1
40
9
-
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/10.1001/jama.297.24.2725" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.297.24.2725</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
Shifting place of death among children with complex chronic conditions in the United States, 1989-2003
Publisher
An entity responsible for making the resource available
Journal Of The American Medical Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Attitude to Death; adolescent; Preschool; infant; Newborn; retrospective studies; United States/epidemiology; Chronic Disease/mortality; Hospitals/statistics & numerical data; Palliative Care/statistics & numerical data; Residence Characteristics/statistics & numerical data; Terminally Ill/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Feudtner C; Feinstein JA; Satchell M; Zhao H; Kang T
Description
An account of the resource
CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in attitudes about pediatric palliative care and hospice services. OBJECTIVES: To determine whether pediatric deaths attributed to complex chronic conditions are increasingly occurring in the home and to assess race and ethnicity disparities in the location of death. DESIGN, SETTING, AND PARTICIPANTS: Retrospective national-level case series drawn from the National Center for Health Statistics' Multiple Cause of Death Files spanning 1989-2003. Participants included all deceased individuals aged 19 years or younger with a complex chronic condition excluding injury and noncomplex chronic conditions (as classified by International Classification of Diseases, Ninth Revision or International Classification of Diseases, Tenth Revision). MAIN OUTCOME MEASURE: Place where death occurred. RESULTS: Among the 22.1% of deaths (198 160 of 896 509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of individuals dying at home increased significantly (P<.001) over time for infants (aged <1 year) (4.9% in 1989 and 7.3% in 2003); 1- to 9-year-olds (17.9% and 30.7%); and for 10- to 19-year-olds (18.4% and 32.2%). Adjusting for decedent characteristics, the odds of dying at home increased significantly each year (odds ratio, 1.04; 95% confidence interval, 1.03-1.04) and were reduced among both black and Hispanic decedents (odds ratio, 0.50; 95% confidence interval, 0.48-0.52 and odds ratio, 0.52; 95% confidence interval, 0.50-0.54, respectively) compared with white decedents. CONCLUSIONS: Children who die with underlying complex chronic conditions increasingly are dying at home. Racial and ethnic disparities regarding place of death may represent important limitations and opportunities for improvement in the current systems of pediatric chronic and palliative care.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.297.24.2725" target="_blank" rel="noreferrer">10.1001/jama.297.24.2725</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
2007
Adolescent
Attitude To Death
Backlog
Child
Chronic Disease/mortality
Feinstein JA
Female
Feudtner C
Hospitals/statistics & numerical data
Humans
Infant
Journal Article
Journal Of The American Medical Association
Kang T
Male
Newborn
Palliative Care/statistics & Numerical Data
Preschool
Residence Characteristics/statistics & numerical data
Retrospective Studies
Satchell M
Terminally Ill/statistics & numerical data
United States/epidemiology
Zhao H
-
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/10.1016/j.jpainsymman.2007.09.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2007.09.008</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
Does palliative care improve quality? A survey of bereaved family members
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Female; Humans; Male; Terminal Care; Family; Adult; Data Collection; Aged; Middle Aged; Treatment Outcome; New York; adolescent; 80 and over; bereavement; Palliative Care/statistics & numerical data; Patient Satisfaction/statistics & numerical data; Health Care; Quality Assurance; Pain/epidemiology/nursing
Creator
An entity primarily responsible for making the resource
Gelfman LP; Meier DE; Morrison RS
Description
An account of the resource
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2007.09.008" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2007.09.008</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
2008
80 And Over
Adolescent
Adult
Aged
Backlog
Bereavement
Data Collection
Family
Female
Gelfman LP
Health Care
Humans
Journal Article
Journal of Pain and Symptom Management
Male
Meier DE
Middle Aged
Morrison RS
New York
Pain/epidemiology/nursing
Palliative Care/statistics & Numerical Data
Patient Satisfaction/statistics & Numerical Data
Quality Assurance
Terminal Care
Treatment Outcome
-
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/10.1016/j.pcl.2007.07.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2007.07.004</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
Compassion fatigue in pediatric palliative care providers
Publisher
An entity responsible for making the resource available
Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Humans; Pediatrics/statistics & numerical data; empathy; Palliative Care/statistics & numerical data; Fatigue/epidemiology/psychology; Health Personnel/psychology/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Rourke MT
