1
40
15
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Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000227">https://www.sciencedirect.com/science/article/pii/S1744165X23000227</a>
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Title
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Palliative care for NICU survivors with chronic critical illness
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
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2023
Subject
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Palliative Care; Critical Illness; Survivors
Creator
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Boss RD
Description
An account of the resource
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable. This means that raising family and NICU team awareness of these issues, and putting plans in place to address them, should occur for every NICU infant with CCI. Pediatric palliative care is one resource that can be engaged within the NICU to support the child and family through NICU discharge and beyond. This review examines what is known about the unique needs of infants who leave the NICU with CCI and the role that NICU-initiated palliative care involvement can play for these patients, families, clinicians, and the health care system.
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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).
Identifier
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<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000227">10.1016/j.siny.2023.101446</a>
2023
Boss RD
Critical Illness
June 2022 List
Palliative Care
Seminars in Fetal and Neonatal Medicine
Survivors
-
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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March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222818819350</a>
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Title
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The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Publisher
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Omega: Journal of Death & Dying
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Creator
An entity primarily responsible for making the resource
Haylett WJ; Scott Tilley D
Description
An account of the resource
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Identifier
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<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</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).
2021
Bereavement
Communication
Conflict (Psychology)
Coping
Emotions
Family Role
Grief
Haylett WJ
Human
March 2021 List
Omega: Journal Of Death & Dying
Parental Role
Parenting
Parents -- Psychosocial Factors
Psychology
Science
Scott Tilley D
Social Work
Survivors
Systematic Review
-
Dublin Core
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.3109/0284186x.2016.1167956" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.3109/0284186x.2016.1167956</a>
Dublin Core
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Title
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Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study
Publisher
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Acta Oncologica
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Survival Rate; Male; Treatment Outcome; Infant Newborn; Bereavement; Follow-Up Studies; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Survivors; Sweden; Sick Leave/statistics & numerical data; Fathers/psychology/statistics & numerical data; Mothers/psychology/statistics & numerical data; Neoplasms/economics/mortality/psychology/therapy
Creator
An entity primarily responsible for making the resource
Wikman A; Hoven E; Cernvall M; Ljungman G; Ljungman L; von Essen L
Description
An account of the resource
BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment (ST)/child's death (T7) compared with one year after end of ST/child's death (T6) and the association between partial post-traumatic stress disorder (PTSD) and work situation and sick leave at T7. Participants and procedure: The sample included 152 parents of survivors (77 mothers, 75 fathers) and 42 bereaved parents (22 mothers, 20 fathers) of children diagnosed with cancer in Sweden. RESULTS: The proportions of parents working or reporting sick leave did not differ among mothers and fathers of survivors (92% vs. 96% working, 20% vs. 18% on sick leave) or among bereaved mothers and fathers (91% vs. 90% working, 14% vs. 20% on sick leave) at T7. There was no change from T6 to T7 in the proportion of fathers working (fathers of survivors 91% vs. 96%, bereaved fathers 95% vs. 90%). Although more mothers of survivors (92% vs. 82%) and bereaved mothers (91% vs. 77%) worked at T7 than at T6, this increase was not significant. Fewer bereaved mothers reported sick leave at T7 than at T6 (14% vs. 59%, p < 0.05). Although more fathers reported sick leave at T7 than at T6 (fathers of survivors 18% vs. 8%, bereaved fathers 20% vs. 15%), this was not significant. Partial PTSD was not associated with parents' work situation or sick leave at T7. CONCLUSION: Results suggest little adverse effect on work situation and sick leave among parents of survivors and bereaved parents five years after end of ST/child's death from cancer. However, the pattern of change observed differed between parents, which could potentially indicate possible delayed consequences for fathers not captured in the present paper.
