1
40
9
-
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Title
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October 2023 List
Text
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October List 2023
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<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ssmqr.2023.100324</a>
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"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
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SSM - Qualitative Research in Health
Date
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2023
Subject
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Terminal Care; child; terminal care; article; female; human; male; physician; clinical article; pediatrician; burnout; interview; wellbeing; university hospital; medical education; responsibility; work environment; drawing; seashore; emotional support; buffer
Creator
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Gengler AM
Description
An account of the resource
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic emotional labor. Drawing on in-depth interviews with 12 physicians across two different children's hospitals on the east coast, I find that these physicians conceptualize this work as a fundamental responsibility to the children and families in their care despite believing that their formal medical training fails to prepare them for this component of their jobs. These physicians deliberately laid groundwork for the potential that children may die from their earliest interactions with patients and worked to shift families away from continued medical intervention when they believed such efforts to be futile. They described this work as deeply meaningful and rewarding, but potentially emotionally overwhelming. These physicians felt duty-bound to address what they perceived as a deficit in medical training by intentionally modeling emotionally intense exchanges with families for the next generation of practitioners. Though these dual commitments demanded extensive and potentially exhausting emotional labor, this particular group of physicians was able to use the structural features of their faculty positions in academic medical centers to buffer against potential burnout, maintain their emotional capacity at work and home, and protect their own well-being. My analysis shows that when physicians inhabit structurally favorable working conditions and conceptualize their jobs in ways that center emotional support for patients they may use these resources to work to mitigate disparities in care and take pride in their ability to provide sustained and substantive emotional support at the end of life.Copyright © 2023
Identifier
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<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener">10.1016/j.ssmqr.2023.100324</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
buffer
Burnout
Child
Clinical Article
Drawing
emotional support
Female
Gengler AM
Human
Interview
Male
Medical Education
October List 2042
Pediatrician
Physician
responsibility
seashore
SSM - Qualitative Research in Health
Terminal Care
University Hospital
Wellbeing
work environment
-
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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May 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
May List 2023
URL Address
<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935221147716</a>
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Title
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A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK
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Journal of Child Health Care
Date
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2023
Subject
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expectation; palliative nursing; pediatrics; phenomenology; respite care; anxiety; article; care behavior; child; Child; genetic transcription; human; Only Child; Palliative Care; responsibility; semi structured interview
Creator
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Constantinou G; Cook EJ; Tolliday E; Randhawa G
Description
An account of the resource
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising semi-structured interviews with professionals from various services was used. Interviews that happened between July and November 2018 were audio-recorded, transcribed verbatim and thematically analysed based on descriptive phenomenology.In total, 29 interviews were conducted. Findings showed how essential collaborative working was for becoming a team around the child. Barriers to this include complex working relationships, overprotectiveness of families, roles and responsibilities and use of independent care records. The pressures of waiting times and the impact of staffing shortages affected the experiences of providing care. The reality of meeting families' expectations was shaped by family networking, online research and previous services resistance, which was influential in more challenging interactions. Expectations of care were also impacted by misunderstandings and anxieties surrounding access to services. Overall, professionals were concerned about families being used as a bottomless caring resource and stressed the need for short breaks to alleviate parents.Interventions that educate families and professionals on these services and how they can benefit the child and family would be well received.
