1
40
3
-
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.socscimed.2003.09.005" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.socscimed.2003.09.005</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: preferences among cancer patients and their carers
Publisher
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Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Female; Humans; Male; Terminally Ill; Cohort Studies; Great Britain; Adult; Aged; Middle Aged; Attitude to Death; Longitudinal Studies; Patient Satisfaction; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Comparative Study; location of death; Neoplasms/mortality/therapy; Hospice Care/standards/trends
Creator
An entity primarily responsible for making the resource
Thomas C; Morris SM; Clark D
Description
An account of the resource
The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2-4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.socscimed.2003.09.005" target="_blank" rel="noreferrer">10.1016/j.socscimed.2003.09.005</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
80 And Over
Adult
Aged
Attitude To Death
Backlog
Caregivers/psychology
Clark D
Cohort Studies
Comparative Study
Female
Great Britain
Hospice Care/standards/trends
Humans
Journal Article
Location Of Death
Longitudinal Studies
Male
Middle Aged
Morris SM
Neoplasms/mortality/therapy
Non-U.S. Gov't
Patient Satisfaction
Research Support
Social science & medicine
Terminally Ill
Thomas C
-
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=9743839" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=9743839</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
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Issues in research: Formative evaluation and its relevance to palliative care
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
England; Data Collection; Quality of Health Care; Health Care; Quality Indicators; Palliative Care/standards; Program Evaluation
Creator
An entity primarily responsible for making the resource
Ingleton C; Field D; Clark D
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
1998
1998
Backlog
Clark D
Data Collection
England
Field D
Health Care
Ingleton C
Journal Article
Palliative Care/standards
Palliative Medicine
Program Evaluation
Quality Indicators
Quality Of Health 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
Backlog
URL Address
<a href="http://doi.org/10.1002/ajmg.a.34329" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.34329</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
Causes of death and autopsy findings in a large study cohort of individuals with Cornelia de Lange syndrome and review of the literature
Publisher
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American Journal Of Medical Genetics.Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Creator
An entity primarily responsible for making the resource
Schrier SA; Sherer I; Deardorff MA; Clark D; Audette L; Gillis L; Kline AD; Ernst L; Loomes K; Krantz ID; Jackson LG
Description
An account of the resource
To identify causes of death (COD) in propositi with Cornelia de Lange syndrome (CdLS) at various ages, and to develop guidelines to improve management and avoid morbidity and mortality, we retrospectively reviewed a total of 426 propositi with confirmed clinical diagnoses of CdLS in our database who died in a 41-year period between 1966 and 2007. Of these, 295 had an identifiable COD reported to us. Clinical, laboratory, and complete autopsy data were completed on 41, of which 38 were obtainable, an additional 19 had autopsies that only documented the COD, and 45 propositi had surgical, imaging, or terminal event clinical documentation of their COD. Proband ages ranged from fetuses (21-40 weeks gestation) to 61 years. A literature review was undertaken to identify all reported causes of death in CdLS individuals. In our cohort of 295 propositi with a known COD, respiratory causes including aspiration/reflux and pneumonias were the most common primary causes (31%), followed by gastrointestinal disease, including obstruction/volvulus (19%). Congenital anomalies accounted for 15% of deaths and included congenital diaphragmatic hernia and congenital heart defects. Acquired cardiac disease accounted for 3% of deaths. Neurological causes and accidents each accounted for 8%, sepsis for 4%, cancer for 2%, renal disease for 1.7%, and other causes, 9% of deaths. We also present 21 representative clinical cases for illustration. This comprehensive review has identified important etiologies contributing to the morbidity and mortality in this population that will provide for an improved understanding of clinical complications, and management for children and adults with CdLS.
Identifier
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<a href="http://doi.org/10.1002/ajmg.a.34329" target="_blank" rel="noreferrer">10.1002/ajmg.a.34329</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
American Journal Of Medical Genetics.Part A
Audette L
Backlog
Clark D
Deardorff MA
Ernst L
Gillis L
Jackson LG
Journal Article
Kline AD
Krantz ID
Loomes K
Schrier SA
Sherer I