1
40
477
-
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Title
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March 2024 List
Text
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March List 2024
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<a href="http://doi.org/10.1136/bmj.m2502" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmj.m2502</a>
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Judge rules that baby should be removed from ventilator and given palliative care
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BMJ Clinical Research
Date
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2020
Subject
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artificial ventilation; palliative therapy; ventilator; article; human; infant; Palliative Care; Ventilators Mechanical
Creator
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Dyer C
Description
An account of the resource
An eight week old baby should no longer be kept alive on a ventilator and should be given palliative care to spare him the risk of a “painful, agonising death,” a High Court judge has declared.1 There are no further treatment options for the baby, who was referred to in court as Z, said Mr Justice Hayden. The judge was satisfied that intensive care was futile and that it had “come to place an insupportable burden” on the child. Hayden granted Sheffield Teaching Hospitals NHS Foundation Trust a declaration that it would be in the best interests of the baby to leave intensive care and to have palliative care only. The trust had hoped to reach agreement with the child’s Muslim parents and avoid a court application. But because of …
Identifier
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<a href="http://doi.org/10.1136/bmj.m2502" target="_blank" rel="noreferrer noopener">10.1136/bmj.m2502</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
Artificial Ventilation
BMJ Clinical Research
Dyer C
Human
Infant
March List 2024
Palliative Care
Palliative Therapy
ventilator
Ventilators Mechanical
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jocn.15368</a>
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Title
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The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
Publisher
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Journal of Clinical Nursing
Date
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2020
Subject
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Humans; Child; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
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Marsh, Lynne; Brown, Michael; McCann, Edward
Description
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AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</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).
*Developmental Disabilities/px [Psychology]
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adult
Attitude Of Health Personnel
Brown, Michael
Child
Child, Preschool
Developmental Disabilities/di [Diagnosis]
Female
Humans
Intellectual Disability/di [Diagnosis]
Journal of Clinical Nursing
Male
Marsh, Lynne
McCann, Edward
Middle Aged
Qualitative Research
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/15524256.2019.1703877</a>
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Engaging Fathers in Pediatric Palliative Care Research
Publisher
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Journal Of Social Work In End-Of-Life and 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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Humans; Child; child; Male; pediatrics; Professional-Family Relations; controlled study; male; Adult; child health; perception; palliative therapy; Adaptation, Psychological; Caregiver; *Palliative Care/px [Psychology]; interview; health care personnel; wellbeing; qualitative research; father; *Fathers/px [Psychology]; *Father-Child Relations; Paternal caregivers; research engagement; sample recruitment challenges; *Paternal Behavior/px [Psychology]
Creator
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Nicholas, D.; Beaune, L.; Belletrutti, M.; Blumberg, J.; Ing, S.; Rapoport, A.; Barrera, M.
Description
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Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
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<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</a>
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*Father-Child Relations
*Fathers/px [Psychology]
*Palliative Care/px [Psychology]
*Paternal Behavior/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Barrera, M.
Beaune, L.
Belletrutti, M.
Blumberg, J.
Caregiver
Child
Child Health
Controlled Study
Father
Health Care Personnel
Humans
Ing, S.
Interview
Journal of social work in end-of-life and palliative care
Male
Nicholas, D.
Palliative Therapy
Paternal caregivers
Pediatrics
Perception
Professional-family Relations
Qualitative Research
Rapoport, A.
research engagement
sample recruitment challenges
Wellbeing
-
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216320979153</a>
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A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
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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Humans; Child; children; Male; Palliative care; Qualitative Research; *Parents; Anthropology, Cultural; fathers; healthcare; life-limiting; meta-ethnography; *Fathers
Creator
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Postavaru, G. I.; Swaby, H.; Swaby, R.
Description
An account of the resource
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
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<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</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).
*Fathers
*Parents
2020
2023 SE4 - Parent Perspectives
Anthropology, Cultural
Child
Children
Fathers
healthcare
Humans
Life-limiting
Male
meta-ethnography
Palliative Care
Palliative Medicine
Postavaru, G. I.
Qualitative Research
Swaby, H.
Swaby, R.
-
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Title
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August 2023 List
Text
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August List 2023
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002228" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000002228</a>
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Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Child; child; human; palliative therapy; Only Child; comorbidity; editorial; chronic disease
Creator
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Piva J; Fontela P
Description
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Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant increase in the number of pediatric patients with special medical needs. The 2009–2010 National Survey of Children with Special Health Care Needs estimated that 15.1% (11.2 million children) of U.S. children have some kind of medical dependency and that 23% of households with children include at least one child with a special healthcare need (1). Importantly, pediatric patients with special medical needs present wide variation in terms of their medical complexity, functional limitations, and resource need (2,3). [...]
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<a href="http://doi.org/10.1097/PCC.0000000000002228" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002228</a>
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2020
August List 2044
Child
Chronic Disease
Comorbidity
Editorial
Fontela P
Human
Only Child
Palliative Therapy
Pediatric Critical Care Medicine
Piva J
-
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/ecc.13388" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ecc.13388</a>
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Experiences and Needs of Parents of Palliative Paediatric Oncology Patients: A Meta-Synthesis
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European Journal of Cancer Care
Date
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2020
Subject
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child; cancer; parents; palliative care; end-of-life; paediatric
Creator
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Tan AJN; Tiew LH; Shorey S
Description
An account of the resource
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients. METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic. RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope. CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.