Identifier
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<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener">10.1177/13674935221147716</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
anxiety
Article
care behavior
Child
Constantinou G
Cook EJ
Expectation
genetic transcription
Human
Journal Of Child Health Care
May List 2023
Only Child
Palliative Care
palliative nursing
Pediatrics
Phenomenology
Randhawa G
Respite Care
responsibility
Semi Structured Interview
Tolliday E
-
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Title
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September 2022 List
Text
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September 2022 List
URL Address
<a href="http://doi.org/10.1007/s00134-022-06771-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00134-022-06771-5</a>
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How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
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Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; human; female; male; article; adult; newborn; responsibility; conversation; family; morality; uncertainty; emotion; conflict; conflict; health; research; literacy; management; patient; clinical; genetic; qualitative; care; ill; intensive; unit; decision; making; clinical; critically; intensive; transcription
Creator
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Spijkers A S; Akkermans A; Smets EMA; Schultz MJ; Cherpanath TGV; van Woensel JBM; van Heerde M; van Kaam AH; van de Loo M; Willems DL; de Vos MA
Description
An account of the resource
Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retrospective way. This study aimed to prospectively explore team-family conflicts, including its main topics, complicating factors, doctors’ conflict management strategies and the effect of these strategies. Methods Conversations between doctors in the neonatal, pediatric, and adult intensive care unit of a large university-based hospital and families of critically ill patients were audio-recorded from the moment doubts arose whether treatment was still in patients’ best interest. Transcripts were coded and analyzed using a qualitative deductive approach. Results Team-family conflicts occurred in 29 out of 101 conversations (29%) concerning 20 out of 36 patients (56%). Conflicts mostly concerned more than one topic. We identified four complicating context- and/or family-related factors: diagnostic and prognostic uncertainty, families’ strong negative emotions, limited health literacy, and burden of responsibility. Doctors used four overarching strategies to manage conflicts, namely content-oriented, process-oriented, moral and empathic strategies. Doctors mostly used content-oriented strategies, independent of the intensive care setting. They were able to effectively address conflicts in most conversations. Yet, if they did not acknowledge families’ cues indicating the existence of one or more complicating factors, conflicts were likely to linger on during the conversation. Conclusion This study underlines the importance of doctors tailoring their communication strategies to the concrete conflict topic(s) and to the context- and family-related factors which complicate a specific conflict.
Identifier
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<a href="http://doi.org/10.1007/s00134-022-06771-5" target="_blank" rel="noreferrer noopener">10.1007/s00134-022-06771-5</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
Akkermans A
Article
CARE
Cherpanath TGV
Child
Clinical
Conflict
Conversation
critically
de Vos MA
decision
Emotion
Family
Female
Genetic
Health
Human
ill
intensive
Intensive Care Medicine
literacy
making
Male
Management
Morality
Newborn
Patient
Qualitative
Research
responsibility
Schultz MJ
September 2022 List
Smets EMA
Spijkers AS
transcription
Uncertainty
Unit
van de Loo M
van Heerde M
van Kaam AH
van Woensel JBM
Willems DL
-
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Title
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March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/455">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/455</a>
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What impedes timely pediatric palliative care consults? A preliminary report
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care
Creator
An entity primarily responsible for making the resource
Marell P; Gupta S; Goloff N; Sherva K
Description
An account of the resource
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.
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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).
2019
Child
conference abstract
Education
Female
Goloff N
Gupta S
Human
Major Clinical Study
Male
March 2020 List
Marell P
Medical Staff
Narrative
Nurse
Palliative Therapy
pediatric patient
Pediatrics
Quality Of Life
responsibility
Sherva K
Terminal Care
-
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1080/13561820.2018.1538108" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/13561820.2018.1538108</a>
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Title
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Utilizing a collaborative learning activity to sensitize interprofessional students to palliative care scopes of practice with adolescent and young adults
Publisher
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Journal of interprofessional care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; article; collaborative learning; education; graduate student; health care personnel; human; Interprofessional relations; interview; malignant neoplasm; oncology; palliative care; palliative therapy; professional; professional role; public relations; responsibility; scope of practice; vulnerable population; young adult
Creator
An entity primarily responsible for making the resource
Lippe M; Linton B; Jones B
Description
An account of the resource
Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team members to maximize the quality of care provided to these patients. A team of graduate students engaged in a collaborative learning activity to explore professional roles and responsibilities of palliative care team members when caring for adolescent and young adult oncology patients. Following a literature review and community expert interviews, students identified shared responsibilities of all team members and unique contributions of various professions. Engaging in this process highlighted and clarified the full scope of practice for each specialized team member. Educators should consider utilizing a similar collaborative learning activity to enhance students' understanding of the roles and responsibilities of each member of the interprofessional healthcare team.
