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palliative care children

Stephen R Connor, Julia Downing, Joan Marston
CONTEXT: The need for children's palliative care (CPC) globally is unknown. In order to understand the scope of the need and to advocate to meet it, more accurate estimates are needed. OBJECTIVES: To create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups. METHODS: This work builds on previously published methods developed by the International Children's Palliative Care Network, UNICEF, and WHO and tested in three African countries...
October 17, 2016: Journal of Pain and Symptom Management
Betty Ferrell, Elaine Wittenberg, Vanessa Battista, Gay Walker
OBJECTIVE: The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area. BACKGROUND: Although spiritual care is essential in pediatric palliative care, few providers receive training about communication with ill children about spirituality. METHODS: Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions...
October 18, 2016: Journal of Palliative Medicine
Liz Jamieson, Ian C K Wong, Finella Craig, Nanna Christiansen, Karen Brombley, Catherine Tuleu, Emily Harrop
OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo...
October 13, 2016: Journal of Pharmacy and Pharmacology
Eva Elizabeth Bolt, Eva Quirien Flens, H Roeline Willemijn Pasman, Dick Willems, Bregje Dorien Onwuteaka-Philipsen
AIM: Paediatricians caring for severely ill children may receive requests for physician-assisted dying (PAD). Dutch euthanasia law only applies to patients over 12 who make well-considered requests. These limitations have been widely debated, but little is known about paediatricians' positions on PAD. We explored the situations in which paediatricians found PAD conceivable and described the roles of the patient and parents, the patient's age and their life expectancy. METHODS: We sent a questionnaire to a national sample of 276 Dutch paediatricians and carried out semi-structured interviews with eight paediatricians...
October 11, 2016: Acta Paediatrica
Christopher E Greenleaf, J Miguel Urencio, Jorge D Salazar, Ali Dodge-Khatami
Since the first successful intervention for hypoplastic left heart syndrome (HLHS) was undertaken by Norwood in 1983, there have been many advancements in the pre-, intra-, and postoperative care of these children for a diagnosis that just 25 years ago was almost certainly a fatal one. This paper aims to describe the most recent trends and perspectives on the treatment of HLHS. In particular, we will discuss the five current options for HLHS, including Norwood stage I as the beginning to 3-stage palliation, transplant, true hybrid, hybrid-bridge-to-Norwood, and compassionate care...
July 2016: Translational pediatrics
Lisa C Lindley
BACKGROUND: California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening, serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. OBJECTIVES: To examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. RESEARCH DESIGN: Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i...
September 29, 2016: Journal of Pain and Symptom Management
Kaci Osenga, Andrea Postier, Jill Dreyfus, Laurie Foster, Wrenda Teeple, Stefan J Friedrichsdorf
CONTEXT: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, though little is known about palliative care specialist involvement. OBJECTIVES: The objective of this study was to compare circumstances prior to death in children who spent their last days of life in an inpatient pediatric hospital setting, with or without PPC provider involvement during their inpatient stay. METHODS: Retrospective chart review of medical records of children for the last inpatient stay that resulted in death at a children's hospital setting between January 2012 through June 2013...
September 29, 2016: Journal of Pain and Symptom Management
Stuart Jarvis, Roger C Parslow, Pat Carragher, Bryony Beresford, Lorna K Fraser
OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collected healthcare data. SETTING: Scotland. PATIENTS: 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. MAIN OUTCOME: Clinical stage based on emergency inpatient and intensive care unit admissions and date of death...
September 28, 2016: Archives of Disease in Childhood
Emma Beecham, Linda Oostendorp, Joanna Crocker, Paula Kelly, Andrew Dinsdale, June Hemsley, Jessica Russell, Louise Jones, Myra Bluebond-Langner
BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP. METHODS: Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died...
September 26, 2016: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
Lisa C Lindley, Laura V Trujillo
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i...
September 20, 2016: Hispanic Health Care International: the Official Journal of the National Association of Hispanic Nurses
(no author information available yet)
There is a paucity of studies about nurses' personal experiences of grief, however in Learning Disability Practice, Paul Keenan and Ciara Mac Dermott explore the personal grief of nurses who care for the palliative needs of children with a learning disability. The authors argue that organisations must acknowledge that nurses should be allowed the opportunity to attend funerals for children who die in their care. While the study is small-scale, the research study highlights the need for education and support for nurses in the learning disability sector who care for children and families before and after a child's death...
August 24, 2016: Nursing Standard
(no author information available yet)
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
September 12, 2016: Nursing Children and Young People
J Downing, R Kiman, S Boucher, B Nkosi, B Steel, C Marston, E Lascar, J Marston
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care...
2016: Ecancermedicalscience
Pia Riis Olsen, Rosalía Lorenzo
This chapter takes its point of departure in psychosocial aspects of supportive care in adolescent and young adult cancer care. The purpose is to describe some of the challenges that these young people face following a cancer diagnosis and guide healthcare professionals in how to provide care that improves the quality of life. In most hospitals and healthcare systems, adolescents and young adults are cared for and treated in settings for children or adults. Accordingly, healthcare professionals may lack attention to and knowledge about what characterize young peoples' life situation, their special needs and how to meet them...
2016: Progress in Tumor Research
Frank Edwin, Kow Entsua-Mensah, Lawrence A Sereboe, Mark M Tettey, Ernest A Aniteye, Martin M Tamatey, Innocent Adzamli, Nana Akyaa-Yao, Kofi B Gyan, Ernest Ofosu-Appiah, David Kotei
BACKGROUND: The outcome of children born with conotruncal heart defects may serve as an indication of the status of pediatric cardiac care in sub-Saharan Africa (SSA). This study was undertaken to determine the outcome of children born with conotruncal anomalies in SSA, regarding access to treatment and outcomes of surgical intervention. METHODS: From our institution in Ghana, we retrospectively analyzed the outcomes of surgery, in the two-year period from June 2013 to May 2015...
September 2016: World Journal for Pediatric & Congenital Heart Surgery
Konrad Paczkowski, Ireneusz Haponiuk, Maciej Chojnicki, Grażyna Brzezińska-Rajszys
An iatrogenic aneurysm of an innominate artery is an extremely rare complication, especially in children. Nevertheless, this pathology was diagnosed in a child given palliative care with chronic respiratory insufficiency and a history of encephalitis requiring permanent ventilation at home via a tracheal tube.A nine-year-old girl with colitis ulcerosa and a history of hemorrhagic encephalitis, with chronic home ventilation therapy, was admitted in an emergency setting because of massive bleeding from the upper respiratory tract and the area surrounding the tracheotomy...
2016: Heart Surgery Forum
Kathleen G Davis
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community...
October 2016: Pediatric Clinics of North America
Thembelihle Khumalo, Valerie Maasdorp
There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals...
2016: Ecancermedicalscience
Anuja Damani, Naveen Salins, Arunangshu Ghoshal, MaryAnn Muckaden
INTRODUCTION: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. METHODS: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014) to evaluate prescribing practices in children with advanced cancer...
July 2016: Indian Journal of Palliative Care
Ashish Gulia, Suman Byregowda, Pankaj Kumar Panda
Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way...
July 2016: Indian Journal of Palliative Care
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