Identifier
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<a href="http://doi.org/10.1111/ecc.13388" target="_blank" rel="noreferrer noopener">10.1111/ecc.13388</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
2021 Special Edition - Oncology
Cancer
Child
end-of-life
European Journal Of Cancer Care
Paediatric
Palliative Care
Parents
Shorey S
Tan AJN
Tiew LH
-
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28837</a>
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Patterns of Medication Use at End of Life by Pediatric Inpatients with Cancer
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Pediatric Blood and Cancer
Date
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2020
Subject
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end of life; medication use; pediatric cancer care
Creator
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Prozora S; Shabanova V; Ananth P; Pashankar F; Kupfer GM; Massaro SA; Davidoff AJ
Description
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OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017) were included (N = 1659). Medications were categorized as opioid, benzodiazepine, gastrointestinal related, chemotherapy, anti-infectives, or vasopressors. Exposure to each group was ascertained for all patients at 1 week and 1 day prior to death. Factors associated with exposure were examined using generalized estimating equations, and summarized using adjusted odds ratios (aORs). RESULTS: Over the last week of life, there was increased use of opioids (76% to 82%, aOR = 1.55, P < .001) and benzodiazepines (53% to 66%, aOR = 1.36, P = .02), while gastrointestinal-related medication use decreased (92% to 89%, aOR = 0.69, P = .001). Patients had decreased exposure to chemotherapy (10% to 5%, aOR = 0.46, P < .001) and anti-infectives (82% to 73%, aOR = 0.41, P = .002). Vasopressor use increased as death approached (15% to 28%, aOR = 1.67, P = .04). Factors significantly associated with exposure varied with medication category, and included age, race, length of stay, malignancy type, death in the intensive care unit, history of hematopoietic stem cell transplant, and do-not-resuscitate status. CONCLUSION: During the week preceding death, administration of symptom management medications increased for children with cancer, but use was not universal. Potentially life-sustaining medications were often continued. Variability in utilization suggests differences in provider/family decision making that warrant further study to develop an evidence-based approach to end-of-life care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener">10.1002/pbc.28837</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
2021 Special Edition - Oncology
Ananth P
Davidoff AJ
End Of Life
Kupfer GM
Massaro SA
medication use
Pashankar F
Pediatric Blood & Cancer
pediatric cancer care
Prozora S
Shabanova V
-
Dublin Core
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jayao.2019.0040" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2019.0040</a>
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Documentation of Palliative and End-of-Life Care Process Measures Among Young Adults Who Died of Cancer: A Natural Language Processing Approach
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Journal of Adolescent and Young Adult Oncology
Date
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2020
Subject
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Oncology
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Poort H; Zupanc SN; Leiter RE; Wright AA; Lindvall C
Description
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Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.
Identifier
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<a href="http://doi.org/10.1089/jayao.2019.0040" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0040</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
2021 Special Edition - Oncology
Journal Of Adolescent And Young Adult Oncology
Leiter RE
Lindvall C
Oncology
Poort H
Wright AA
Zupanc SN
-
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951520001212</a>
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Title
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Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Bereavement; Grief; Pediatric oncology; Parents; Coping
Creator
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Pohlkamp L; Sveen J; Kreicbergs U; Lövgren M
Description
An account of the resource
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer. METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses. RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage. SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
Identifier
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<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener">10.1017/s1478951520001212</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
2021 Special Edition - Oncology
Bereavement
Coping
Grief
Kreicbergs U
Lövgren M
Palliative & Supportive Care
Parents
Pediatric Oncology
Pohlkamp L
Sveen J
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/apa.15415" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.15415</a>
Dublin Core
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Title
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Customised Pediatric Palliative Care: Integrating Oncological and Palliative Care Priorities
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Oncology, intensive care unit; child; human; controlled study; female; hospice; male; cohort analysis; article; prognosis; cancer therapy; clinical article; human tissue; cancer patient; cancer prognosis; central nervous system tumor; phase 1 clinical trial (topic); Childhood cancer; cancer staging; Palliative therapy; sarcoma
Creator
An entity primarily responsible for making the resource
Podda M; Schiavello E; Visconti G; Clerici CA; Armiraglio M; Casiraghi G; Ambroset S; Grossi A; Rizzi B; Lonati G; Massimino M
Description
An account of the resource
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the paediatric oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort with a cohort of patients resident in the same area treated before the introduction of early palliative care. Method(s): A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients' problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009 and 2014. Result(s): Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumours or sarcomas were referred to the team. Comparing the results with the previous cohort, there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time. From 2015, none of the patients died in an intensive care unit. Conclusion(s): Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage. Copyright © 2020 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd
Identifier
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<a href="http://doi.org/10.1111/apa.15415" target="_blank" rel="noreferrer noopener">10.1111/apa.15415</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
2021 Special Edition - Oncology
Acta Paediatrica
Ambroset S
Armiraglio M
Casiraghi G
Clerici CA
Grossi A
Lonati G
Massimino M
Oncology
Podda M
Rizzi B
Schiavello E
Visconti G
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jayao.2020.0149" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2020.0149</a>
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Title
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Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom
Publisher
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Journal of Adolescent and Young Adult Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Oncology
Creator
An entity primarily responsible for making the resource
Murray H; Pettitt N; Tomas J
Description
An account of the resource
The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional specialist center in the United Kingdom, and who died between 2013 and 2019, for evidence of ACP. Eighty-four patients were included. ACP was identified for 67% of patients. Sixty-four percent expressed a preferred place of death; actual place of death reflected this in 65% of cases. Creation of a bespoke document may help to standardize ACP and improve end-of-life care.
Identifier
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<a href="http://doi.org/10.1089/jayao.2020.0149" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0149</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
2021 Special Edition - Oncology
Journal Of Adolescent And Young Adult Oncology
Murray H
Oncology
Pettitt N
Tomas J
-
Dublin Core
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Title
A name given to the resource
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/papr.12965" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/papr.12965</a>
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Title
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Barriers and Adherence to Pain Management in Advanced Cancer Patients
Publisher
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Pain 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
palliative care; barriers; cancer pain; opioids; adherence to medication
Creator
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Mercadante S; Adile C; Tirelli W; Ferrera P; Penco I; Casuccio A
Description
An account of the resource
AIM: To assess patients' barriers to pain management and analgesic medication adherence in advanced cancer patients METHODS: Prospective cross-sectional study in advanced cancer patients receiving chronic opioid therapy. Age, gender, cancer diagnosis, Karnofsky level, and educational status were recorded. collected. These included age, gender, cancer diagnosis, Karnofsky level, and educational status. The Brief Pain Inventory (BPI), the Edmonton Symptom Assessment Scale (ESAS), the Memorial Delirium Assessment Scale (MDAS), the Barriers Questionnaire II (BQ-II), medication Adherence Rating Scale (MARS), and Hospital Anxiety and Depression Scale (HADS) were measured. RESULTS: One-hundred-thirteen patients were analyzed. The mean age was 68 (± 13) years and 59 (52%) were males. The mean Karnofsky status was 51.4 (SD 11.5). The mean value of BQ-II items was 1.77 (SD 0.7). BQ-II was independently related with HADS-D (p=0.033), and with total HADS (p=0.049). Negative side-effects and attitudes to psychotropic medication globally prevailed among MARS items. These items were independently associated with gender (P=0.030), pain (; p=0.003), and depression (p= 0.047). CONCLUSION: Barriers to pain management were mild. Psychological factors such as depression were the main factor associated with barriers. Poor adherence to analgesic medication was mostly manifested as negative side-effects and attitudes to psychotropic medication, was more frequent observed in females and was associated with ESAS items pain and depression.
