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palliative care children

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https://www.readbyqxmd.com/read/28808789/palliative-care-for-children-with-a-yet-undiagnosed-syndrome
#1
Jessica I Hoell, Jens Warfsmann, Gabriele Gagnon, Laura Trocan, Stefan Balzer, Prasad T Oommen, Arndt Borkhardt, Gisela Janßen, Michaela Kuhlen
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7...
August 14, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28807704/palliative-care-albania
#2
Rudina Rama, Valbona Mane-Carcani, Fatmir Prifti, Kristo Huta, Ali Xhixha, Stephen R Connor
Sixty-percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania, due to a close partnership with the Ministry of Health, local non-profit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28807702/factors-associated-with-use-of-u-s-community-based-palliative-care-for-children-with-life-limiting-or-life-threatening-illnesses-and-their-families-an-integrative-review
#3
REVIEW
Jackelyn Y Boyden, Martha A Q Curley, Janet A Deatrick, Mary Ersek
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28804708/pediatric-palliative-care-initiative-in-cambodia
#4
Mahmut Yaşar Çeliker, Yos Pagnarith, Kazumi Akao, Dim Sophearin, Sokchea Sorn
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia...
2017: Frontiers in Public Health
https://www.readbyqxmd.com/read/28801003/who-public-health-model-a-roadmap-for-palliative-care-development
#5
Mary V Callaway, Stephen R Connor, Kathleen M Foley
The Open Society Foundation's International Palliative Care Initiative (IPCI) began to support palliative care development in Central and Eastern Europe and the Former Soviet Union in 1999. Twenty-eight country representatives were invited to discuss the need for palliative care in their countries and to identify key areas that should be addressed to improve the care of adults and children with life-limiting illnesses. As a public health concern, progress in palliative care requires integration into health policy, education and training of health care professionals, availability of essential pain relieving medications, and health care services...
August 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28801002/legal-support-for-palliative-care-patients
#6
Tamar Ezer, Naomi Burke-Shyne, Kiera Hepford
CONTEXT: Palliative care patients face legal issues which impact their quality of life. Legal support, embedded in holistic palliative care services, has developed globally over the last decade to address this. OBJECTIVES: This paper aims to trace the origins of legal support for palliative care patients, detail models of legal support, and describe achievements and challenges. METHODS: The paper draws on years of work in this area, as well as the available literature...
August 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28800998/international-children-s-palliative-care-network-a-global-action-network-for-children-with-life-limiting-conditions
#7
Joan Marston, Sue Boucher, Julia Downing
The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organisations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership...
August 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28800997/palliative-care-and-human-rights-a-decade-of-evolution-in-standards
#8
Tamar Ezer, Diederik Lohman, Gabriela B de Luca
CONTEXT: Human rights standards to address palliative care have developed over the last decade. OBJECTIVES: This paper aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth. METHODS: The paper provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children...
August 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28797851/palliative-care-development-in-georgia
#9
Nina Kiknadze, Pati Dzotsenidze
Georgia has established the foundational measures for a national palliative care program-policy, education, drug availability, and implementation. Amendments to legislation needed to develop palliative care have been approved. Palliative care has been recognized as a subspecialty in oncology, critical care, internal medicine and surgery. The National Plan for Palliative Care for 2011-2016 was approved. Opioids, especially oral morphine, are available on a limited basis for patients at home but oral morphine is not available for patients in the hospital...
August 7, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28797849/the-international-association-for-hospice-and-palliative-care-iahpc-advancing-hospice-and-palliative-care-worldwide
#10
Liliana De Lima, Lukas Radbruch
The International Association for Hospice and Palliative Care (IAHPC) is a membership based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of healthcare systems in a continuum of care with disease prevention, early diagnosis and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible...
