1
40
35
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Title
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April 2024 List
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
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17084</a>
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Title
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Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Creator
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Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Description
An account of the resource
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Identifier
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<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</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).
2024
Acta Paediatrica
April List 2024
Article
Clinical Outcome
Clinician
communication disorder
Conversation
Critical Illness
Critically Ill Patient
Decision Making
DeVries R
Health Care
Human
Infant Newborn
Interpersonal Communication
Krenz C
Kukora S
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
Parent
Personal Experience
Prenatal Diagnosis
Purposive Sample
Quality Of Life
Semi Structured Interview
shared decision making
Spector-Bagdady K
-
Dublin Core
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Title
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September 2023 List
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 List 2023
URL Address
<a href="http://doi.org/10.1017/s1478951523000664" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951523000664</a>
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Title
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Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; Children; Pediatric; Palliative care; Hospices; Health care; Place
Creator
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Walker M; Nicolardi D; Christopoulos T; Ross T
Description
An account of the resource
BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the importance of place, there is remarkably little literature exploring its role in pediatric palliative care (PPC). OBJECTIVES: To understand the importance and meaning of place in PPC. METHODS: We conducted a scoping review to understand the importance of place in PPC. Five databases were searched using keywords related to "pediatric," "palliative," and "place." Two reviewers screened results, extracted data, and analyzed emergent themes pertaining to place. RESULTS: From 3076 search results, we identified and reviewed 25 articles. The literature highlights hospital, home, and hospice as 3 distinct PPC places. Children and their families have place preferences for PPC and place of death, and a growing number prefer death to occur at home. Results also indicate numerous factors influence place preferences (e.g., comfort, grief, cultural/spiritual practices, and socioeconomic status). SIGNIFICANCE OF RESULTS: Place influences families' PPC decisions and experiences and thus warrants further study. Greater understanding of the importance and roles of place in PPC could enhance PPC policy and practice, as well as PPC environments.
Identifier
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<a href="http://doi.org/10.1017/s1478951523000664" target="_blank" rel="noreferrer noopener">10.1017/s1478951523000664</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).
2023
Children
Christopoulos T
Health Care
Hospices
Nicolardi D
Palliative And Supportive Care
Palliative Care
Pediatric
Place
Ross T
September List 2057
Walker M
-
Dublin Core
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Title
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2022 Special Edition 4 - Low Resource Setting List
Text
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Citation List Month
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1590/1678-4324-2022210615</a>
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Title
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Overview of Perinatal Palliative Care in Brazil
Publisher
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Brazilian Archives of Biology and Technology
Date
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2022
Subject
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quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Creator
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Saffi Junior MC; de Moraes AMSM; Favero GM
Description
An account of the resource
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Identifier
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<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</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).
2022
2022 Special Edition Low Resource Setting Issue
America
Animals
Birth
Birth defects
Brazil
Brazilian Archives of Biology and Technology
Chordata
Community of Portuguese Language Countries
Congenital Abnormalities
Congenital malformations
de Moraes AMSM
drug abusers
drug users
epidemics
Epidemiology
Eukaryotes
Favero GM
gestation
Guidelines
Health Care
high Human Development Index countries
Hominidae
Homo
Human Diseases
Latin America
Malformations
Mammals
Man
microcephaly
Mothers
Neonates
Palliative Care
Pregnancy
Primates
Quality Of Life
Recommendations
Saffi Junior MC
South America
upper-middle income countries
Vertebrates
Women
-
Dublin Core
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Title
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February 2022 List
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
February 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0175</a>
Dublin Core
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Title
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Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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pediatrics; palliative care; health care; cost; utilization
Creator
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Lysecki DL; Gupta S; Rapoport A; Rhodes E; Spruin S; Vadeboncoeur C; Widger K; Tanuseputro P
Description
An account of the resource
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC−). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59–0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44–0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56–0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49–0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4–18.0) and $24,940 (95% CI: $21,703–$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.
Identifier
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<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0175</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).
2022
Cost
February 2022 List
Gupta S
Health Care
Journal of Palliative Medicine
Lysecki DL
Palliative Care
Pediatrics
Rapoport A
Rhodes E
Spruin S
Tanuseputro P
utilization
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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January 2022 List
Text
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Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.3390/children8111043" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8111043</a>
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Title
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The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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family; palliative care; health care; physical therapy; physiotherapy; child interaction
Creator
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Ortiz-Campoy S; Lirio-Romero C; Romay-Barrero H; Álvarez DM; López-Muñoz P; Palomo-Carrión R
Description
An account of the resource
Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.
Identifier
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<a href="http://doi.org/10.3390/children8111043" target="_blank" rel="noreferrer noopener">10.3390/children8111043</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).
2021
Álvarez DM
child interaction
Children
Family
Health Care
January 2022 List
Lirio-Romero C
López-Muñoz P
Ortiz-Campoy S
Palliative Care
Palomo-Carrión R
Physical Therapy
Physiotherapy
Romay-Barrero H
-
Dublin Core
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Title
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February 2021 List
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
February 2021 List
URL Address
<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0009922820940808</a>
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Title
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Defining Legacy: The Perceptions of Pediatric Health Care Providers
Publisher
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Clinical Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Female; Humans; Male; Adaptation Psychological; Attitude to Death; Child Hospitalized/psychology; Terminal Care/psychology; pediatrics; Parents/psychology; Physician's Role; Social Support; Pediatrics/standards; Terminally Ill/psychology; health care; legacy; perceptions; providers
Creator
An entity primarily responsible for making the resource
Boles J; Jones M; Dunbar J; Cook J
Description
An account of the resource
Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.
Identifier
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<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">10.1177/0009922820940808</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).