Identifier
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<a href="http://doi.org/10.1111/papr.12965" target="_blank" rel="noreferrer noopener">10.1111/papr.12965</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
2021 Special Edition - Oncology
adherence to medication
Adile C
Barriers
cancer pain
Casuccio A
Ferrera P
Mercadante S
Opioids
Pain Practice
Palliative Care
Penco I
Tirelli W
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28696</a>
Dublin Core
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Title
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Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
Creator
An entity primarily responsible for making the resource
Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Description
An account of the resource
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</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
2021 Special Edition - Oncology
Adolescent
Adolescent Behavior
Adolescents
Adult
Advance Care Planning/statistics & Numerical Data
Baker JN
Cancer
Cheng YI
congruence
Cross-sectional Studies
Decision Making
Family
Family/psychology
Female
Follow-up Studies
Friebert S
funding from the American Cancer Society to adapt/translate this protocol into
Humans
Livingston J
Longitudinal Studies
Lyon ME
Male
Neoplasms/psychology/therapy
Pediatric Blood & Cancer
Prognosis
Quality Of Life
Religion and Medicine
Single-Blind Method
Spanish. There are no other conflicts of interest to disclose.
Spirituality
study from the National Institutes of Health. Maureen E. Lyon is also receiving
Thompkins J
Tweddle M
Wang J
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.08.035</a>
Dublin Core
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Title
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Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
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
bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
Creator
An entity primarily responsible for making the resource
Helton G; Wolfe J; Snaman JM
Description
An account of the resource
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</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
2021 Special Edition - Oncology
Adaptation Psychological
Adaptation Psychological/physiology
Arthritis Impact Measurement Scales
Attitude To Death
Bereaved Parents
Bereavement
Coronavirus Infections -- Psychosocial Factors
Coronavirus Infections/psychology
COVID-19
Disease Outbreaks
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Neoplasms
Pandemics
Parents -- Psychosocial Factors
Parents/psychology
Pediatric Cancer
Pneumonia Viral -- Psychosocial Factors
Pneumonia Viral/psychology
Snaman JM
Ways of Coping Questionnaire
Wolfe J
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.11.012</a>
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Title
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Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
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
2020
Subject
The topic of the resource
Bereavement; Grief; Parents; Childhood Cancer; Bereavement Support
Creator
An entity primarily responsible for making the resource
Helton G; Morris SE; Dole OR; Wolfe J; Snaman JM
Description
An account of the resource
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. OBJECTIVES: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. METHODS: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert-scale based with additional free text responses. RESULTS: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N=43, 88%), female (N=32, 65%), and non-Hispanic/Latino (N=43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. CONCLUSIONS: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</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
2021 Special Edition - Oncology
Bereavement
Bereavement Support
Childhood Cancer
Dole OR
Grief
Helton G
Journal of Pain and Symptom Management
Morris SE
Parents
Snaman JM
Wolfe J
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28804</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A Quality Improvement Project to Increase Palliative Care Team Involvement in Pediatric Oncology Patients
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
oncology; palliative care; pediatric palliative care; refractory cancer
Creator
An entity primarily responsible for making the resource
Farooki S; Olaiya O; Tarbell L; Clark NA; Linebarger JS; Stroh J; Ellis K; Lewing K
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. METHODS: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-do-study-act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. RESULTS: The 24-month baseline period included 30 patients who died and 25 newly diagnosed patients. The yearlong intervention period included six patients who died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult ≤ 30 days after diagnosis, 17% had template documentation of the rationale. CONCLUSION: Interventions utilized met the global aim, outcome, and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.
Identifier
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<a href="http://doi.org/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener">10.1002/pbc.28804</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
2021 Special Edition - Oncology
Clark NA
Ellis K
Farooki S
Lewing K
Linebarger JS
Olaiya O
Oncology
Palliative Care
Pediatric Blood & Cancer
Pediatric Palliative Care
refractory cancer
Stroh J
Tarbell L
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.033" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.03.033</a>
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Title
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A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
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
2020
Subject
The topic of the resource
child; hospice; Child; Humans; cancer; communication; palliative care; Communication; Terminal Care; Prospective Studies; hospice; Death; Pilot Projects; Hospice Care; goals-of-care; Neoplasms/therapy; cancer; palliative care; communication; Child; goals-of-care
Creator
An entity primarily responsible for making the resource
Moody KM; Hendricks-Ferguson VL; Baker R; Perkins S; Haase JE
Description
An account of the resource
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. Method(s): This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. Result(s): Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). Conclusion(s): COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.033</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
2021 Special Edition - Oncology
Baker R
Cancer
Child
Communication
Death
goals-of-care
Haase JE
Hendricks-Ferguson VL
Hospice
Hospice Care
Humans
Journal of Pain and Symptom Management
Moody KM
Neoplasms/therapy
Palliative Care
Perkins S
Pilot Projects
Prospective Studies
Terminal Care
-
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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2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1080/01635581.2020.1844244" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/01635581.2020.1844244</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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Undernutrition as an Aggravating Risk for Hospital Death in Critically Ill Children with Cancer
Publisher
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Nutrition and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Low resource setting; oncology
Creator
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Magri Teles ND; Silva Dcbd; Araujo OR; Maia Lemos PDS; Oliveira FLC
Description
An account of the resource
