1
40
19
-
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 2017 List
URL Address
<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">http://dx.doi.org/10.1136/archdischild-2015-310345</a>
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Title
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'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Cystic Fibrosis; Decision-making; Oncology; Qualitative Research
Creator
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Bluebond-Langner M; Hargrave D; Henderson EM; Langner R
Description
An account of the resource
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.
Identifier
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<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">10.1136/archdischild-2015-310345</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Archives of Disease in Childhood
Bluebond-Langner M
Communication
Cystic Fibrosis
Decision Making
February 2017 List
Hargrave D
Henderson EM
Langner R
Oncology
Qualitative Research
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
Dublin Core
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Title
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"it Scares Me To Know That We Might Not Have Been There!": A Qualitative Study Into The Experiences Of Parents Of Seriously Ill Children Participating In Ethical Case Discussions
Publisher
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Bmc Med Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication; Critical Illness; Ethics Committees Clinical; Ethics Medical; Parents; Patient Participation; Patient Satisfaction; Adult; Child; Decision Making/ethics; Humans; Norway; Only Child; Qualitative Research
Creator
An entity primarily responsible for making the resource
Forde R; Linja T
Description
An account of the resource
BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions. METHODS: Ten next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide. RESULTS: All next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child's impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead. All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much. CONCLUSIONS: None of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC's role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion.
Identifier
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https://doi.org/10.1186/s12910-015-0028-6
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Adult
BMC Med Ethics
Child
Communication
Critical Illness
Decision Making/ethics
Ethics Committees Clinical
Ethics Medical
Forde R
Humans
Linja T
May 2017 List
Norway
Only Child
Parents
Patient Participation
Patient Satisfaction
Qualitative Research
-
Text
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Citation List Month
May 2017 List
Dublin Core
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Title
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A Study Into The Educational Needs Of Children's Hospice Doctors: A Descriptive Quantitative And Qualitative Survey
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Clinical Competence/st [standards]; Education Medical Continuing/og [organization & Administration]; Inservice Training/og [organization & Administration]; Palliative Care/st [standards]; Pediatrics/ed [education]; Child; Communication; England; Hospice Care; Hospices; Humans; Only Child; Palliative Care; Patient Care Team; Surveys And Questionnaires
Creator
An entity primarily responsible for making the resource
Amery J; Lapwood S
Description
An account of the resource
OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice doctors (n =55) in England were approached, and 35 (65%) consented. INTERVENTIONS: A questionnaire designed to survey doctors' self-assessed educational competencies (confidence and perceived need for training) in subject areas derived from analysis of existing children's palliative care literature. Educational diaries used prospectively in practice to identify areas of unmet educational need. MAIN OUTCOME MEASURES: Self-perceived confidence and usefulness scores for each subject area. An analysis of support, education and training needs deriving from educational diaries and one-to-one interviews. RESULTS: Confidence and usefulness scores suggest that respondents would most value support, education and training in the management of emergencies, symptoms and physical disease. Educational diary analysis revealed that respondents would most value support, education and training in communication skills, team-working skills, and personal coping strategies. CONCLUSIONS: There is a disparity between educational needs as derived from self-rated competencies and from educational diary keeping; suggesting that children's hospice doctors may not be fully aware of their own educational, support and training needs. Self-rated competencies emphasise the value of education in craft or clinical skills; whereas personal diary keeping emphasises the value of education in intrapersonal and interpersonal skills such as communication, team-working and personal coping skills. The current curricula and educational resources need to acknowledge that interpersonal and intrapersonal competencies are as important as clinical competencies. While the study looks particularly at the educational needs of children's hospice doctors, readers may feel that the findings are of relevance to all specialities and disciplines.
