1
40
58
-
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
November 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
November List 2023
URL Address
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</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
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Creator
An entity primarily responsible for making the resource
Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
Description
An account of the resource
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</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).
2023
Adult
Children
Data Analysis Software
Deckers MJ
Descriptive Statistics
Family Attitudes
Female
Fisch-Jessen M
Funding Source
Hauch H
Health Services Needs And Demand
Heilmann ML
Home Health Care
Human
Kruempelmann S
Male
Middle Age
Moeller H
Nagel L
Nathrath M
November List 2023
Palliative Care
Patient Attitudes
Pediatric Care
Pilot Studies
Qualitative Studies
Quality Of Health Care
Quantitative Studies
Semi-Structured Interview
Telehealth
Telemedicine
Vaillant V
Voelker T
Zimmermann J
-
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 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
August List 2023
URL Address
<a href="http://doi.org/10.1002/pd.6311" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pd.6311</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
Fatal fetal anomaly: Experiences of women and their partners
Publisher
An entity responsible for making the resource available
Prenatal Diagnosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Female; Male; Palliative Care; Quality of Health Care; Qualitative Research; Adaptation, Psychological; Pregnancy; Parents; Grief
Creator
An entity primarily responsible for making the resource
Jackson P; Power-Walsh S; Dennehy R; O'Donoghue K
Description
An account of the resource
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth semi-structured interviews and interpretative phenomenological analysis was undertaken. Purpose ful sampling was used to recruit 10 parents, six women and four of their male partners. Parents recruited included those who terminated and continued the pregnancy., RESULTS: Three superordinate themes were identified: 'Attachment and coping', 'There's no place for you in the pregnancy world' and 'Consistency of quality care'. Parents shared the different approaches and level of attachment to their baby that supported their coping. Regardless of the level of attachment, many parents benefited from the acts of remembrance. Parents expressed how they no longer felt they belonged in the 'pregnancy world' and described a need for healthcare professionals to recognise their loss and create a safe and supportive environment in which they could share their grief. Despite this, parents' accounts highlighted variations and inconsistencies in care and service provision., CONCLUSION: Our study highlighted parents' need for consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pd.6311" target="_blank" rel="noreferrer noopener">10.1002/pd.6311</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).
2023
Adaptation, Psychological
August List 2034
Dennehy R
Female
Grief
Humans
Jackson P
Male
O'Donoghue K
Palliative Care
Parents
Power-Walsh S
Pregnancy
Prenatal Diagnosis
Qualitative Research
Quality Of Health Care
-
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
April 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
April List 2023
URL Address
<a href="https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/256521" target="_blank" rel="noreferrer noopener">https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/256521 http://doi.org/</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
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Publisher
An entity responsible for making the resource available
Pacific Rim International Journal of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Creator
An entity primarily responsible for making the resource
Nedruetai P; Puangpaka K; Bih-Ching S
Description
An account of the resource
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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).
2022
Adolescence
Adult
anxiety
April List 2023
Bih-Ching S
Content Analysis
cultural competence
cultural sensitivity
Culture
Descriptive Research
Emotions
Evaluation
Fear
Female
field notes
Forgiveness
Grief
Health Knowledge
Health Personnel
Hope
Hospitals Community
Human
Interviews
Medical Records
Nedruetai P
Pacific Rim International Journal of Nursing Research
Perinatal Death
Psychosocial Factors
Puangpaka K
Purposive Sample
Qualitative Studies
Quality Of Health Care
Reflection
Self Concept
Self-Talk
Social Norms
Thailand
Women
-
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 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/10.1111/jpc.15851" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.15851</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
Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions
Publisher
An entity responsible for making the resource available
Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; paediatrics; delivery of health care; quality of health care; health policy; health services accessibility
Creator
An entity primarily responsible for making the resource
Ekberg S; Bowers A; Bradford N; Ekberg K; Rolfe M; Elvidge N; Cook R; Roberts SJ; Howard C; Agar M; Deleuil R; Fleming S; Hynson J; Jolly A; Heywood M; Waring S; Rice T; Vickery A
Description
An account of the resource
AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. RESULTS: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. CONCLUSIONS: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jpc.15851" target="_blank" rel="noreferrer noopener">10.1111/jpc.15851</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).
2021
Agar M
Bowers A
Bradford N
Cook R
Deleuil R
Delivery of Health Care
Ekberg K
Ekberg S
Elvidge N
February 2022 List
Fleming S
Health Policy
Health Services Accessibility
Heywood M
Howard C
Hynson J
Jolly A
Journal of Paediatrics and Child Health
Paediatrics
Palliative Care
Quality Of Health Care
Rice T
Roberts SJ
Rolfe M
Vickery A
Waring S
-
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
March 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
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.01.007</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
Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
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
2021
Subject
The topic of the resource
pediatric; palliative care; funding; curriculum; quality of health care; financing
Creator
An entity primarily responsible for making the resource
Feudtner C; Faerber JA; Rosenberg AR; Kobler K; Baker JN; Bowman BA; Wolfe J; Friebert S
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.007</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).
2021
Baker JN
Bowman BA
Curriculum
Faerber JA
Feudtner C
Financing
Friebert S
Funding
Journal of Pain and Symptom Management
Kobler K
March 2021 List
Palliative Care
Pediatric
Quality Of Health Care
Rosenberg AR
Wolfe J
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318818022</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
Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period
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
2018
Subject
The topic of the resource
cancer; Palliative care; palliative medicine; pediatrics; quality of health care; symptom assessment
Creator
An entity primarily responsible for making the resource
Zernikow B; Szybalski K; Hubner-Mohler B; Wager J; Paulussen M; Lassay L; Jorch N; Weber C; Schneider D T; Janssen G; Oommen P T; Kuhlen M; Brune T; Wieland R; Schundeln M; Kremens B; Langler A; Prokop A; Kiener R; Niehues T; Rose M; Baumann-Kohler M; Poppelmann M; Thorer H; Irnich M; Sinha K; Wolfe J; Schmidt P
Description
An account of the resource
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care. DESIGN:: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015). Departments invited parents whose children died due to cancer 5 years earlier to participate. Identical semi-structured interviews were conducted with each cohort by the Survey of Caring for Children with Cancer. In addition, departments provided information on their pediatric palliative care infrastructure. PARTICIPANTS:: In total, 124 families participated; 73% of interviews were conducted with mothers, 18% with fathers, and 9% with both parents. RESULTS:: Parents' perception of symptom occurrence, symptom burden, and effectiveness of symptom-related treatment remained stable over the 10-year period. Over time, the availability of pediatric palliative care ( p < 0.001) as well as quality and satisfaction ratings of care ( p < 0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p = 0.009). Along with this development, more families had the chance to plan the location of death ( p = 0.003), and more children died at the preferred location ( p = 0.001). CONCLUSION:: Advances in the availability of pediatric palliative care were associated with improvement in some aspects of quality of care (e.g. location of death) while other aspects, such as effectiveness of symptom management, remained unchanged. Further research is required to determine whether additional improvement in structural quality may increase the effectiveness of symptom management.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">10.1177/0269216318818022</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).
