1
40
117
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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/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2007-1005</a>
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Title
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Fathers' experiences in the neonatal intensive care unit: a search for control.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
Creator
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Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Description
An account of the resource
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
Identifier
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<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</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/px [Psychology]
*Intensive Care Units, Neonatal
*Internal-External Control
2008
2023 SE4 - Parent Perspectives
Albersheim, Susan
Arockiasamy, Vincent
Communication
Critical Illness
Father-child Relations
Holsti, Liisa
Humans
Infant, Newborn
Infant, Premature
Intensive Care Units, Neonatal/og [Organization & Administration]
Interviews As Topic
Male
Pediatrics
Professional-family Relations
Qualitative Research
Religion
Stress, Psychological
-
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
2023 Special Edition 4 - Parent Perspectives 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
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>
Dublin Core
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Title
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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
An account of the resource
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.
Identifier
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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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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).
*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
-
Dublin Core
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Title
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April 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
April List 2023
URL Address
<a href="https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338" target="_blank" rel="noreferrer noopener">https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338 http://doi.org/</a>
Dublin Core
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Title
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Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Publisher
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International Journal of Caring Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Creator
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Anastasopoulou E; Dousis E
Description
An account of the resource
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Anastasopoulou E
April List 2023
Attitude Of Health Personnel
Collaboration
Communication
Communities
Dousis E
Education
Evaluation
Health Services Accessibility
Hospitals
Human
International Journal of Caring Sciences
Multidisciplinary Care Team
Multimethod Studies
Palliative Care
Pediatric Care
Professional-family Relations
Professional-patient Relations
PubMed
Reward
Systematic Review
Terminal Care
-
Dublin Core
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Title
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Special Edition #2 2022 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
Special Edition #2
URL Address
<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119895496</a>
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Title
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Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
Publisher
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American Journal of Hospice 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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Adult; Bereavement; cancer; child; communication; end of life; Focus Groups; Hospice Care; Humans; palliative care; Parents; Professional-Family Relations; Quality of Life; Time Factors
Creator
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Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R
Description
An account of the resource
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Identifier
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<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">10.1177/1049909119895496</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
Adult
American Journal Of Hospice And Palliative Care
Bereavement
Cancer
Child
Communication
Cousino MK
End Of Life
Focus Groups
Hospice Care
Humans
Hutchinson R
Palliative Care
Parents
Paul TK
Pituch K
Professional-family Relations
Quality Of Life
Sedig LK
Spruit JL
Time Factors
-
Dublin Core
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Special Edition #2 2022 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
Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0131</a>
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Title
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Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Creator
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Weaver MS; Hinds PS; Kellas JK; Hecht ML
Description
An account of the resource
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</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
2022 Special Edition 2 - Parent Perspectives
Adolescence
Child
Communication
compassion
Conceptual Framework
Coping
Family Centered Care
Hecht ML
Hinds PS
Journal of Palliative Medicine
Kellas JK
Male
Palliative Care
Parental Attitudes
Parenting
Parents
Pediatric Care
Personality
Professional-family Relations
Social Identity
Stress
Support
Theoretical models
Weaver MS
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120922973</a>
Dublin Core
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Title
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Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
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
2020
Subject
The topic of the resource
Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Funding Source; Health Resource Utilization; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Creator
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Sedig LK; Spruit JL; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R
Description
An account of the resource
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Identifier
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<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</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
2022 Special Edition 1 - Parent Perspectives
Academic Medical Centers
American Journal of Hospice & Palliative Medicine
Anticipatory Guidance
Bereavement
Chi Square Test
Child
Childhood Neoplasms
Communication
Cousino MK
Data Analysis Software
Decision Making
Descriptive Statistics
Family
Funding Source
Health Resource Utilization
Hutchinson R
McCaffery H
Midwestern United States
Parental Attitudes – Evaluation
Patient Preference
Paul TK
Pituch K
Professional-family Relations
Professional-patient Relations
psychosocial
Quality Of Life
Questionnaires
Record Review
Retrospective Design
Sedig LK
Shared
Spruit JL
Support
Terminal Care – In Infancy and Childhood
-
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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August 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
August 2021 List
URL Address
<a href="http://doi.org/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">http://doi.org/10.4037/ajcc2020478</a>
Dublin Core
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Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
Publisher
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American Journal of Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Adolescent; Child; Preschool Child; Parents/psychology; Emotions; Communication; Family/psychology; Attitude of Health Personnel; Professional-Family Relations; Socioeconomic Factors; Decision Making; Pilot Projects; Patient Discharge; Intensive Care Units Pediatric/organization & administration/standards
Creator
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Michelson KN; Charleston E; Aniciete DY; Sorce LR; Fragen P; Persell SD; Ciolino JD; Clayman ML; Rychlik K; Jones V A; Spadino P; Malakooti M; Brown M; White D
Description
An account of the resource
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention. METHODS: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups. RESULTS: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive. CONCLUSIONS: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents.
