2
40
51
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10848367" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10848367</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Reviewing audit: barriers and facilitating factors for effective clinical audit
Publisher
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Quality In Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Physician-Patient Relations; Great Britain; Medical Staff; Leadership; Physician's Role; Interprofessional Relations; Patient Satisfaction; Quality of Health Care; Job Satisfaction; Hospitals; MEDLINE; Family Practice; Primary Health Care; Non-U.S. Gov't; Comparative Study; Evaluation Studies; retrospective studies; Databases; Hospital; Support; General; Attitude of Health Personnel; Nursing Audit; Bibliographic; Medical Audit/standards; Medical Records/standards; Partnership Practice
Creator
An entity primarily responsible for making the resource
Johnston G; Crombie IK; Davies HT; Alder EM; Millard A
Description
An account of the resource
OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a thorough review of Medline and CINAHL databases using the keywords of "audit", "audit of audits", and "evaluation of audits" and a handsearch of the indexes of relevant journals for key papers. RESULTS: Findings from 93 publications were reviewed. These ranged from single case studies of individual audit projects through retrospective reviews of departmental audit programmes to studies of interface projects between primary and secondary care. The studies reviewed incorporated the experiences of a wide variety of clinicians, from medical consultants to professionals allied to medicine and from those involved in unidisciplinary and multidisciplinary ventures. Perceived benefits of audit included improved communication among colleagues and other professional groups, improved patient care, increased professional satisfaction, and better administration. Some disadvantages of audit were perceived as diminished clinical ownership, fear of litigation, hierarchical and territorial suspicions, and professional isolation. The main barriers to clinical audit can be classified under five main headings. These are lack of resources, lack of expertise or advice in project design and analysis, problems between groups and group members, lack of an overall plan for audit, and organisational impediments. Key facilitating factors to audit were also identified: they included modern medical records systems, effective training, dedicated staff, protected time, structured programmes, and a shared dialogue between purchasers and providers. CONCLUSIONS: Clinical audit can be a valuable assistance to any programme which aims to improve the quality of health care and its delivery. Yet without a coherent strategy aimed at nurturing effective audits, valuable opportunities will be lost. Paying careful attention to the professional attitudes highlighted in this review may help audit to deliver on some of its promise.
2000
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
Alder EM
Attitude Of Health Personnel
Backlog
Bibliographic
Comparative Study
Crombie IK
Databases
Davies HT
Evaluation Studies
Family Practice
General
Great Britain
Hospital
Hospitals
Interprofessional Relations
Job Satisfaction
Johnston G
Journal Article
Leadership
Medical Audit/standards
Medical Records/standards
Medical Staff
Medline
Millard A
Non-U.S. Gov't
Nursing Audit
Partnership Practice
Patient Satisfaction
Physician-patient Relations
Physician's Role
Primary Health Care
Quality In Health Care
Quality Of Health Care
Retrospective Studies
Support
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1377/hlthaff.2011.0922" target="_blank" rel="noreferrer">http://doi.org/10.1377/hlthaff.2011.0922</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there
Publisher
An entity responsible for making the resource available
Health Affairs
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Female; Hospitalization; Humans; Male; United States; Terminal Care; Terminally Ill; Hospital Mortality; Aged; Emergency Service; 80 and over; Hospital; Insurance Claim Review
Creator
An entity primarily responsible for making the resource
Smith AK; McCarthy E; Weber E; Cenzer IS; Boscardin J; Fisher J; Covinsky K
Description
An account of the resource