Identifier
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<a href="http://doi.org/%2010.3109/0284186x.2016.1167956" target="_blank" rel="noreferrer noopener">10.3109/0284186x.2016.1167956</a>
2016
Acta Oncologica
Adolescent
Adult
Bereavement
Cernvall M
Child
Child Preschool
Fathers/psychology/statistics & numerical data
Female
Follow-up Studies
Hoven E
Humans
Infant
Infant Newborn
Ljungman G
Ljungman L
Male
Mothers/psychology/statistics & numerical data
Neoplasms/economics/mortality/psychology/therapy
Oncology 2018 List
Sick Leave/statistics & numerical data
Survival Rate
Survivors
Sweden
Treatment Outcome
von Essen L
Wikman A
-
Dublin Core
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Title
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June 2018 List
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
June 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739852</a>
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Title
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Unexpected survivors: Children with life-limiting conditions of uncertain prognosis
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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children; Health & Mental Health Treatment & Prevention (3300); life-limiting medical conditions; Prognosis; prognostication; survival; Survivors; Uncertainty
Creator
An entity primarily responsible for making the resource
Nageswaran S; Hurst A; Radulovic A
Description
An account of the resource
Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. Study Design: This is a retrospective cohort study conducted in a tertiary-care children’s hospital in North Carolina. 'Unexpected survivors,' defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children’s clinical courses were followed until September 2015 or their death. Results: Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). Conclusions: Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">10.1177/1049909117739852</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).
2018
American Journal of Hospice & Palliative Medicine
Children
Health & Mental Health Treatment & Prevention (3300)
Hurst A
June 2018 List
life-limiting medical conditions
Nageswaran S
Prognosis
prognostication
Radulovic A
Survival
Survivors
Uncertainty
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/cncr.24109" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.24109</a>
Dublin Core
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Title
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Behavioral, social, and educational outcomes after pediatric stem cell transplantation and related factors
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; mothers; Neoplasms; Adult; Parent-Child Relations; Treatment Outcome; Longitudinal Studies; Social Adjustment; Behavior; Mental Health; Depression; Internal-External Control; Survivors; Teaching; Adaptation; Psychological; Cranial Irradiation; Social Behavior; Stem Cell Transplantation
Creator
An entity primarily responsible for making the resource
Barrera M; Atenafu E; Pinto J
Description
An account of the resource
BACKGROUND: The purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24 youths completed standardized questionnaires (Child Behavior Checklist [CBCL] and Youth Self-Report [YSR]) pre-SCT, and 12 and 24 months after SCT; 26 teachers completed Teacher Report Form (TRF) at 24 months. Information regarding clinical (eg, diagnosis, cranial radiation, graft vs host disease [GVHD]), child (eg, age, sex, physical health), and familial (eg, maternal age, education, distress) factors was also obtained. RESULTS: Linear mixed regression models with compound covariance structure followed by adjusted pairwise analyses yielded significant improvements from pre-SCT to 1 and 2 years after SCT in total scores; in externalizing and internalizing scores from pre-SCT to 2 years after SCT; and in total competence from pre-SCT to 1 year after SCT. Child's physical health, maternal age, and depression were found to be significantly associated with the total, internalizing, and externalizing CBCL scores, whereas GVHD, mother's age, and time since diagnosis were associated with CBCL competence scores. Diagnosis, cranial radiation, GVHD, child's physical health, and maternal age and education were associated with YSR total behavioral and competence scores. Finally, total TRF scores were associated with time since diagnosis; TRF educational and adaptability scores were associated with maternal education, age, and distress. CONCLUSIONS: Clinical, personal, and familial factors must be considered to understand the psychosocial outcomes of these survivors up to 2 years after SCT. This study has important implications for psychosocial interventions for this population.
2009-02
Identifier
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<a href="http://doi.org/10.1002/cncr.24109" target="_blank" rel="noreferrer">10.1002/cncr.24109</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).
