2
40
52
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Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1177/1043454220909805" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1043454220909805</a>
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An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer
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Journal of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; childhood cancer; end of life; symptom experiences and/or burden
Creator
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Eche I J; Eche I M; Aronowitz T
Description
An account of the resource
Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptoms-pain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed.
Identifier
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<a href="http://doi.org/10.1177/1043454220909805" target="_blank" rel="noreferrer noopener">10.1177/1043454220909805</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Aronowitz T
Childhood Cancer
Eche I J
Eche I M
End Of Life
Journal Of Pediatric Oncology Nursing
Oncology 2020 List
Palliative Care
symptom experiences and/or burden
-
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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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1177/1074840720938314" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1074840720938314</a>
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Title
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The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer
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Journal of family nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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grief; cancer; end-of-life care; parents; bereavement; family nursing; child care; professional family relations
Creator
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Dos Santos M R; Szylit R; Deatrick J A; Mooney-Doyle K; Wiegand D L
Description
An account of the resource
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.
Identifier
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<a href="http://doi.org/10.1177/1074840720938314" target="_blank" rel="noreferrer noopener">10.1177/1074840720938314</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bereavement
Cancer
Child Care
Deatrick J A
Dos Santos M R
End-of-life Care
Family Nursing
Grief
Journal Of Family Nursing
Mooney-Doyle K
Oncology 2020 List
Parents
Professional Family Relations
Szylit R
Wiegand D L
-
Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.008" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.008</a>
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Title
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Initiating Palliative Care Referrals in Pediatric Oncology
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; quality of life; symptom management; pediatric oncology; screening tool; trigger
Creator
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Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVE(S): We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer. METHOD(S): This mixed-methods study used semi-structured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts. RESULT(S): 77 participants with diverse experience were interviewed. Over 75% of participants reported that PC was consulted "too late" and cited communication and systems issues as the top barriers. A majority of participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training, however only one third of these participants noted completing a PC rotation. CONCLUSION(S): Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of palliative care triggers. Copyright © 2020. Published by Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.008</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Boss R D
Cuviello A
Donohue P K
Journal of Pain and Symptom Management
Oncology 2020 List
Palliative Care
Pediatric Oncology
Quality Of Life
Raisanen J C
Screening tool
Symptom Management
trigger
Wiener L
-
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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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.11.022</a>
Dublin Core
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Title
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Defining the Boundaries of Palliative Care in Pediatric Oncology
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Creator
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Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Article
Boss R D
Cancer Patient
Child
Childhood Cancer
Comfort
Content Analysis
Controlled Study
Cuviello A
Donohue P K
Female
genetic transcription
Human
Interview
Journal of Pain and Symptom Management
Major Clinical Study
Male
Mental Health
Nurse Practitioner
Oncology 2020 List
Palliative Therapy
pediatric oncologist
Quality Of Life
Raisanen J C
Skill
standardization
Terminal Care
Wiener L
-
Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-020-05671-y</a>
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Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Pediatric oncology; Pediatric palliative care; Supportive care; End-of-life
Creator
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Brock K E; Allen K E; Falk E; Velozzi-Averhoff C; DeGroote N P; Klick J; Wasilewski-Masker K
Description
An account of the resource
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Identifier
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<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">10.1007/s00520-020-05671-y</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Allen K E
Brock K E
DeGroote N P
end-of-life
Falk E
Klick J
Oncology 2020 List
Pediatric Oncology
Pediatric Palliative Care
Supportive Care
Supportive Care In Cancer
Velozzi-Averhoff C
Wasilewski-Masker K
-
Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/JOP.19.00313</a>
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Title
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"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
Publisher
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Journal of Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
Creator
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Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Description
An account of the resource
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Identifier
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<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Adult
Advanced Cancer
Advanced Practice Nurse
Aged
al-Awamer A
Article
Avery J
Canada
Cancer Palliative Therapy
care behavior
clinician parent communication difficulty
counter transference
D'Agostino N M
Experience
Family
Female
Geist A
Gupta A
Health Personnel Attitude
Human
Journal of Oncology Practice
Kassam A
Kawaguchi S K
Mahtani R
Male
Mazzotta P
medical oncologist
Mosher P J
Oncology 2020 List
Perception
Physician
psychiatrist
Qualitative Research
radiation oncologist
Samadi M
Semi Structured Interview
Srikanthan A
Tam S
tertiary care center
Thematic Analysis
theoretical study
Young Adult
Zimmermann C
-
Dublin Core
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Title
A name given to the resource
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/2632352420958000</a>
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The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Publisher
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Palliative Care and Social Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
children; cancer; life-limiting illness; non-cancer; parents; paediatric palliative care; article.; interest with respect to the research; support needs; and/or publication of this; authorship; health professionals
Creator
An entity primarily responsible for making the resource
Aoun S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E
Description
An account of the resource
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Identifier
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<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
and/or publication of this
Aoun S M
article.