2018
Baumann-Kohler M
Brune T
Cancer
Hubner-Mohler B
Irnich M
Janßen G
Jorch N
Kiener R
Kremens B
Kuhlen M
Langler A
Lassay L
Niehues T
Oncology 2019 List
Oommen P T
Palliative Care
Palliative Medicine
Paulussen M
Pediatrics
Poppelmann M
Prokop A
Quality Of Health Care
Rose M
Schmidt P
Schneider D T
Schundeln M
Sinha K
Symptom Assessment
Szybalski K
Thorer H
Wager J
Weber C
Wieland R
Wolfe J
Zernikow B
-
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
April 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
April 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-312731</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
Individualised advance care planning in children with life-limiting conditions
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Description
An account of the resource
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</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).
2018
Advance Care Planning/og [Organization & Administration]
Advance Care Planning/st [Standards]
April 2019 List
Archives of Disease in Childhood
Attitude To Health
Child
Child Health Services/og [organization & Administration]
Child Health Services/st [Standards]
de Kruiff CC
Evidence-Based Medicine/mt [Methods]
Female
Humans
Kremer L C M
Loeffen EAH
Male
Netherlands
Palliative Care/og [Organization & Administration]
Palliative Care/px [psychology]
Palliative Care/st [standards]
Parents/px [psychology]
Patient Satisfaction/sn [Statistics & Numerical Data]
Pediatric Palliative Care-Individualized Care Plan Working Group
Pilot Projects
Practice Guidelines As Topic
Quality Of Health Care
Schuiling-Otten MA
Tissing WJE
Verhagen AA
-
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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.22034/APJCP.2018.19.5.1303" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.22034/APJCP.2018.19.5.1303</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
Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems
Publisher
An entity responsible for making the resource available
Asian Pacific Journal of Cancer Prevention
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care/og [Organization & Administration]; Neoplasms/th [Therapy]; Follow-Up Studies; Prognosis; Child; Humans; Qualitative Research; Quality of Health Care; Cancer Care Facilities/og [Organization & Administration]; Cancer Care Facilities/ut [Utilization]; Delivery of Health Care/og [Organization & Administration]; Health Services Accessibility/og [Organization & Administration]
Creator
An entity primarily responsible for making the resource
Khanali ML; Rassouli M; Eshghi P; Zendedel K; Akbari Sari A; Heravi Karimooi M; Tahmasebi M; Shirin Abadi Farahani A
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.22034/APJCP.2018.19.5.1303" target="_blank" rel="noreferrer noopener">10.22034/APJCP.2018.19.5.1303</a>
2018
Akbari Sari A
Asian Pacific Journal Of Cancer Prevention
Cancer Care Facilities/og [Organization & Administration]
Cancer Care Facilities/ut [Utilization]
Child
Delivery of Health Care/og [Organization & Administration]
Developing World 2018 List
Eshghi P
Follow-up Studies
Health Services Accessibility/og [Organization & Administration]
Heravi Karimooi M
Humans
Khanali ML
Neoplasms/th [therapy]
Palliative Care/og [Organization & Administration]
Prognosis
Qualitative Research
Quality Of Health Care
Rassouli M
Shirin Abadi Farahani A
Tahmasebi M
Zendedel K
-
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
December 2018 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
December 2018 List
URL Address
<a href="https://scholarship.shu.edu/cgi/viewcontent.cgi?article=1038&context=final-projects" target="_blank" rel="noreferrer noopener"> https://scholarship.shu.edu/cgi/viewcontent.cgi?article=1038&context=final-projects</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
Care of the Bereaved Mother
Publisher
An entity responsible for making the resource available
Care Of The Bereaved Mother
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Quality of Health Care; Human; Interviews; Nurse-Patient Relations; Parental Attitudes; Support Psychosocial; Mothers -- Psychosocial Factors; Bereavement -- Evaluation; Grief -- Evaluation; Neonatal Intensive Care Nursing -- Education; Nursing Role; Patient Centered Care; Perinatal Death -- Psychosocial Factors; Support Groups
Creator
An entity primarily responsible for making the resource
Rocio GI
Description
An account of the resource
Purpose: Caring for the bereaved mother can be a challenging undertaking for healthcare professionals who unless have suffered a similar loss, can find it difficult to relate with bereaved parents. The purpose of this DNP project is to research grief and bereavement to better understand the parental bereavement experience and to develop an education lesson for MBU nurses caring for bereaved patients. It is essential to provide nurses with insight into the bereavement experience of parents who have suffered the loss of a child, so they can provide support that validates the parents' grief and helps facilitate spiritual, emotional, or cultural rituals. Appropriate interventions can improve quality of care and promote healing. Method: The project was implemented in collaboration with the NICU nursery, the NICU nursing staff, and the parents' bereavement support group coordinator. The goal was to research the bereavement experience of the parents, but more specifically the mother, through evidencebased research, interviews with NICU nurses of their interaction with bereaved parents, review of the existing bereavement protocol in the hospital, and observing a parents' bereavement support group to hear firsthand accounts of parents' experiences and perceptions of their nursing care by healthcare professionals. This gathered data was then structured into an education lesson for the nurses of the MBU. Findings: The education lesson was positively reviewed by the stakeholders. Their feedback stated the information was relevant and brought awareness and insight for nurses caring for these vulnerable patients during a difficult time. The coordinator of the parents' bereavement support group suggested the lesson would be beneficial for newly hired nurses during orientation. Clinical Relevance: Through education, nurses gain knowledge and an understanding of what their role is in the bereavement process of the mother who has suffered an unexpected perinatal loss. Learning to foster a caring and trusting relationship with patients creates a safe environment and forms a partnership with patients, which thus results in appropriate interventions that meet the specific needs of the mother. This also facilitates the development of an individualized plan of care that provides support, comfort and guidance through the bereavement process. Guiding parents through the bereavement process is an essential component of care that contributes to normal progression through the stages of grief and promotes wellbeing.
