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https://www.readbyqxmd.com/read/28982637/pediatric-chronic-patients-at-outpatient-clinics-a-study-in-a-latin-american-university-hospital
#1
Renata A Alveno, Caroline V Miranda, Caroline G Passone, Aurora R Waetge, Elza S Hojo, Sylvia C L Farhat, Vicente Odone-Filho, Uenis Tannuri, Werther B Carvalho, Magda Carneiro-Sampaio, Clovis A Silva
OBJECTIVE: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. METHODS: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years)...
October 2, 2017: Jornal de Pediatria
https://www.readbyqxmd.com/read/28977325/analysis-of-death-and-palliative-care-in-a-neonatal-intensive-care-unit
#2
Ligia Marçola, Silvia Maria Macedo de Barbosa, Ivete Zoboli, Rita Tiziana Verardo Polastrini, Maria Esther Jurfest Ceccon
OBJECTIVE: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. METHODS: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. RESULTS: During the study period, 49 children died after at least 48 hours from the time of admission...
April 2017: Revista Paulista de Pediatria: Orgão Oficial da Sociedade de Pediatria de São Paulo
https://www.readbyqxmd.com/read/28975473/why-are-there-so-few-ethics-consults-in-children-s-hospitals
#3
Brian Carter, Manuel Brockman, Jeremy Garrett, Angie Knackstedt, John Lantos
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas...
October 3, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28963638/widening-access-developing-an-elearning-resource-for-health-and-social-care-professionals-caring-for-children-and-young-people-with-cancer
#4
Wendy McInally, Maria J Pouso Lista, Natalia McLaren, Diane S Willis
Cancer is a key priority worldwide, and caring for children and young people with cancer requires a range of specific knowledge, skills and experience in order to deliver the complex care regimes both within the hospital or community environment. The aim of this paper is to disseminate work undertaken to design and develop pedagogical practice and innovation through an eLearning resource for health care professionals caring for children and young people with cancer across the globe. The work undertaken evaluated an existing cancer course (which has been withdrawn) that was developed and delivered through the Paediatric Oncology Nurses Forum, Royal College Nursing (Nurse Educators) and Warwick University...
September 29, 2017: Journal of Cancer Education: the Official Journal of the American Association for Cancer Education
https://www.readbyqxmd.com/read/28956672/proxy-reported-quality-of-life-and-family-impact-for-children-followed-longitudinally-by-a-pediatric-palliative-care-team
#5
Meaghann Weaver, Christopher Wichman, Cheryl Darnall, Sue Bace, Catherine Vail, Andrew MacFadyen
BACKGROUND: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. OBJECTIVE: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. DESIGN: This prospective quality-of-life study included administration of a 23-item PedsQL™ Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12...
September 28, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28949870/decision-making-in-pediatric-oncology-views-of-parents-and-physicians-in-two-european-countries
#6
Domnita O Badarau, Katharina Ruhe, Thomas Kühne, Eva De Clercq, Anca Colita, Bernice S Elger, Tenzin Wangmo
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options. METHODS: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania. RESULTS: Thematic analysis of interviews conducted with parents and oncologists identified decision making as a heterogeneous process in both countries...
January 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28944533/parents-spend-an-average-of-nine-hours-a-day-providing-palliative-care-for-children-at-home-and-need-to-maintain-an-average-of-five-life-saving-devices
#7
P Lazzarin, B Schiavon, L Brugnaro, F Benini
AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. RESULTS: The children had a mean age of 6...
September 25, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28941298/symptom-management-and-psychological-support-for-families-are-the-cornerstones-of-end-of-life-care-for-children-with-spinal-muscular-atrophy-type-1
#8
Chiara Di Pede, Caterina Agosto, Valentina De Tommasi, Alessandra De Gregorio, Franca Benini
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17 children (13 boys) who attended the University of Padua's paediatric palliative care centre in Italy from March 2000 to March 2015. All the children received supportive care without proactive respiratory intervention to prolong survival...
September 23, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28937333/provider-prioritized-domains-of-quality-in-pediatric-home-based-hospice-and-palliative-care-a-study-of-the-ohio-pediatric-palliative-care-and-end-of-life-network
#9
Rachel Thienprayoon, Melissa San Julian Mark, Daniel Grossoehme
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC)...
September 22, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28915078/pediatric-specific-end-of-life-care-quality-measures-an-unmet-need-of-a-vulnerable-population
#10
Emily E Johnston, Abby R Rosenberg, Arif H Kamal
We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services...