Identifier
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<a href="http://doi.org/10.1080/13561820.2018.1538108" target="_blank" rel="noreferrer noopener">10.1080/13561820.2018.1538108</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
Article
collaborative learning
Education
graduate student
Health Care Personnel
Human
Interprofessional Relations
Interview
Jones B
Journal Of Interprofessional Care
Linton B
Lippe M
Malignant Neoplasm
Oncology
Oncology 2019 List
Palliative Care
Palliative Therapy
Professional
Professional Role
public relations
responsibility
Scope Of Practice
vulnerable population
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2020 List
Text
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Citation List Month
February 2020 List
URL Address
<a href="http://doi.org/10.2196/12442" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/12442</a>
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Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation
Publisher
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JMIR mHealth and uHealth
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescence; adolescent; adult; anthropometry; article; breathing; child; chronic lung disease; clinical article; controlled study; cystic fibrosis; disability; female; human; life expectancy; life satisfaction; lung function; male; mobile application; mobile phone; quality of life; questionnaire; responsibility; self care; young adult
Creator
An entity primarily responsible for making the resource
Rudolf I; Pieper K; Nolte H; Junge S; Dopfer C; Sauer-Heilborn A; Ringshausen F C; Tummler B; von Jan U; Albrecht U V; Fuge J; Hansen G; Dittrich A M
Description
An account of the resource
BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the most important contributor to morbidity and mortality. Adherence is challenging in CF due to the high treatment burden and the lack of immediate health consequences in case of nonadherence. Lung function decline is particularly pronounced in the transition phase between 12 and 24 years of age. The improvement of self-management and self-responsibility and independence from parents and desire for normalcy are conflicting aspects for many adolescents with CF, which influence adherence to the time-consuming pulmonary therapy. Mobile health (mHealth) care apps could help to support self-management and independence and thereby reconcile seemingly conflicting goals to improve adherence, quality of life, and ultimately CF life expectancy.
Identifier
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<a href="http://doi.org/10.2196/12442" target="_blank" rel="noreferrer noopener">10.2196/12442</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescence
Adolescent
Adult
Albrecht U V
Anthropometry
Article
Breathing
Child
chronic lung disease
Clinical Article
Controlled Study
Cystic Fibrosis
Disability
Dittrich A M
Dopfer C
February 2020 List
Female
Fuge J
Hansen G
Human
JMIR mHealth and uHealth
Junge S
Life Expectancy
life satisfaction
lung function
Male
mobile application
mobile phone
Nolte H
Pieper K
Quality Of Life
Questionnaire
responsibility
Ringshausen F C
Rudolf I
Sauer-Heilborn A
Self Care
Tummler B
von Jan U
Young Adult
-
Dublin Core
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Title
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June 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
June 2019 List
URL Address
<a href="https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf" target="_blank" rel="noreferrer noopener">https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf</a>
Dublin Core
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Title
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A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Publisher
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Swiss Medical Weekly
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
empathy; infant; decision making; semi structured interview; delivery room; responsibility; university hospital; parental attitude; prematurity; conference abstract; human; child; patient care; honesty
Creator
An entity primarily responsible for making the resource
Hendriks M J; Abraham A
Description
An account of the resource
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past decades, more emphasis has been placed on parental involvement in the decisionmaking, but a shared approach has remained understudied and difficult to implement in practice. Method(s): In order to explore parental attitudes and values in the end-of-life decision-making process, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Parents described factors that resulted in either a smooth or friction-laden decisional process. Some elements favored good communication between parents and the health care team, such as transparent information, empathy and honesty. Elements such as lacking of transparent information and lacking continuity of care discouraged good communication. Parents experienced the end-of-life decision-making process in divergent ways. Although most parents did consider to be involved in decision-making, they were nevertheless satisfied with the process. In contrast, few parents were involved in the decision-making. They appreciated and valued the possibility to take part in the decision, but they did not perceive the decision as an act of autonomy. Rather they felt it was part of their parental responsibility and a demanding act of love. Conclusion(s): The (non)involvement of parents in the end-of-life decision-making of their infant revealed that parental decision-making preferences are not homogenous, but highly case- and contextdependent. Health care professionals, who are closest to the parents, should aim to avoid either of these two opposites. Instead, they should enable and encourage parents' relationship with their child and create a space where parental preferences for involvement in end-of-life decisions can be assessed. Only then, it is considered a shared commitment.
