1
40
13
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.4103/jrms.jrms_268_22" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4103/jrms.jrms_268_22</a>
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Title
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The physical and psychological outcomes of art therapy in pediatric palliative care: A systematic review
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Journal of Research in Medical Sciences
Date
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2023
Subject
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Palliative Care; pediatric; neoplasm; cancer; Art therapies
Creator
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Motlagh EG; Bakhshi M; Davoudi N; Ghasemi A; Moonaghi HK
Description
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BACKGROUND: The integration of art therapy in health care is a growing trend in the care of cancer patients. Therefore, this study aimed to identify the physical and mental benefits of art in children with cancer. MATERIALS AND METHODS: A systematic review of English articles using Google Scholar, MEDLINE via PubMed, Scopus, the Cochrane Database of Systematic Reviews, and the Web of Science was conducted. Relevant keywords for cancer, child, art therapy and their synonyms were used accordingly. All searches were conducted to December 31, 2021.Relevant articles were included studies published in English and involving children aged 0-18 years. Studies evaluated the effects of art therapy in children with cancer. RESULTS: Seventeen studies had inclusion criteria, of which 12 studies were performed by clinical trial and 5 studies were performed by quasi-experimental method. Sixteen studies evaluated one type of art-therapy intervention, while one study used a combination of art-therapy approaches.The results showed that art-based interventions in the physical dimension lead to more physical activity, stability in breathing, and heart rate, and these children reported less pain. In the dimensions of psychology had less anxiety, depression, and anger but at the same time had a better quality of life and more coping-related behaviors. CONCLUSION: It seems that the use of art therapy in pediatric palliative care with cancer can have good physical and psychological results for the child, but it is suggested to evaluate the effects of these interventions in children at the end of life.
Identifier
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<a href="http://doi.org/10.4103/jrms.jrms_268_22" target="_blank" rel="noreferrer noopener">10.4103/jrms.jrms_268_22</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
2023 SE3 - Oncology
Art therapies
Bakhshi M
Cancer
Davoudi N
Ghasemi A
Journal of Research in Medical Sciences
Moonaghi HK
Motlagh EG
Neoplasm
Palliative Care
Pediatric
-
Dublin Core
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Title
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2022 Special Edition 3 - 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0154</a>
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Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
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Journal of adolescent and young adult oncology
Date
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2022
Creator
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Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Description
An account of the resource
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</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
2022 Special Edition 3 - Oncology List
Adolescent
adolescent and young adult
Bakitas M
Cancer
Caregiver
Communication
Currie ER
Death
End Of Life
Female
Gilbertson-White S
Human
interpersonal
Journal Of Adolescent And Young Adult Oncology
Keenan MA
Lindley LC
Mack JW
Neoplasm
Palliative Care
Physician-patient relationship
Psychology
Roeland EJ
Schulz GL
Sisk BA
Terminal Care
Young Adult
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319900301</a>
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Title
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Regret and unfinished business in parents bereaved by cancer: A mixed methods study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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caregivers; decision-making; grief; neoplasm; pediatric; Regret
Creator
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Lichtenthal WG; Roberts KE; Catarozoli C; Schofield E; Holland JM; Fogarty JJ; Coats TC; Barakat LP; Baker JN; Brinkman TM; Neimeyer RA; Prigerson HG; Zaider T; Breitbart W; Wiener L
Description
An account of the resource
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
Identifier
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<a href="http://doi.org/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">10.1177/0269216319900301</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
2022 Special Edition 2 - Parent Perspectives
Baker JN
Barakat LP
Breitbart W
Brinkman TM
Caregivers
Catarozoli C
Coats TC
Decision-making
Fogarty JJ
Grief
Holland JM
Lichtenthal WG
Neimeyer RA
Neoplasm
Palliative Medicine
Pediatric
Prigerson HG
regret
Roberts KE
Schofield E
Wiener L
Zaider T
-
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/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319900301</a>
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Title
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Regret and unfinished business in parents bereaved by cancer: A mixed methods study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatric; neoplasm; grief; decision-making; caregivers; Regret
Creator
An entity primarily responsible for making the resource
