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40
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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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October 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
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203</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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The experiences of bereaved family caregivers with advance care planning for children with medical complexity
Publisher
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Paediatrics and Child Health (Canada)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience
Creator
An entity primarily responsible for making the resource
Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J
Description
An account of the resource
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.
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
Advance Care Planning
Amin R
Caregiver
Child
Clinical Article
Cohen E
conference abstract
Consultation
Content Analysis
Conversation
Death
Female
genetic transcription
Health Care Personnel
Hellman J
Human
Human Tissue
Informed Consent
Lord S
Male
Moore C
Netten K
October 2019 List
Orkin J
Paediatrics and Child Health (Canada)
Perception
Personal Experience
Rappaport A
Semi Structured Interview
-
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
October 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
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e25/5506908" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e25/5506908</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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Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
Publisher
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Paediatrics and Child Health (Canada)
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; female; human; major clinical study; male; palliative therapy; controlled study; emergency ward; cancer patient; respiratory distress; conference abstract; decision making; human tissue; perception; clinician; spinal muscular atrophy; data analysis software; advanced cancer; brain disease; cancer resistance; deterioration; disease exacerbation; e-mail; hypoplastic left heart syndrome; leukemia; Likert scale; nonparametric test; pediatrician; vignette
Creator
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Cote A J; Gaucher N; Payot A
Description
An account of the resource
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to GOC discussions and management during acute unexpected clinical deteriorations. DESIGN/METHODS: This single center survey study used 4 scenarios of children with advanced life-threatening illnesses, presenting to the emergency department (ED) with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA), refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants' Likert scale answers to the different scenarios. RESULT(S): Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed GOC were best discussed before an acute deterioration (Table 1). Acute deteriorations were not seen as an opportune moment to initiate discussions about GOC. However, validating GOC was necessary, given that not discussing GOC was unacceptable. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the ED's role was unclear. Several management options were less acceptable for the patient with static encephalopathy. CONCLUSION(S): Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision making processes. Advanced care planning with these families is essential to prepare them for acute heath events. (Table Presented).
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
Advanced Cancer
brain disease
Cancer Patient
cancer resistance
Child
Clinician
conference abstract
Controlled Study
Cote A J
Data Analysis Software
Decision Making
Deterioration
disease exacerbation
E-mail
Emergency Ward
Female
Gaucher N
Human
Human Tissue
Hypoplastic Left Heart Syndrome
Leukemia
Likert scale
Major Clinical Study
Male
nonparametric test
October 2019 List
Paediatrics and Child Health (Canada)
Palliative Therapy
Payot A
Pediatrician
Perception
respiratory distress
Spinal Muscular Atrophy
vignette
-
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
October 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
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918</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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Medical assistance in dying and minors-views of the Canadian pediatrician
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health (Canada)
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; female; human; major clinical study; male; controlled study; terminal care; conference abstract; disability; pediatrician; health care system; conversation; intractable pain; medical care; mental disease; terminal disease
Creator
An entity primarily responsible for making the resource
Catena G; Davies D
Description
An account of the resource
BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility criteria. As part of this Act, an independent review was initiated to evaluate requests made by mature minors for MAID and ultimately possible inclusion in further iterations of the Act. OBJECTIVE(S): Limited Canadian data is available on the role of MAID in mature minors or the views of health care practitioners on this topic. This study aims to assess the attitudes of Canadian health care practitioners surrounding MAID in minors and their willingness to participate in this process. DESIGN/METHODS: A survey was disseminated to members of the Canadian Paediatric Society, collecting information on attitudes surrounding MAID as it applies to minors, specifically mature minors, those with intolerable disability and mental illness. The survey also assessed the demographics of respondents, including type of practice and patient population. The results were analyzed using logistical regression to determine if there were correlations between practice variables and opinions surrounding MAID. RESULT(S): A 29% response rate was achieved (574/1979), with 487 participants completing all questions. Of the respondents, 46% were in favour that MAID should be eligible for mature minors experiencing progressive or terminal illness or intractable pain; 29% felt patients with intolerable disability should be eligible, while only 8% favoured extension in cases of intolerable mental illness. Lastly, 33% felt that MAID should never be extended to minors. There was no significant correlation between attitudes towards MAID and the respondent's type of practice, or if they work with minors suffering from life-threatening illness. Practitioners who felt their spiritual beliefs guide their opinions surrounding MAID were more likely to oppose eligibility for children (p<0.00001). Practitioners who had the experience of discussing MAID with parents or children were more likely to support extending MAID to mature minors (p=0.046). CONCLUSION(S): There exists a great variability in viewpoints amongst pediatric healthcare practitioners as it relates to extension of MAID to minors. As opinions vary based on factors including spiritual beliefs and conversations pertaining to end of life care, more time and research is warranted to further explore this topic in the context of the Canadian health care system.
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
Catena G
Child
conference abstract
Controlled Study
Conversation
Davies D
Disability
Female
Health Care System
Human
intractable pain
Major Clinical Study
Male
Medical Care
mental disease
October 2019 List
Paediatrics and Child Health (Canada)
Pediatrician
Terminal Care
terminal disease