Emergency department use contributes to high end-of-life costs and is potentially burdensome for patients and family members. We examined emergency department use in the last months of life for patients age sixty-five or older who died while enrolled in a longitudinal study of older adults in the period 1992-2006. We found that 51 percent of the 4,158 [corrected] decedents visited the emergency department in the last month of life, and 75 percent in the last six months of life. Repeat visits were common. A total of 77 percent of the patients seen in the emergency department in the last month of life were admitted to the hospital, and 68 percent of those who were admitted died there. In contrast, patients who enrolled in hospice at least one month before death rarely visited the emergency department in the last month of life. Policies that encourage the preparation of patients and families for death and early enrollment in hospice may prevent emergency department visits at the end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1377/hlthaff.2011.0922" target="_blank" rel="noreferrer">10.1377/hlthaff.2011.0922</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2012
80 And Over
Aged
Backlog
Boscardin J
Cenzer IS
Covinsky K
Emergency Service
Female
Fisher J
Health Affairs
Hospital
Hospital Mortality
Hospitalization
Humans
Insurance Claim Review
Journal Article
Male
McCarthy E
Smith AK
Terminal Care
Terminally Ill
United States
Weber E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/28255137</a>
Dublin Core
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Title
A name given to the resource
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Publisher
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Medical Journal Of Malaysia
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Creator
An entity primarily responsible for making the resource
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Description
An account of the resource
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. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Abdul Manaf AM
Abdul Shukor INC
Acute Lymphoblastic Leukemia
Adolescent
Adult
Alias E
Bereavement
Caregiver
Cerebral Palsy
Chieng CH
Child
Child Care
Chong LA
Chromosome
Chromosome Aberration
Clinical Trial
Congenital Malformation
Controlled Clinical Trial
Controlled Study
Cross Sectional Study
Diagnosis
Duchenne Muscular Dystrophy
Education
Female
Follow Up
Hedra ZS
Hospital
Hospital Admission
Human
Icd-10
Infant
Khalid F
Khoo TB
Kuan GL
Major Clinical Study
malaysia
Male
Malignant Neoplasm
Medical Journal Of Malaysia
Multicenter Study
Needs Assessment
Newborn
Observational Study
Ong GB
Palliative Therapy
Patient Referral
Pediatrician
Prognosis
Razali H
Review
Spinal Muscular Atrophy
Teh SH
Wang JJ
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a></a> <a href="http://doi.org/10.1177/1049909115617140" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909115617140</a>
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: 01 Apr 2017</p>
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Title
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Discussing Serious News
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Education; Interpersonal Communication; Procedures; Psychology; Adult; Bereavement; Doctor Patient Relation; Emotion; Empathy; Female; Hospital; Human; Male; Medical Education; Palliative Therapy; Parent; Pediatrics
Creator
An entity primarily responsible for making the resource
Flint H; Meyer M; Hossain M; Klein M
Description
An account of the resource
AIM: The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role play on pediatric residents' confidence to communicate serious news. METHODS: Following the workshop, pediatric residents were surveyed to assess their perceived efficacy of the educational intervention. The survey included anchored response and open-ended questions to yield qualitative and quantitative results. RESULTS: After completing the workshop, residents' confidence in discussing goals, managing emotions, and expressing empathy all increased significantly. Residents reported that the inclusion of bereaved parents was beneficial since it made the experience more realistic. In addition, they believed their ability to communicate with patients and families had improved. CONCLUSIONS: Including bereaved parents in this communication skills workshop improved the residents' confidence in discussing serious topics and enhanced the reality of the experience.