2020
Adaptation Psychological
Attitude To Death
Boles J
Child
Child Hospitalized/psychology
Clinical Pediatrics
Cook J
Dunbar J
February 2021 List
Female
Health Care
Humans
Jones M
legacy
Male
Parents/psychology
Pediatrics
Pediatrics/standards
perceptions
Physician's Role
Providers
Social Support
Terminal Care/psychology
Terminally Ill/psychology
-
Dublin Core
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Title
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2020 Developing World List
Text
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Citation List Month
Developing World 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjgh-2020-002368" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjgh-2020-002368</a>
Dublin Core
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Title
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Community health workers in palliative care provision in low-income and middle-income countries: a systematic scoping review of the literature
Publisher
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BMJ Global Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
children; palliative care; India; methods; Developing Countries; Asia; health care; recommendations; Chordata; eukaryotes; Hominidae; Homo; human diseases; mammals; man; primates; vertebrates; animals; Commonwealth of Nations; sustainability; methodology; systematic reviews; allied health occupations; community health; effects; grey literature; guidelines; health services; health workers; literature reviews; medical auxiliaries; Newly Industrialized Countries; NICS; non-conventional literature; South Asia; techniques; Third World; threshold countries; Underdeveloped Countries; workers
Creator
An entity primarily responsible for making the resource
MacRae M C; Fazal O; O'Donovan J
Description
An account of the resource
Background: Community health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence from LMICs regarding (1) where and how CHWs are currently deployed in palliative care delivery, (2) the methods used to train and support CHWs in this domain, (3) the evidence surrounding the costs attached with deploying CHWs in palliative care provision and (4) challenges and barriers to this approach. Methods: We conducted a systematic scoping review of the literature, adhering to established guidelines. 11 major databases were searched for literature published between 1978 and 2019, as well as the grey literature. Findings: 13 original studies were included, all of which were conducted in sub-Saharan African countries (n=10) or in India (n=3). Ten described a role for CHWs in adult palliative care services, while three described paediatric services. Roles for CHWs include raising awareness and identifying individuals requiring palliative care in the community, therapeutic management for pain, holistic home-based care and visitation, and provision of psychological support and spiritual guidance. Reports on training context, duration and outcomes were variable. No studies conducted a formal cost analysis. Challenges to this approach include training design and sustainability; CHW recruitment, retention and support; and stigma surrounding palliative care. Conclusion: Despite relatively limited existing evidence, CHWs have important roles in the delivery of palliative care services in LMIC settings. There is a need for a greater number of studies from different geographical contexts to further explore the effectiveness of this approach.
Identifier
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<a href="http://doi.org/10.1136/bmjgh-2020-002368" target="_blank" rel="noreferrer noopener">10.1136/bmjgh-2020-002368</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).
2020
allied health occupations
Animals
Asia
BMJ Global Health
Children
Chordata
Commonwealth of Nations
community health
Developing Countries
Developing World 2020 List
effects
Eukaryotes
Fazal O
grey literature
Guidelines
Health Care
Health Services
health workers
Hominidae
Homo
Human Diseases
India
Literature Reviews
MacRae M C
Mammals
Man
medical auxiliaries
Methodology
Methods
Newly Industrialized Countries
NICS
non-conventional literature
O'Donovan J
Palliative Care
Primates
Recommendations
South Asia
sustainability
Systematic reviews
techniques
Third World
Threshold Countries
Underdeveloped Countries
Vertebrates
workers
-
Dublin Core
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Title
A name given to the resource
October 2020 List
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
October 2020 List
URL Address
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.annals.2020.102900</a>
Dublin Core
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Title
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When a child is sick: the role of social tourism in palliative and end-of-life care
Publisher
An entity responsible for making the resource available
Annals of Tourism Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
animals; Britain; British Isles; child care; childhood diseases; children; Chordata; Commonwealth of Nations; Developed Countries; emotions; eukaryotes; Europe; European Union Countries; health care; health policy; Hominidae; Homo; mammals; man; OECD Countries; primates; social tourism; UK; United Kingdom; vertebrates; Western Europe
Creator
An entity primarily responsible for making the resource
Hunter-Jones P; Sudbury-Riley L; Al-Abdin A; Menzies L; Neary K
Description
An account of the resource
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond 'Dying Well' narratives into ones which celebrate 'Living Well with Dying'. Tourism participation has much to offer such a progressive healthcare policy.
Identifier
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<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">10.1016/j.annals.2020.102900</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).
2020
Al-Abdin A
Animals
Annals of Tourism Research
Britain
British Isles
Child Care
childhood diseases
Children
Chordata
Commonwealth of Nations
Developed Countries
Emotions
Eukaryotes
Europe
European Union Countries
Health Care
Health Policy
Hominidae
Homo
Hunter-Jones P
Mammals
Man
Menzies L
Neary K
October 2020 List
OECD Countries
Primates
social tourism
Sudbury-Riley L
UK
United Kingdom
Vertebrates
Western Europe
-
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
August 2019 List
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
August 2019 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0210574</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
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Publisher
An entity responsible for making the resource available
PLoS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Creator
An entity primarily responsible for making the resource
Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
Description
An account of the resource
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</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).