OBJECTIVES: Undernourished children with cancer are at major risk for adverse outcomes. We intended to model nutritional status as risk factor for hospital death. METHODS: Retrospective analysis of two cohorts of children admitted in an oncology/hematology intensive care unit. Logistic regression was used for model building. RESULTS: The derivation cohort had 155 patients, with a median age of 104.9 mo., and 36 deaths (23.2%). Twenty-eight children (18.1%) had the z score of the body mass index < -2. A multivariate model with the variables "relapse of oncological disease" (Odds Ratio 3.14, P = 0.025), "surgical case" (OR 0.22, P = 0.002), "intubation/mechanical ventilation" (OR 8.38, P = 0.000) and "body mass index z score < -2" (OR 3.21, P = 0.024) generated a logit with good predictive capacity for "hospital death". In the validation cohort, with 450 patients (median age of 92.7 mo.), the model was able to predict 55.5 of the 58 observed deaths (Standardized Mortality Rate = 1.04, 95% CI 0.80-1.34, P = 0.72), with P = 0.68 in the Hosmer test. The AUC was 0.90 (95% CI 0.86-0.93). CONCLUSION: Undernutrition increases the risk of death, and is a variable that should be included in predictive mortality algorithms.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/01635581.2020.1844244" target="_blank" rel="noreferrer noopener">10.1080/01635581.2020.1844244</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
2021 Special Edition 1 - Low Resource Settings
Araujo OR
Low resource setting
Magri Teles ND
Maia Lemos PDS
Nutrition And Cancer
Oliveira FLC
Oncology
Silva Dcbd
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.4103/ijpc.ijpc_197_19" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4103/ijpc.ijpc_197_19</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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Correlation of Pediatric Palliative Screening Scale and Quality of Life in Pediatric Cancer Patients
Publisher
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Indian Journal of 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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quality of life; pediatric; Palliative; Paediatric Palliative Screening scale
Creator
An entity primarily responsible for making the resource
Andriastuti M; Halim PG; Kusrini E; Bangun M
Description
An account of the resource
CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the treatment by acknowledging that it helps to ensure an ongoing focus on the quality of life (QOL) so that children still can enjoy their life. Several approaches have been used to identify children with the need of palliative care. AIMS: The aim was to describe the use of Paediatric Palliative Screening Scale (PaPaS Scale) and its depiction to the QOL of children with malignancies. SETTINGS AND DESIGN: A cross-sectional study was conducted in sixty children age 2-18 years with malignancies, who were consulted to the palliative team. SUBJECTS AND METHODS: Sixty participants were recruited randomly during the study. PaPaS Scale and QOL (using PedsQL™ cancer module 3.0) were assessed at the same time. Cutoff points of 67 for parent-proxy report and 68.9 for self-report were used, those who have scores <67 and <68.9 were grouped as low QOL group. PaPaS scale was divided into three groups: (1) no palliative care needs (score 10-14), (2) considered palliative care (15-24), and (3) need for palliative (≥25). STATISTICAL ANALYSIS: Differences between palliative score and QOL were analyzed using Chi-square and Fisher test. RESULTS: Children who have lower QOL based on parent-proxy report (<67) included 25 children; they consist of 16 children (64%) with score 10-14, four children (16%) with score 15-24, and five children (20%) with score ≥25. Children with higher QOL (16 children) consist of ten children (62.5%) with score 10-14, four children (25%) scores 15-24, and two children (12.5%) with score ≥25. In the self-report, children with low QOL (eight children) consist of four children (50%) with score 10-14, four children (50%) with score 15-24, and no children with score ≥ 25. Children with higher QOL (11 children) consist of eight children (72.2%) with score 10-14, two children (18.2%) with scores 15-24, and one child (9.1%) with score ≥25. Statistical analysis showed no correlation between PaPaS score and QOL of children with malignancies in parent-proxy report (P = 0.89) and self-report (P = 0.37). CONCLUSIONS: This study showed that children with malignancies already had lower QOL despite the low PaPaS scale they had. The results of this study support the provision of early palliative intervention, starting with a small proportion of intervention to improve the QOL of cancer child.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4103/ijpc.ijpc_197_19" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_197_19</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
2021 Special Edition 1 - Low Resource Settings
Andriastuti M
Bangun M
Halim PG
Indian Journal Of Palliative Care
Kusrini E
Paediatric Palliative Screening scale
Palliative
Pediatric
Quality Of Life
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12939-020-01252-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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Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Publisher
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International Journal for Equity in Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
Creator
An entity primarily responsible for making the resource
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
Description
An account of the resource
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-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
2021 Special Edition 1 - Low Resource Settings
Acute Disease
Adult
agency
Berkley JA
Caregivers
Charo A
Child Health
Child Mortality
Child Preschool
Childhood acute illness
Cohort Studies
Continuity Of Patient Care
Delivery of Health Care/standards
Family
Family Characteristics
Female
Health Facilities
Hospitalization
Humans
Infant
International Journal for Equity in Health
Kelley M
Kenya/epidemiology
Kimani MN
Male
Marsh V
Molyneux S
Muraya K
Njeru RW
Prospective Studies
Qualitative Research
Rural Population
Sanga G
Sarma H
Social Support
Treatment-seeking
Uddin MF
VULNERABILITY
Vulnerable Populations
Walson JL
Zakayo SM
-
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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2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s13524-019-00846-7</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
Publisher
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Demography
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; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Parents/psychology; Middle Aged; Young Adult; Risk Factors; Child Mortality; Bereavement; Child mortality; Intimate partner violence; West and Central Africa; Africa Central; Africa Western; Intimate Partner Violence/statistics & numerical data; Marriage/statistics & numerical data
Creator
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Weitzman A; Smith-Greenaway E
Description
An account of the resource
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Central African countries, we estimate multilevel discrete-time hazard models to determine how women's risk of intimate partner violence (IPV) varies with the death of children. We assess heterogeneity in this association across two surrounding circumstances: children's age at death and regional prevalence of child bereavement. Findings indicate that the risk of IPV initiation rises with the death of children under age 5-for whom women are most intensely responsible-but not with the death of older children. The effect of young child bereavement is most pronounced in regions where it is least prevalent among mothers-a finding not explained by concomitant regional variation in gender inequality, family norms, and infrastructural development. These findings highlight the importance of child mortality for family outcomes beyond fertility in the African context and demonstrate the prominent role of the broader mortality context in shaping these implications.