Identifier
An unambiguous reference to the resource within a given context
<a></a> <a href="http://doi.org/10.1177/1049909115617140" target="_blank" rel="noreferrer">10.1177/1049909115617140</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Bereavement
December 2017 List
Doctor Patient Relation
Education
Emotion
Empathy
Female
Flint H
Hospital
Hossain M
Human
Interpersonal Communication
Klein M
Male
Medical Education
Meyer M
Palliative Therapy
Parent
Pediatrics
Procedures
Psychology
The American Journal of Hospice & Palliative Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a href="https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31</a>
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Creator
An entity primarily responsible for making the resource
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Description
An account of the resource
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
103-90-2 (paracetamol)
1095-90-5 (methadone)
125-56-4 (methadone)
12794-10-4 (benzodiazepine)
137-58-6 (lidocaine)
2017
23142-53-2 (methadone)
24847-67-4 (lidocaine)
297-88-1 (methadone)
437-38-7 (fentanyl)
53663-61-9 (opiate)
56934-02-2 (lidocaine)
60142-96-3 (gabapentin)
73-78-9 (lidocaine)
76-99-3 (methadone)
8002-76-4 (opiate)
8008-60-4 (opiate)
Acute Stress Disorder
Alcohol Consumption
Anticonvulsive Agent
Appetite
Benzodiazepine
Brill P
Connelly E
Corticosteroid
Distress Syndrome
Dyspnea
Fentanyl
Gabapentin
Hair Loss
Health Care Personnel
Health Care System
Hospital
Howk T
Human
Intensive Care Unit
Lidocaine
Major Depression
Medical Staff
Methadone
Mortality
Nausea And Vomiting
Neoplasm
November 2017 List
Obesity
Opiate
Palliative Therapy
Paracetamol
Paralysis
Patient Care Planning
Pediatric Oncology
Pillai R
Postovsky S
Priority Journal
Prostaglandin/ec [endogenous Compound]
Quality Of Life
Tracheostomy
Wasilewski-Masker K
Wrammert KC
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
http://ezproxy.library.ubc.ca/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2017-41949-001&site=ehost-live&scope=site
Notes
<p>Faculty of Health, Social Care and Education, Kingston University and St George's, University London, Kingston upon Thames, United Kingdom. Other Publishers: Blackwell Publishing. Release Date: 20170921. Publication Type: Journal (0100), Peer Reviewed Journal (0110). Format Covered: Electronic. Language: English. Major Descriptor: No terms assigned. Classification: Health & Mental Health Treatment & Prevention (3300). Publication History: Accepted Date: Jun 22, 2017. Copyright Statement: John Wiley & Sons Ltd. 2017.</p>
Dublin Core
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Title
A name given to the resource
The role of hospice in the transition from hospital to home for technology‐dependent children—a qualitative study
Publisher
An entity responsible for making the resource available
Journal of Clinical Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
2017; Children; Discharge Planning; Hospital; No Terms Assigned; Technology
Creator
An entity primarily responsible for making the resource
Price Jayne; McCloskey Sharon; Brazil Kevin
Description
An account of the resource
Aims and objectives To report parent and professional perspectives of step‐down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years, increasing numbers of children‐dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. Design This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. Methods Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step‐down care. Results Multiple benefits of step‐down in the hospice were clear. Both sets of accounts suggested that for children and families life was 'on hold' in hospital. Hospice was considered a home‐like environment where the child and family could 'live again'. Parents reflected that, in hospice they were 'living, not existing' while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. Conclusions and relevance to clinical practice The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Identifier
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10.1111/jocn.13941
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Brazil Kevin
Children
Discharge Planning
Hospital
Journal of Clinical Nursing
McCloskey Sharon
November 2017 List
Price Jayne
Technology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Creator
An entity primarily responsible for making the resource
Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Description
An account of the resource
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
10.1186/s12904-016-0166-8
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
BMC Palliative Care
Bosman DK
Caron HN
Case Management
Child
Clergy
Colenbrander DA
Controlled Study
Grootenhuis MA
Hospital
Human
Jagt Van Kampen CT
Kars MC
Major Clinical Study
March 2017 List
Nurse
Palliative Therapy
Prospective Study
Psychologist
Questionnaire
Schouten-Van Meeteren AYN
Social Worker
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Surgical Intervention In Trisomy 18-supporting Pallative Care
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Trisomy 18; Birth Weight; Clinical Article; Diagnosis; Female; Gastrointestinal Symptom; Heart; Hospital; Human; Infant; Intestine Obstruction; Male; Meningomyelocele; Palliative Therapy; Pathology; Pregnancy; Prognosis; Surgery; Tracheoesophageal Fistula
Creator
An entity primarily responsible for making the resource
Masood Y; Spiers H; Cragie R; Edi-Osagie N
Description
An account of the resource
Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from surgery. Providing intensive care including surgery must be carefully considered. We aimed to review surgical intervention in babies with Trisomy 18 and its outcome. Methods A retrospective case note review was undertaken of babies with a confirmed diagnosis of Trisomy 18 admitted to NICU over a 5 year period (01/09/2011 to 31/08/2016). Results 15 babies with Trisomy 18 were identified, 12 male and 3 female. Mean birth weight was 1.91 kg. Babies were born at a mean gestation of 39 weeks (range 31-41 weeks) (Tables 1, 2 and 3). Out of the 8 babies who had surgical pathology, 6 were stable enough to receive surgical intervention. 1 infant with a TOF/OA and 1 with complex cardiac problems were too unstable for surgery and died in hospital. Of the patients operated on, 1 baby died in theatre but the remainder were discharged home. Gastrointestinal problems were the main indications for surgery. 3 operations were undertaken for tracheo-oesophageal fistula, 2 for intestinal obstruction and 1 myelomeningocoele repair. Three of the 6 operations took place before a diagnosis of Trisomy 18 was confirmed. Conclusion Patients with Trisomy 18 who had surgical lesions that were amenable to intervention received surgery and had good short term outcomes with the majority of these patients discharged home. Surgery was performed both before and after the diagnosis of Trisomy 18 was confirmed, although it was suspected in all but one case. We therefore consider that a diagnosis of Trisomy 18 should not be a contraindication to surgical intervention. Our data shows that despite the poor long term prognosis of Trisomy 18, surgery should be considered to enable good quality palliative care, enable discharge home and improve the quality of a short life. (Table presented).