Description
An account of the resource
The experience of compassion fatigue is an expected and common response to the professional task of routinely caring for children at the end of life. Symptoms of compassion fatigue often mimic trauma reactions. Implementing strategies that span personal, professional, and organizational domains can help protect health care providers from the damaging effects of compassion fatigue. Providing pediatric palliative care within a constructive and supportive team can help caregivers deal with the relational challenges of compassion fatigue. Finally, any consideration of the toll of providing pediatric palliative care must be balanced with a consideration of the parallel experience of compassion satisfaction.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pcl.2007.07.004" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.07.004</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
2007
Backlog
Child
Empathy
Fatigue/epidemiology/psychology
Health Personnel/psychology/statistics & numerical data
Humans
Journal Article
Palliative Care/statistics & Numerical Data
Pediatric Clinics of North America
Pediatrics/statistics & numerical data
Rourke MT
-
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/10.1016/j.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2004.01.013</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
Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Physician-Patient Relations; Data Collection; Physician's Practice Patterns/statistics & numerical data; United States/epidemiology; Palliative Care/statistics & numerical data; Terminally Ill/statistics & numerical data; Quality Assurance; Professional Competence/statistics & numerical data; Health Care/methods; Primary Health Care/statistics & numerical data; Terminal Care/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Farber NJ; Urban SY; Collier VU; Metzger M; Weiner J; Boyer EG
Description
An account of the resource
We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their skills in each area. A majority of physicians always or frequently performed all 10 palliative care items, but fewer than 50% of respondents adequately attended to the spiritual needs and economic problems of patients. Interest in palliative care was associated with an increased frequency in performing palliative care items (P = 0.036), while training in palliative care was associated with better perceived performance (P = 0.05). Only 36% of respondents had received training in palliative care. Internists and family practitioners provide palliative care to patients, but feel their skills are lacking in certain areas. Training may improve care to patients at the end of life.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.01.013</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
2004
Backlog
Boyer EG
Collier VU
Data Collection
Farber NJ
Health Care/methods
Humans
Journal Article
Journal of Pain and Symptom Management
Metzger M
Palliative Care/statistics & Numerical Data
Physician-patient Relations
Physician's Practice Patterns/statistics & numerical data
Primary Health Care/statistics & numerical data
Professional Competence/statistics & numerical data
Quality Assurance
Terminal Care/statistics & Numerical Data
Terminally Ill/statistics & numerical data
United States/epidemiology
Urban SY
Weiner J
-
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/10.1191/0269216302pm579xx" target="_blank" rel="noreferrer">http://doi.org/10.1191/0269216302pm579xx</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
Statistical aspects of measurement in palliative care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Sensitivity and Specificity; Reproducibility of Results; Bias (Epidemiology); Epidemiologic Measurements; Palliative Care/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Pickering RM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/0269216302pm579xx" target="_blank" rel="noreferrer">10.1191/0269216302pm579xx</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
Description
An account of the resource
2002
2002
Backlog
Bias (Epidemiology)
Epidemiologic Measurements
Humans
Journal Article
Palliative Care/statistics & Numerical Data
Palliative Medicine
Pickering RM
Reproducibility of Results
Sensitivity and Specificity
-
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/10.1136/adc.2009.178269" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2009.178269</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
Place of death and palliative care following discharge from paediatric intensive care units
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
2011
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; Cohort Studies; adolescent; Preschool; infant; Newborn; Hospitalization/statistics & numerical data; Palliative Care/statistics & numerical data; location of death; Pediatric/statistics & numerical data; child mortality; Great Britain/epidemiology; Home Care Services/statistics & numerical data; Hospice Care/statistics & numerical data; Patient Discharge/statistics & numerical data; Referral and Consultation/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Fraser LK; Miller M; Draper ES; McKinney PA; Parslow RC; Paediatric Intensive Care Audit Network
