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https://www.readbyqxmd.com/read/28728768/maintaining-integrity-how-nurses-navigate-boundaries-in-pediatric-palliative-care
#1
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
#2
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
#3
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
#4
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
#5
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
https://www.readbyqxmd.com/read/28668217/-non-invasive-ventilation-and-pediatric-palliative-care-a-french-survey
#6
B Ringuier, F Troussier, G Boussicault, C Chapotte, P Rachieru
OBJECTIVES: The benefits of non-invasive ventilation (NIV) have been clearly demonstrated in pediatrics. In palliative care, NIV can improve the level of comfort and quality of life and can decrease dyspnea. The objective was to survey pediatricians' opinions and practices regarding NIV in palliative care in France. DESIGN: A mail survey was conducted among pediatric pneumologists, intensivists and palliative medicine consultants from February 2015 to March 2015...
June 28, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28665209/speech-language-pathology-in-paediatric-palliative-care-a-scoping-review-of-role-and-practice
#7
Lillian Krikheli, Bernice A Mathisen, Lindsay B Carey
PURPOSE: Attempts have been made within the literature to clarify the role and scope of speech-language pathologists (SLPs) within paediatric palliative care (PPC). As SLP literature regarding adult/geriatric populations is gaining traction, it is fitting to investigate the role of SLPs in the management of infants and children in end-of-life care. METHOD: Arksey and O'Malley's ( 2005 ) scoping review method was utilised for searching multiple databases. Two database searches were undertaken...
June 30, 2017: International Journal of Speech-language Pathology
https://www.readbyqxmd.com/read/28664445/pediatric-cardiology-provider-attitudes-about-palliative-care-a-multicenter-survey-study
#8
Emily Morell Balkin, James N Kirkpatrick, Beth Kaufman, Keith M Swetz, Lynn A Sleeper, Joanne Wolfe, Elizabeth D Blume
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%)...
June 29, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28659021/parental-experiences-with-a-paediatric-palliative-care-team-a-qualitative-study
#9
Lisa M Verberne, Antoinette Yn Schouten-van Meeteren, Diederik K Bosman, Derk A Colenbrander, Charissa T Jagt, Martha A Grootenhuis, Johannes Jm van Delden, Marijke C Kars
BACKGROUND: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. AIM: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective...
February 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28632194/a-mind-body-approach-to-pediatric-pain-management
#10
REVIEW
Melanie L Brown, Enrique Rojas, Suzanne Gouda
Pain is a significant public health problem that affects all populations and has significant financial, physical and psychological impact. Opioid medications, once the mainstay of pain therapy across the spectrum, can be associated with significant morbidity and mortality. Centers for Disease and Control (CDC) guidelines recommend that non-opioid pain medications are preferred for chronic pain outside of certain indications (cancer, palliative and end of life care). Mindfulness, hypnosis, acupuncture and yoga are four examples of mind-body techniques that are often used in the adult population for pain and symptom management...
June 20, 2017: Children
https://www.readbyqxmd.com/read/28631529/use-of-buccal-morphine-in-the-management-of-pain-in-children-with-life-limiting-conditions-results-of-a-laboratory-study
#11
Renée McCulloch, Mohammed Sattar, Ellen M Henderson, Majella E Lane, Myra Bluebond-Langner
BACKGROUND: Children and infants with impaired swallow or compromised enteral absorption require alternative routes for administration of analgesia. Recent clinical guidance and practice for paediatric palliative care teams, who often treat such children, supports buccal morphine sulphate as a fast acting, effective and easily administered agent for pain relief. However, a consideration of the physicochemical properties and potency of morphine would suggest that it is not a suitable candidate for delivery via the transmucosal route, raising questions about its use in children and infants...
June 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28627303/the-surprise-question-in-paediatric-palliative-care-a-prospective-cohort-study
#12
Kimberley Burke, Lucy Helen Coombes, Antoinette Menezes, Anna-Karenia Anderson
BACKGROUND: The question 'would you be surprised if this patient died in the next 12-months' is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children. AIM: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period. DESIGN: A prospective cohort study...