Identifier
An unambiguous reference to the resource within a given context
10.1136/archdischild-2017-313087.503
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Archives of Disease in Childhood
Birth Weight
Clinical Article
Cragie R
Diagnosis
Edi-Osagie N
Female
Gastrointestinal Symptom
Heart
Hospital
Human
Infant
Intestine Obstruction
Male
Masood Y
Meningomyelocele
Palliative Therapy
Pathology
Pregnancy
Prognosis
September 2017 List
Spiers H
Surgery
Tracheoesophageal Fistula
Trisomy 18
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Children And Young Person Advanced Care Plans In District General Hospitals-who Gets Them?
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Female; Hospital; Male; Awareness; Child; Clinical Article; Community Health Nursing; Data Base; Death; Documentation; Human; Palliative Therapy; Resuscitation; Validity
Creator
An entity primarily responsible for making the resource
Holland C; Nohavicka L; Aspel J; Hughes S
Description
An account of the resource
Aims An audit of children and young person's advanced care plans (ACPs) in two district general hospitals (centres A and B) against NICE guidance [1]. Methods Centre A: consultants were emailed to identify the population with ACPs. Centre B: two consultants who write ACPs were approached for their patient lists, and the rest of the consultant body was emailed. Patient lists from both centres were cross-referenced with the community nursing teams and paediatric A and E. Each ACP was reviewed to check validity, resuscitation plan, wishes during life and death, review date and distribution to members of the multidisciplinary team (MDT). Results 12 children were identified in centre A, and 31 children in centre B. The majority of ACPs were for ACT category 4 [2] (80% of ACPs in centre A, 69% in centre B). 80% of patients across both centres had demographic details and a resuscitation plan clearly documented. Wishes for life were documented in 50% of cases in centre A and 73% of cases in centre B. Distribution was variable and data was not available for some cases. Paediatric A and E was the most reliable place to find ACPs (80% in both centres) and GPs the least (only 50% of all patients where data was available). Conclusions Centre B, where there are two dedicated palliative care doctors, had a higher number of ACPs. Centre B had improved documentation, including 'flagging' patients on the hospital IT system. Despite this, distribution of ACPs to members of the MDTwas not improved. Both centres are developing ACP databases to contain a record of all patients with ACPs in one place, which will highlight review dates and distribution to the MDT. Resuscitation plans and demographics were clearly documented, and there is a move towards documenting 'wishes for life' at both centres. With greater awareness of paediatric palliative care needs and an increase in the paediatric population with life-limiting conditions, the importance of ACPs cannot be underestimated. With this, dedicated ACP co-ordinators may be required to improve distribution and review. Consideration of electronic formats held by parents may improve access to up-todate copies of ACPs.