Identifier
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10.1191/0269216304pm902oa
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2004
Amery J
Child
Clinical Competence/st [standards]
Communication
Education Medical Continuing/og [organization & Administration]
England
Hospice Care
Hospices
Humans
Inservice Training/og [organization & Administration]
Lapwood S
May 2017 List
Only Child
Palliative Care
Palliative Care/st [standards]
Palliative Medicine
Patient Care Team
Pediatrics/ed [education]
Surveys And 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
May 2017 List
Dublin Core
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Title
A name given to the resource
Affording Opportunities To Discuss Deterioration In Paediatric Palliative Care Consultations: A Conversation Analytic Study
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child; Communication; Family Management; Only Child; Paediatrics; Palliative Care; Prognosis; Referral And Consultation
Creator
An entity primarily responsible for making the resource
Ekberg S; Danby S; Herbert A; Bradford N; Yates P
Description
An account of the resource
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations. METHODS: 9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised. FINDINGS: The study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur. CONCLUSIONS: These communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.
Identifier
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10.1136/bmjspcare-2016-001130
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
BMJ Supportive & Palliative Care
Bradford N
Child
Communication
Danby S
Ekberg S
Family Management
Herbert A
May 2017 List
Only Child
Paediatrics
Palliative Care
Prognosis
Referral And Consultation
Yates 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
August 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8" target="_blank" rel="noreferrer">https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8</a>
Dublin Core
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Title
A name given to the resource
Consistency in end of life care
Publisher
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Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Creator
An entity primarily responsible for making the resource
Allen D
Description
An account of the resource
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Identifier
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<a href="http://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Allen D
August 2017 List
Child
Child Preschool
Communication
Decision Making
Hospice And Palliative Care Nursing/ Standards
Humans
Infant
Nurse-patient Relations
Nursing Children and Young People
Patient Participation
Pediatric Nursing/ Standards
Practice Guidelines As Topic
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="https://doi.org/10.1542/peds.2017-0690" target="_blank" rel="noreferrer">https://doi.org/10.1542/peds.2017-0690</a>
Notes
Copyright (c) 2017 by the American Academy of Pediatrics.
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Title
A name given to the resource
Cross-Cultural Differences in Communication About a Dying Child.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; Cross-cultural Comparison; Physician-patient Relations; Attitude To Death/ Ethnology; Child; Humans; Male; Pakistan/ethnology; Subacute Sclerosing Panencephalitis/ Diagnosis/ Ethnology; United States/ethnology
Creator
An entity primarily responsible for making the resource
Cochran D; Saleem S; Khowaja-Punjwani S; Lantos JD
Description
An account of the resource
There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes find our own deeply held beliefs and values challenged. In this "Ethics Rounds," we present a case in which a Pakistani immigrant family faces a tragic medical situation and wants to deal with it in ways that might be normative in their own culture but are aberrant in ours. We asked the American doctors and 2 Pakistani health professionals to think through the issues. We also invited the father to talk about his own experience and preferences. We conclude that strict adherence to Western ethical norms may not always be the best choice. Instead, an approach based on cultural humility may often allow people on both sides of a cultural divide to learn from one another.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1542/peds.2017-0690" target="_blank" rel="noreferrer">10.1542/peds.2017-0690</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Attitude To Death/ Ethnology
Child
Cochran D
Communication
Cross-cultural Comparison
December 2017 List
Humans
Khowaja-Punjwani S
Lantos JD
Male
Pakistan/ethnology
Pediatrics
Physician-patient Relations
Saleem S
Subacute Sclerosing Panencephalitis/ Diagnosis/ Ethnology
United States/ethnology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2017 List
Notes
<p>1938-2715<br />Van Scoy, Lauren Jodi<br />Watson-Martin, Elizabeth<br />Bohr, Tiffany A<br />Levi, Benjamin H<br />Green, Michael J<br />Journal Article<br />United States<br />Am J Hosp Palliat Care. 2017 Jan 1:1049909117723619. doi: 10.1177/1049909117723619.</p>
Dublin Core
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Title
A name given to the resource
End-of-life Conversation Game Increases Confidence For Having End-of-life Conversations For Chaplains-in-training
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; End-of-life Conversations; Health Games; Palliative Care; Pastoral Care; Terminal Care
Creator
An entity primarily responsible for making the resource
Van Scoy L J; Watson-Martin E; Bohr T A; Levi B H; Green M J
Description
An account of the resource
CONTEXT: Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills. OBJECTIVE: This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients. METHODS: We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display. RESULTS: Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P < .001). Positive affect subscale scores also increased significantly after each game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant). CONCLUSION: Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings' confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.