Identifier
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<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener">10.1007/s13524-019-00846-7</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
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adult
Africa Central
Africa Western
Bereavement
Child
Child Mortality
Child Preschool
Demography
Female
Humans
Infant
Infant Newborn
Intimate partner violence
Intimate Partner Violence/statistics & numerical data
Male
Marriage/statistics & numerical data
Middle Aged
Parents/psychology
Risk Factors
Smith-Greenaway E
Weitzman A
West and Central Africa
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0236498</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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Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean
Publisher
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PLoS One
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Young Adult; Developing Countries; Socioeconomic Factors; Latin America; Asia; Poverty; Cost of Illness; Global Health; Siblings; Caribbean Region; Mortality/trends; West Indies
Creator
An entity primarily responsible for making the resource
Smith-Greenaway E; Weitzman A
Description
An account of the resource
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and mortality in lower-income countries, the level, timing, intensity, and circumstances surrounding sibling mortality are likely to follow patterns distinct from those in higher-income settings. Thus, in this study, we offer a descriptive overview of sibling death in 43 countries across sub-Saharan Africa, South and Southeast Asia, and Latin America and the Caribbean. Specifically, we analyze Demographic and Health Survey data from nationally representative samples of 352,930 15- to 34-year-old women, born between 1985 and 2003, to document experiences of sibling death before age 25. On average, roughly one-third of individuals report a deceased sibling in these countries; estimates reach 40-50% of respondents in multiple African countries, particularly those that have experienced conflict and war. Although some sibling deaths occurred before the focal respondent was born, most bereaved individuals recalled a death during their lifetime-often in late childhood/early adolescence. High proportions of bereaved respondents report multiple sibling deaths, highlighting the clustering of deaths within families. Even so, bereaved individuals tend to come from large families and thus frequently have a comparable number of surviving siblings as people who never experienced a sibling die. Together, the results offer a window into global inequality in childhood experiences, and they attest to the need for research that explores the implications of sibling mortality for young people in world regions where the experience is concentrated.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236498</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
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adult
Asia
Caribbean Region
Child
Child Preschool
Cost Of Illness
Developing Countries
Female
Global Health
Humans
Infant
Infant Newborn
Latin America
Male
Middle Aged
Mortality/trends
PLoS One
Poverty
Siblings
Smith-Greenaway E
Socioeconomic Factors
Weitzman A
West Indies
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1186/s12913-020-05805-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-020-05805-2</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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Identifying the Know-Do Gap in Evidence-Based Neonatal Care Practices among Informal Health Care Providers-A Cross-Sectional Study from Ujjain, India
Publisher
An entity responsible for making the resource available
BMC Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Humans; Infant Newborn; Evidence-based practice; Middle Aged; Cross-Sectional Studies; India; Clinical Competence; Evidence-Based Practice; Knowledge; Infant Care; Health Personnel/psychology/statistics & numerical data; Informal healthcare providers; Neonatal care
Creator
An entity primarily responsible for making the resource
Mungai IG; Baghel SS; Soni S; Vagela S; Sharma M; Diwan V; Tamhankar AJ; Lundborg CS; Pathak A
Description
An account of the resource
BACKGROUND: More than a quarter of global neonatal deaths are reported from India, and a large proportion of these deaths are preventable. However, in the absence of robust public health care systems in several states in India, informal health care providers (IHCPs) with no formal medical education are the first contact service providers. The aim of this study was to assess the knowledge of IHCPs in basic evidence-based practices in neonatal care in Ujjain district and investigated factors associated with differences in levels of knowledge. METHODS: A cross-sectional survey was conducted using a questionnaire with multiple-choice questions covering the basic elements of neonatal care. The total score of the IHCPs was calculated. Multivariate quantile regression model was used to look for association of IHCPs knowledge score with: the practitioners' age, years of experience, number of patients treated per day, and whether they attended children in their practice. RESULTS: Of the 945 IHCPs approached, 830 (88%) participated in the study. The mean ± SD score achieved was 22.3 ± 7.7, with a median score of 21 out of maximum score of 48. Although IHCPs could identify key tenets of enhancing survival chances of neonates, they scored low on the specifics of cord care, breastfeeding, vitamin K use to prevent neonatal hemorrhage, and identification and care of low-birth-weight babies. The practitioners particularly lacked knowledge about neonatal resuscitation, and only a small proportion reported following up on immunizations. Results of quantile regression analysis showed that more than 5 years of practice experience and treating more than 20 patients per day had a statistically significant positive association with the knowledge score at higher quantiles (q75(th) and q90th) only. IHCPs treating children had significantly better scores across quantiles accept at the highest quantile (90(th)). CONCLUSIONS: The present study highlighted that know-do gap exists in evidence-based practices for all key areas of neonatal care tested among the IHCPs. The study provides the evidence that some IHCPs do possess knowledge in basic evidence-based practices in neonatal care, which could be built upon by future educational interventions. Targeting IHCPs can be an innovative way to reach a large rural population in the study setting and to improve neonatal care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12913-020-05805-2" target="_blank" rel="noreferrer noopener">10.1186/s12913-020-05805-2</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
2021 Special Edition 1 - Low Resource Settings
Adult
Baghel SS
BMC Health Services Research
Clinical Competence
Cross-sectional Studies
Diwan V
Evidence-based Practice
Health Personnel/psychology/statistics & numerical data
Humans
India
Infant Care
Infant Newborn
Informal healthcare providers
Knowledge
Lundborg CS
Middle Aged
Mungai IG
Neonatal Care
Pathak A
Sharma M
Soni S
Tamhankar AJ
Vagela 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
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1155/2020/6432476" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1155/2020/6432476</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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Reaching the Unreached: Providing Quality Care to HIV-Infected Children through Telemedicine-An Innovative Pilot Initiative from Maharashtra, India
Publisher
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International Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Low resource setting; HIV
Creator
An entity primarily responsible for making the resource
Manglani M; Gabhale Y; Lala MM; Balakrishnan S; Bhuyan K; Rewari BB; Setia MS
Description
An account of the resource