Type
The nature or genre of the resource
Journal Article
2009
Adaptation
Adolescent
Adult
Atenafu E
Backlog
Barrera M
Behavior
Cancer
Child
Cranial Irradiation
Depression
Female
Humans
Internal-External Control
Journal Article
Longitudinal Studies
Male
Mental Health
Mothers
Neoplasms
Parent-child Relations
Pinto J
Psychological
Social Adjustment
Social Behavior
Stem Cell Transplantation
Survivors
Teaching
Treatment Outcome
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1093/geronb/gbn024" target="_blank" rel="noreferrer">http://doi.org/10.1093/geronb/gbn024</a>
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Title
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Sibling death and death fear in relation to depressive symptomatology in older adults
Publisher
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The Journals Of Gerontology. Series B, Psychological Sciences And Social Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Female; Humans; Male; bereavement; Aged; Attitude to Death; Age Factors; Socioeconomic Factors; Adjustment Disorders; Fear; Sibling Relations; Psychometrics; Personality Inventory; Survivors; Family Characteristics; 80 and over; Psychological; Models; sibling bereavement; Object Attachment
Creator
An entity primarily responsible for making the resource
Cicirelli VG
Description
An account of the resource
Previously overlooked factors in elders' depressive symptomatology were examined, including death fear, sibling death, and sibling closeness. Participants were 150 elders (61 men, 89 women) aged 65-97 years with at least one sibling. Measures were proportion of deceased siblings, sibling closeness, the Death Fear Subscale of the Death Attitude Profile-Revised, and the Center for Epidemiological Studies-Depression scale (20-item adult form). Age and education were exogenous variables in a structural equation model. Death fear, sibling closeness, and proportion of dead siblings were directly related to depression, with path coefficients of .42, -.24, and .13, respectively. Proportion of dead siblings had indirect effects on depression, as did age and education. Depressive symptomatology in old age is influenced by death fear related to sibling death as well as by poor relationships with them; it must be understood within a situational context including death fear and sibling relationships.
2009-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/geronb/gbn024" target="_blank" rel="noreferrer">10.1093/geronb/gbn024</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).
Type
The nature or genre of the resource
Journal Article
2009
80 And Over
Adjustment Disorders
Age Factors
Aged
Attitude To Death
Backlog
Bereavement
Cicirelli VG
Family Characteristics
Fear
Female
Humans
Journal Article
Male
Models
Object Attachment
Personality Inventory
Psychological
Psychometrics
sibling bereavement
Sibling Relations
Socioeconomic Factors
Survivors
The Journals Of Gerontology. Series B, Psychological Sciences And Social Sciences
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jadohealth.2005.03.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jadohealth.2005.03.011</a>
Dublin Core
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Title
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Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood
Publisher
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The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Adult; Peer Group; Netherlands; Health Status; Life Change Events; Survivors; quality of life; adolescent; Adolescent Transitions; Risk-Taking; Chronic disease; Chronic/complications/psychology/rehabilitation; Esophageal Atresia/complications/psychology/rehabilitation; Hirschsprung Disease/complications/psychology/rehabilitation; Kidney Failure; Neoplasms/complications/psychology/rehabilitation
Creator
An entity primarily responsible for making the resource
Stam H; Hartman EE; Deurloo JA; Groothoff J; Grootenhuis MA
Description
An account of the resource
PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease. METHODS: A total of 508 young adults from the general Dutch population and 650 patients, aged 18-30 years, participated: 348 survivors of childhood cancer, 93 patients with anorectal malformations, 72 patients with Hirschsprung's disease, 61 patients with oesophageal atresia, 76 patients with end-stage renal disease. They completed the Course of Life Questionnaire, which retrospectively assesses the achievement of developmental milestones (autonomy, psychosexual and social development), and risk behavior (antisocial behavior, substance use and gambling). RESULTS: The young adults grown up with a chronic or life-threatening disease proved to have achieved significantly fewer milestones, or at older age than their peers, in all course-of-life domains. The course of life of young adults grown up with esophageal atresia was not delayed compared with that of their peers, whereas that of survivors of childhood cancer and patients with end-stage renal disease was delayed most. CONCLUSIONS: Health care providers should help to minimize the harm for children who grow up with a chronic or life-threatening disease by encouraging parents to stimulate social contacts and autonomy. Attention should especially be directed at children and adolescents growing up with childhood cancer or with end-stage renal disease.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jadohealth.2005.03.011" target="_blank" rel="noreferrer">10.1016/j.jadohealth.2005.03.011</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).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Adolescent Transitions
Adult
Backlog
Chronic Disease
Chronic/complications/psychology/rehabilitation
Deurloo JA
Esophageal Atresia/complications/psychology/rehabilitation
Grootenhuis MA
Groothoff J
Hartman EE
Health Status
Hirschsprung Disease/complications/psychology/rehabilitation
Humans
Journal Article
Kidney Failure
Life Change Events
Neoplasms/complications/psychology/rehabilitation
Netherlands
Peer Group
Quality Of Life
Risk-Taking
Stam H
Survivors
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/01.pec.0000245178.13418.4f" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.pec.0000245178.13418.4f</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
A name given to the resource
Transitional medicine: will emergency medicine physicians be ready for the growing population of adults with congenital heart disease?
