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Paediatric palliative care

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https://www.readbyqxmd.com/read/29127099/individualised-advance-care-planning-in-children-with-life-limiting-conditions
#1
Erik A H Loeffen, Wim J E Tissing, Meggi A Schuiling-Otten, Chris C de Kruiff, Leontien C M Kremer, A A Eduard Verhagen
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires...
November 10, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29122828/referrals-to-a-perinatal-specialist-palliative-care-consult-service-in-ireland-2012-2015
#2
Des L McMahon, Marie Twomey, Maeve O'Reilly, Mary Devins
OBJECTIVE: To analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile. DESIGN: A retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015. SETTING: A consultant-led paediatric SPCS at Our Lady's Children's Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin...
November 9, 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
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
#3
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/28941298/symptom-management-and-psychological-support-for-families-are-the-cornerstones-of-end-of-life-care-for-children-with-spinal-muscular-atrophy-type-1
#4
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/28935629/paediatric-advance-care-planning-survey-a-cross-sectional-examination-of-congruence-and-discordance-between-adolescents-with-hiv-aids-and-their-families
#5
Maureen E Lyon, Ronald H Dallas, Patricia A Garvie, Megan L Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang
OBJECTIVES: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. METHODS: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised...
September 21, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28900469/necrotic-ulcerated-and-bleeding-striae-distensae-following-bevacizumab-in-a-palliative-setting-for-gliobastomatosis-cerebri
#6
Olivia Laugier, Laetitia Padovani, Arnauld Verschuur, Caroline Gaudy-Marqueste, Nicolas André
Glioblastoma cerebri is a rare paediatric malignancy with dismal prognosis [Chappé C, Riffaud L, and Tréguier C et al (2013) Primary gliomatosis cerebri involving gray matter in pediatrics: a distinct entity? A multicenter study of 14 casesChilds Nerv Syst29 565-571 https://doi.org/10.1007/s00381-012-2016-1 PMID: 23306961] and no established standard of care. Here, we report a case of ulcerated and bleeding striae distensae in a teenage girl following palliative treatment with bevacizumab and steroids.
2017: Ecancermedicalscience
https://www.readbyqxmd.com/read/28836319/paediatric-palliative-care-and-intellectual-disability-a-unique-context
#7
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/28814489/right-ventricular-outflow-tract-stent-versus-bt-shunt-palliation-in-tetralogy-of-fallot
#8
Daniel Quandt, Bharat Ramchandani, Gemma Penford, John Stickley, Vinay Bhole, Chetan Mehta, Timothy Jones, David James Barron, Oliver Stumper
OBJECTIVE: This study sets out to compare morbidity, mortality and reintervention rates after stenting of the right ventricular outflow tract (RVOT) versus modified Blalock-Taussig shunt (mBTS) for palliation in patients with tetralogy of Fallot (ToF)-type lesions. METHODS: Retrospective case review study evaluating 101 patients (64 males) with ToF lesions who underwent palliation with either mBTS (n=41) or RVOT stent (n=60) to augment pulmonary blood flow over a 10-year period...
August 16, 2017: Heart: Official Journal of the British Cardiac Society
https://www.readbyqxmd.com/read/28793184/survey-highlights-the-need-for-specific-interventions-to-reduce-frequent-conflicts-between-healthcare-professionals-providing-paediatric-end-of-life-care
#9
Marie-Anne Archambault-Grenier, Marie-Hélène Roy-Gagnon, France Gauvin, Hubert Doucet, Nago Humbert, Sanja Stojanovic, Antoine Payot, Sylvie Fortin, Annie Janvier, Michel Duval
AIMS: This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies. METHODS: A questionnaire was distributed to all 2,300 professionals at a paediatric university hospital, covering the frequency of end-of-life conflicts, participants, contributing factors, resolution strategies, outcomes and the usefulness of specific institutional coping strategies. RESULTS: Of the 946 professionals (41%) who responded, 466 had witnessed or participated in paediatric end-of-life discussions: 73% said these had led to conflict, more frequently between professionals (58%) than between professionals and parents (33%)...
August 9, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28705790/children-with-life-limiting-conditions-in-paediatric-intensive-care-units-a-national-cohort-data-linkage-study
#10
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
#11
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/28665209/speech-language-pathology-in-paediatric-palliative-care-a-scoping-review-of-role-and-practice
#12
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/28659021/parental-experiences-with-a-paediatric-palliative-care-team-a-qualitative-study
#13
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/28644748/paediatric-palliative-medicine-2nd-ed
#14
Roger Woodruff
Editor's Note The journal is delighted to continue a collaboration with the International Association for Hospice and Palliative Care (IAHPC) in publication of book reviews relevant to symptom control in advanced disease. These reviews are adapted from the work of Roger Woodruff, MD, FRACP, FAChPM, an internationally recognized oncologist and palliative care specialist physician from Australia. Dr. Woodruff's reviews appear concurrently or did so previously in the IAHPC Newsletter, which is accessible through the IAHPC Web site: http://hospicecare...
June 2017: Journal of Pain & Palliative Care Pharmacotherapy
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
#15
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
#16
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/28602938/-let-s-bring-her-home-first-patient-characteristics-and-place-of-death-in-specialized-pediatric-palliative-home-care
#17
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/28494634/changing-place-of-death-in-children-who-died-after-discharge-from-paediatric-intensive-care-units-a-national-data-linkage-study
#18
Lorna K Fraser, Sarah Fleming, Roger Parslow
BACKGROUND: Although child mortality is decreasing, more than half of all deaths in childhood occur in children with a life-limiting condition whose death may be expected. AIM: To assess trends in place of death and identify characteristics of children who died in the community after discharge from paediatric intensive care unit. DESIGN: National data linkage study. SETTING/PARTICIPANTS: All children resident in England and Wales when admitted to a paediatric intensive care unit in the United Kingdom (1 January 2004 and 31 December 2014) were identified in the Paediatric Intensive Care Audit Network dataset...
May 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28492812/palliative-care-in-paediatric-oncology-in-nursing-education
#19
Tuani Magalhães Guimarães, Liliane Faria da Silva, Fátima Helena Espírito Santo, Juliana Rezende Montenegro Medeiros de Moraes, Sandra Teixeira de Araújo Pacheco
Objective: To identify and understand the view of students regarding palliative care in paediatric oncology during a graduate programme. Methods: Exploratory research with a qualitative approach conducted in a school of nursing in Rio de Janeiro. Data were collected from September to November 2014, through semi-structured interviews with 20 students enrolled in the last period of a graduate programme. The data were subjected to thematic analysis. Results: The results produced two thematic units: the (un)preparedness of nursing students regarding palliative care in paediatric oncology and how the subject of palliative care in paediatric oncology is approached in the graduate programme...
May 4, 2017: Revista Gaúcha de Enfermagem
https://www.readbyqxmd.com/read/28487434/fifteen-minute-consultation-practical-pain-management-in-paediatric-palliative-care
#20
Emily Jane Harrop, Karen Brombley, Katherine Boyce
Pain and distress in the paediatric palliative care population can be very difficult to manage. Clinical scenarios range from the acute management of cancer-related pain at the end of life to the ongoing long-term support of children with complex multimodal pain related to progressive neurological conditions. Understanding the child's underlying condition, possible causes of pain and their preferred mode of communication are important to the delivery of holistic care. Modification of environmental factors, basic care consideration and non-pharmacological measures have a large role to play, alongside conventional analgesics...
October 2017: Archives of Disease in Childhood. Education and Practice Edition
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