodal-pediatric-pain-management-part-2
#17
Stefan J Friedrichsdorf
Dr Stefan Friedrichsdorf speaks to Commissioning Editor Jade Parker: Stefan Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children's Hospitals and Clinics of Minnesota in Minneapolis/St Paul, MN, USA, home to one of the largest and most comprehensive programs of its kind in the country. The pain and palliative care program is devoted to control acute, chronic/complex and procedural pain for inpatients and outpatients in close collaboration with all pediatric subspecialties at Children's Minnesota...
January 20, 2017: Pain Management
https://www.readbyqxmd.com/read/28103457/-congenital-heart-disease-in-children-with-down-syndrome-what-has-changed-in-the-last-three-decades
#18
Filipa Mestre Dias, Susana Cordeiro, Isabel Menezes, Graça Nogueira, Ana Teixeira, Marta Marques, Miguel Abecasis, Rui Anjos
INTRODUCTION: The prevalence of Down syndrome has increased in the last 30 years; 55% of these children have congenital heart disease. MATERIAL AND METHODS: A retrospective longitudinal cohort study; clinical data from 1982 to 2013 databases with the diagnosis of Down syndrome or trisomy 21 in a reference hospital in pediatric cardiology and cardiac surgery. OBJECTIVE: to assess the progress in the last three decades of cardiological care given to children with Down syndrome and congenital heart disease...
October 2016: Acta Médica Portuguesa
https://www.readbyqxmd.com/read/28078429/aims-and-tasks-in-parental-caregiving-for-children-receiving-palliative-care-at-home-a-qualitative-study
#19
Lisa M Verberne, Marijke C Kars, Antoinette Y N Schouten-van Meeteren, Diederik K Bosman, Derk A Colenbrander, Martha A Grootenhuis, Johannes J M van Delden
: In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed...
January 11, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28070671/place-of-death-of-children-with-complex-chronic-conditions-cross-national-study-of-11-countries
#20
Cecilia Håkanson, Joakim Öhlén, Ulrika Kreicbergs, Marylou Cardenas-Turanzas, Donna M Wilson, Martin Loucka, Sandra Frache, Lucia Giovannetti, Wayne Naylor, YongJoo Rhee, Miguel Ruiz Ramos, Joan Teno, Kim Beernaert, Luc Deliens, Dirk Houttekier, Joachim Cohen
: Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries...
January 9, 2017: European Journal of Pediatrics
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