2019
Adolescent
Adult
Age
Aged
America
Amin R
amyotrophic lateral sclerosis
amyotrophic lateral sclerosis/ep [Epidemiology]
Animals
APEC countries
Article
August 2019 List
Bai Y
Canada
Child
childhood disease/ep [Epidemiology]
childhood diseases
Children
Chordata
Cohort Analysis
Cohort Studies
Commonwealth of Nations
Controlled Study
Data Base
death rate
Developed Countries
Disease Course
disease prevalence
Disease Progression
Eukaryotes
Female
Gershon A
Goldstein R
Health Care
health Insurance
Hominidae
Homo
Human
Human Diseases
Incidence
Infant
International Classification of Diseases
Katz S
Leasa D
Major Clinical Study
Male
Mammals
Man
McKim D
Middle Aged
Mortality
mortality rates
muscles
neuromuscular disease/ep [Epidemiology]
Neuromuscular Diseases
Neuromuscular Disorders
Nonoyama M
North America
OECD Countries
Ontario
Palliative Care
Palliative Therapy
planning
PLoS One
Population Research
Preschool Child
Prevalence
Primates
Retrospective Studies
Retrospective Study
Rose L
School Child
sclerosis
spinal muscular atrophy/ep [Epidemiology]
Spine
Survival
Tandon A
trend study
Trends
Vertebrates
Young Adult
-
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
February 2019 List
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
February 2019 List
URL Address
<a href="http://doi.org/10.2147/amep.s180526" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.2147/amep.s180526</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
Evaluating the impact of national education in pediatric palliative care: the Quality of Care Collaborative Australia
Publisher
An entity responsible for making the resource available
Advances in Medical Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
training; confidence; health care; education dosage; evaluation
Creator
An entity primarily responsible for making the resource
Slater PJ; Herbert AR; Baggio SJ; Donovan LA; McLarty AM; Duffield J A; Pedersen LC; Duc JK; Delaney AM; Johnson SA; Heywood MG; Burr CA
Description
An account of the resource
Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliative care services, through funding for Nurse Educators, Medical Fellows, a National Allied Health Educator, and national project staff. Methods: Pre- and post-education surveys were completed by participants immediately following the education, and confidence and knowledge were measured along nine domains related to the care of the child and family, including managing a new referral, symptom management, medications, preparing the family, and using local agencies. Results: Education was provided to over 5,500 health and human service professionals in 337 education sessions across Australia between May 2015 and June 2017. Paired pre- and post-surveys were completed by 969 participants and showed a significant improvement in all the domains measured. Those with no experience in caring for children receiving palliative care showed greater improvement following QuoCCA education compared to those with experience, although the latter had higher scores both before and after education. Similarly, those with no previous education showed greater improvement, but those with previous education showed higher scores overall. Participants in full-day and half-day sessions showed greater improvement than those in short day sessions. Thus, the dosage of education in the length of the sessions and prior attendance impacted knowledge and confidence. Topics requested by the participants were analyzed. Educator learnings were that education was more effective when tailored to the needs of the audience, was interactive, and included story-telling, case studies, and parent experiences. Conclusion: These results encouraged the continuation of the provision of education to novice and experienced professionals who care for children with a life-limiting condition, leading to higher levels of confidence and knowledge. The learnings from this evaluation will be transferred into the second round of funding for the national QuoCCA education project. The next stage will focus on developing simulation and interactive training, accessible training modules, and videos on a national website.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2147/amep.s180526" target="_blank" rel="noreferrer noopener">10.2147/amep.s180526</a>
2018
Advances in Medical Education and Practice
Baggio SJ
Burr CA
Confidence
Delaney AM
Donovan LA
Duc JK
Duffield J A
education dosage
Evaluation
February 2019 List
Health Care
Herbert AR
Heywood MG
Johnson SA
McLarty AM
Pedersen LC
Slater PJ
Training
-
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.arcped.2013.10.018" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.arcped.2013.10.018</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
[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]
Publisher
An entity responsible for making the resource available
Archives De Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Intensive Care Units; Palliative Care; patient care team; Terminal Care; Attitude of Health Personnel; Withholding Treatment; Resuscitation Orders; Double Effect Principle; Suicide; Patient Rights; Pediatric; Health Surveys; France; Assisted; Health Care; Quality Assurance
Creator
An entity primarily responsible for making the resource
de Saint Blanquat L; Cremer R; Elie C; Lesage F; Dupic L; Hubert P; pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Description
An account of the resource
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.
2014-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.arcped.2013.10.018" target="_blank" rel="noreferrer">10.1016/j.arcped.2013.10.018</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
2014
Archives de Pediatrie
Assisted
Attitude Of Health Personnel
Backlog
Child
Cremer R
de Saint Blanquat L
Double Effect Principle
Dupic L
Elie C
France
Health Care
Health Surveys
Hubert P
Humans
Intensive Care Units
Journal Article
Lesage F
Palliative Care
Patient Care Team
Patient Rights
Pediatric
pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Quality Assurance
Resuscitation Orders
Suicide
Terminal Care
Withholding Treatment
-
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.jclinepi.2013.02.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jclinepi.2013.02.003</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
GRADE guidelines: 15. Going from evidence to recommendation-determinants of a recommendation's direction and strength
Publisher
An entity responsible for making the resource available
Journal Of Clinical Epidemiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Humans; United States; Canada; Practice Guidelines as Topic; Treatment Outcome; Research Design; Risk Assessment; Evidence-Based Medicine; Treatment Failure; Germany; Pulmonary Disease; Health Care; Quality Assurance; Chronic Obstructive
Creator
An entity primarily responsible for making the resource
Andrews JC; Schunemann HJ; Oxman A; Pottie K; Meerpohl Joerg J; Coello PA; Rind D; Montori VM; Brito JP; Norris S; Elbarbary M; Post P; Nasser M; Shukla V; Jaeschke R; Brozek J; Djulbegovic B; Guyatt G
Description
An account of the resource
In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach to determining the direction and strength of a recommendation. The GRADE describes the balance of desirable and undesirable outcomes of interest among alternative management strategies depending on four domains, namely estimates of effect for desirable and undesirable outcomes of interest, confidence in the estimates of effect, estimates of values and preferences, and resource use. Ultimately, guideline panels must use judgment in integrating these factors to make a strong or weak recommendation for or against an intervention.