2017
Abraham A
Child
conference abstract
Decision Making
Delivery Room
Empathy
Hendriks M J
Honesty
Human
Infant
June 2019 List
Parental Attitude
Patient Care
Prematurity
responsibility
Semi Structured Interview
Swiss Medical Weekly
University Hospital
-
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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January 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
January 2019 List
URL Address
<a href="http://doi.org/10.1093/pch/pxx181" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1093/pch/pxx181</a>
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Title
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Medical assistance in dying: A paediatric perspective
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
infant; Canada; newborn; law; life; responsibility; medical care; euthanasia; health care quality; pediatrician; pediatrics; human; article; child; consultation; juvenile; protein unfolding
Creator
An entity primarily responsible for making the resource
Davies D
Description
An account of the resource
The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition' that causes 'enduring' and 'intolerable' suffering. In June 2016, Bill C-14 was enacted, allowing medical assistance in dying (MAID) for an eligible adult whose death is 'reasonably foreseeable'. An independent report on the status of 'mature minors' (who are currently excluded under federal legislation), with focus on their potential eligibility for MAID, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAID and articulates a paediatric perspective that has emerged from - and been informed by - the broad, structured consultation process unfolding in Canada and elsewhere. Although 'mature minors' are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAID for minors of all ages remains compelling for two main reasons: . Canadian health care professionals are increasingly being approached by the parents of 'never-competent' infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAID-related issues. Results from a Canadian Paediatric Surveillance Program (CPSP) survey, discussed below, indicate that parents raise such questions with paediatricians more often than do minors. . The discussion of MAID policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAID for incapable persons at the request of any other person, it is possible that parents may request MAID on behalf of their dying child.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/pxx181" target="_blank" rel="noreferrer noopener">10.1093/pch/pxx181</a>
2018
Article
Canada
Child
Consultation
Davies D
Euthanasia
Health Care Quality
Human
Infant
January 2019 List
juvenile
Law
Life
Medical Care
Newborn
Paediatrics & Child Health
Pediatrician
Pediatrics
protein unfolding
responsibility
-
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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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="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/pbc.27455</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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A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
Publisher
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Pediatric Blood and Cancer
Date
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2018
Subject
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mother; responsibility; personal experience; family life; home care; nonhuman; childhood cancer; sibling; wellbeing; genetic transcription; expectation; conference abstract; human; child; female; male; interview; clinical article; attention; father; Sweden; lion; welfare
Creator
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Castor C; Hansson H; Landgren K; Kristensson HI
Description
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Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based healthcare services. Design/Methods: A descriptive qualitative design was chosen. Twelve families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analyzed using a hermeneutic phenomenological approach. Results: The family members' lived experience was described in three essential themes. Strengthening family life relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. Promoting health relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, Creating alliances, relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. Conclusions: The findings suggest that care in the family's home is a useful complement to hospital care when given with close attention to family members' needs, as positive effects of home care might be jeopardized when expectations are not successfully shared. The study was funded by the Swedish Childhood Cancer Foundation, The Swedish Research Council for Health, Working Life and Welfare, The Lions Research Foundation, and The Jonas Foundation.
Identifier
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<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Attention
Castor C
Child
Childhood Cancer
Clinical Article
conference abstract
December 2018 List
Expectation
Family Life
Father
Female
genetic transcription
Hansson H
Home Care
Human
Interview
Kristensson HI
Landgren K
lion
Male
Mother
Nonhuman
Pediatric Blood and Cancer
Personal Experience
responsibility
Sibling
Sweden
welfare
Wellbeing