2018
Bereavement -- Evaluation
Care Of The Bereaved Mother
December 2018 List
Grief -- Evaluation
Human
Interviews
Mothers -- Psychosocial Factors
Neonatal Intensive Care Nursing -- Education
Nurse-patient Relations
nursing role
Parental Attitudes
Patient Centered Care
Perinatal Death -- Psychosocial Factors
Quality Of Health Care
Rocio GI
Support Psychosocial
Support Groups
-
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/S0140-6736(14)61144-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(14)61144-2</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
Palliative care: more than one chance to get it right
Publisher
An entity responsible for making the resource available
Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Palliative Care; Great Britain; Critical Pathways; Health Priorities; Quality of Health Care
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(14)61144-2" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)61144-2</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
2014-07
2014
Backlog
Critical Pathways
Great Britain
Health Priorities
Humans
Journal Article
Lancet
Palliative Care
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/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2013.19.10.495</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
Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units
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
2013
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; Adult; Parents; Attitude of Health Personnel; Attitude to Death; Professional-Family Relations; Communication; Brazil; Pediatric; Preschool; Quality of Health Care
Creator
An entity primarily responsible for making the resource
Abib El Halal Gilda MC; Piva JP; Lago PM; El Halal MGS; Cabral FC; Nilson C; Garcia Pedro CR
Description
An account of the resource
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">10.12968/ijpn.2013.19.10.495</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
Abib El Halal Gilda MC
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
Brazil
Cabral FC
Child
Communication
Decision Making
El Halal MGS
Female
Garcia Pedro CR
Humans
Infant
Intensive Care Units
International Journal of Palliative Nursing
Journal Article
Lago PM
Male
Nilson C
Parents
Pediatric
Piva JP
Preschool
Professional-family Relations
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/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2010.12</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
Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Canada; Education; Professional-Family Relations; Interdisciplinary Communication; Program Evaluation; Curriculum; Quality of Health Care; Patient Advocacy; Models; Continuing/methods; Educational; Pediatrics/education
Creator
An entity primarily responsible for making the resource
Solomon MZ; Browning DM; Dokken DL; Merriman MP; Rushton CH
Description
An account of the resource
OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">10.1001/archpediatrics.2010.12</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
2010
Archives Of Pediatrics & Adolescent Medicine
Backlog
Browning DM
Canada
Child
Continuing/methods
Curriculum
Dokken DL
Education
Educational
Humans
Interdisciplinary Communication
Journal Article
Merriman MP
Models
Palliative Care
Patient Advocacy
Pediatrics/education
Professional-family Relations
Program Evaluation
Quality Of Health Care
Rushton CH
Solomon MZ
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/10.1001/jama.2009.109" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.2009.109</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
Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy"
Publisher
An entity responsible for making the resource available
Journal Of The American Medical Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Male; Middle Aged; Family Relations; Hospices; Quality of Health Care; Primary Health Care; patient care team; referral and consultation; empathy; Neoplasms; Palliative Care/standards; social support
Creator
An entity primarily responsible for making the resource
Teno JM; Connor SR
Description
An account of the resource
Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.2009.109" target="_blank" rel="noreferrer">10.1001/jama.2009.109</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
2009
Backlog
Connor SR
Empathy
Family Relations
Hospices
Humans
Journal Article
Journal Of The American Medical Association
Male
Middle Aged
Neoplasms
Palliative Care/standards
Patient Care Team
Primary Health Care
Quality Of Health Care
Referral And Consultation
Social Support
Teno JM
-
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.2008.12.021" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.arcped.2008.12.021</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
Transition from pediatric to adult care: experience of a cystic fibrosis care center]
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
2009
Subject
The topic of the resource
Female; Humans; Male; Young Adult; Continuity of Patient Care; Quality of Health Care; Adolescent Health Services; adolescent; Adolescent Transitions; Cystic Fibrosis/therapy; France
Creator
An entity primarily responsible for making the resource
Malbrunot-Wagner AC; Bonnemains C; Troussier F; Darviot E; Chiffoleau M; Person C; Urban T; Ginies JL
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the management of this transition in the CF care center of Angers, France. PATIENTS AND METHOD: From their medical files, we analyzed the transfer of 22 patients with CF from pediatric to adult care. The perceptions of patients and caregivers regarding this transition were evaluated using anonymous questionnaires. RESULTS: The initial objective was to transfer patients around 18 years of age, offering them 3 or 4 joint consultations with a pediatrician and adult lung specialist. The median age of transfer was 22 years and the median duration of the transition period was 9 months. Half of the patients had only 1 joint transfer consultation during transition. The patient reaching the age of 18 and maturity were the most common criteria mentioned for transfer. All highlighted problems leaving the pediatric team they had grown attached to and its familiar environment. Caregivers described the transfer as a success, whereas half of the patients were dissatisfied with it, with both patients and caregivers indicating that the transition was too short without enough joint consultations. CONCLUSIONS: This study shows that this period is a major life event for the patient with CF. The transition process must be organized with the patient and independent behaviors should be encouraged. Adult and pediatric teams need to cooperate. Based on this experience and former medical data, we suggest a transition program for patients with CF.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.arcped.2008.12.021" target="_blank" rel="noreferrer">10.1016/j.arcped.2008.12.021</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
2009
Adolescent
Adolescent Health Services
Adolescent Transitions
Archives de Pediatrie
Backlog
Bonnemains C
Chiffoleau M
Continuity Of Patient Care
Cystic Fibrosis/therapy
Darviot E
Female
France
Ginies JL
Humans
Journal Article
Malbrunot-Wagner AC
Male
Person C
Quality Of Health Care
Troussier F
Urban T
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/adc.2006.103721" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2006.103721</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
Transition of care from paediatric to adult services: one part of improved health services for adolescents
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Great Britain; Quality of Health Care; adolescent; Adolescent Transitions; Continuity of Patient Care/standards; Adolescent Health Services/standards; Delivery of Health Care/standards; State Medicine/standards
Creator
An entity primarily responsible for making the resource
Viner RM
Description
An account of the resource
Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a cultural shift in NHS staff attitudes and training is required. Secondly, systems must change to ensure that all paediatric chronic illness and disability services have effective transition programmes in place. Thirdly, young patients need to be trained and empowered to allow them to be an effective partner in their own transition. Improvement of this transition is merely one part of a wider need to improve health care for adolescents.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2006.103721" target="_blank" rel="noreferrer">10.1136/adc.2006.103721</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
Adolescent
Adolescent Health Services/standards
Adolescent Transitions
Archives of Disease in Childhood
Backlog
Continuity of Patient Care/standards
Delivery of Health Care/standards
Great Britain
Humans
Journal Article
Quality Of Health Care
State Medicine/standards
Viner RM
-
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.a3152" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.a3152</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
Publication guidelines for quality improvement studies in health care: evolution of the SQUIRE project
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
2009
Subject
The topic of the resource
Consensus; Practice Guidelines as Topic; Interprofessional Relations; Quality of Health Care; Forecasting; RDF Project; Editorial Policies; Publishing/standards
Creator
An entity primarily responsible for making the resource
Davidoff F; Batalden PB; Stevens D; Ogrinc G; Mooney SE; SQUIRE development group
Description
An account of the resource
In 2005 we published draft guidelines for reporting studies of quality improvement, as the initial step in a consensus process for development of a more definitive version. The current article contains the revised version, which we refer to as standards for quality improvement reporting excellence (SQUIRE). This narrative progress report summarises the special features of improvement that are reflected in SQUIRE, and describes major differences between SQUIRE and the initial draft guidelines. It also briefly describes the guideline development process; considers the limitations of and unresolved questions about SQUIRE; describes ancillary supporting documents and alternative versions under development; and discusses plans for dissemination, testing, and further development of SQUIRE.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.a3152" target="_blank" rel="noreferrer">10.1136/bmj.a3152</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
2009
Backlog
Batalden PB
Bmj (clinical Research Ed.)