Lichtenthal W G; Roberts K E; Catarozoli C; Schofield E; Holland J M; Fogarty J J; Coats T C; Barakat L P; Baker J N; Brinkman T M; Neimeyer R A; Prigerson H G; Zaider T; Breitbart W; Wiener L
Description
An account of the resource
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
Identifier
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<a href="http://doi.org/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">10.1177/0269216319900301</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
Baker J N
Barakat L P
Breitbart W
Brinkman T M
Caregivers
Catarozoli C
Coats T C
Decision-making
Fogarty J J
Grief
Holland J M
Lichtenthal W G
Neimeyer R A
Neoplasm
Oncology 2020 List
Palliative Medicine
Pediatric
Prigerson H G
regret
Roberts K E
Schofield E
Wiener L
Zaider T
-
Dublin Core
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Title
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2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1590/0034-7167-2018-0121" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/0034-7167-2018-0121</a>
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Title
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Nursing interventions in palliative care in Pediatric Oncology: an integrative review
Publisher
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Revista Brasileira de Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; child; neoplasm; nursing diagnosis; palliative care
Creator
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Sousa A; Silva L F D; Paiva E D
Description
An account of the resource
OBJECTIVE: to identify, in scientific productions, nursing interventions in palliative care in children and adolescents with cancer. METHOD: integrative review of the literature through the databases: CINAHL, MEDLINE, IBECS, LILACS and SCIELO, carried out in October and November 2017. RESULTS: we analyzed 18 articles that met the inclusion criteria. The results showed that, among the articles selected, Brazil is the country with the largest number of publications and that interventions such as music therapy, massage, ludic application, early consultation of palliative care, social interventions and physical exercises aimed at the resolution of a specific symptom obtained better results when compared to interventions that aimed at the comprehensiveness of palliative care. FINAL CONSIDERATION: we conclude that greater emphasis should be given to palliative care in academic and professional training and that further studies in search of the best evidence should be conducted to support nursing Evidence-Based Practices.
Identifier
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<a href="http://doi.org/10.1590/0034-7167-2018-0121" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2018-0121</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).
2019
Adolescent
Child
Neoplasm
nursing diagnosis
Oncology 2019 List
Paiva E D
Palliative Care
Revista Brasileira de Enfermagem
Silva L F D
Sousa A
-
Dublin Core
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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/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/s1980-220x2018049603521</a>
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Title
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From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional
Publisher
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Revista da Escola de Enfermagem da USP
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
bereavement; child; death; family nursing; hospitalization; hospitalized; neoplasm; Professional-Family Relations
Creator
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Santos M R D; Wiegand D L; Sa N N; Misko M D; Szylit R
Description
An account of the resource
OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. RESULTS: The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. CONCLUSION: The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.
Identifier
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<a href="http://doi.org/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">10.1590/s1980-220x2018049603521</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).
2019
Bereavement
Child
Death
Family Nursing
Hospitalization
Hospitalized
Misko M D
Neoplasm
Oncology 2019 List
Professional-family Relations
Revista da Escola de Enfermagem da USP
Sa N N
Santos M R D
Szylit R
Wiegand D L
-
Dublin Core
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Title
A name given to the resource
May 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
May 2019 List
URL Address
<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951518000172</a>
Dublin Core
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Title
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Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
Publisher
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Palliative & Supportive 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
adolescent; child; human; pain; female; male; palliative therapy; article; adult; qualitative research; caregiver; life; systematic review; pediatric palliative care; Cinahl; Medline; PsycINFO; pediatric patient; neoplasm; children's voice; language; Meta-summary; publication; voice
Creator
An entity primarily responsible for making the resource
Ghirotto L; Busani E; Salvati M; Di Marco V; Caldarelli V; Artioli G
Identifier
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<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">10.1017/S1478951518000172</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).
Description
An account of the resource
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. METHOD(S): A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.