Publisher
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Pediatric Emergency Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Cross-Sectional Studies; Humans; Adult; Education; Internship and Residency; Educational Measurement; Survivors; Medical; Emergency Service; Adolescent Transitions; Graduate; Heart Defects; Hospital; Congenital/therapy; Emergency Medicine/education
Creator
An entity primarily responsible for making the resource
Cross KP; Santucci KA
Description
An account of the resource
BACKGROUND: Currently, approximately 85% of children with significant congenital heart problems survive to adolescence and adulthood. This survival rate represents a dramatic improvement in the medical and surgical care of congenital heart disease (CHD) during the last 35 years. Nevertheless, these patients remain at increased risk for significant cardiac problems long after primary interventions are completed. They are more likely than the general population to seek urgent medical care, often in an emergency department setting. They represent a new and growing population of emergency department patients with a specialized set of problems not traditionally part of the training for emergency medicine (EM) physicians. OBJECTIVE: We investigated the current scope and status of training for EM physicians in the immediate management of CHD patients as they grow to adolescence and adulthood. METHODS: We conducted 2 cross-sectional surveys to assess the current training environment for 2 specific groups: (1) US general EM (GEM) residency programs, and (2) US and Canadian pediatric EM (PEM) fellowship programs. Surveys were mailed to program directors during the summer of 2005. A total of 198 surveys were sent out: 134 to GEM residency directors and 64 to PEM fellowship directors. RESULTS: The response rate overall was 68%, with a 64% response rate from the GEM residency directors and 77% from the PEM fellowship directors. Across all programs, 43% (56/130 respondents) were "unsure" about the existence or location of an adult CHD (ACHD) clinic in their area. When asked to rate the importance of ACHD as a training topic, 40 (85%) of 47 PEM fellowship directors and 62 (74%) of 84 GEM residency directors ranked it as "low priority" or "unnecessary." However, 70 (55%) of 127 respondents were "unsure," "uncomfortable," or "worried" about the ACHD training their trainees receive (PEM, 59%; GEM, 53%). In addition, most program directors (75%) estimated that their trainees care for 5 or fewer ACHD patients annually. CONCLUSIONS: There seems to be a mismatch between the growing need for ACHD emergency care and the current state of this topic in both GEM residency and PEM fellowship training programs.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pec.0000245178.13418.4f" target="_blank" rel="noreferrer">10.1097/01.pec.0000245178.13418.4f</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent Transitions
Adult
Backlog
Congenital/therapy
Cross KP
Cross-sectional Studies
Education
Educational Measurement
Emergency Medicine/education
Emergency Service
Graduate
Heart Defects
Hospital
Humans
Internship And Residency
Journal Article
Medical
Pediatric Emergency Care
Santucci KA
Survivors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1200/jco.2005.03.9628" target="_blank" rel="noreferrer">http://doi.org/10.1200/jco.2005.03.9628</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
A name given to the resource
Health-related quality of life among child and adolescent survivors of childhood cancer.