Consensus
Davidoff F
Editorial Policies
Forecasting
Interprofessional Relations
Journal Article
Mooney SE
Ogrinc G
Practice Guidelines As Topic
Publishing/standards
Quality Of Health Care
RDF Project
SQUIRE development group
Stevens 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
URL Address
<a href="http://doi.org/10.1542/peds.2007-3042" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2007-3042</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
What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; United States; Socioeconomic Factors; Quality of Health Care; Terminal Care/methods/standards; Outcome and Process Assessment (Health Care)/methods; Palliative Care/methods/standards
Creator
An entity primarily responsible for making the resource
Linton JM; Feudtner C
Description
An account of the resource
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in pediatric palliative and end-of-life care, retaining 19 studies for evaluation. We then augmented this search with a broader review of the literature on the mechanisms of differences/disparities in adult palliative and end-of-life care, general pediatrics, adult medicine, and pain. RESULTS: The concept of reciprocal interaction can organize and illuminate interacting mechanisms across 3 levels of human organization, namely, broader contextual influences on patients and clinicians, specific patient-provider engagements, and specific patients. By using this rubric, we identified 10 distinct mechanisms proposed in the literature. Broader contextual influences include health care system structures; access to care; and poverty, socioeconomic status, social class, and family structure. Patient-clinician engagements encompass clinician bias, prejudice, and stereotypes; concordance of race; quality of information exchange; and trust. Patient-specific features include perceptions of control; religion and spirituality; and medical conditions. CONCLUSIONS: Differences and disparities in pediatric palliative and end-of-life care can be understood as arising from various mechanisms that interact across different levels of human organization, and this interactive multilevel model should be considered in designing studies or planning interventions to understand differences and to ameliorate disparities.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-3042" target="_blank" rel="noreferrer">10.1542/peds.2007-3042</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
Backlog
Child
Feudtner C
Humans
Journal Article
Linton JM
Outcome and Process Assessment (Health Care)/methods
Palliative Care/methods/standards
Pediatrics
Quality Of Health Care
Socioeconomic Factors
Terminal Care/methods/standards
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/10.1111/j.1475-6773.2007.00721.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1475-6773.2007.00721.x</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1475-6773.2007.00721.x/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1111/j.1475-6773.2007.00721.x/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
A Systematic Review of Measures of End-of-Life Care and Its Outcomes
Publisher
An entity responsible for making the resource available
Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Outcome and Process Assessment (Health Care); Quality of Health Care; dying; Essential Data Set; end-of-life care; measures
Creator
An entity primarily responsible for making the resource
Mularski RA; Dy SM; Shugarman LR; Wilkinson A; Lynn J; Shekelle PG; Morton SC; Sun VC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Lorenz KA
Description
An account of the resource
Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.Study Design. Systematic review of end-of-life care literature.Extraction Methods. Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.Principal Findings. Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies.Conclusions. In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1475-6773.2007.00721.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2007.00721.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2007
Backlog
Dy SM
Dying
End-of-life Care
Essential Data Set
Health Services Research
Hilton LK
Hughes RG
Journal Article
Lorenz KA
Lynn J
Maglione M
measures
Morton SC
Mularski RA
Outcome And Process Assessment (health Care)
Quality Of Health Care
Rhodes SL
Rolon C
Shekelle PG
Shugarman LR
Sun VC
Wilkinson 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/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-70</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
Key factors affecting dying children and their families
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
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; Humans; Professional-Family Relations; Communication; Quality of Health Care; Stress; adolescent; bereavement; decision making; Family/psychology; Palliative Care/standards; Terminal Care/standards; Psychological/etiology
Creator
An entity primarily responsible for making the resource
Hinds PS; Schum L; Baker JN; Wolfe J
Description
An account of the resource
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-70</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
Backlog
Baker JN
Bereavement
Child
Communication
Decision Making
Family/psychology
Hinds PS
Humans
Journal Article
Journal of Palliative Medicine
Palliative Care/standards
Professional-family Relations
Psychological/etiology
Quality Of Health Care
Schum L
Stress
Terminal Care/standards
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1200/JCO.2005.04.010" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2005.04.010</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
Parent and physician perspectives on quality of care at the end of life in children with cancer
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
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; Physician-Patient Relations; Adult; Health Care Surveys; Parent-Child Relations; Communication; Pain; Odds Ratio; Quality of Health Care; quality of life; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; N.I.H.; Terminal Care/standards; Extramural; Physicians/standards
Creator
An entity primarily responsible for making the resource
Mack JW; Hilden JM; Watterson J; Moore C; Turner B; Grier HE; Weeks JC; Wolfe J
Description
An account of the resource
PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted between 1997 and 2001 of 144 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) or Children's Hospitals and Clinics of St Paul and Minneapolis, MN, between 1990 and 1999 (65% of those located and eligible) and 52 pediatric oncologists. RESULTS: In multivariable models, higher parent ratings of physician care were associated with physicians giving clear information about what to expect in the end-of-life period (odds ratio [OR] = 19.90, P = .02), communicating with care and sensitivity (OR = 7.67, P < .01), communicating directly with the child when appropriate (OR = 11.18, P < .01), and preparing the parent for circumstances surrounding the child's death (OR = 4.84, P = .03). Parent reports of the child's pain and suffering were not significant correlates of parental ratings of care (P = .93 and .35, respectively). Oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR = 0.15, P = .01) and more than 10 hospital days in the last month of life (OR = 0.24, P < .01). Parent-rated communication factors were not correlates of oncologist-rated care. No association was found between parent and physician care ratings (P = .88). CONCLUSION: For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2005.04.010" target="_blank" rel="noreferrer">10.1200/JCO.2005.04.010</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
Communication
Extramural
Female
Grier HE
Health Care Surveys
Hilden JM
Humans
Infant
Journal Article
Journal Of Clinical Oncology
Mack JW
Male
Moore C
N.I.H.