Identifier
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10.1177/1049909117723619
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
American Journal of Hospice and Palliative Medicine
Bohr T A
Communication
End-of-life Conversations
Green M J
Health Games
Levi B H
October 2017 List
Palliative Care
Pastoral Care
Terminal Care
Van Scoy L J
Watson-Martin E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Improvements In Communication And Relationship Building Are Essential
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Nurse-patient Relations; Palliative Care/st [standards]; Pediatric Nursing/mt [methods]; Pediatric Nursing/st [standards]; Humans
Creator
An entity primarily responsible for making the resource
Anonymous
Description
An account of the resource
Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ). Advances in technology that can keep children alive for a long time is another area over which there is much debate ( Longden and Mayer 2007 ).
Identifier
An unambiguous reference to the resource within a given context
10.7748/ncyp.28.4.13.s17
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Anonymous
Communication
Humans
Nurse-patient Relations
Nursing Children and Young People
Palliative Care/st [standards]
Pediatric Nursing/mt [methods]
Pediatric Nursing/st [standards]
September 2017 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 2017 List
URL Address
<a href="http://acc.aacnjournals.org/content/28/2/124.long" target="_blank" rel="noreferrer">http://acc.aacnjournals.org/content/28/2/124.long</a>
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Title
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Improving Health Care Provider Communication in End-of-Life Decision-Making
Publisher
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Aacn Advanced Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; Critically Ill; End-of-life; Family Meeting; Intensive Care
Creator
An entity primarily responsible for making the resource
Wilson T; Haut C; Akintade B
Description
An account of the resource
Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about end-of-life decision-making is a daunting task. Often, health care providers are not trained, experienced, or comfortable facilitating these conversations. This article describes a quality improvement project that identified current views on end-of-life communication in the intensive care unit and potential barriers that obstruct open discussion, and offering strategies for improvement.
©2017 American Association of Critical-Care Nurses.
Identifier
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<a href="https://doi.org/10.4037/aacnacc2017302" target="_blank" rel="noreferrer">10.4037/aacnacc2017302</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Aacn Advanced Critical Care
Akintade B
August 2017 List
Communication
Critically Ill
end-of-life
Family Meeting
Haut C
Intensive Care
Wilson 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
May 2017 List
Dublin Core
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Title
A name given to the resource
Key Factors Affecting Dying Children And Their Families
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Bereavement; Family/px [psychology]; Palliative Care/st [standards]; Professional-family Relations; Quality Of Health Care; Terminal Care/st [standards]; Adolescent; Bereavement; Child; Communication; Decision Making; Humans; Only Child; Stress Psychological/et [etiology]; Terminal Care
Creator
An entity primarily responsible for making the resource
Hinds PS; Schum L; Baker J; 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. [References: 75]
Identifier
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10.1089/jpm.2005.8.s-70
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2005
Adolescent
Baker J
Bereavement
Child
Communication
Decision Making
Family/px [psychology]
Hinds PS
Humans
Journal of Palliative Medicine
May 2017 List
Only Child
Palliative Care/st [standards]
Professional-family Relations
Quality Of Health Care
Schum L
Stress Psychological/et [etiology]
Terminal Care
Terminal Care/st [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
August 2017 List
URL Address
<a href="http://www.ingentaconnect.com/content/wk/aog/2016/00000128/00000006/art00031" target="_blank" rel="noreferrer">http://www.ingentaconnect.com/content/wk/aog/2016/00000128/00000006/art00031</a>
Dublin Core
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Title
A name given to the resource
Palliative Care in Obstetrics and Gynecology
Publisher
An entity responsible for making the resource available
Journal Of Obstetrics And Gynecology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pain Management; Perinatal Care; Advance Care Planning; Communication; Female; Genital Neoplasms Female/complications/psychology/ Therapy; Humans; Infant Newborn; Life Expectancy; Mood Disorders/etiology/therapy; Nausea/therapy; Pain/etiology; Palliative
Creator
An entity primarily responsible for making the resource
Lefkowits C; Solomon C
Description
An account of the resource
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician–gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1097/AOG.0000000000001739" target="_blank" rel="noreferrer">10.1097/AOG.0000000000001739</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Advance Care Planning
August 2017 List
Communication
Female
Genital Neoplasms Female/complications/psychology/ Therapy
Humans
Infant Newborn
Journal Of Obstetrics And Gynecology
Lefkowits C
Life Expectancy
Mood Disorders/etiology/therapy
Nausea/therapy
Pain Management
Pain/etiology
Palliative
Perinatal Care
Solomon C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Parents' Perception of Their Relationship Following the Loss of a Child.