2019
Adolescent
Adult
Article
Artioli G
Busani E
Caldarelli V
Caregiver
Child
children's voice
Cinahl
Di Marco V
Female
Ghirotto L
Human
Language
Life
Male
May 2019 List
Medline
Meta-summary
Neoplasm
Pain
Palliative & Supportive Care
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Psycinfo
publication
Qualitative Research
Salvati M
Systematic Review
Voice
-
Dublin Core
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Title
A name given to the resource
2018 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.3389/fpubh.2018.00106" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fpubh.2018.00106</a>
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Title
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Development and Implementation of a Pediatric Palliative Care Program in a Developing Country
Publisher
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Frontiers in Public 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
Bangladesh; Children; Developing Countries; Hospices; neoplasm; Palliative Care; Patient comfort; Pilot project
Creator
An entity primarily responsible for making the resource
Doherty M; Thabet C
Description
An account of the resource
Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Objectives: Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Setting: Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. Results: We describe 4 key elements which were crucial for the success of this program: 1. Raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care 2. Providing education and training on pediatric palliative care for clinical staff 3. Forming a pediatric palliative care team 4. Collecting data to characterize the need for pediatric palliative care. Conclusions: This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fpubh.2018.00106" target="_blank" rel="noreferrer noopener">10.3389/fpubh.2018.00106</a>
2018
Bangladesh
Children
Developing Countries
Developing World 2018 List
Doherty M
Frontiers In Public Health
Hospices
Neoplasm
Palliative Care
Patient Comfort
Pilot project
Thabet C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.416</a>
Dublin Core
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Title
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Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Creator
An entity primarily responsible for making the resource
Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
2018
Child
conference abstract
Daffern K
Death
Diagnosis
Dyspnea
February 2019 List
Female
Hospice
Human
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neoplasm
Pain
Patient Care
Rapoport A
Ross S
Salminen R
Seizure
Terminal Care
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14331</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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All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Publisher
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Acta Paediatrica, International Journal of Paediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Creator
An entity primarily responsible for making the resource
Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Description
An account of the resource
Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. Methods: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Identifier
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<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
accident
Acta Paediatrica, International Journal of Paediatrics
Adolescent
Adult
all cause mortality
Article
automutilation
Child
Childhood Mortality
Chromosome Aberration
Congenital Malformation
Death
Denmark
Ekholm O
Epidemiology
Home
Human
Infant
Infant Mortality
International Classification of Diseases
Lykke C
Neoplasm
November 2018 List
Olsen M
Perinatal Death
Priority Journal
Schmiegelow K
Sjogren P
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000146</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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Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
Creator
An entity primarily responsible for making the resource
Akard TF; Wray S; Gilmer Mary Jo
Description
An account of the resource
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
advertizing
Akard TF
Article
Backlog
Cancer Nursing
Cancer Palliative Therapy
Cancer Patient
Cancer Recurrence
Cancer Research
Caregiver
Child
Childhood Cancer
click
computer
Diseases
Facebook
Female
Gilmer Mary Jo
Health Survey
Human
Income
Information Processing
Internet
Interpersonal Communication
Journal Article
legal guardian
Major Clinical Study
Male
mobile phone
Neoplasm
Nurse
Oncology
Only Child
Palliative Therapy
Parent
Parental Attitude
participant recruitment
Patient
Population
Priority Journal
Sample Size
School Child
social media
social network
Video Recording
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
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jns.2017.08.093</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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Neurological palliative care in children
Publisher
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Journal Of The Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics
Creator
An entity primarily responsible for making the resource
Fuhrer M
Description
An account of the resource
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">10.1016/j.jns.2017.08.093</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
Child
Chromosome Aberration
Controlled Study
Female
Führer M
Home Care
Hospice
Human
Icd-10
Infant
Journal Of The Neurological Sciences
Major Clinical Study
Male
March 2018 List
Metabolic Disorder
Mortality
Neoplasm
nervous system malformation
Neurology
Palliative Therapy
Preschool Child
Retrospective Study
Statistics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a href="https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31</a>
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
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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Palliative Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Creator
An entity primarily responsible for making the resource
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Description
An account of the resource
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</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).
103-90-2 (paracetamol)
1095-90-5 (methadone)
125-56-4 (methadone)
12794-10-4 (benzodiazepine)
137-58-6 (lidocaine)
2017
23142-53-2 (methadone)
24847-67-4 (lidocaine)
297-88-1 (methadone)
437-38-7 (fentanyl)
53663-61-9 (opiate)
56934-02-2 (lidocaine)
60142-96-3 (gabapentin)
73-78-9 (lidocaine)
76-99-3 (methadone)
8002-76-4 (opiate)
8008-60-4 (opiate)
Acute Stress Disorder
Alcohol Consumption
Anticonvulsive Agent
Appetite
Benzodiazepine
Brill P
Connelly E
Corticosteroid
Distress Syndrome
Dyspnea
Fentanyl
Gabapentin
Hair Loss
Health Care Personnel
Health Care System
Hospital
Howk T
Human
Intensive Care Unit
Lidocaine
Major Depression
Medical Staff
Methadone
Mortality
Nausea And Vomiting
Neoplasm
November 2017 List
Obesity
Opiate
Palliative Therapy
Paracetamol
Paralysis
Patient Care Planning
Pediatric Oncology
Pillai R
Postovsky S
Priority Journal
Prostaglandin/ec [endogenous Compound]
Quality Of Life
Tracheostomy
Wasilewski-Masker K
Wrammert KC