Newborn
Non-U.S. Gov't
Odds Ratio
Pain
Parent-child Relations
Physician-patient Relations
Physicians/standards
Preschool
Quality Of Health Care
Quality Of Life
Research Support
Terminal Care/standards
Turner B
Watterson J
Weeks JC
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.healthpol.2003.12.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.healthpol.2003.12.008</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
Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts
Publisher
An entity responsible for making the resource available
Health Policy (amsterdam, Netherlands)
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; United States; Adult; Health Policy; Health Services Research; Quality of Health Care; Delphi Technique; Survivors; Non-U.S. Gov't; Research Support; Neoplasms
Creator
An entity primarily responsible for making the resource
Mertens AC; Cotter KL; Foster BM; Zebrack BJ; Hudson MM; Eshelman D; Loftis L; Sozio M; Oeffinger KC
Description
An account of the resource
OBJECTIVES: To identify barriers to, models of care for, and initiatives to improve health care of adult survivors of childhood cancer. METHODS: Seventeen health care policy experts were asked to respond to the three objectives through a three-iterative Delphi process. RESULTS: Key barriers identified were that primary care physicians are unfamiliar with the health problems of survivors and survivors are often unaware of their risks. The recommended model of care would incorporate the chronic disease management model. Highest priority initiatives recommended were targeted education of primary care physicians and survivors, development and evaluation of standards of survivorship care, and a national web-based information center. CONCLUSIONS: The insights and recommendations of the panel provide a foundation intended to improve health care of cancer survivors.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.healthpol.2003.12.008" target="_blank" rel="noreferrer">10.1016/j.healthpol.2003.12.008</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
2004
Adult
Backlog
Cotter KL
Delphi Technique
Eshelman D
Foster BM
Health Policy
Health Policy (amsterdam, Netherlands)
Health Services Research
Hudson MM
Humans
Journal Article
Loftis L
Mertens AC
Neoplasms
Non-U.S. Gov't
Oeffinger KC
Quality Of Health Care
Research Support
Sozio M
Survivors
United States
Zebrack BJ
-
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.ijcard.2003.06.019" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ijcard.2003.06.019</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
Survey of specialized tertiary care facilities for adults with congenital heart disease
Publisher
An entity responsible for making the resource available
International Journal Of Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Female; Humans; Male; Adult; Health Care Surveys; Questionnaires; Middle Aged; Treatment Outcome; Program Evaluation; Survival Analysis; Quality of Health Care; adolescent; patient care team; Adolescent Transitions; Hospitalization/statistics & numerical data; Heart Defects; Resource Allocation; Cardiac Care Facilities/organization & administration/utilization; Congenital/diagnosis/mortality/surgery; Europe/epidemiology; North America/epidemiology; Patient Admission/statistics & numerical data; Reoperation/utilization
Creator
An entity primarily responsible for making the resource
Niwa K; Perloff JK; Webb GD; Murphy D; Liberthson R; Warnes CA; Gatzoulis MA
Description
An account of the resource
BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest, the first facilities necessarily evolved without preexisting guidelines or interaction. OBJECTIVES: To characterize the major features of the six original and largest tertiary adults CHD facilities. METHODS: Written questionnaire sent to six participating facilities in North America and Europe. Information was analyzed centrally. RESULTS: All but one facilities was established over 20 years ago, and each cares for over 1500 patients. Hospital admissions ranged from 100 to 660 patients/unit/year. Of the total number of registered patients, 52-81% had undergone one or more reparative surgeries. Reoperations constituted 25-80% of the 50-170 operations/unit/year. Overall mean surgical mortality was 1.9%/year. Inpatient and outpatient care was provided in adult (n = 4) or both adult and pediatric (n = 2) settings. All six facilities enjoyed close collaboration between adult and pediatric cardiologists, cardiac surgeons, nurse specialists and cardiac and non-cardiac consultants. Training and research were pivotal activities. CONCLUSIONS: Provision of comprehensive care by multidisciplinary teams including adult and pediatric cardiologists, cardiac surgeons, specialized nurses and other cardiac and non-cardiac consultants was the unifying feature for all six tertiary care facilities reported here. There were minor differences among them based on available resources, local expertise and national health care policies. There appears to be a significant shortfall in tertiary care provision for the adult with CHD that requires further planning and resource allocation. These data may be useful for new and evolving adult CHD services.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijcard.2003.06.019" target="_blank" rel="noreferrer">10.1016/j.ijcard.2003.06.019</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Adolescent
Adolescent Transitions
Adult
Backlog
Cardiac Care Facilities/organization & administration/utilization
Congenital/diagnosis/mortality/surgery
Europe/epidemiology
Female
Gatzoulis MA
Health Care Surveys
Heart Defects
Hospitalization/statistics & numerical data
Humans
International Journal Of Cardiology
Journal Article
Liberthson R
Male
Middle Aged
Murphy D
Niwa K
North America/epidemiology
Patient Admission/statistics & numerical data
Patient Care Team
Perloff JK
Program Evaluation
Quality Of Health Care
Questionnaires
Reoperation/utilization
Resource Allocation
Survival Analysis
Treatment Outcome
Warnes CA
Webb GD
-
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/s0885-3924(01)00406-7" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(01)00406-7</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
Do hospital-based palliative teams improve care for patients or families at the end of life?