Publisher
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Omega: Journal Of Death & Dying
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereavement; Child Mortality; Interpersonal Relations; Men; Parents; Perception; Questionnaires; Respect; Satisfaction; Women; Family Conflict; Communication Barriers; Parent Attitudes; Norway
Child Loss; Communication; Marital Closeness; Parental Relationship
Creator
An entity primarily responsible for making the resource
Dyregrov A; Dyregrov K
Description
An account of the resource
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss of a child. A questionnaire on various aspects of the relationship was sent to 1,027 members of bereavement support organizations for parents who have lost children in Norway. The studied sample (N=285) consisted of 169 women (59.3%) and 116 men (40.7%), representing 175 couples. Although the participants were generally satisfied with their relationship and felt that it was strengthened, there were challenges of communication and interaction. The loss made the relationship special, and they felt they had learned to know each other on a deeper level. The importance of talking together and communicating thoughts and feelings was emphasized by the parents. Women initiated talk more often and evidenced a greater need to talk. A deterioration of the relationship tended to be related to a lack of understanding, communication, and care. Communication, respect, and understanding were underlined as core factors for perceiving a relationship as positive.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0030222815590728" target="_blank" rel="noreferrer">10.1177/0030222815590728</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bereavement
Child Loss
Child Mortality
Communication
Communication Barriers
December 2017 List
Dyregrov A
Dyregrov K
Family Conflict
Interpersonal Relations
Marital Closeness
Men
Norway
Omega: Journal Of Death & Dying
Parent Attitudes
Parental Relationship
Parents
Perception
Questionnaires
Respect
Satisfaction
Women
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1572-8498<br />Wocial, Lucia<br />Ackerman, Veda<br />Leland, Brian<br />Benneyworth, Brian<br />Patel, Vinit<br />Tong, Yan<br />Nitu, Mara<br />Journal Article<br />Netherlands<br />HEC Forum. 2017 Mar;29(1):75-91. doi: 10.1007/s10730-016-9313-0.</p>
URL Address
<a href="https://link.springer.com/article/10.1007/s10730-016-9313-0" target="_blank" rel="noreferrer">https://link.springer.com/article/10.1007/s10730-016-9313-0</a>
Dublin Core
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Title
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Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU
Publisher
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HEC Forum
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; Length Of Stay; Adult; Clinical Ethics; Ethics Intervention; Female; Humans; Icu Length Of Stay; Intensive Care Units Pediatric/ Ethics; Interprofessional Relations; Life Support Care/ethics; Male; Middle Aged; Moral Distress; Pediatrics; Psychometrics/instrumentation/methods; Severity Of Illness Index; Stress Psychological/ Psychology; Teaching Rounds/manpower/methods; Unnecessary Procedures/ Ethics
Creator
An entity primarily responsible for making the resource
Wocial L; Ackerman V; Leland B; Benneyworth B; Patel V; Tong Y; Nitu M
Description
An account of the resource
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1007/s10730-016-9313-0" target="_blank" rel="noreferrer">10.1007/s10730-016-9313-0</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Ackerman V
Adult
Benneyworth B
Clinical Ethics
Communication
Ethics Intervention
Female
HEC Forum
Humans
Icu Length Of Stay
Intensive Care Units Pediatric/ Ethics
Interprofessional Relations
Leland B
Length Of Stay
Life Support Care/ethics
Male
Middle Aged
Moral Distress
Nitu M
November 2017 List
Patel V
Pediatrics
Psychometrics/instrumentation/methods
Severity Of Illness Index
Stress Psychological/ Psychology
Teaching Rounds/manpower/methods
Tong Y
Unnecessary Procedures/ Ethics
Wocial L
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Preparing Pediatric Healthcare Professionals For End-of-life Care Discussions: An Exploratory Study
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; End Of Life; Palliative Care; Pediatric
Creator
An entity primarily responsible for making the resource
Henderson A; Young J; Herbert A; Bradford N; Pedersen LA
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2016.0367