Identifier
An unambiguous reference to the resource within a given context
10.1136/archdischild-2017-313087.516
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Archives of Disease in Childhood
Aspel J
Awareness
Child
Clinical Article
Community Health Nursing
Data Base
Death
Documentation
Female
Holland C
Hospital
Hughes S
Human
Male
Nohavicka L
Palliative Therapy
Resuscitation
September 2017 List
Validity
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0036-1583746
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Family-oriented Palliative Care: Parents' Perspective And Experience
Publisher
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Neuropediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Family Study; Palliative Therapy; Brain Damage; Child; Chromosome Disorder; Chromosome Disorders; Complication; Controlled Study; Dyspnea; Gene Deletion; Hospice; Hospital; Human; Length Of Stay; Life Expectancy; Medical Service; Metabolic Disorder; Neuromuscular Disease; Only Child; Pain; Palliative Care; Quality Of Life; Seizure; Spasticity; Spiritual Care; Symptom
Creator
An entity primarily responsible for making the resource
Pietz J
Description
An account of the resource
Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease life-expectancy due to complications. Care for children with life-shortening diseases is a major challenge for parents and the whole family. A vast majority of families prefer to live at home with their severely sick child, and they also want to avoid admissions to hospital and stay at their familiar environment for the final period of life. To cope with all these demands, many families need a lot of support. By means of early integration of palliative perspective and care support can be adapted to the needs of the child and the family. Many children are living at home with their parents for many years. In many cases, quality of life and a stable familiar environment can be assured only by substantial external assistance. Support by specialized palliative care teams (SAPV), hospices and hospice services is able to unburden families. Important tasks are continuous and 24-hour medical services for symptom control (regarding e.g., pain, dyspnea, seizures, spasticity) as well as psychological, emotional, social and spiritual care for patients and all other family members.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1055/s-0036-1583746
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Brain Damage
Child
Chromosome Disorder
Chromosome Disorders
Complication
Controlled Study
Dyspnea
Family Study
Gene Deletion
Hospice
Hospital
Human
June 2017 List
Length Of Stay
Life Expectancy
Medical Service
Metabolic Disorder
Neuromuscular Disease
Neuropediatrics
Only Child
Pain
Palliative Care
Palliative Therapy
Pietz J
Quality Of Life
Seizure
Spasticity
Spiritual Care
Symptom
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience
Publisher
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Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Degenerative Disease; Terminal Care; Case Study; Child; Clinical Article; Controlled Study; England; Family; Hospital; Human; Myoclonus; Neurodegenerative Diseases; Neurology; Only Child; Palliative Care; Palliative Therapy; Personal Experience; Rare Disease; Seizure; Social Welfare; Symptom; Terminal Care
Creator
An entity primarily responsible for making the resource
Donald A; Kauffmann L; Ram D; Vassallo G
Description
An account of the resource
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of life care to this patient population. To highlight the unique and specific challenges of end of life care in neurodegenerative disease. Introduction: New Children and Young Persons Advanced Care Planning Guidance has been introduced in 2015. The aim is to improve collaborative working between health care services for children and to create a clear, safe and effective platform from which to provide palliative care. In view of this, consideration has been given to the experience of children and families with neurodegenerative disease in different parts of the Northwest of England. These children, like many other cohorts of children with rare or chronic disease, have unique and specific needs. Methods: This case-series describes the end of life care provided to families in different regions of the Northwest. Case notes of six patients who died between 2013 and 2015 and who received input from the Paediatric Neurology Department at Royal Manchester Children's Hospital, were reviewed. All patients had a neurodegenerative disease with seizure or myoclonus as a significant symptom. Case notes were reviewed systematically with use of a developed proforma. Results: The review showed the most effective end of life care varied by geographical region likely reflecting provision of community services. Those patients with access to dedicated and engaged community and tertiary centre teams who worked in collaboration had the most effective end of life experience. Conclusions: Children with neurodegenerative disease do have unique and specific end of life needs, however, fundamental to effective end of life care is a care multi-agency cohesive and accessible team.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Case Study
Child
Clinical Article
Controlled Study
Degenerative Disease
Developmental Medicine and Child Neurology
Donald A
England
Family
Hospital
Human
Kauffmann L
May 2017 List
Myoclonus
Neurodegenerative Diseases
Neurology
Only Child
Palliative Care
Palliative Therapy
Personal Experience
Ram D
Rare Disease
Seizure
Social Welfare
Symptom
Terminal Care
Vassallo G