Authorship
Cancer
Children
Cuddeford L
Deleuil R
Gill F J
health professionals
Howting D
interest with respect to the research
life-limiting illness
Lyon M E
Momber S
non-cancer
Oncology 2020 List
paediatric palliative care
Palliative Care and Social Practice
Parents
Phillips M B
Stegmann R
support needs
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1080/24694193.2020.1727065" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/24694193.2020.1727065</a>
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Title
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Efficacy of Aloe-Vera Use for Prevention of Chemotherapy-Induced Oral Mucositis in Children with Acute Lymphoblastic Leukemia: A Randomized Controlled Clinical Trial
Publisher
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Comprehensive Child Adolescent Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Chemotherapy; prevention; leukemia; aloe-vera; oral mucositis
Creator
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Alkhouli M; Laflouf M; Alhaddad M
Description
An account of the resource
Oral mucositis can be caused by chemotherapy and can affect a patient's quality of life. Nowadays, to prevent chemotherapy-induced oral mucositis (CIOM) is a crucial point in palliative care centers. This trial aimed to assess the effectiveness of aloe-vera in that concept. The trial was accomplished at Hematology Department of Hospital of Children of Damascus University, Syria. Acute lymphoblastic leukemia (ALL) children were the population from which 26 children were enrolled in the study. They were aged between 3 and 6 years old and were randomly referred according to the intervention into two groups, Aloe-vera (AV) and sodium bicarbonate 5% (13 each). Spongeous sticks were used to help in applying the material on tongue, labial and buccal mucosa, lips, floor of the mouth, and hard palate. Two blinded external examiners evaluated oral mucosa weekly for up to 2 months using the World Health Organization grading scale. Mann-Whitney U test was used to analyze data. According to the observed findings, CIOM degrees were less severe in the aloe-vera group than in the sodium bicarbonate group. Statistically significant difference of occurrence of different CIOM degrees between groups was recorded in the 2nd, 3rd, 4th, and 7th weeks of follow-up period. Moreover, Mann-Whitney U test indicated that patients in the sodium bicarbonate group began CIOM sooner than those in the aloe-vera group with a statistically significant difference (p = .001). These findings show that topical application of aloe-vera solution is effective in the prevention of CIOM in ALL children.
Identifier
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<a href="http://doi.org/10.1080/24694193.2020.1727065" target="_blank" rel="noreferrer noopener">10.1080/24694193.2020.1727065</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Alhaddad M
Alkhouli M
aloe-vera
Chemotherapy
Comprehensive Child Adolescent Nursing
Laflouf M
Leukemia
Oncology 2020 List
oral mucositis
Prevention
-
Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000614" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000614</a>
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Title
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Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer
Publisher
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Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; female; major clinical study; male; article; cancer recurrence; adolescent; satisfaction; caregiver; cancer resistance; Advanced cancer
Creator
An entity primarily responsible for making the resource
Akard T F; Wray S; Friedman D L; Dietrich M S; Hendricks-Ferguson V; Given B; Gerhardt C A; Hinds P S; Gilmer M J
Description
An account of the resource
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000614" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000614</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Advanced Cancer
Akard T F
Article
Cancer Recurrence
cancer resistance
Caregiver
Child
Dietrich M S
Female
Friedman D L
Gerhardt C A
Gilmer M J
Given B
Hendricks-Ferguson V
Hinds P S
Human
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
Major Clinical Study
Male
Oncology 2020 List
Palliative Therapy
Satisfaction
Wray S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0139</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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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
Publisher
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Journal of palliative medicine
Date
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2020
Subject
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quality of life; pediatric cancer; pediatric palliative care; internet-based intervention
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Akard T F; Dietrich M S; Friedman D L; Wray S; Gerhardt C A; Hendricks-Ferguson V; Hinds P S; Rhoten B; Gilmer M J
Description
An account of the resource
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective(s): This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design(s): This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N=150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Result(s): Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusion(s): This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0139</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).
2020
Akard T F
Dietrich M S
Friedman D L
Gerhardt C A
Gilmer M J
Hendricks-Ferguson V
Hinds P S
internet-based intervention
Journal of Palliative Medicine
Oncology 2020 List
Pediatric Cancer
Pediatric Palliative Care
Quality Of Life
Rhoten B
Wray S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1080/09699260.2020.1826778" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/09699260.2020.1826778</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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Improved parent-child communication following a RCT evaluating a legacy intervention for children with advanced cancer
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Progress in Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatric; palliative care; cancer; parent-child communication; parent-child relationship; father-child relationship; family relationships; web-based intervention
Creator
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Akard T F; Dietrich M S; Friedman D L; Gerhardt C A; Given B; Hendricks-Ferguson V; Hinds P S; Ridner S H; Beckmann N; Gilmer M J
Description
An account of the resource
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy intervention on parent-child communication. Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Clinical Trials Registry: Number NCT04059393. Copyright © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/09699260.2020.1826778" target="_blank" rel="noreferrer noopener">10.1080/09699260.2020.1826778</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).
2020
Akard T F
Beckmann N
Cancer
Dietrich M S
family relationships
father-child relationship
Friedman D L
Gerhardt C A
Gilmer M J
Given B
Hendricks-Ferguson V
Hinds P S
Oncology 2020 List
Palliative Care
parent-child communication
parent-child relationship
Pediatric
Progress In Palliative Care
Ridner S H
web-based intervention
-
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
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1186/s12910-020-0447-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12910-020-0447-x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Important situations that capture moral distress in paediatric oncology
Publisher
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BMC Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Paediatric oncology; Healthcare professionals; Hospital settings; Medical doctors; Moral distress; Nursing assistants; Registered nurses
Creator
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Af Sandeberg M; Bartholdson C; Pergert P
Description
An account of the resource
BACKGROUND: The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents' unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish paediatric MDS-R, among healthcare professionals (HCPs) in paediatric oncology. METHODS: In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach's alpha and inter-item correlation test. HCPs (n = 278) at all six Swedish paediatric oncology centres participated (> 89%). The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. RESULTS: Nursing assistants (NAs) reported higher intensity and lower frequency on all added items; registered nurses (RNs) reported a higher frequency on item 22-25; medical doctors (MDs) reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. CONCLUSION: In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12910-020-0447-x" target="_blank" rel="noreferrer noopener">10.1186/s12910-020-0447-x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Af Sandeberg M
Bartholdson C
Bmc Medical Ethics
Healthcare Professionals
Hospital settings
Medical doctors
Moral Distress
Nursing assistants
Oncology 2020 List
Paediatric oncology
Pergert P
Registered nurses