October 2017: Journal of Oncology Practice
https://www.readbyqxmd.com/read/28914735/palliative-care-in-neuromuscular-diseases
#11
Marianne de Visser, David J Oliver
PURPOSE OF REVIEW: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating physical disabilities. Most NMDs are not amenable to curative treatment and would thus qualify for palliative care. Amyotrophic lateral sclerosis is a relentlessly progressive disease, which leads to death about 2 years after onset due to respiratory muscle weakness...
September 13, 2017: Current Opinion in Neurology
https://www.readbyqxmd.com/read/28887267/patterns-and-outcomes-of-care-in-children-with-advanced-heart-disease-receiving-palliative-care-consultation
#12
Katherine L Marcus, Emily M Balkin, Hasan Al-Sayegh, Elyssa Guslits, Elizabeth D Blume, Clement Ma, Joanne Wolfe
CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease...
September 5, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28870391/determinants-of-adverse-outcomes-after-systemic-to-pulmonary-shunts-in-biventricular-circulation
#13
Ben Hobbes, Yves d'Udekem, Diana Zannino, Igor E Konstantinov, Christian Brizard, Johann Brink
BACKGROUND: Systemic-to-pulmonary shunts are useful palliative procedures, although many teams have been deterred by high mortality and morbidity. We aimed to identify predictors of adverse outcomes after shunts in biventricular lesions. METHODS: From 2004 to 2014, 173 children had shunt procedures. Morphologies included: tetralogy of Fallot, pulmonary atresia with ventricular septal defect (VSD) with and without major aortopulmonary collaterals (MAPCAs), transposition of great arteries with pulmonary stenosis, and double outlet right ventricle...
October 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28866891/integration-of-hypnosis-into-pediatric-palliative-care
#14
Stefan J Friedrichsdorf, Daniel P Kohen
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities...
June 27, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28854053/independent-non-medical-prescribing-in-children-s-hospices-in-the-uk-a-practice-snapshot
#15
Michael J Tatterton
BACKGROUND: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. AIM: To identify the context of non-medical prescribing in children's hospices in the UK, focusing on the perceived benefits and challenges. METHOD: Internet-based questionnaires were sent to 55 UK children's hospices, exploring the practice and context of prescribing. RESULTS: Of the 55 invited, 20 children's hospices responded to the questionnaire, 14 of which employed a total of 39 non-medical prescribers (NMPs)...
August 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28853208/clinical-outcomes-and-toxicity-following-palliative-radiotherapy-for-childhood-cancers
#16
Kimberley S Mak, Stephanie W Lee, Tracy A Balboni, Karen J Marcus
BACKGROUND: Few reports of palliative radiotherapy (RT) for pedialltric malignancies have been published. We described clinical indications, outcomes, and toxicities for children who received palliative RT. PROCEDURE: Pediatric patients (age ≤18 years) treated with palliative RT for incurable cancer from January 1 2008 to February 26, 2014 were included. Diagnosis, details of RT, treatment response, toxicity, and survival were retrospectively reviewed. RESULTS: Forty-six patients received 76 RT courses...
August 29, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/28844985/pediatric-advance-care-planning-pacp-for-teens-with-cancer-and-their-families-design-of-a-dyadic-longitudinal-rcct
#17
Katherine B Curtin, Anne E Watson, Jichuan Wang, Obianuju C Okonkwo, Maureen E Lyon
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC)...
November 2017: Contemporary Clinical Trials
https://www.readbyqxmd.com/read/28836319/paediatric-palliative-care-and-intellectual-disability-a-unique-context
#18
Jacqueline K Duc, Anthony Robert Herbert, Helen S Heussler
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions...
November 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28835736/health-care-professionals-experiences-and-needs-when-delivering-end-of-life-care-to-children-a-qualitative-study
#19
Eva Bergsträsser, Eva Cignacco, Patricia Luck
Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations...
2017: Palliative Care
https://www.readbyqxmd.com/read/28832800/modified-hybrid-procedure-in-hypoplastic-left-heart-syndrome-initial-experience-of-a-center-in-northeastern-brazil
#20
Renato Max Faria, Juliana Torres Pacheco, Itamar Ribeiro de Oliveira, José Madson Vidal, Anilton Bezerra Rodrigues, Ana Luiza Lafeta Costa, Vinicius José da Silva Nina, Marcelo Matos Cascudo
Introduction: Although it only corresponds to 2.5% of congenital heart defects, hypoplastic left heart syndrome (HLHS) is responsible for more than 25% of cardiac deaths in the first week of life. Palliative surgery performed after the second week of life is considered an important risk factor in the treatment of HLHS. Objective: The aim of this study is to describe the initial experience of a medical center in Northeastern Brazil with a modified off-pump hybrid approach for palliation of HLHS...
May 2017: Brazilian Journal of Cardiovascular Surgery
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