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
2002
Subject
The topic of the resource
Humans; Outcome and Process Assessment (Health Care); Palliative Care; Family; Hospitals; patient care team; Quality of Health Care; Terminal Care
Creator
An entity primarily responsible for making the resource
Higginson IJ; Finlay I; Goodwin DM; Cook AM; Hood K; Edwards AG; Douglas HR; Norman CE
Description
An account of the resource
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the sample's standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice. [References: 66]
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(01)00406-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00406-7</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
2002
Backlog
Cook AM
Douglas HR
Edwards AG
Family
Finlay I
Goodwin DM
Higginson IJ
Hood K
Hospitals
Humans
Journal Article
Journal of Pain and Symptom Management
Norman CE
Outcome And Process Assessment (health Care)
Palliative Care
Patient Care Team
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/10.1089/10966210360510082" target="_blank" rel="noreferrer">http://doi.org/10.1089/10966210360510082</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 end-of-life care: patient, caregiver, and clinician perceptions
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Female; Humans; Male; Cohort Studies; Adult; Attitude of Health Personnel; Interpersonal Relations; Aged; Middle Aged; Attitude to Death; Physicians; Qualitative Research; Quality of Health Care; Cost of Illness; Washington; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Family/psychology; Palliative Care/psychology; Terminal Care/psychology; Patients/psychology
Creator
An entity primarily responsible for making the resource
Farber SJ; Egnew TR; Herman-Bertsch JL; Taylor TR; Guldin GE
Description
An account of the resource
CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES: Perceptions of participants on EOL issues. RESULTS: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/10966210360510082" target="_blank" rel="noreferrer">10.1089/10966210360510082</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
2003
80 And Over
Adult
Aged
Attitude Of Health Personnel
Attitude To Death
Backlog
Caregivers/psychology
Cohort Studies
Cost Of Illness
Egnew TR
Family/psychology
Farber SJ
Female
Guldin GE
Herman-Bertsch JL
Humans
Interpersonal Relations
Interviews
Journal Article
Journal of Palliative Medicine
Male
Middle Aged
Non-U.S. Gov't
Palliative Care/psychology
Patients/psychology
Physicians
Qualitative Research
Quality Of Health Care
Research Support
Taylor TR
Terminal Care/psychology
Washington
-
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/10.1097/00003246-200201000-00032" target="_blank" rel="noreferrer">http://doi.org/10.1097/00003246-200201000-00032</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
Parental perspectives on end-of-life care in the pediatric intensive care unit
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
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; Terminal Care; Adult; Withholding Treatment; Prognosis; Questionnaires; Boston; Pain; Quality of Health Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Parents/psychology
Creator
An entity primarily responsible for making the resource
Meyer EC; Burns JP; Griffith JL; Truog RD
Description
An account of the resource
OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00003246-200201000-00032" target="_blank" rel="noreferrer">10.1097/00003246-200201000-00032</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
2002
Adult
Backlog
Boston
Burns JP
Child
Critical Care Medicine
Death and Euthanasia
Decision Making
Empirical Approach
Female
Griffith JL
Humans
ICU Decision Making
Intensive Care Units
Journal Article
Male
Meyer EC
Pain
Parents/psychology
Pediatric
Prognosis
Quality Of Health Care
Quality Of Life
Questionnaires
Terminal Care
Truog RD
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/10.1111/j.1365-2214.2004.00391.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2214.2004.00391.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
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; Cross-Sectional Studies; Female; Humans; Male; Adult; Attitude to Health; Health Services Accessibility; Socioeconomic Factors; Patient Acceptance of Health Care; Sex Factors; Quality of Health Care; Respite Care; Non-U.S. Gov't; Research Support; social support; caregivers; Cerebral Palsy/complications/rehabilitation
Creator
An entity primarily responsible for making the resource
Damiani G; Rosenbaum P; Swinton M; Russell D
Description
An account of the resource
OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). RESULTS: Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. CONCLUSION: Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2214.2004.00391.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2004.00391.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Adult
Attitude To Health
Backlog
Caregivers
Cerebral Palsy/complications/rehabilitation
Child
Child: Care, Health and Development
Cross-sectional Studies
Damiani G
Female
Health Services Accessibility
Humans
Journal Article
Male
Non-U.S. Gov't
Patient Acceptance of Health Care
Quality Of Health Care
Research Support
Respite Care
Rosenbaum P
Russell D
Sex Factors
Social Support
Socioeconomic Factors
Swinton M
-
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="http://doi.org/10.1136/bmj.327.7408.222-b" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.327.7408.222-b</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
In search of a good death: Can children with life threatening illness and their families experience a good death?
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
Child; Humans; Critical Illness; Quality of Health Care; Palliative Care/standards; Child Health Services/standards
Creator
An entity primarily responsible for making the resource
Beaune L; Newman C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.327.7408.222-b" target="_blank" rel="noreferrer">10.1136/bmj.327.7408.222-b</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
Beaune L
Bmj (clinical Research Ed.)
Child
Child Health Services/standards
Critical Illness
Humans
Journal Article
Newman C
Palliative Care/standards
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/10.1136/bmj.328.7432.162" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.328.7432.162</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
Using industrial processes to improve patient 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
2004
Subject
The topic of the resource
Humans; Great Britain; Quality of Health Care; Occupational Health; decision making; Patient Care/standards; Waiting Lists; State Medicine/standards; Industry/methods/standards
Creator
An entity primarily responsible for making the resource
Young T; Brailsford S; Connell C; Davies R; Harper P; Klein JH
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.328.7432.162" target="_blank" rel="noreferrer">10.1136/bmj.328.7432.162</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
2004
2004
Backlog
Bmj (clinical Research Ed.)
Brailsford S
Connell C
Davies R
Decision Making
Great Britain
Harper P
Humans
Industry/methods/standards
Journal Article
Klein JH
Occupational Health
Patient Care/standards
Quality Of Health Care
State Medicine/standards
Waiting Lists
Young T
-
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/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2003-0857-l</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
Hospital staff and family perspectives regarding quality of pediatric palliative care.
Publisher
An entity responsible for making the resource available
Pediatrics
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; Humans; Attitude to Health; Data Collection; Attitude of Health Personnel; Professional-Family Relations; Communication; Longitudinal Studies; Quality of Health Care; Non-U.S. Gov't; Research Support; bereavement; Family/psychology; Palliative Care/standards; Pain/therapy; Personnel; Hospital/psychology; Pediatrics/education/standards
Creator
An entity primarily responsible for making the resource
Contro N; Larson J; Scofield S; Sourkes B; Cohen HJ
Description
An account of the resource
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">10.1542/peds.2003-0857-l</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Attitude Of Health Personnel
Attitude To Health
Backlog
Bereavement
Child
Cohen HJ
Communication
Contro N
Data Collection
Family/psychology
Hospital/psychology
Humans
Journal Article
Larson J
Longitudinal Studies
Non-U.S. Gov't
Pain/therapy
Palliative Care/standards
Pediatrics
Pediatrics/education/standards
Personnel
Professional-family Relations
Quality Of Health Care
Research Support
Scofield S
Sourkes B
-
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/10.5737/1181912x144224227" target="_blank" rel="noreferrer">http://doi.org/10.5737/1181912x144224227</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