June 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28623936/safety-and-potential-efficacy-of-gemfibrozil-as-a-supportive-treatment-for-children-with-late-infantile-neuronal-ceroid-lipofuscinosis-and-other-lipid-storage-disorders
#13
REVIEW
Kyeongsoon Kim, Hynda K Kleinman, Hahn-Jun Lee, Kalipada Pahan
Neuronal Ceroid Lipofuscinosis (NCL), also known as Batten disease, is a group of genetically distinct lysosomal disorders that mainly affect the central nervous system, resulting in progressive motor and cognitive decline primarily in children. Multiple distinct genes involved in the metabolism of lipids have been identified to date with various mutations in this family of diseases. There is no cure for these diseases but some new therapeutic approaches have been tested that offer more hope than the standard palliative care...
June 17, 2017: Orphanet Journal of Rare Diseases
https://www.readbyqxmd.com/read/28604196/many-people-still-fear-child-illness
#14
(no author information available yet)
One in four people show a 'worrying' lack of understanding about children's hospices and palliative care, a survey shows.
June 12, 2017: Nursing Children and Young People
https://www.readbyqxmd.com/read/28602938/-let-s-bring-her-home-first-patient-characteristics-and-place-of-death-in-specialized-pediatric-palliative-home-care
#15
Hans Ulrich Bender, Martin Bernhard Riester, Gian Domenico Borasio, Monika Führer
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death...
June 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28602119/improving-the-quality-of-end-of-life-care-in-pediatric-oncology-patients-through-the-early-implementation-of-palliative-care
#16
Lauren Ranallo
Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child's death...
June 1, 2017: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
https://www.readbyqxmd.com/read/28595435/a-fetal-diagnostic-center-s-referral-rate-for-perinatal-palliative-care
#17
Krishelle L Marc-Aurele, Andrew D Hull, Marilyn C Jones, Dolores H Pretorius
BACKGROUND: Fetal specialists support standardizing the practice of offering women palliative care for life limiting fetal diagnoses. However, there is little data available regarding what fetal specialists do in practice. Since 2003, our center has kept a database of all women referred for fetal complications. METHODS: Retrospective electronic chart review of pregnant women between 2006 and 2012 using UCSD's Fetal Care and Genetics Center referral database. Objectives were to determine: (I) how many high risk pregnancies referred to the University of California San Diego Medical Center (UCSD) over a 6-year period have potentially life limiting fetal diagnoses; (II) pregnancy outcome; and (III) referral rate to perinatal palliative care...
May 4, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28595025/the-validity-of-using-health-administrative-data-to-identify-the-involvement-of-specialized-pediatric-palliative-care-teams-in-children-with-cancer-in-ontario-canada
#18
Kimberley Widger, Christina Vadeboncoeur, Shayna Zelcer, Ying Liu, Alisha Kassam, Rinku Sutradhar, Adam Rapoport, Katherine Nelson, Joanne Wolfe, Craig Earle, Jason D Pole, Sumit Gupta
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database...
June 8, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28586256/pediatric-palliative-care-a-five-year-retrospective-chart-review-study
#19
Susan E Thrane, Scott H Maurer, Susan M Cohen, Carol May, Susan M Sereika
BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013...
June 6, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28578815/three-years-experience-with-the-first-pediatric-hospice-in-asia
#20
Kohei Ando, Makoto Nabetani, Nobuyuki Yotani, Tatsushi Rin, Hiroyuki Sano
OBJECTIVE: Pediatric hospice has been the adoption of several service provision models in highly developed countries such as UK, Germany, Australia or Canada for a few decades, yet it has seldom been the case in the Asian Continent. This study aimed to evaluate the newest challenge for the children with Life-threatening illness (LTI) and described the characteristic of pediatric palliative care at the first pediatric hospice in Japan. METHODS: A retrospective review of all patients at our pediatric hospice in these three years was conducted...
May 31, 2017: Brain & Development
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