2013-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jclinepi.2013.02.003" target="_blank" rel="noreferrer">10.1016/j.jclinepi.2013.02.003</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
2013
Andrews JC
Backlog
Brito JP
Brozek J
Canada
Chronic Obstructive
Coello PA
Djulbegovic B
Elbarbary M
Evidence-based Medicine
Germany
Guyatt G
Health Care
Humans
Jaeschke R
Journal Article
Journal Of Clinical Epidemiology
Meerpohl Joerg J
Montori VM
Nasser M
Norris S
Oxman A
Post P
Pottie K
Practice Guidelines As Topic
Pulmonary Disease
Quality Assurance
Research Design
Rind D
Risk Assessment
Schunemann HJ
Shukla V
Treatment Failure
Treatment Outcome
United States
-
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.lungcan.2006.07.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.lungcan.2006.07.001</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
Development of quality indicators for diagnosis and treatment of patients with non-small cell lung cancer: a first step toward implementing a multidisciplinary, evidence-based guideline
Publisher
An entity responsible for making the resource available
Lung Cancer (amsterdam, Netherlands)
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Netherlands; Evidence-Based Medicine; Neoplasm Staging; Practice Guidelines; Health Care; Carcinoma; Lung Neoplasms/diagnosis/therapy; Non-Small-Cell Lung/diagnosis/therapy; Quality Indicators
Creator
An entity primarily responsible for making the resource
Hermens RP; Ouwens MM; Vonk-Okhuijsen SY; van der Wel Y; Tjan-Heijnen VC; van den Broek LD; Ho VK; Janssen-Heijnen ML; Groen HJ; Grol RP; Wollersheim HC
Description
An account of the resource
BACKGROUND: While developing and distributing clinical practice guidelines are important in optimising clinical healthcare, insight into actual care is necessary to achieve successful implementation. Developing quality indicators may be the first step to becoming aware of actual care. The Dutch national practice guideline Non-small cell lung cancer: staging and treatment is one of the first clinical, multidisciplinary guidelines for oncology in the Netherlands for which quality indicators were developed systematically. We describe indicator development based on this guideline as a practical experience. METHODS: To develop a set of indicators for diagnosis and treatment of patients with non-small cell lung cancer, we systematically achieved consensus on the basis of a national, multidisciplinary, evidence-based guideline and the opinions of professionals and patients. After the researchers extracted the recommendations from the guideline, we carried out a so-called Rand-modified-Delphi procedure. This consisted of three rounds: a national panel of professionals and representatives of the national patient organization scored all recommendations, the professionals had a consensus meeting, and the final set of indicators was e-mailed for a last check. Subsequently, some clinimetric characteristics of this final set were assessed in a practice test. RESULTS: Thirty-two of 83 recommendations were selected in the first round. After the consensus meeting, 8 recommendations met the final criteria and were incorporated into 15 indicators, which were tested in practice. The most successful indicators for quality improvement are indicators that are measurable, have potential for improvement, have a broad range between practices and are applicable to a large part of the population. CONCLUSIONS: For successful implementation of evidence-based guidelines, each new guideline should be developed and tested with a set of indicators based on the guideline. The procedure we describe can serve as an example for other new guidelines.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.lungcan.2006.07.001" target="_blank" rel="noreferrer">10.1016/j.lungcan.2006.07.001</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
2006
Backlog
Carcinoma
Evidence-based Medicine
Groen HJ
Grol RP
Health Care
Hermens RP
Ho VK
Humans
Janssen-Heijnen ML
Journal Article
Lung Cancer (amsterdam, Netherlands)
Lung Neoplasms/diagnosis/therapy
Neoplasm Staging
Netherlands
Non-Small-Cell Lung/diagnosis/therapy
Ouwens MM
Practice Guidelines
Quality Indicators
Tjan-Heijnen VC
van den Broek LD
van der Wel Y
Vonk-Okhuijsen SY
Wollersheim HC
-
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/qshc.2005.017707" target="_blank" rel="noreferrer">http://doi.org/10.1136/qshc.2005.017707</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
Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback
Publisher
An entity responsible for making the resource available
Quality & Safety in Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; United States; Pain Measurement; Professional-Family Relations; Cooperative Behavior; Communication; Pilot Projects; Program Development; Patient Satisfaction; Spirituality; Hospitals; Proxy; Feedback; decision making; Health Care; Quality Assurance; Health Care/organization & administration; Quality Indicators; Palliative Care/psychology/standards; Intensive Care Units/standards; Critical Care/psychology/standards; Voluntary/organization & administration/standards
Creator
An entity primarily responsible for making the resource
Nelson JE; Mulkerin CM; Adams LL; Pronovost PJ
Description
An account of the resource
OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a prototype "bundle" of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance. SETTING: The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc. PATIENTS: Critically ill patients in ICUs for 1, > 3, and > 5 days. MEASUREMENTS AND MAIN RESULTS: Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain assessment and management, as documented in medical records. Application is triggered by specified lengths of ICU stay. Pilot testing in 19 ICUs (review of > 100 patients' records) documented feasibility, while revealing opportunities for quality improvement in clinician-patient/family communication and other key components of ICU palliative care. CONCLUSIONS: The new bundle of measures is a prototype for routine measurement of the quality of palliative care in the ICU. Further investigation is needed to confirm associations between measured processes and outcomes of importance to patients and families, as well as other aspects of validity.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/qshc.2005.017707" target="_blank" rel="noreferrer">10.1136/qshc.2005.017707</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
2006
Adams LL
Backlog
Communication
Cooperative Behavior
Critical Care/psychology/standards
Decision Making
Feedback
Health Care
Health Care/organization & administration
Hospitals
Humans
Intensive Care Units/standards
Journal Article
Mulkerin CM
Nelson JE
Pain Measurement
Palliative Care/psychology/standards
Patient Satisfaction
Pilot Projects
Professional-family Relations
Program Development
Pronovost PJ
Proxy
Quality & Safety in Health Care
Quality Assurance
Quality Indicators
Spirituality
United States
Voluntary/organization & administration/standards
-
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/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2005.11.12.20228</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
Seeking and using families' views to shape children's hospice services
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Great Britain; Adult; Parents; Professional-Family Relations; Focus Groups; Needs Assessment; Consumer Satisfaction; adolescent; Preschool; infant; Newborn; Health Care; Quality Assurance; Child Health Services/organization & administration; Hospice Care/organization & administration