Mapping the journey of cancer patients through the health care system. Part 2: Methodological approaches and basic findings
Publisher
An entity responsible for making the resource available
Canadian Oncology Nursing Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Female; Humans; Male; Aged; Middle Aged; Survival Analysis; Cancer Care Facilities; Medical Oncology; Quality of Health Care; Proportional Hazards Models; Registries; Non-U.S. Gov't; Research Support; Databases; Delivery of Health Care/organization & administration; Patient Admission/statistics & numerical data; Length of Stay/statistics & numerical data; Health Services Research/methods; Data Collection/methods; Factual/utilization; Manitoba/epidemiology; Medical Record Linkage/methods; Neoplasms/diagnosis/mortality/therapy
Creator
An entity primarily responsible for making the resource
Sloan JA; Scott-Findlay S; Nemecek A; Blood P; Trylinski C; Whittaker H; El Sayed S; Clinch J; Khoo K
Description
An account of the resource
This is the second in a series of articles from a line of research whose intent was to construct a complete history of interactions with the health care system. This paper provides details of the methods developed to collect and collate the scattered information regarding the event history (trajectory) that a cancer patient experiences in traveling through the Manitoba health care system from one year prior to diagnosis through to two years post-diagnosis. Survival data were obtained through 1994. Basic population data obtained from this work are also presented, including survival information through to four years post-diagnosis. Issues regarding standardized data recording and detail level of clinical events in the chart record are discussed. This part of the research demonstrates that diverse data sources in the health care system can be linked with a high degree of accuracy and completeness of data.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5737/1181912x144224227" target="_blank" rel="noreferrer">10.5737/1181912x144224227</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Aged
Backlog
Blood P
Canadian Oncology Nursing Journal
Cancer Care Facilities
Clinch J
Data Collection/methods
Databases
Delivery of Health Care/organization & administration
El Sayed S
Factual/utilization
Female
Health Services Research/methods
Humans
Journal Article
Khoo K
Length Of Stay/statistics & Numerical Data
Male
Manitoba/epidemiology
Medical Oncology
Medical Record Linkage/methods
Middle Aged
Nemecek A
Neoplasms/diagnosis/mortality/therapy
Non-U.S. Gov't
Patient Admission/statistics & numerical data
Proportional Hazards Models
Quality Of Health Care
Registries
Research Support
Scott-Findlay S
Sloan JA
Survival Analysis
Trylinski C
Whittaker H
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11969151" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11969151</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
Children's hospices: organizational and staff issues
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Great Britain; Adult; Attitude of Health Personnel; Quality of Health Care; Organizational Culture; Personal Satisfaction; adolescent; Human; Hospices/organization & administration; Child Health Services/organization & administration/trends; Palliative Care/organization & administration/trends
Creator
An entity primarily responsible for making the resource
Sheldon F; Speck P
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2002
2002
Adolescent
Adult
Attitude Of Health Personnel
Backlog
Child
Child Health Services/organization & administration/trends
Great Britain
Hospices/organization & administration
Human
Journal Article
Organizational Culture
Palliative Care/organization & administration/trends
Palliative Medicine
Personal Satisfaction
Quality Of Health Care
Sheldon F
Speck P
-
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=12133252" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12133252</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A pathway to advancing end-of-life education
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Physician-Patient Relations; Education; Curriculum; Quality of Health Care; Medical; Human; Terminal Care; Continuing/methods
Creator
An entity primarily responsible for making the resource
Anderson R; Biernat K; Rehm J
Description
An account of the resource
OBJECTIVE: This paper identifies key features associated with high-quality educational materials for end-of-life curriculum. METHODS: The End of Life Physician Education Resource Center (EPERC), located on the Internet at provides a clearinghouse for end-of-life materials. All materials posted on EPERC are peer reviewed by content and education experts for quality. An analysis of reviewers' ratings, from the EPERC rating form and their narrative comments, revealed common strengths and weaknesses of submitted materials. Examples of exemplar materials from the EPERC website are presented to highlight key strengths. DISCUSSION: Articulating the best qualities of submitted materials provides clear standards for those seeking to develop or adopt high quality end-of-life educational materials.
2002
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
2002
Anderson R
Backlog
Biernat K
Continuing/methods
Curriculum
Education
Human
Journal Article
Journal of Palliative Medicine
Medical
Physician-patient Relations
Quality Of Health Care
Rehm J
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/10.1136/bmj.289.6459.1665" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.289.6459.1665</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
Helen House--a hospice for children: analysis of the first year
Publisher
An entity responsible for making the resource available
British Medical Journal (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
1984
Subject
The topic of the resource
Child; Female; Humans; Male; England; Quality of Health Care; Family Health; Patient Admission; adolescent; Terminal Care/standards; Canuck Place 15 year chart review; Cerebellar Neoplasms/therapy; Hospices/organization & administration; Medulloblastoma/therapy; Neuronal Ceroid-Lipofuscinoses/therapy
Creator
An entity primarily responsible for making the resource
Burne SR; Dominica F; Baum JD
Description
An account of the resource
Helen House, a hospice for children, opened in Oxford in November 1982. From then until December 1983 care was provided for 52 children with terminal illness, progressive and incurable illness, and very severe handicap. The children came from a wide area of the United Kingdom, and eight died during the year. The style of care provided in Helen House is based on that of the families in their own homes, with a minimum of rules, regulations, and routines. Terminal care follows the principles developed by hospices experienced in the care of adults. Despite the great sadness and distress associated with every child admitted, Helen House is neither a sombre nor a depressing place.
1984
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.289.6459.1665" target="_blank" rel="noreferrer">10.1136/bmj.289.6459.1665</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
1984
Adolescent
Backlog
Baum JD
British Medical Journal (clinical Research Ed.)
Burne SR
Canuck Place 15 year chart review
Cerebellar Neoplasms/therapy
Child
Dominica F
England
Family Health
Female
Hospices/organization & administration
Humans
Journal Article
Male
Medulloblastoma/therapy
Neuronal Ceroid-Lipofuscinoses/therapy
Patient Admission
Quality Of Health Care
Terminal Care/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/10.1001/jama.284.19.2508" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.284.19.2508</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
Learning to care for people with chronic illness facing the end of life
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
United States; Health Services Accessibility; Health Services Research; Quality of Health Care; Professional Patient Relationship; Death and Euthanasia; Palliative Care/economics/standards/trends; Policy Making; RDF Project; Terminal Care/economics/standards/trends
Creator
An entity primarily responsible for making the resource
Lynn J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.284.19.2508" target="_blank" rel="noreferrer">10.1001/jama.284.19.2508</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
2000
2000
Backlog
Death and Euthanasia
Health Services Accessibility
Health Services Research
JAMA
Journal Article
Lynn J
Palliative Care/economics/standards/trends
Policy Making
Professional Patient Relationship
Quality Of Health Care
RDF Project
Terminal Care/economics/standards/trends
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/s0020-7489(98)00026-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0020-7489(98)00026-1</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
Satisfaction with palliative care: what should we be aware of?