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Canada; Health Status; Longitudinal Studies; Survivors; Case-Control Studies; quality of life; adolescent; Neoplasms/psychology/therapy; Leukemia/psychology; Central Nervous System Neoplasms/psychology; Cranial Irradiation/adverse effects; Lymphoma/psychology
Creator
An entity primarily responsible for making the resource
Speechley KN; Barrera M; Shaw AK; Morrison HI; Maunsell E
Description
An account of the resource
PURPOSE: The main objective was to compare parent-reported health-related quality of life (HRQL) of child and adolescent survivors of childhood cancer to that of controls who had no history of cancer. METHODS: We assessed HRQL of 800 child and adolescent survivors younger than 16 years and 923 randomly selected, age- and sex-matched controls from the general population in a national multicenter retrospective cohort study using the Child Health Questionnaire parent report. Participation was 69% among survivors and 57% among controls. RESULTS: Survivors had means that were consistently lower than controls on the HRQL physical summary (PH; 49.9 v 55.3; P <.005), psychosocial summary (PS; 49.4 v 52.6; P < .005), and all but one of the eight subscale scores. Clinically important survivor-control differences in means on PH were found for survivors of CNS tumors, bone tumors, lymphoma, leukemia, soft tissue sarcoma and Wilms' tumor (differences: -8.7, -7.0, -6.3, -5.4, -4.4, -3.8/100, respectively); on PS, survivors of CNS tumors were most compromised (-6.1/100). Survivor-control differences in both PH and PS were also large for survivors treated with radiation only (-5.8 and -11.9/100, respectively), or radiation combined with surgery (-6.6 and -5.9/100, respectively), or radiation combined with both surgery and chemotherapy (-7.8 and -5.1/100, respectively). Cranial radiation was associated with the most compromised HRQL. CONCLUSION: According to parents, HRQL for survivors was somewhat poorer, overall, than for controls. Survivors of CNS tumors, lymphoma, and leukemia and those patients treated with cranial radiation were reported to have poorest HRQL. These findings support development of guidelines for levels of follow-up care for particular groups of survivors.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/jco.2005.03.9628" target="_blank" rel="noreferrer">10.1200/jco.2005.03.9628</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).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Backlog
Barrera M
Canada
Case-Control Studies
Central Nervous System Neoplasms/psychology
Child
Cranial Irradiation/adverse effects
Female
Health Status
Humans
Journal Article
Journal Of Clinical Oncology
Leukemia/psychology
Longitudinal Studies
Lymphoma/psychology
Male
Maunsell E
Morrison HI
Neoplasms/psychology/therapy
Quality Of Life
Shaw AK
Speechley KN
Survivors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2190/tfha-d5k5-kqkk-8de4" target="_blank" rel="noreferrer">http://doi.org/10.2190/tfha-d5k5-kqkk-8de4</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
A name given to the resource
The Holocaust as a context for telling life stories
Publisher
An entity responsible for making the resource available
International Journal Of Aging & Human Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Aged; Middle Aged; Survivors; Aging; Adolescent Transitions; 20th Century; History; Holocaust; Narration/history
Creator
An entity primarily responsible for making the resource
de Vries B; Suedfeld P; Krell R; Blando JA; Southard P
Description
An account of the resource
Using a narrative approach, this study explores the role of the Holocaust in the life stories of Survivors, contrasted with two comparison groups (one Jewish and one non-Jewish) whose direct experiences did not include surviving the Holocaust. Using the technique of the life line and measures such as number and type of life events identified, as well as the events marking the beginning and ending of the life story, several differences were found between the three groups. Survivors identified an average of 10 life events, fewer than the non-Jewish comparison group (18) but more than the Jewish comparison group (7). Most of these events were positive, although less so for the Jewish comparison group, with very few future events identified by any of the groups. The War marked the beginning of the life story for most of the survivors and their stories ended at an earlier age than did the stories of the comparison groups. Further, WWII events predominated in the stories of the survivors, as did family births and relationship events (comparably seen in the stories of the Jewish comparisons). In contrast, the comparison groups, and particularly the non-Jewish group, identified greater numbers of career, education, illness, and family death events. It is proposed that the pronounced effect of the Holocaust in the life stories of survivors (and to a lesser, though still evident, degree of the Jewish comparisons) serves as an anchoring and contextual influence on the nature and quality of life stories told. That is, the Holocaust sets the standard for what events merit mention and further determines the nature of the events reported and their distribution.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2190/tfha-d5k5-kqkk-8de4" target="_blank" rel="noreferrer">10.2190/tfha-d5k5-kqkk-8de4</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
20th Century
Adolescent Transitions
Aged
Aging
Backlog
Blando JA
de Vries B
Female
History
Holocaust
Humans
International Journal Of Aging & Human Development
Journal Article
Krell R
Male
Middle Aged
Narration/history
Southard P
Suedfeld P