Creator
An entity primarily responsible for making the resource
Maynard L; Rennie T; Shirtliffe J; Vickers D
Description
An account of the resource
Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child's care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being 'just for death' needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child's treatment and management from all care providers.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">10.12968/ijpn.2005.11.12.20228</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
2005
Adolescent
Adult
Backlog
Child
Child Health Services/organization & administration
Consumer Satisfaction
Female
Focus Groups
Great Britain
Health Care
Hospice Care/organization & administration
Humans
Infant
International Journal of Palliative Nursing
Journal Article
Male
Maynard L
Needs Assessment
Newborn
Parents
Preschool
Professional-family Relations
Quality Assurance
Rennie T
Shirtliffe J
Vickers D
-
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
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
Are We Getting It Right? A tool to measure the quality of children's hospice services
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Palliative Care; hospice care; Health Care; Quality Assurance; Pediatric Nursing/standards
Creator
An entity primarily responsible for making the resource
Herd E
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
2004
2004
Backlog
Child
Health Care
Herd E
Hospice Care
Journal Article
Palliative Care
Pediatric Nursing/standards
Quality Assurance
-
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/bmj.326.7393.816" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.326.7393.816</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
Research methods used in developing and applying quality indicators in primary care
Publisher
An entity responsible for making the resource available
Bmj (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Consensus; Quality of Health Care; Evidence-Based Medicine; Practice Guidelines; Health Care; Quality Indicators; Health Services Research/methods; Primary Health Care/standards
Creator
An entity primarily responsible for making the resource
Campbell SM; Braspenning J; Hutchinson A; Marshall MN
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.326.7393.816" target="_blank" rel="noreferrer">10.1136/bmj.326.7393.816</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
2003
2003
Backlog
Bmj (clinical Research Ed.)
Braspenning J
Campbell SM
Consensus
Evidence-based Medicine
Health Care
Health Services Research/methods
Humans
Hutchinson A
Journal Article
Marshall MN
Practice Guidelines
Primary Health Care/standards
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="www.ppprofile.org.uk" target="_blank" rel="noreferrer">www.ppprofile.org.uk</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
Paediatric pain profile
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Pediatrics; Questionnaires; Pain; Health Care; Quality Assurance
Creator
An entity primarily responsible for making the resource
Institute of Child Health; Royal College of Nursing Institute
Description
An account of the resource
The Paediatric Pain Profile is a tool that has been developed specially to help in assessing and monitoring pain in children with severe neurological impairments, especially those with impairments which lead them to be unable to communicate pain through speech.
2003
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
2003
Backlog
Child
Health Care
Institute of Child Health
Journal Article
Pain
Pediatrics
Quality Assurance
Questionnaires
Royal College of Nursing Institute
-
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/10.1177/104990918700400511" target="_blank" rel="noreferrer">http://doi.org/10.1177/104990918700400511</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
An approach to hospice program evaluation. The use of Donabedian theory to measure success
Publisher
An entity responsible for making the resource available
American Journal Of Hospice Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1987
Subject
The topic of the resource
Humans; United States; Quality Assurance; Health Care; Evaluation Studies as Topic; Hospices/standards; Management Audit; Outcome and Process Assessment (Health Care)/methods
Creator
An entity primarily responsible for making the resource
Richie ND
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/104990918700400511" target="_blank" rel="noreferrer">10.1177/104990918700400511</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
1987
1987
American Journal Of Hospice Care
Backlog
Evaluation Studies as Topic
Health Care
Hospices/standards
Humans
Journal Article
Management Audit
Outcome and Process Assessment (Health Care)/methods
Quality Assurance
Richie ND
United States
-
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=6426606" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=6426606</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
Quality assessment in health
Publisher
An entity responsible for making the resource available
British Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
1984
Subject
The topic of the resource
Great Britain; Medical Audit; Health Care; Quality Assurance; State Medicine
Creator
An entity primarily responsible for making the resource
Maxwell RJ
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
1984
1984
Backlog
British Medical Journal
Great Britain
Health Care
Journal Article
Maxwell RJ
Medical Audit
Quality Assurance
State Medicine
-
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/s0305-7372(96)90062-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0305-7372(96)90062-6</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
Quality assurance by specification and achievement of goals in palliative cancer treatment
Publisher
An entity responsible for making the resource available
Cancer Treatment Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Female; Humans; Male; Survival Rate; Adult; Aged; Middle Aged; 80 and over; Neoplasms/mortality; Quality Assurance; Health Care; Neoplasms/therapy; Palliative Care
Creator
An entity primarily responsible for making the resource
Porzsolt F; Wirth A; Mayer-Steinacker R; Schulte M; Negri G; Suhr P; Link KH; Gaus W; Rottinger EM
Description
An account of the resource
As the goals of palliative cancer treatments have not always been clearly specified, this paper describes how frequently the goals of palliative cancer treatment can be specified according to a given definition and how frequently those specified goals can be achieved. The clinical problems of 171 cancer patients were discussed in the Interdisciplinary Oncologic Conference (IOC) of the Cancer Centre University of Ulm (CCUU) and recommendations concerning further diagnostic treatments and/or therapy were provided. These recommendations had been documented and analysed retrospectively. The goals were classified as either cure or palliation or further investigation. If the goal was palliation, it was investigated whether or not the goal was specified as either alleviation of existing problems or prevention of impending problems. The achievement of the specified goals was assessed. Palliation was the goal of treatment in 119 (71%) of the 168 evaluable recommendations. In 83 of the 119 cases (70%), immediate treatment was recommended. The goal was specified in 57 (69%) of the 83 recommendations and could be realized in 24 of 57 specified cases (42%). Patients in this group survived longer (p < 0.01) than patients in whom the goals could not be achieved. Impending problems could be prevented more often (p = 0.001) in 14 out of 18 cases, while existing problems could be alleviated in only 10 out of 34 cases. It is concluded that specification of the goals of palliation is necessary because it is impossible to decide if a goal of treatment could be achieved or not unless the goal of treatment has been defined (as existing/impending problem). The prevention of impending problems could be investigated in prospectively controlled clinical trials.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0305-7372(96)90062-6" target="_blank" rel="noreferrer">10.1016/s0305-7372(96)90062-6</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
