1
40
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Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">http://doi.org/10.25259/ijpc_3_21</a>
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Title
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The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
Publisher
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Indian Journal of Palliative Care
Date
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2021
Subject
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Challenges; child; Coping; life-limiting condition; Need; Neurology; Paediatric palliative care
Creator
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Taib F; Beng KT; Chan LC
Description
An account of the resource
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND METHODS: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. RESULTS: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. CONCLUSION: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
Identifier
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<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_3_21</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).
2021
Beng KT
challenges
Chan LC
Child
Coping
February 2022 List
Indian Journal Of Palliative Care
Life-limiting Condition
Need
Neurology
paediatric palliative care
Taib F
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.27457</a>
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Title
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Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
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JAMA network open
Date
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2021
Subject
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challenges; children; hospice; nurse perspectives; serious illness
Creator
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Porter AS; Zalud K; Applegarth J; Woods C; Gattas M; Rutt E; Williams K; Baker JN; Kaye EC
Description
An account of the resource
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.27457</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).
2021
Applegarth J
Baker JN
challenges
Children
December 2021 List
Gattas M
Hospice
JAMA Network Open
Kaye EC
nurse perspectives
Porter AS
Rutt E
Serious Illness
Williams K
Woods C
Zalud 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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October 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2021.27.6.303" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2021.27.6.303</a>
Dublin Core
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Title
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Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic
Publisher
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International Journal of Palliative Nursing
Date
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2021
Subject
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Challenges; Covid-19; Paediatric intensive care unit; Paediatric palliative care
Creator
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Hasanpour M; Pouraboli B; Mohammadpour M; Tahmasebi M; Sabeti F
Description
An account of the resource
BACKGROUND: The integration of paediatric palliative care into the Iranian health system is essential. AIMS: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. METHODS: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. FINDINGS: Ten main categories were extracted from data analysis, including 'caring in COVID-19', 'communication and family centre care', 'breaking bad news', palliative care training', 'pain and symptom management', 'support of the child, family and clinical team', 'physical environment', 'guidelines', 'specialised staff' and 'home based palliative care'. CONCLUSION: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2021.27.6.303" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.303</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).
2021
challenges
COVID-19
Hasanpour M
International Journal of Palliative Nursing
Mohammadpour M
October 2021 List
Paediatric Intensive Care Unit
paediatric palliative care
Pouraboli B
Sabeti F
Tahmasebi M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2020 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2019-0306" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2019-0306</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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Challenges following hospital discharge for children with medical complexity
Publisher
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Hospital Pediatrics
Date
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2020
Subject
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challenges; children with medical complexity; hospital discharge; pediatrics
Creator
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Musial A; Butts B; Loechtenfeldt A; Herrmann L E; Schmidlin E; Kelley J; Hail T; White C M; Thomson J
Description
An account of the resource
OBJECTIVES: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls. METHOD(S): In this prospective study, we designed and executed a postdischarge phone call for patients discharged from an inpatient complex care team between May and November 2018. The call included dichotomous and open-ended questions to identify challenges regarding health status, follow-up appointments, medications, home nursing, medical supplies and/or equipment, and discharge instructions. These were recorded in the electronic health record. Details regarding identified challenges and corrective actions were categorized by 2 reviewers and adjudicated by a third reviewer if disagreement occurred. RESULT(S): Descriptive statistics were used to summarize these findings. Sixty-seven phone calls were completed within 1 week of discharge. Two-thirds of calls identified at least 1 challenge, and more than one-third of calls identified 2 or more challenges for a total of 90 challenges. The most common challenges involved health status (26.7%), follow-up appointments (21.1%), and medications (20%). The majority of challenges were addressed by either caregivers or the multidisciplinary team, with the exception of home nursing challenges. CONCLUSION(S): Discharge challenges were commonly identified by caregivers of children with medical complexity. The majority of postdischarge challenges were addressed, with some addressed by families themselves. These results can inform health care providers about challenges to anticipate and suggest future interventions to mitigate anticipated challenges for a safe discharge and transition of care for these at-risk patients. Copyright © 2020 by the American Academy of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2019-0306" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0306</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).
2020
Butts B
challenges
Children With Medical Complexity
Hail T
Herrmann L E
hospital discharge
Hospital Pediatrics
Kelley J
Loechtenfeldt A
Musial A
October 2020 List
Pediatrics
Schmidlin E
Thomson J
White C M
-
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/10.1089/jayao.2018.0154" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2018.0154</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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An Exploratory Study into the Experience of Health Care Professionals Caring for Adolescents and Young Adults with Incurable Cancer
Publisher
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Journal of adolescent and young adult oncology.
Date
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2019
Subject
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adolescent; adult; article; Australia; cancer center; challenges; enablers; exploratory research; health care personnel; health care professionals; human; incurable disease; multidisciplinary; semi structured interview; young adult
Creator
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Berger I; Thompson K; Joubert L
Description
An account of the resource
Adolescents and young adults 15 to 25 years of age with incurable cancer are a unique patient group. There is growing evidence of the emotionally taxing nature of this work, yet limited understanding of the health care professional experience across professional disciplines. This exploratory study, comprising in-depth semistructured interviews, undertaken at a major cancer center in Melbourne, Australia, describes the challenges facing health care professionals and the factors enabling them to deliver care with greater confidence. The findings provide a platform for further research with key recommendations to enhance the delivery of care to young people with a life-limiting cancer diagnosis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2018.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2018.0154</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Adult
Article
Australia
Berger I
cancer center
challenges
enablers
Exploratory Research
Health Care Personnel
Health care professionals
Human
incurable disease
Joubert L
Journal of adolescent and young adult oncology.
multidisciplinary
Oncology 2019 List
Semi Structured Interview
Thompson K
Young Adult