BACKGROUND: The National AIDS Control Organization (NACO) of India created the Regional Pediatric Antiretroviral Therapy (ART) Center; this was subsequently upgraded to seven Pediatric Centers of Excellence (PCoEs) to strengthen the quality of treatment and care of children living with HIV/AIDS (CLHAs). In October 2013, the pediatric HIV telemedicine initiative, an e-decentralized (care provided by local healthcare providers and support provided by a central agency through telemedicine facilities) model of expert pediatric HIV care and referral services, was established as a pilot project at the Pediatric Center of Excellence for HIV Care in Maharashtra. We designed the present study to compare management, compliance to ART, and mortality in children in the ART centers linked to the PCoE through telemedicine versus those that are not linked to the PCoE. METHODS: It was a retrospective cross-sectional study of secondary data from CLHAs from October 2013 through August 2015 in the ART centers to document the intermediate outcomes and to determine if the initiative has improved the quality of care for the CLHAs enrolled in the linked ART centers with nonlinked ART centers. The centers in which the telemedicine sessions were conducted regularly were called linked-regular centers and in whom it was conducted irregularly (less than the median of 12 videoconference cases), it was called a linked-irregular center. Data from 2803 children in 31 linked (1365 in irregular and 1438 in regular centers) and 2608 children in 28 nonlinked centers were analyzed. The outcomes in children in the pre-ART group (ART naïve) were (1) alive on pre-ART, (2) lost to follow-up on pre-ART, (3) death during the pre-ART period, (4) eligible but not initiated on ART, and (5) missing baseline and latest CD4 counts. The outcomes of children on ART were (1) alive on ART, (2) lost to follow-up on ART, (3) death on ART, and (4) missing baseline and latest CD4 counts. RESULTS: We found that a higher proportion of children in the linked-regular centers (79% vs. 70%, p < 0.001) and linked-irregular centers (76% vs. 70%, p = 0.04) was alive compared with that in the nonlinked centers in the pre-ART group. In this group, the proportion of children with missing baseline CD4 counts and latest CD4 counts was significantly low in linked (regular centers) centers. In the ART group, we found that a higher proportion of children in the linked-regular centers was alive compared with that in the linked-irregular centers (77% vs. 69%, p < 0.001); the proportion was not significantly different in nonlinked centers (77% vs. 78%, p = 0.56). In this group, the proportion of missing baseline CD4 counts was significantly lower in the linked-regular centers (3% vs 13%, p<0.001) and linked-irregular centers (1% vs. 13%, p < 0.001) compared with that in the nonlinked centers. Furthermore, the latest CD4 counts were missing in a significantly lower proportion of children in the linked-regular centers compared with those in the linked-irregular centers (6% vs. 18%, p < 0.001) and nonlinked centers (6% vs. 18%, p < 0.001). CONCLUSION: Our study shows that the centers linked through telemedicine performed better in terms of patient care and treatment, with a lesser loss to follow-up and lesser deaths in CLHA. Overall, this pilot project of telemedicine for pediatric HIV has been proven to be acceptable, feasible, and effective in improving the quality of care for children living with HIV across the state of Maharashtra.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2020/6432476" target="_blank" rel="noreferrer noopener">10.1155/2020/6432476</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
2021 Special Edition 1 - Low Resource Settings
Balakrishnan S
Bhuyan K
Gabhale Y
Hiv
International Journal of Pediatrics
Lala MM
Low resource setting
Manglani M
Rewari BB
Setia MS
-
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
2021 Special Edition 1 - Low Resource Settings
Text
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2021 Special Edition 1 - Low Resource Settings
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Issues in Adolescent and Young Adult Oncology in a Developing Country Like India
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Indian Journal of Medical and Paediatric Oncology
Date
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2020
Subject
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Low resource setting; oncology
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Gupta S; Jafa E; Bansal A
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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2020
2021 Special Edition 1 - Low Resource Settings
Bansal A
Gupta S
Indian Journal of Medical and Paediatric Oncology
Jafa E
Low resource setting
Oncology
-
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
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2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1186/s12904-020-00674-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-020-00674-2</a>
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Advancing Pediatric Palliative Care in a Low-Middle Income Country: An Implementation Study, a Challenging but Not Impossible Task
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BMC 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; Pediatric; Implementation; Latin America; Terminal care; Palliative medicine; authorship and/or publication of this article.; Program
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Garcia-Quintero X; Parra-Lara LG; Claros-Hulbert A; Cuervo-Suarez MI; Gomez-Garcia W; Desbrandes F; Arias-Casais N
Description
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BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
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<a href="http://doi.org/10.1186/s12904-020-00674-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00674-2</a>
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2020
2021 Special Edition 1 - Low Resource Settings
Arias-Casais N
authorship and/or publication of this article.
BMC Palliative Care
Claros-Hulbert A
Cuervo-Suárez MI
Desbrandes F
García-Quintero X
Gomez-Garcia W
Implementation
Latin America
Palliative Medicine
Parra-Lara LG
Pediatric
Pediatric Palliative Care
Program
Terminal Care
-
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
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Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.4103/nmj.NMJ_162_19" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4103/nmj.NMJ_162_19</a>
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Title
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Care of the Sick Newborn in a Cottage Hospital Level in a Developing Country
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Nigerian Medical Journal
Date
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2020
Subject
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morbidity; newborn care; Cottage hospital
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Ekanem EE; Fajola AO; Ande AB; Ikeagwu GO; Anidima TE; Umejiego CN; Usman R
Description
An account of the resource
INTRODUCTION: Neonatal morbidity and mortality are high in Nigeria. The establishment of more centers that could offer adequate management of high-risk pregnancies and neonates is essential. OBJECTIVES: This study seeks to describe sick newborn care at the cottage hospital level in Southern Nigeria with the aim of drawing lessons that may be useful to similar environments. SUBJECTS AND METHODS: A description of facility upgrading and staff training in perinatal care at a public-private partnership cottage hospital with a robust community health insurance scheme in Nigeria is made. A retrospective descriptive study of the morbidity and outcomes of admitted neonates in the facility between March 2016 and February 2017 was made. RESULTS: Out of 3630 babies born in the facility (302 per month), 189 were admitted, yielding an admission rate of 52.1/1000 live births. The main morbidities were neonatal hypoglycemia (32.4%), preterm low-birth weight (24.9%), neonatal sepsis (22.8%), and neonatal jaundice (12.7%). Sixteen of the 109 neonates died giving a mortality rate of 8.5%. The main causes of deaths were birth asphyxia (7 or 43.8%), meconium aspiration (6 or 37.5%), and congenital malformation (3 or 18.8%). CONCLUSION AND RECOMMENDATIONS: The neonatal admission and mortality rates are quite low in this cottage hospital and similar to the situation even in developed environments. This salutary scenario is probably due to good antenatal and perinatal care, and a robust community health insurance scheme which enhances services uptake and public-private partnership which engenders infrastructure expansion and maintenance. This model is recommended for the hospitals in our region.
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<a href="http://doi.org/10.4103/nmj.NMJ_162_19" target="_blank" rel="noreferrer noopener">10.4103/nmj.NMJ_162_19</a>
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2020
2021 Special Edition 1 - Low Resource Settings
Ande AB
Anidima TE
Cottage hospital
Ekanem EE
Fajola AO
Ikeagwu GO
Morbidity
Newborn Care
Nigerian Medical Journal
Umejiego CN
Usman R
-
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
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Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/tmi.13529</a>
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Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?