1996
80 And Over
Adult
Aged
Backlog
Cancer Treatment Reviews
Female
Gaus W
Health Care
Humans
Journal Article
Link KH
Male
Mayer-Steinacker R
Middle Aged
Negri G
Neoplasms/mortality
Neoplasms/therapy
Palliative Care
Porzsolt F
Quality Assurance
Rottinger EM
Schulte M
Suhr P
Survival Rate
Wirth A
-
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/10.1038/bjc.1992.29" target="_blank" rel="noreferrer">http://doi.org/10.1038/bjc.1992.29</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
Quality and cost in the palliative care of cancer
Publisher
An entity responsible for making the resource available
British Journal Of Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
1992
Subject
The topic of the resource
Palliative Care; Terminal Care; Quality of Health Care; Neoplasms; Health Care; Quality Assurance
Creator
An entity primarily responsible for making the resource
Hancock BW
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/bjc.1992.29" target="_blank" rel="noreferrer">10.1038/bjc.1992.29</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
1992
1992
Backlog
British Journal Of Cancer
Hancock BW
Health Care
Journal Article
Neoplasms
Palliative Care
Quality Assurance
Quality Of Health Care
Terminal 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/10.1080/09581590110066667" target="_blank" rel="noreferrer">http://doi.org/10.1080/09581590110066667</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
Involving users in evaluation: the social relations of user participation in health research
Publisher
An entity responsible for making the resource available
Critical Public Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Research; Policy; Evaluation Studies; Health Care; Evaluation; Government Policy; Health Research; Public Policy; Research Evidence; Social Care
Creator
An entity primarily responsible for making the resource
Truman C; Raine P
Description
An account of the resource
User involvement has become a central tenet of government policy regarding health and social care. Likewise, the role of 'evidence' is seen as being at the heart of effective planning and delivery of health services. (Our Healthier Nation, 1999). This paper examines the role of user involvement in evaluative research within the provision of an evidence base related to practice development. By focusing on the role of participatory research in the creation of an evidence base for healthcare provision, the authors explore the nature and possibilities of user involvement in providing an evidence base within a community mental health service. The paper identifies factors that may facilitate or inhibit user involvement and participation in evaluative research. It is argued that whilst the effective involvement of users may improve the quality and validity of research evidence, user participation in the research process in a meaningful way requires changes in the way that research is commissioned and assessed so that the nature of user involvement may become viable. The authors suggest that the creation of evidence in health research is shaped by the social relations of the research process as well as by the methodologies used.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/09581590110066667" target="_blank" rel="noreferrer">10.1080/09581590110066667</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
2001
Backlog
Critical Public Health
Evaluation
Evaluation Studies
Government Policy
Health Care
Health Research
Journal Article
Policy
Public Policy
Raine P
Research
Research Evidence
Social Care
Truman 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://doi.org/10.1097/00003246-199810000-00032" target="_blank" rel="noreferrer">http://doi.org/10.1097/00003246-199810000-00032</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
Differences in pediatric ICU mortality risk over time
Publisher
An entity responsible for making the resource available
Critical Care 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
Child; Humans; Intensive Care Units; Logistic Models; Prospective Studies; Age Factors; Severity of Illness Index; Risk Assessment; Hospitals; Reproducibility of Results; Predictive Value of Tests; Pediatric; ICU Decision Making; United States/epidemiology; Age Distribution; Health Care; Quality Assurance; Hospital Mortality/trends; Hospital Bed Capacity; Intensive Care/standards/trends; Pediatric/standards/statistics & numerical data/trends; University
Creator
An entity primarily responsible for making the resource
Tilford JM; Roberson PK; Lensing S; Fiser DH
Description
An account of the resource
OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND SETTING: Consecutive admissions (n = 10,833) from 16 pediatric ICUs across the United States that participate in the Pediatric Critical Care Study Group were recorded prospectively. Data collection occurred during a 12-mo period beginning in January 1993. METHODS: Data collection for the development and validation of the original Pediatric Risk of Mortality (PRISM) score occurred from 1980 to 1985. The original PRISM coefficients were used to calculate mortality probabilities in the current data set. Updated estimates of mortality probabilities were calculated, using coefficients from a logistic regression analysis using the original PRISM variable set. Quality-of-care tests were performed using standardized mortality ratios. RESULTS: Risk of mortality from pediatric ICU admission improved considerably between the two periods. Overall, the reduction in mortality risk averaged 15% (p < .001). Analysis of mortality risk by age indicated a large improvement for younger infants. The mortality risk for infants <1 mo improved by 39% (p < .001). Mortality risk improved by 28% (p < .001) for infants between 1 and 12 mos. Analysis of mortality risk by principal diagnosis indicated substantial improvement in respiratory diseases, including respiratory diseases developing in the perinatal period. The mortality risk for respiratory diseases improved by 45% (p < .001). The improvement in mortality risk substantially deteriorated the calibration of the original PRISM severity system (p < .001). As a result of changing mortality risk, the standardized mortality ratios across the 16 pediatric ICUs demonstrated substantial disparities, depending on the choice of models. CONCLUSIONS: This study documents differences in pediatric ICU risk of mortality over time that are consistent with a general improvement in the quality of pediatric intensive care. Despite continued widespread use of the original PRISM, recent improvements in pediatric ICU quality of care have negated its usefulness for many intended applications, including quality-of-care assessment.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00003246-199810000-00032" target="_blank" rel="noreferrer">10.1097/00003246-199810000-00032</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