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
April 2017 List
Bradford N
Communication
End Of Life
Henderson A
Herbert A
Journal of Palliative Medicine
Palliative Care
Pedersen LA
Pediatric
Young 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
August 2017 List
URL Address
<a href="https://www.degruyter.com/view/j/jpme.2016.44.issue-4/jpm-2015-0110/jpm-2015-0110.xml" target="_blank" rel="noreferrer">https://www.degruyter.com/view/j/jpme.2016.44.issue-4/jpm-2015-0110/jpm-2015-0110.xml</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Seeking the best training model for difficult conversations in neonatology
Publisher
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Journal Of Perinatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Neonatology/education; Professional-patient Relations; Computer Simulation; Curriculum; Fellowships And Scholarships; Female; Humans; Infant Newborn; Male; Models Educational; Parents; Pregnancy; Terminal Care
Creator
An entity primarily responsible for making the resource
Lechner BE; Shields R; Tucker R; Bender GJ
Description
An account of the resource
OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a retrospective web-based survey. Some had been exposed to a Difficult Conversations curriculum (simulation group), others had not (no simulation group). The simulation group participated in one workshop annually, consisting of lecture, simulation, and debriefing. Scenarios were customized to year of training. Epoch comparisons were made between the simulation and no simulation groups. RESULTS: Self-rated baseline effectiveness at discussing difficult topics was not different. The simulation group reported more supervised family meetings and feedback after fellow-led meetings. Simulations were rated very positively. The simulation group reported increased comfort levels. Strategic pause and body positioning were specific communication skills more frequently acquired in the simulation group. In both groups, the highest ranked contributors to learning were mentor observation and clinical practice. In the simulation group, simulation and debriefing outranked didactics or other experiences. CONCLUSIONS: Simulation-based workshops improve communication skills in high stakes conversations. However, they do not substitute for mentor observation and experience. Establishing a structured simulation-based difficult conversations curriculum refines vital communication skills necessary for the high stakes conversations neonatologists direct in clinical practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1515/jpm-2015-0110">10.1515/jpm-2015-0110</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).
2016
August 2017 List
Bender GJ
Communication
Computer Simulation
Curriculum
Fellowships And Scholarships
Female
Humans
Infant Newborn
Journal Of Perinatal Medicine
Lechner BE
Male
Models Educational
Neonatology/education
Parents
Pregnancy
Professional-patient Relations
Shields R
Terminal Care
Tucker R
-
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
July 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Use Of Simulation To Improve Resident Communication And Personal Experience At End-of-life Care
Publisher
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Journal of Pediatric Intensive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Simulation; End-of-life Care; Communication
Creator
An entity primarily responsible for making the resource
Nellis ME; Howell JD; Ching K; Bylund C
Description
An account of the resource
Pediatric residents report they are not sufficiently trained to communicate with families at a child's death. We performed a study to prove feasibility and assess whether simulation improves their communication and experience. Residents were assigned to intervention using simulation or control group. Communication was assessed by standardized patients and audiotapes of simulated encounters when they delivered bad news. Residents' perceptions of their communication were polled. The majority reported they never witnessed end-of-life discussions. All residents perceived themselves to be more capable at pronouncing the death of a child, and informing a family of a death after participating in either the interventional simulation or a bereavement retreat. Despite training within a pediatric intensive care unit, pediatric residents have little exposure to end-of-life discussions. Pediatric end-of-life simulation increases exposure of residents to end-of-life care and improves residents' perceptions of their communication.