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Tropical Medicine and International Health
Date
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2020
Subject
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Child; Adolescent; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Comorbidity; Children; Intensive Care Units; Age Distribution; Adolescents; Hospitalization/statistics & numerical data; Brazil/epidemiology; Mortality; deaths; Covid-19; mortality; Deaths; adolescents; children; covid-19; COVID-19/mortality
Creator
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de Siqueira ALA; Cristina FVS; Lima SPR; Santana SV; Cristina FLD; Eduardo CL; Queiroz GR
Description
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OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance and mortality information systems of Sergipe's Health Secretary and hospital records. RESULTS: 37 deaths of children <19 years old were reported up to 30(th) September 2020, corresponding to 4.87 deaths for 100,000 population <19 years old. Most deaths occurred among infants (44.1/100,000), and this age group had the highest case fatality rate (15.3 %). Most children had comorbidities such as chronic neurological diseases (n=7; 19%) and prematurity (n=4; 11%). Most children who died (n=18; 49%) were not admitted to intensive care units (ICU). CONCLUSION: COVID-19 mortality in children and adolescents in Sergipe was higher than in other Brazilian states and in high-income countries. A large proportion of the deaths occurred among children with co-morbidities and a minority of children were admitted to ICU, reflecting the limited provision of such beds in the State. Newborns and infants are a high-risk group that must have priority in health public policy.
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<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener">10.1111/tmi.13529</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
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adolescents
Age Distribution
Brazil/epidemiology
Child
Child Preschool
Children
Comorbidity
COVID-19
COVID-19/mortality
Cristina FLD
Cristina FVS
de Siqueira ALA
deaths
Eduardo CL
Female
Hospitalization/statistics & numerical data
Humans
Infant
Infant Newborn
Intensive Care Units
Lima SPR
Male
Mortality
Queiroz GR
Santana SV
Tropical Medicine & International Health
-
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Title
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November 2020 List
Text
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Citation List Month
February List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2020.00581" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2020.00581</a>
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Title
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Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It
Publisher
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Frontiers in Pediatrics
Date
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2020
Subject
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decision-making; decision-making; end-of-life care; ethical confrontation; medical futility; moral distress; neonatal; intensive care; periviability; end-of-life care; ethical confrontation; medical futility; moral distress; neonatal intensive care; periviability
Creator
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Mills M; Cortezzo DE
Description
An account of the resource
Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been reported among bedside nurses in relation to the hierarchy of the medical team. However, it is increasingly recognized that moral distress may exist in different forms than initially described and that healthcare professions outside of nursing experience it. Advances in medical technology have allowed the smallest, sickest neonates to survive. The treatment for critically ill infants is no longer simply limited by the capability of medical technology but also by moral and ethical boundaries of what is right for a given child and family. Shared decision-making and the zone of parental discretion can inform and challenge the medical team to balance the complexities of patient autonomy against harm and suffering. Limited ability to prognosticate and uncertainty in outcomes add to the challenges faced with ethical dilemmas. While this does not necessarily equate to moral distress, subjective views of quality of life and personal values in these situations can lead to moral distress if the plans of care and the validity of each path are not fully explored. Differences in opinions and approaches between members of the medical team can strain relationships and affect each individual differently. It is unclear how the various types of moral distress uniquely impact each profession and their role in the distinctively challenging decisions made in the NICU environment. The purpose of this review is to describe moral distress and the situations that give rise to it in the NICU, ways in which various members of the medical team experience it, how it impacts care delivery, and approaches to address it. © Copyright © 2020 Mills and Cortezzo.
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<a href="http://doi.org/10.3389/fped.2020.00581" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00581</a>
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2020
Cortezzo DE
Decision-making
End-of-life Care
ethical confrontation
February List 2023
Frontiers in Pediatrics
Intensive Care
Medical Futility
Mills M
Moral Distress
Neonatal
neonatal intensive care
periviability
-
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjopen-2019-034433" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2019-034433</a>
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I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands
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BMJ Open
Date
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2020
Creator
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Luchtenberg ML; Maeckelberghe ELM; Verhagen AE
Description
An account of the resource
OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the Netherlands. It consisted of research meetings with individual children at home (Phase I) or group meetings at school (Phase II). In Phase I, we identified themes from a video interview during five one-on-one meetings between a child co-researcher and the adult researcher. In Phase II, during two group meetings, we explored the themes in detail using fragments from 16 interviews. PARTICIPANTS: We involved 14 school children (aged 10 to 14 years) as co-researchers to analyse children's interviews about their experience while participating in medical research. Notes were taken, and children provided feedback. A thematic analysis was performed using a framework approach. RESULTS: All co-researchers identified themes. The time needed to complete the task varied, as did the extent to which the meetings needed to be structured to improve concentration. The children rated time investment as adequate and they considered acting as co-researcher interesting and fun, adding that they had learnt new skills and gained new knowledge. The experience also led them to reflect on health matters in their own lives. The adult researchers considered the process relatively time intensive, but the project did result in a more critical assessment of their own work. CONCLUSION: The new, two-phase approach of involving children to help analyse qualitative data is a feasible research method. The novelty lies in involving children to help identify themes from original interview data, thereby limiting preselection of data by adults, before exploring these themes in detail. Videos make it easier for children to understand the data and to empathise with the interviewees, and limits time investment.
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<a href="http://doi.org/10.1136/bmjopen-2019-034433" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034433</a>
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2020
2023 SE1 - Parent Perspectives
Adolescent
Biomedical Research
Bmj Open
Child
children involvement
Female
Humans
Interviews As Topic
Luchtenberg ML
Maeckelberghe ELM
Male
Netherlands
Paediatrics
Patient Participation
Pediatrics/methods
Qualitative Research
Research Subjects
Verhagen AE
-
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/2374373520938909</a>
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Title
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Patient Experience Research in Children and Young People's Mental Health Services in England: A Route to Genuine Service Transformation or Just Pretty Pictures and Tasteful Color Schemes?
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Journal of Patient Experience
Date
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2020
Creator
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Crosier A; Knightsmith P
Description
An account of the resource
The personalization of service provision and responding to patients' expressed needs are key components of government plans to improve children and young people's mental health services in England. This qualitative study explored the use of patient experience research in these services. Despite national level commitments to listening to and acting on the "patient's voice," both service users (young people) and parents of this group reported never having been invited to participate in patient experience research. Most professional respondents reported that such research was frequently tokenistic and conducted solely to meet an administrative requirement. Senior policy makers justified the limited investment in, and use made of patient experience research, by pointing to what they felt were more urgent priorities facing children and young people's mental health services. These included unprecedented levels of demand and critical underfunding of mental health services and related youth- and community-based services. The conceptualization of patient experience research within the National Health Service (NHS) as a service improvement issue was found to have led to its status being diminished to one concerned with relatively cosmetic matters, such as the color scheme or choice of pictures on the walls of clinics. Senior policy makers argued that it was important to rethink the role and value of patient experience research, and to recognize its unique contribution to addressing the existential questions facing services.