Survivors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16421901" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16421901</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
A name given to the resource
Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Questionnaires; Italy; Survivors; adolescent; Non-U.S. Gov't; Research Support; PedPal Lit; quality of life; Health Status; Brain Neoplasms/psychology/therapy
Creator
An entity primarily responsible for making the resource
Cardarelli C; Cereda C; Masiero L; Viscardi E; Faggin R; Laverda A; Bisogno G; Perilongo G
Description
An account of the resource
BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the effectiveness of this measured in terms of their health status (HS) and health-related quality of life (HRQL). It specifically, it aimed to compare the HS and the HRQL, as expressed by the HUI2 global utility score, in cohorts of patients who had brain tumors, extra-cerebral solid tumors, or leukemia/lymphoma. PROCEDURE: Fifty survivors of brain tumors, between 8 and 30 years at the time of the assessment ("self") and/or their parents ("proxy"), attending the Pediatric Oncology Out Patient clinic of Padua, Italy, completed the HUI2 questionnaire. Eighty-nine children with acute leukemia/lymphoma and 74 with extra-cerebral solid tumors and/or their parents were also assessed. RESULTS: The mean "self" and "proxy" HUI2 global utility scores in the brain tumor patients were 0.87 and 0.84, respectively, while in the cohorts of children with other solid tumors and leukemia/lymphoma, there were 0.94, 0.91, 0.96, and 0.92, respectively. The differences between the HUI2 global utility scores in the "self" and "proxy" assessment within each cohort of children were not statistically significant. In decreasing order of frequency, the attributes affected most commonly were: "emotion," "pain," "sensation," and "cognition" both by "self" and "proxy" assessment. CONCLUSIONS: In this Italian population of childhood cancer survivors the HUI2 questionnaire proved to be a user-friendly tool, which provided information regarding HS and HRQL. A larger cohort of cancer children is needed to confirm the efficacy of the HUI2 questionnaire in distinguishing groups of children on this basis by disease category.
2006
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).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Adult
Backlog
Bisogno G
Brain Neoplasms/psychology/therapy
Cardarelli C
Cereda C
Child
Faggin R
Female
Health Status
Humans
Italy
Journal Article
Laverda A
Male
Masiero L
Non-U.S. Gov't
Pediatric Blood & Cancer
PedPal Lit
Perilongo G
Quality Of Life
Questionnaires
Research Support
Survivors
Viscardi E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16538790" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16538790</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
A name given to the resource
Surviving cancer in childhood can mean lifelong health issues
Publisher
An entity responsible for making the resource available
Lancet Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Adult; Follow-Up Studies; Health Status; adolescent; PedPal Lit; Pain/etiology; Graft vs Host Disease; Survivors; Cataract/etiology; Hearing Loss/etiology; Hematopoietic Stem Cell Transplantation/adverse effects; Vision Disorders/etiology
Creator
An entity primarily responsible for making the resource
Senior K
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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2006
2006
Adolescent
Adult
Backlog
Cataract/etiology
Child
Follow-up Studies
Graft vs Host Disease
Health Status
Hearing Loss/etiology
Hematopoietic Stem Cell Transplantation/adverse effects
Humans
Journal Article
Lancet Oncology
Pain/etiology
PedPal Lit
Senior K
Survivors
Vision Disorders/etiology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.healthpol.2003.12.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.healthpol.2003.12.008</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
A name given to the resource
Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts
Publisher
An entity responsible for making the resource available
Health Policy (amsterdam, Netherlands)
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; United States; Adult; Health Policy; Health Services Research; Quality of Health Care; Delphi Technique; Survivors; Non-U.S. Gov't; Research Support; Neoplasms
Creator
An entity primarily responsible for making the resource
Mertens AC; Cotter KL; Foster BM; Zebrack BJ; Hudson MM; Eshelman D; Loftis L; Sozio M; Oeffinger KC
Description
An account of the resource
OBJECTIVES: To identify barriers to, models of care for, and initiatives to improve health care of adult survivors of childhood cancer. METHODS: Seventeen health care policy experts were asked to respond to the three objectives through a three-iterative Delphi process. RESULTS: Key barriers identified were that primary care physicians are unfamiliar with the health problems of survivors and survivors are often unaware of their risks. The recommended model of care would incorporate the chronic disease management model. Highest priority initiatives recommended were targeted education of primary care physicians and survivors, development and evaluation of standards of survivorship care, and a national web-based information center. CONCLUSIONS: The insights and recommendations of the panel provide a foundation intended to improve health care of cancer survivors.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.healthpol.2003.12.008" target="_blank" rel="noreferrer">10.1016/j.healthpol.2003.12.008</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).