Identifier
An unambiguous reference to the resource within a given context
10.1055/s-0036-1584684
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bylund C
Ching K
Communication
End-of-life Care
Howell JD
Journal of Pediatric Intensive Care
July 2017 List
Nellis ME
Simulation
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28436742
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
Training Pediatric Fellows In Palliative Care: A Pilot Comparison Of Simulation Training And Didactic 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
2017
Subject
The topic of the resource
Communication; End-of-life; Medical Education; Palliative Care; Pediatric Fellows; Pediatrics; Simulation
Creator
An entity primarily responsible for making the resource
Brock Katharine E; Cohen Harvey J; Sourkes Barbara M; Good Julie J; Halamek Louis P
Description
An account of the resource
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. DESIGN: Thirty-five pediatric fellows in cardiology, critical care, hematology/oncology, and neonatology at two institutions enrolled: 17 in the intervention (simulation-based) group (single institution) and 18 in the control (didactic education) group (second institution). Intervention group participants participated in a two-day program over three months (three simulations and videotaped PC panel). Control group participants received written education designed to be similar in content and time. MEASUREMENTS: (1) Self-assessment questionnaires were completed at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) External reviewers rated simulation-group encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultations were compared in the six months pre- and post-intervention. RESULTS: Compared to the control group, participants in the intervention group improved in self-efficacy (p = 0.003) and perceived adequacy of medical education (p < 0.001), but not knowledge (p = 0.20). Reviewers noted nonsustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). CONCLUSIONS: This simulation-based curriculum is an effective method for improving PC comfort, education, and consults. More frequent practice is likely needed to lead to sustained improvements in communication competence.
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2016.0556
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Brock Katharine E
Cohen Harvey J
Communication
end-of-life
Good Julie J
Halamek Louis P
Journal of Palliative Medicine
June 2017 List
Medical Education
Palliative Care
pediatric fellows
Pediatrics
Simulation
Sourkes Barbara 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
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Understanding Death With Limited Experience In Life: Dying Children's And Adolescents' Understanding Of Their Own Terminal Illness And Death
Publisher
An entity responsible for making the resource available
Current Opinion In Supportive And Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Adolescent; Attitude To Death; Child; Communication; Fear; Humans; Palliative Care/organization & Administration; Palliative Care/psychology; Professional-family Relations; Prognosis; Terminal Care/organization & Administration; Terminal Care/psychology; Terminally Ill/legislation & Jurisprudence; Terminally Ill/psychology; Time Factors
Creator
An entity primarily responsible for making the resource
Bates Alan T; Kearney Julia A
Description
An account of the resource
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. SUMMARY: In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
Identifier
An unambiguous reference to the resource within a given context
10.1097/SPC.0000000000000118
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Adolescent
Attitude To Death
Bates Alan T
Child
Communication
Current Opinion in Supportive and Palliative Care
Fear
Humans
Kearney Julia A
May 2017 List
Palliative Care/organization & Administration
Palliative Care/psychology
Professional-family Relations
Prognosis
Terminal Care/organization & Administration
Terminal Care/psychology
Terminally Ill/legislation & jurisprudence
Terminally Ill/psychology
Time Factors
-
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
July 2017 List
URL Address
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">https://doi.org/10.1186/s12904-015-0024-0</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 Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication;Decision Making;Health Knowledge Attitudes Practice;Hope;Humans;Intensive Care Units Pediatric/organization & Administration;Needs Assessment;Parents/education;Parents/psychology;Terminal Care/methods;Terminal Care/psychology;Time Factors
Creator
An entity primarily responsible for making the resource
Xafis V; Wilkinson D; Sullivan J
Description
An account of the resource
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS: A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS: The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS: Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">10.1186/s12904-015-0024-0</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).
2015
BMC Palliative Care
Communication
Decision Making
Health Knowledge Attitudes Practice
Hope
Humans
Intensive Care Units Pediatric/organization & Administration
July 2017 List
Needs Assessment
Parents/education
Parents/psychology
Sullivan J
Terminal Care/methods
Terminal Care/psychology
Time Factors
Wilkinson D
Xafis V