August 7, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28777677/my-kite-will-fly-improving-communication-and-understanding-in-young-children-when-a-mother-is-diagnosed-with-life-threatening-gynecological-cancer
#11
Cynthia Holland, Alison Hocking, Lynette Joubert, Fiona McDermott, Marcus D Niski, Frances Thomson Salo, Michael A Quinn
STUDY AIMS: The My Kite Will Fly (MKWF) research program is built on the well-documented need for effective clinical communication tools and therapeutic interventions where a child's mother is diagnosed with life-threatening gynecological cancer. METHODS: The Dignity Model and Child-Centered approach were two key study foundations in this pilot cohort. Quantitative survey and qualitative semistructured methods were employed to gather data from patient families at three distinct phases: Diagnosis, Treatment, and Palliative care...
August 4, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28771913/influence-of-early-phase-clinical-trial-enrollment-on-patterns-of-end-of-life-care-for-children-with-advanced-cancer
#12
Prasanna Ananth, Chalinee Monsereenusorn, Clement Ma, Hasan Al-Sayegh, Joanne Wolfe, Carlos Rodriguez-Galindo
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16-84] vs...
August 3, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/28763047/trending-longitudinal-agreement-between-parent-and-child-perceptions-of-quality-of-life-for-pediatric-palliative-care-patients
#13
Meaghann S Weaver, Cheryl Darnall, Sue Bace, Catherine Vail, Andrew MacFadyen, Christopher Wichman
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child...
August 1, 2017: Children
https://www.readbyqxmd.com/read/28759277/the-experience-of-decision-making-in-the-care-of-children-with-palliative-care-needs-the-experiences-of-jordanian-mothers
#14
Maha Atout, Pippa Hemingway, Jane Seymour
The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children...
July 31, 2017: Compr Child Adolesc Nurs
https://www.readbyqxmd.com/read/28743187/severely-affected-by-parkinson-disease-the-patient-s-view-and-implications-for-palliative-care
#15
Julia Strupp, Anne Kunde, Maren Galushko, Raymond Voltz, Heidrun Golla
INTRODUCTION: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. METHODS: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28728768/maintaining-integrity-how-nurses-navigate-boundaries-in-pediatric-palliative-care
#16
Alyssa Erikson, Betty Davies
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families. DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide. RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally...
July 2017: Journal of Pediatric Nursing
https://www.readbyqxmd.com/read/28727242/examining-trust-in-health-professionals-among-family-caregivers-of-nursing-home-residents-with-advanced-dementia
#17
Jannie A Boogaard, Perla Werner, Anna Zisberg, Jenny T van der Steen
AIM: In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden...
July 20, 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/28711963/transfer-of-neonates-with-critical-congenital-heart-disease-within-a-regionalized-network
#18
Michael F Swartz, Jill M Cholette, Jennifer M Orie, Marshall L Jacobs, Jeffrey P Jacobs, George M Alfieris
Regionalization of pediatric cardiac surgical care varies between and within states. In most geographic regions, at least some neonates with critical heart disease are transferred from their birth hospital to a different hospital for surgery. The impact of neonatal transfer for surgery, particularly over a considerable distance (>10 miles), has been largely unexplored. We sought to examine the impact of transferring neonates for cardiac surgery. We queried the New York State Cardiac Surgery database (2005-2014) from a single institution to identify neonates born within the cardiac surgery center and those transferred for surgery...
July 15, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28705790/children-with-life-limiting-conditions-in-paediatric-intensive-care-units-a-national-cohort-data-linkage-study
#19
Lorna K Fraser, Roger Parslow
OBJECTIVE: To determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes. DESIGN: National cohort, data-linkage study. SETTING: PICUs in England. PATIENTS: Children admitted to a UK PICU (1 January 2004 and 31 March 2015) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to hospital episodes statistics enabled identification of children with a LLC using an International Classification of Diseases (ICD10) code list...
July 13, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28687558/seizure-management-in-children-requiring-palliative-care-a-review-of-current-practice
#20
Nicola Harris, Megumi Baba, Charlotte Mellor, Rebekah Rogers, Kirsty Taylor, Antonia Beringer, Peta Sharples
OBJECTIVES: Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice. We compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM). METHODS: Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a 10-year period (2006-2015) in the south-west region of England...
July 7, 2017: BMJ Supportive & Palliative Care
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