Type
The nature or genre of the resource
Journal Article
2004
Adult
Backlog
Cotter KL
Delphi Technique
Eshelman D
Foster BM
Health Policy
Health Policy (amsterdam, Netherlands)
Health Services Research
Hudson MM
Humans
Journal Article
Loftis L
Mertens AC
Neoplasms
Non-U.S. Gov't
Oeffinger KC
Quality Of Health Care
Research Support
Sozio M
Survivors
United States
Zebrack BJ
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/1054-139X(95)00077-6</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
A name given to the resource
Between two worlds: bridging the cultures of child health and adult medicine
Publisher
An entity responsible for making the resource available
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Child; Humans; United States; Physician-Patient Relations; Adult; Disabled Persons; Patient Participation; Continuity of Patient Care; Survivors; patient care team; decision making; Adolescent Transitions; Chronic disease; Delivery of Health Care/organization & administration; Internal Medicine/organization & administration; Pediatrics/organization & administration
Creator
An entity primarily responsible for making the resource
Rosen D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">10.1016/1054-139X(95)00077-6</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1995
1995
Adolescent Transitions
Adult
Backlog
Child
Chronic Disease
Continuity Of Patient Care
Decision Making
Delivery of Health Care/organization & administration
Disabled Persons
Humans
Internal Medicine/organization & administration
Journal Article
Patient Care Team
Patient Participation
Pediatrics/organization & Administration
Physician-patient Relations
Rosen D
Survivors
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">http://doi.org/10.2190/om.63.4.c</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
A name given to the resource
Indicators of family resilience after the death of a child
Publisher
An entity responsible for making the resource available
Omega
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Parents; Anecdotes as Topic; Middle Aged; Self Concept; Attitude to Death; social support; Social Adjustment; Survivors; Self-Help Groups; Belgium; Preschool; Adaptation; Psychological; Newborn; Grief; sibling bereavement; Resilience; Object Attachment
Creator
An entity primarily responsible for making the resource
Greeff AP; Vansteenwegen A; Herbiest T
Description
An account of the resource
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in 89 Belgian families. The results indicate that family strengths in general, and commitment to the family in particular, helped the families' adaptation after the loss. In addition, the adaptation process after the loss was aided if the family members viewed the crisis as a challenge. Both the siblings and the parents indicated that the extent to which a family experienced support from the community was directly related to family adaptation after the loss. Redefining the situation and utilizing social support from friends and family were underlined as effective family coping strategies. The findings could be used in interventions to promote family resilience, thereby affirming the reparative potential of families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">10.2190/om.63.4.c</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).
Type
The nature or genre of the resource
Journal Article
2011
Adaptation
Adult
Anecdotes as Topic
Attitude To Death
Backlog
Belgium
Child
Female
Greeff AP
Grief
Herbiest T
Humans
Infant
Journal Article
Male
Middle Aged
Newborn
Object Attachment
Omega
Parent-child Relations
Parents
Preschool
Psychological
Resilience
Self Concept
Self-Help Groups
sibling bereavement
Social Adjustment
Social Support
Survivors
Vansteenwegen A