1998
Age Distribution
Age Factors
Backlog
Child
Critical Care Medicine
Fiser DH
Health Care
Hospital Bed Capacity
Hospital Mortality/trends
Hospitals
Humans
ICU Decision Making
Intensive Care Units
Intensive Care/standards/trends
Journal Article
Lensing S
Logistic Models
Pediatric
Pediatric/standards/statistics & numerical data/trends
Predictive Value of Tests
Prospective Studies
Quality Assurance
Reproducibility of Results
Risk Assessment
Roberson PK
Severity Of Illness Index
Tilford JM
United States/epidemiology
University
-
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/10.1097/00012272-200009000-00006" target="_blank" rel="noreferrer">http://doi.org/10.1097/00012272-200009000-00006</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
Experiencing transitions: an emerging middle-range theory
Publisher
An entity responsible for making the resource available
Advances In Nursing Science
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; Cultural Diversity; Health Status; Life Change Events; Helping Behavior; Outcome and Process Assessment (Health Care); Practice; quality of life; Adaptation; Psychological; Caregivers/psychology; Attitudes; Family/psychology; Health Knowledge; Health Care; Quality Indicators; Psychological Theory; nursing theory; Emigration and Immigration; Menopause/psychology; Nursing Care/methods/psychology/standards; Parenting/psychology
Creator
An entity primarily responsible for making the resource
Meleis AI; Sawyer LM; Im EO; Hilfinger Messias DK; Schumacher K
Description
An account of the resource
Changes in health and illness of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may in turn affect their health. Uncovering these risks may be enhanced by understanding the transition process. As a central concept of nursing, transition has been analyzed, its components identified, and a framework to articulate and to reflect the relationship between these components has been defined. In this article, the previous conceptual analysis of transitions is extended and refined by drawing on the results of five different research studies that have examined transitions using an integrative approach to theory development. The emerging middle-range theory of transitions consists of types and patterns of transitions, properties of transition experiences, facilitating and inhibiting conditions, process indicators, outcome indicators, and nursing therapeutics. The diversity, complexity, and multiple dimensionality of transition experiences need to be further explored and incorporated in future research and nursing practice related to transitions.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00012272-200009000-00006" target="_blank" rel="noreferrer">10.1097/00012272-200009000-00006</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
2000
Adaptation
Advances in Nursing Science
Attitudes
Backlog
Caregivers/psychology
Cultural Diversity
Emigration and Immigration
Family/psychology
Health Care
Health Knowledge
Health Status
Helping Behavior
Hilfinger Messias DK
Humans
Im EO
Journal Article
Life Change Events
Meleis AI
Menopause/psychology
Nursing Care/methods/psychology/standards
nursing theory
Outcome And Process Assessment (health Care)
Parenting/psychology
Practice
Psychological
Psychological Theory
Quality Indicators
Quality Of Life
Sawyer LM
Schumacher K
-
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/10.1191/026921600677786382" target="_blank" rel="noreferrer">http://doi.org/10.1191/026921600677786382</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
Measuring patient outcomes in palliative care: a reliability and validity study of the Support Team Assessment Schedule
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
2000
Subject
The topic of the resource
Palliative Care; Outcome Assessment (Health Care); Neoplasms; Health Care; Quality Assurance
Creator
An entity primarily responsible for making the resource
Carson MG; Fitch MI; Vachon ML
Description
An account of the resource
This study reports the process and results of a psychometric evaluation of a clinical audit tool, the Support Team Assessment Schedule (STAS), used to measure outcomes of palliative care. The STAS was developed in London, UK to audit community palliative care services provided by a support team. The purpose of this study was to evaluate the reliability and validity of the STAS when introduced in a different setting and with different populations from those for which it had been designed. Evaluation of the STAS was completed using multidisciplinary team members, patients and families from a palliative care unit and an oncology unit of a large urban Canadian teaching hospital. The results from the reliability tests revealed a lack of consistency in the use of the tool by team members with simulated patients in clinical scenarios. The validity analysis highlighted the differences between patients, families and health care professionals' perceptions of the same clinical situation. This study provided a valuable perspective on using a previously developed clinical audit tool in different patient populations and clinical settings. Recommendations for future use of the tool are offered.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/026921600677786382" target="_blank" rel="noreferrer">10.1191/026921600677786382</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
2000
Backlog
Carson MG
Fitch MI
Health Care
Journal Article
Neoplasms
Outcome Assessment (health Care)
Palliative Care
Palliative Medicine
Quality Assurance
Vachon ML
-
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/10.1191/026921699677451150" target="_blank" rel="noreferrer">http://doi.org/10.1191/026921699677451150</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
Prospective study of symptom control in 133 cases of palliative care inpatients in Shatin Hospital
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
1999
Subject
The topic of the resource
Female; Hospitalization; Male; Adult; Prospective Studies; Aged; quality of life; 80 and over; Human; Palliative Care; Neoplasms/th [Therapy]; Middle Age; Health Care; Quality Assurance; Hong Kong/ep [Epidemiology]; Neoplasms/ep [Epidemiology]
Creator
An entity primarily responsible for making the resource
Lo RS; Ding A; Chung TK; Woo J
Description
An account of the resource
We report a prospective study assessing the prevalence and severity of physical and nonphysical symptoms, and the benefits from treatment and intervention, in advanced cancer patients presenting to a local palliative care unit in Hong Kong. Patients were assessed by a modified version of the support team assessment schedule (STAS). The study highlighted some symptoms which needed better control, and also reinforced the team morale by demonstrating aspects where there was definite improvement. In general, the STAS was found to be practicable and acceptable by our patients and staff. The most important benefit gained from the study was the successful dissemination of the concept of audit and quality assurance throughout the unit, which is essential for continuous improvement in the future.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/026921699677451150" target="_blank" rel="noreferrer">10.1191/026921699677451150</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
1999
80 And Over
Adult
Aged
Backlog
Chung TK
Ding A
Female
Health Care
Hong Kong/ep [Epidemiology]
