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https://www.readbyqxmd.com/read/28342432/-ethical-dilemmas-in-practice-of-medicine-child
#1
Justo Ruiz López, Javier Navarro Zaragoza, Francisco Carrillo Navarro, Aurelio Luna Maldonado
After reviewing the existing bibliography in the last 20 years, we concluded that there is a lack of information regarding the ethical conflicts that affect to pediatrics in their daily practice. It produces certain degree of uncertainty in these professionals at the time of solving these problems. We made a systematic search in the main data bases, finding more than 150 articles related, of which 80 were considered outstanding. After studying them, we have found 40 ethical dilemmas, related to some principle of solution and that we described in this article...
January 2017: Cuadernos de Bioética: Revista Oficial de la Asociación Española de Bioética y Ética Médica
https://www.readbyqxmd.com/read/28329430/maintaining-family-life-balance-while-facing-a-child-s-imminent-death-a-mixed-methods-study
#2
Katri Eskola, Eva Bergstraesser, Karin Zimmermann, Eva Cignacco
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012...
March 22, 2017: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/28278329/patients-and-parents-needs-attitudes-and-perceptions-about-early-palliative-care-integration-in-pediatric-oncology
#3
Deena R Levine, Belinda N Mandrell, April Sykes, Michele Pritchard, Deborah Gibson, Heather J Symons, David Wendler, Justin N Baker
Importance: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. Objective: To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs...
March 9, 2017: JAMA Oncology
https://www.readbyqxmd.com/read/28273758/aspects-and-intensity-of-pediatric-palliative-case-management-provided-by-a-hospital-based-case-management-team
#4
Charissa T Jagt-van Kampen, Derk A Colenbrander, Diederik K Bosman, Martha A Grootenhuis, Marijke C Kars, Antoinette Yn Schouten-van Meeteren
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28262296/duration-of-mechanical-ventilation-and-perioperative-care-quality-after-neonatal-cardiac-operations
#5
Joshua J Blinder, Ravi Thiagarajan, Kathryn Williams, Meena Nathan, John Mayer, Thomas J Kulik
BACKGROUND: This study was conducted to determine whether the duration of mechanical ventilation (DOMV) could be used to benchmark the overall quality of care after neonatal congenital heart operations. METHODS: Children aged younger than 30 days undergoing cardiac operations were reviewed. Technical adequacy was assessed using the Technical Performance Score (TPS), a previously validated tool for determining the adequacy of a palliative or corrective surgical procedure that uses echocardiography criteria and need for unplanned reintervention to determine technical adequacy...
March 2, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28260997/children-with-intellectual-disability-and-hospice-utilization
#6
Lisa C Lindley, Mari Beth Colman, John T Meadows
Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization...
February 2017: Journal of Hospice and Palliative Nursing: JHPN
https://www.readbyqxmd.com/read/28255137/clinical-spectrum-of-children-receiving-palliative-care-in-malaysian-hospitals
#7
L A Chong, F Khalid, T B Khoo, S H Teh, G L Kuan, A M Aina Mariana, E Alias, C H Chieng, H Razali, G B Ong, S H Zainah, I N C Shukor, J J Wong
INTRODUCTION: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. METHODS: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out...
February 2017: Medical Journal of Malaysia
https://www.readbyqxmd.com/read/28245162/prioritisation-of-future-research-topics-in-paediatric-palliative-care-in-ireland-a-delphi-study
#8
Claire Quinn, Sandra McCarthy, Mary Devins, Maeve O'Reilly, Marie Twomey, Julie Ling
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies...
February 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28238454/moving-toward-a-shared-process-the-impact-of-parent-experiences-on-perinatal-palliative-care
#9
Susan L Hasegawa, Jessica T Fry
Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born children receive, especially regarding factors influencing individual choices and knowledge of the medical community. We describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support...
February 23, 2017: Seminars in Perinatology
https://www.readbyqxmd.com/read/28237697/heart-transplantation-in-adults-with-congenital-heart-disease
#10
REVIEW
Lucile Houyel, Ngoc-Tram To-Dumortier, Yannick Lepers, Jérôme Petit, Régine Roussin, Mohamed Ly, Emmanuel Lebret, Elie Fadel, Jürgen Hörer, Sébastien Hascoët
With the advances in congenital cardiac surgery and postoperative care, an increasing number of children with complex congenital heart disease now reach adulthood. There are already more adults than children living with a congenital heart defect, including patients with complex congenital heart defects. Among these adults with congenital heart disease, a significant number will develop ventricular dysfunction over time. Heart failure accounts for 26-42% of deaths in adults with congenital heart defects. Heart transplantation, or heart-lung transplantation in Eisenmenger syndrome, then becomes the ultimate therapeutic possibility for these patients...
February 22, 2017: Archives of Cardiovascular Diseases
https://www.readbyqxmd.com/read/28224842/-the-transition-to-palliative-care-is-profoundly-emotional
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting...
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
#18
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
#19
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
#20
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.g. intubations), clinic visits, and hospital admissions in the last 6 months of life...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
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