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<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener">10.1177/2374373520938909</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
2023 SE1 - Parent Perspectives
children and young people
Crosier A
Journal of Patient Experience
Knightsmith P
Mental Health
patient feedback
patient perspectives/narratives
Patient Safety
Patient Satisfaction
Qualitative Methods
-
Dublin Core
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/hex.12972" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.12972</a>
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Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research
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Health Expectations
Date
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2020
Creator
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Costello W; Dorris E
Description
An account of the resource
CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research. OBJECTIVE: To design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. DESIGN: A research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. SETTING AND PARTICIPANTS: Study co-design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. MAIN VARIABLES STUDIED: Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research. RESULTS: The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue. DISCUSSION: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research. CONCLUSIONS: Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.
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<a href="http://doi.org/10.1111/hex.12972" target="_blank" rel="noreferrer noopener">10.1111/hex.12972</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
2023 SE1 - Parent Perspectives
administrative personnel
Adolescent Arthritis
Child
Communication Barriers
Community Participation
Cooperative Behavior
Costello W
Dorris E
Health Expectations
Interpersonal Relations
juvenile
Methods
Paediatrics
patient engagement
patient involvement
Patient Participation
Pediatrics
Personnel
Research
Siblings
Stakeholder Participation
-
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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/10.1111/jpc.14816" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.14816</a>
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After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child
Publisher
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Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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adjustment; end-of-life decision-making; ethics; parent; support
Creator
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Sullivan JE; Gillam LH; Monagle PT
Description
An account of the resource
AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed.
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<a href="http://doi.org/10.1111/jpc.14816" target="_blank" rel="noreferrer noopener">10.1111/jpc.14816</a>
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2020
2022 Special Edition 2 - Parent Perspectives
Adjustment
end-of-life decision-making
Ethics
Gillam LH
Journal of Paediatrics and Child Health
Monagle PT
Parent
Sullivan JE
Support
-
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1080/15325024.2019.1666482" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/15325024.2019.1666482</a>
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Parental Relationships following the Loss of a Child
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Journal of Loss and Trauma
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2020
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bereavement; grief; Loss of child; parental relationship
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Dyregrov A; Gjestad R; Dyregrov K
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To enhance understanding of parental relationships following the loss of a child, a questionnaire was sent to members of Norwegian bereavement support organizations. The sample consisted of 175 couples. Using the Dyadic Adjustment Scale (DAS), we found that an individual’s ability to talk to a partner about own feelings positively correlated with fewer problems and higher satisfaction and cohesion in the couple. Couples felt closer to one another following the loss and were pleased with their relationship. Early intervention may help couples navigate the changes necessitated in a relationship by the loss of a child and prevent negative dyadic changes.
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<a href="http://doi.org/10.1080/15325024.2019.1666482" target="_blank" rel="noreferrer noopener">10.1080/15325024.2019.1666482</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
Bereavement
Dyregrov A
Dyregrov K
Gjestad R
Grief
Journal of Loss and Trauma
Loss of child
Parental Relationship
-
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000703</a>
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Parents' Experiences About Support Following Stillbirth and Neonatal Death
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Advances in Neonatal Care
Date
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2020
Subject
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neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
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Camacho ÁM; Fernández MIM; Jiménez-López FR; Granero-Molina J; Hernández-Padilla JM; Hernández SE; Fernández-Sola C
Description
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BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
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<a href="http://doi.org/10.1097/ANC.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</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
Advances in Neonatal Care
Camacho ÁM
Fernández MIM
Fernández-Sola C
Granero-Molina J
Hernández SE
Hernández-Padilla JM
Jiménez-López FR
Neonatal Death
Parent Experiences
Parental Grief
professional support
Social Support
Stillbirth
-
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Special Edition #2 2022 List
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28229</a>
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Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
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Pediatric Blood and Cancer
Date
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2020
Subject
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decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Creator
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Mekelenkamp H; Lankester AC; Bierings MB; Smiers FJW; de Vries MC; Kars MC; de Vries MC
Description
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Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
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<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</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
Bierings MB
de Vries MC
Decision-making
end-of-life
Experiences
Hematopoietic stem cell transplantation
Kars MC
Lankester AC
Mekelenkamp H
parental
Pediatric
Pediatric Blood and Cancer
Smiers FJW
-
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Special Edition #2 2022 List
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15429</a>
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Palliative and end of life care for a child: understanding parents' coping strategies
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Acta Paediatrica
Date
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2020
Subject
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child; coping; end of life; parent
Creator
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Darlington AS; Randall D; Leppard L; Koh M
Description
An account of the resource
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
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<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</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
Acta Paediatrica
Child
Coping
Darlington AS
End Of Life
Koh M
Leppard L
Parent
Randall D
-
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Special Edition #2 2022 List
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0418</a>
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"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
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Journal of Palliative Medicine
Date
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2020
Subject
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compassion; home-based palliative care; hospice care; pediatric hospice care
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Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Description
An account of the resource
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
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<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</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
compassion
Friebert S
Frimpong-Manso M
Grossoehme D
home-based palliative care
Hospice Care
Humphrey LM
Jenkins R
Journal of Palliative Medicine
Kitamura E
Malcolm H
Pediatric Hospice Care
Pestian T
Thienprayoon R
-
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.024</a>
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What do parents value regarding pediatric palliative and hospice care in the home setting?
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Journal of Pain and Symptom Management
Date
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2020
Subject
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discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care
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Boyden JY; Ersek M; Deatrick JA; Widger K; LaRagione G; Lord BT; Feudtner C
Description
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CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.024</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
Boyden JY
Deatrick JA
discrete choice experiment
Ersek M
Feudtner C
Home-based Care
Journal of Pain and Symptom Management
LaRagione G
Lord BT
Pediatric Hospice Care
Pediatric Palliative Care
Widger K
-
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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/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">http://doi.org/10.26444/aaem/119085</a>
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Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Publisher
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Annals of Agricultural and Environmental Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; difficult situation; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/psychology; Poland; Preschool; Psychological
Creator
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Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Description
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INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Identifier
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<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</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
Adaptation
Adolescent
Adult
Annals of Agricultural and Environmental Medicine
Attitude To Health
Bartoszuk-Popko M
Brodowicz-Król M
Child
Children
Chronic Disease
difficult situation
Female
Guz E
Humans
Kulbaka E
Lutomski P
Male
Middle Aged
paediatric patient
Parental Attitudes
Parents
Parents/psychology
Poland
Preschool
Psychological