Hospitalization
Human
Journal Article
Lo RS
Male
Middle Age
Neoplasms/ep [Epidemiology]
Neoplasms/th [therapy]
Palliative Care
Palliative Medicine
Prospective Studies
Quality Assurance
Quality Of Life
Woo 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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=1301041" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=1301041</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
Quality assurance and total quality management
Publisher
An entity responsible for making the resource available
Medical Journal Of Australia
Date
A point or period of time associated with an event in the lifecycle of the resource
1992
Subject
The topic of the resource
Australia; Human; Health Care; Quality Assurance; Hospital Administration/standards
Creator
An entity primarily responsible for making the resource
Roy LP
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
1992
1992
Australia
Backlog
Health Care
Hospital Administration/standards
Human
Journal Article
Medical Journal Of Australia
Quality Assurance
Roy LP
-
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=8782507" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8782507</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
Quality of health care. Part 2: measuring quality of care
Publisher
An entity responsible for making the resource available
New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Quality of Health Care; Human; Health Care; Quality Assurance; Outcome and Process Assessment (Health Care)/standards
Creator
An entity primarily responsible for making the resource
Brook RH; McGlynn EA; Cleary PD
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
1996
1996
Backlog
Brook RH
Cleary PD
Health Care
Human
Journal Article
McGlynn EA
New England Journal Of Medicine
Outcome and Process Assessment (Health Care)/standards
Quality Assurance
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8793935" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8793935</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
Quality of health care. Part 3: improving the quality of care
Publisher
An entity responsible for making the resource available
New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
United States; Practice Guidelines; Human; Health Care; Quality Assurance; Quality of Health Care; Outcome Assessment (Health Care)
Creator
An entity primarily responsible for making the resource
Chassin MR
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
1996
1996
Backlog
Chassin MR
Health Care
Human
Journal Article
New England Journal Of Medicine
Outcome Assessment (health Care)
Practice Guidelines
Quality Assurance
Quality Of Health Care
United States
-
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
A name given to the resource
Issues in research: Formative evaluation and its relevance to 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
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/10.1016/j.joms.2010.07.082" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.joms.2010.07.082</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
Evidence-based oral and maxillofacial surgery: some pitfalls and limitations
Publisher
An entity responsible for making the resource available
Journal Of Oral And Maxillofacial Surgery
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Humans; Personal Autonomy; Practice Guidelines as Topic; Outcome Assessment (Health Care); Research Design; Total Quality Management; Review Literature as Topic; Research; Ethics; decision making; Oral; Surgery; Health Care; Quality Assurance; Databases as Topic; Dental; Diffusion of Innovation; Evidence-Based Dentistry; Meta-Analysis as Topic; Publication Bias; Randomized Controlled Trials as Topic/classification/standards
Creator
An entity primarily responsible for making the resource
Pitak-Arnnop P; Hemprich A; Pausch NC
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.joms.2010.07.082" target="_blank" rel="noreferrer">10.1016/j.joms.2010.07.082</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
Backlog
Databases as Topic
Decision Making
Dental
Diffusion of Innovation
Ethics
Evidence-Based Dentistry
Health Care
Hemprich A
Humans
Journal Article
Journal Of Oral And Maxillofacial Surgery
Meta-Analysis as Topic
Oral
Outcome Assessment (health Care)
Pausch NC
Personal Autonomy
Pitak-Arnnop P
Practice Guidelines As Topic
Publication Bias
Quality Assurance
Randomized Controlled Trials as Topic/classification/standards
Research
Research Design
Review Literature as Topic
Surgery
Total Quality Management
-
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="http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/" target="_blank" rel="noreferrer">http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/</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
Directives of adequacy of the therapeutic effort in children. Experience of the Pediatric Palliative Care Unit of Pereira Rossell Hospital Center (2009-2015)
Publisher
An entity responsible for making the resource available
Revista Medica Del Uruguay
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
America; Animals; Children; Choice; Chordata; Decision Making; Developing Countries; Eukaryotes; Health Care; Hominidae; Homo; Human Diseases; Latin America; Mammals; Man; Paediatrics; Palliative Care; Pediatrics; Primates; South America; Threshold Countries; Uruguay; Vertebrates
Creator
An entity primarily responsible for making the resource
Pereira I; Koziol S; Mauvezin J; Notejane M; Bernadá M
Description
An account of the resource
Introduction: In certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: To describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died. Methods: Descriptive, retrospective study. Period: 1/January/2009-31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures "TO PERFORM" and "NOT TO PERFORM", time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished. Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: "TO PERFORM": analgesia and comfort care: 100%, admission to moderate care: 86.3% and "NOT TO PERFORM": cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%. Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/" target="_blank" rel="noreferrer">[direct link; no identifier]</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).
2017
America
Animals
Bernadá M
Children
Choice
Chordata
Decision Making
Developing Countries
Eukaryotes
Health Care
Hominidae
Homo
Human Diseases
Koziol S
Latin America
Mammals
Man
Mauvezin J
Notejane M
Paediatrics
Palliative Care
Pediatrics
Pereira I
Primates
Revista Medica Del Uruguay
South America
Threshold Countries
Uruguay
Vertebrates
-
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 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
Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.
Publisher
An entity responsible for making the resource available
Journal Of Social Work In End-of-life & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; Caregivers/caregiving; Children/pediatrics; Health Care; Palliative Care
Creator
An entity primarily responsible for making the resource
Nicholas DB; Beaune L; Barrera M; Blumberg J; Belletrutti M
Description
An account of the resource
Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.
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
Barrera M
Beaune L
Belletrutti M
Bereavement
Blumberg J
Caregivers/caregiving
Children/pediatrics
Health Care
Journal of Social Work in End-of-Life & Palliative Care
May 2016 List
Nicholas DB
Palliative Care