Description
An account of the resource
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to Office of National Statistics death certificate data. SETTING: 31 PICUs in Great Britain. PARTICIPANTS: A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007. MAIN OUTCOME MEASURES: Place of death by palliative care discharge status. RESULTS: 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%). CONCLUSIONS: Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2009.178269" target="_blank" rel="noreferrer">10.1136/adc.2009.178269</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
2011
Adolescent
Archives of Disease in Childhood
Backlog
Child
Child Mortality
Cohort Studies
Draper ES
Female
Fraser LK
Great Britain/epidemiology
Home Care Services/statistics & Numerical Data
Hospice Care/statistics & Numerical Data
Hospitalization/statistics & numerical data
Humans
Infant
Intensive Care Units
Journal Article
Location Of Death
Male
McKinney PA
Miller M
Newborn
Paediatric Intensive Care Audit Network
Palliative Care/statistics & Numerical Data
Parslow RC
Patient Discharge/statistics & Numerical Data
Pediatric/statistics & Numerical Data
Preschool
Referral And Consultation/statistics & Numerical Data
-
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/10.1177/0269216311419989" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216311419989</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
A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Child; Female; Humans; Male; Cohort Studies; Prevalence; Disease Progression; Multivariate Analysis; Poverty Areas; adolescent; Preschool; infant; retrospective studies; Palliative Care/statistics & numerical data; Disease Specific; Great Britain/epidemiology; Muscular Dystrophy; Duchenne/epidemiology/mortality; Neuromuscular Diseases/epidemiology/mortality; Referral and Consultation/trends; Spinal Muscular Atrophies of Childhood/epidemiology/mortality
Creator
An entity primarily responsible for making the resource
Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC
Description
An account of the resource
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216311419989" target="_blank" rel="noreferrer">10.1177/0269216311419989</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
Adolescent
Aldridge J
Backlog
Child
Childs AM
Cohort Studies
Disease Progression
Disease Specific
Duchenne/epidemiology/mortality
Female
Fraser LK
Great Britain/epidemiology
Humans
Infant
Journal Article
Male
Manning S
McKinney PA
Miller M
Multivariate Analysis
Muscular Dystrophy
Neuromuscular Diseases/epidemiology/mortality
Palliative Care/statistics & Numerical Data
Palliative Medicine
Parslow RC
Poverty Areas
Preschool
Prevalence
Referral and Consultation/trends
Retrospective Studies
Spinal Muscular Atrophies of Childhood/epidemiology/mortality
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
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
Mortality trends for pediatric life-threatening conditions.
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Creator
An entity primarily responsible for making the resource
Chavoshi N; Miller T; Siden H
Description
An account of the resource
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</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).
2014
Adolescent
British Columbia
Cause Of Death
Chavoshi N
Child
Child Mortality/trends
Child Preschool
Female
Hospice
Hospice Care/statistics & Numerical Data
Humans
Illness
Infant
Infant Newborn
Life-threatening Conditions
Male
Miller T
Mortality
Palliative
Palliative Care/statistics & Numerical Data
Pediatric
Pediatrics
Siden H
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
December 2016 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
Experiences In Palliative Home Care Of Infants With Life-limiting Conditions.
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Caregivers; Female; Germany; Home Care Services/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Mortality; Infant Newborn; Male; Palliative Care/statistics & Numerical Data; Patient Comfort/statistics & Numerical Data; Terminal Care/statistics & Numerical Data
Home Care; Infants; Life-limiting Conditions; Neonates; Palliative Care
Creator
An entity primarily responsible for making the resource
Kuhlen M; Höll J; Sabir H; Borkhardt A; Jansen G
Description
An account of the resource
Abstract
The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved.
CONCLUSIONS:
Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1007/s00431-015-2637-y
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).
2015
Borkhardt A
Caregivers
December 2016 List
European Journal of Pediatrics
Female
Germany
Höll J
Home Care
Home Care Services/statistics & Numerical Data
Hospitals Pediatric
Humans
Infant
Infant Mortality
Infant Newborn
Infants
Jansen G
Kuhlen M
Life-limiting Conditions
Male
Neonates
Palliative Care
Palliative Care/statistics & Numerical Data
Patient Comfort/statistics & Numerical Data
Sabir H
Terminal Care/statistics & Numerical Data