Publisher
An entity responsible for making the resource available
International Journal Of Nursing Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Humans; Prospective Studies; Research Design; Patient Satisfaction; Quality of Health Care; retrospective studies; Palliative Care/psychology; Palliative Care/standards; Outcome Assessment (Health Care)/organization & administration
Creator
An entity primarily responsible for making the resource
Fakhoury WK
Description
An account of the resource
This review addresses some of the methodological, theoretical and technical issues related to using satisfaction as an outcome measure of the quality of palliative care. The components of palliative care are presented, and the different approaches for evaluation discussed. The limitations of using prospective or retrospective designs are stated with emphasis on the bias resulting from using either patients or carers (proxies) as informants. The role of expectations, aspirations, and perceived health status as antecedents of patient satisfaction is discussed, as are the problems associated with using these to explain satisfaction with palliative care. The limitations of adapting the dimensions of patient satisfaction with medical care to satisfaction with palliative care when designing instruments are discussed. All this highlights the need to develop separate models of satisfaction with palliative care for patients and carers, and to design instruments which are specific to patients or carers. [References: 68]
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0020-7489(98)00026-1" target="_blank" rel="noreferrer">10.1016/s0020-7489(98)00026-1</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
Backlog
Fakhoury WK
Humans
International Journal Of Nursing Studies
Journal Article
Outcome Assessment (Health Care)/organization & administration
Palliative Care/psychology
Palliative Care/standards
Patient Satisfaction
Prospective Studies
Quality Of Health Care
Research Design
Retrospective Studies
-
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/s0885-3924(98)00134-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(98)00134-1</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 agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness
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
1999
Subject
The topic of the resource
Palliative Care; Terminal Care; Terminally Ill; Patients; Research Design; Quality of Health Care; quality of life
Creator
An entity primarily responsible for making the resource
Teno JM; Byock I; Field MJ
Description
An account of the resource
Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care. [References: 29]
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(98)00134-1" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00134-1</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
Backlog
Byock I
Field MJ
Journal Article
Journal of Pain and Symptom Management
Palliative Care
Patients
Quality Of Health Care
Quality Of Life
Research Design
Teno JM
Terminal Care
Terminally Ill
-
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/10.1046/j.1365-2648.2000.01364.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1365-2648.2000.01364.x</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
The importance of 'knowing the patient': community nurses' constructions of quality in providing palliative care
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
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; England; Questionnaires; Quality of Health Care; Nurse-Patient Relations; Community Health Nursing; Empirical Approach; Death and Euthanasia; Palliative Care/standards; Health care reform
Creator
An entity primarily responsible for making the resource
Luker KA; Austin L; Caress A; Hallett CE
Description
An account of the resource
This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which contributed or detracted from high quality care for a number of key areas including palliative care. The centrality of knowing the patient and his/her family emerged as an essential antecedent to the provision of high quality palliative care. Factors enabling the formation of positive relationships were given prominence in descriptions of ideal care. Strategies used to achieve this included establishing early contact with the patient and family, ensuring continuity of care, spending time with the patient and providing more than the physical aspects of care. The characteristics described by the community nurses are similar to those advocated in 'new nursing' which identifies the uniqueness of patient needs, and where the nurse-patient relationship is objectified as the vehicle through which therapeutic nursing can be delivered. The link with 'new nursing' emerges at an interesting time for community nurses. The past decade has seen many changes in the way that community nursing services are configured. The work of the district nursing service has been redefined, making the ideals of new nursing, for example holism, less achievable than they were a decade ago. This study reiterates the view that palliative care is one aspect of district nursing work that is universally valued as it lends itself to being an exemplar of excellence in terms of the potential for realizing the ideals of nursing practice. This is of increasing importance in the context of changes that militate against this ideal.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2648.2000.01364.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.2000.01364.x</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
Austin L
Backlog
Caress A
Community Health Nursing
Death and Euthanasia
Empirical Approach
England
Hallett CE
Health Care Reform
Humans
Journal Article
Journal Of Advanced Nursing
Luker KA
Nurse-patient Relations
Palliative Care/standards
Quality Of Health Care
Questionnaires
-
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/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">http://doi.org/10.1097/00003246-200103000-00035</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
Long-stay patients in the pediatric intensive care unit
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
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; Hospital Mortality; Logistic Models; Treatment Outcome; Comorbidity; Health Services Research; Severity of Illness Index; Risk Factors; Quality of Health Care; Sensitivity and Specificity; Analysis of Variance; Predictive Value of Tests; Cost Savings; Preschool; infant; algorithms; Pediatric/utilization; ICU Decision Making; United States/epidemiology; Age Distribution; Discriminant Analysis; Patient Admission/statistics & numerical data; Length of Stay/statistics & numerical data; Emergencies; Decision Trees; Intensive Care/economics/standards
Creator
An entity primarily responsible for making the resource
Marcin JP; Slonim AD; Pollack MM; Ruttimann UE
Description
An account of the resource
OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of long-stay patients (LSPs) and developed a prediction model to identify LSPs for early quality and cost saving interventions. DESIGN: Nonconcurrent cohort study. SETTING: A total of 16 randomly selected PICUs and 16 volunteer PICUs. PATIENTS: A total of 11,165 consecutive admissions to the 32 PICUs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: LSPs were defined as patients having a length of stay greater than the 95th percentile (>12 days). Logistic regression analysis was used to determine which clinical characteristics, available within the first 24 hrs after admission, were associated with LSPs and to create a predictive algorithm. Overall, LSPs were 4.7% of the population but represented 36.1% of the days of care. Multivariate analysis indicated that the following factors are predictive of long stays: age <12 months, previous ICU admission, emergency admission, no CPR before admission, admission from another ICU or intermediate care unit, chronic care requirements (total parenteral nutrition and tracheostomy), specific diagnoses including acquired cardiac disease, pneumonia, and other respiratory disorders, having never been discharged from the hospital, need for ventilatory support or an intracranial catheter, and a Pediatric Risk of Mortality III score between 10 and 33. The performance of the prediction algorithm in both the training and validation samples for identifying LSPs was good for both discrimination (area under the receiver operating characteristics curve of 0.83 and 0.85, respectively), and calibration (goodness of fit, p = .33 and p = .16, respectively). LSPs comprised from 2.1% to 8.1% of individual ICU patients and occupied from 15.2% to 57.8% of individual ICU bed days. CONCLUSIONS: LSPs have less favorable outcomes and use more resources than non-LSPs. The clinical profile of LSPs includes those who are younger and those that require chronic care devices. A predictive algorithm could help identify patients at high risk of prolonged stays appropriate for specific interventions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00035</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
Age Distribution
algorithms
Analysis of Variance
Backlog
Child
Comorbidity
Cost Savings
Critical Care Medicine
Decision Trees
Discriminant Analysis
Emergencies
Female
Health Services Research
Hospital Mortality
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/economics/standards
Journal Article
Length Of Stay/statistics & Numerical Data
Logistic Models
Male
Marcin JP
Patient Admission/statistics & numerical data
Pediatric/utilization
Pollack MM
Predictive Value of Tests
Preschool
Quality Of Health Care
Risk Factors
Ruttimann UE
Sensitivity and Specificity
Severity Of Illness Index
Slonim AD
Treatment Outcome
United States/epidemiology