Identifier
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<a href="http://doi.org/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020478</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
American Journal of Critical Care
Aniciete DY
Attitude Of Health Personnel
August 2021 List
Brown M
Charleston E
Child
Ciolino JD
Clayman ML
Communication
Decision Making
Emotions
Family/psychology
Fragen P
Infant
Intensive Care Units Pediatric/organization & administration/standards
Jones V A
Malakooti M
Michelson KN
Parents/psychology
Patient Discharge
Persell SD
Pilot Projects
Preschool Child
Professional-family Relations
Rychlik K
Socioeconomic Factors
Sorce LR
Spadino P
White D
-
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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April 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
April 2021 List
URL Address
<a href="http://doi.org/10.1016/j.ijnss.2020.11.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijnss.2020.11.005</a>
Dublin Core
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Title
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Focuses and trends of the studies on pediatric palliative care:A bibliometric analysis from 2004 to 2018
Publisher
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International Journal of Nursing Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Pediatrics; Communication; Parents; Neoplasms; Bibliometrics; Hospice and palliative care nursing; Decision making; Professional-family relations
Creator
An entity primarily responsible for making the resource
Zhang M; Li X
Description
An account of the resource
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, including co-word analysis, biclustering analysis, and strategic diagram analysis. The included papers were divided into three groups based on the publication time, including 2004-2008, 2009-2013, and 2014-2018. Result(s): A total of 1132 papers were published between 2004 and 2018, and there were 293 papers published between 2004 and 2008, 396 between 2009 and 2013, and 443 between 2014 and 2018. There were 42 high-frequency MeSH terms/MeSH subheadings in papers published between 2004 and 2018, including 12 between 2004 and 2008, 13 between 2009 and 2013, and 17 between 2014 and 2018. Conclusion(s): Studies on PPC were making progress, with the increasing number, expanding scope, and uneven global distribution. Integration palliative care into pediatrics, cancer treatments in pediatric oncology, education methods on PPC, and establishment of professional teams were the major themes during 2004-2008, then the themes changed into establishing interventions to enhance the quality of life of the patients and parents, building professional-family relationship, and investigating attitude of health personnel in PPC during 2009-2013 and subsequently turned into communication skills, end-of-life decision making, and guidelines making on PPC during 2014-2018. Underdeveloped and protential themes including effective approaches to deal with the ethical dilemmas, training programs on communication skills, family support and guideline making are worth studying in the future. Copyright © 2020 The authors
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijnss.2020.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.ijnss.2020.11.005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Bibliometrics
Communication
Decision Making
Hospice And Palliative Care Nursing
International Journal of Nursing Sciences
Li X
Neoplasms
Parents
Pediatrics
Professional-family Relations
Zhang M
-
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April 2021 List
Text
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April 2021 List
URL Address
<a href="http://doi.org/10.1177/0030222819825916" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222819825916</a>
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Title
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Having Therapeutic Conversations With Fathers Grieving the Death of a Child
Publisher
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Omega: Journal of Death & Dying
Date
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2021
Subject
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Child; Bereavement; Professional-Family Relations; Conversation; Father-Child Relations; Grief; Death -- In Infancy and Childhood; Fathers -- Psychosocial Factors; Support Psychosocial -- Methods
Creator
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Martinez AM; Castiglione S; Dupuis F; Legault A; Proulx MC; Carnevale F
Description
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A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to support grieving fathers. In our previous study, fathers identified core beliefs that influenced their experience of grief and coping. In this article, the Illness Beliefs Model was integrated with the findings to provide a framework for interventions to create open conversations, ease fathers' suffering, and thereby help their spouse and family suffering as well. This article will guide HCPs to engage in therapeutic conversations to support bereaved fathers.
Identifier
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<a href="http://doi.org/10.1177/0030222819825916" target="_blank" rel="noreferrer noopener">10.1177/0030222819825916</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Bereavement
Carnevale F
Castiglione S
Child
Conversation
Death -- In Infancy and Childhood
Dupuis F
Father-child Relations
Fathers -- Psychosocial Factors
Grief
Legault A
Martinez AM
Omega: Journal Of Death & Dying
Professional-family Relations
Proulx MC
Support Psychosocial -- Methods
-
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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216319888988" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319888988</a>
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Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
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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child; Humans; Pediatrics; Communication; Family/psychology; Professional-Family Relations; paediatrics; Palliative care; Advance Care Planning; Delphi technique; Stakeholder Participation; prompt list; Reminder Systems/instrumentation
Creator
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Ekberg S; Herbert A; Johns K; Tarrant G; Sansone H; Yates P; Danby S; Bradford NK
Description
An account of the resource
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Identifier
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<a href="http://doi.org/10.1177/0269216319888988" target="_blank" rel="noreferrer noopener">10.1177/0269216319888988</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
Advance Care Planning
April 2021 List
Bradford NK
Child
Communication
Danby S
Delphi Technique
Ekberg S
Family/psychology
Herbert A
Humans
Johns K
Paediatrics
Palliative Care
Palliative Medicine
Pediatrics
Professional-family Relations
prompt list
Reminder Systems/instrumentation
Sansone H
Stakeholder Participation
Tarrant G
Yates P
-
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120922973</a>
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Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
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
2020
Subject
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Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Creator
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Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R
Description
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Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Identifier
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<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</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
Academic Medical Centers
American Journal of Hospice & Palliative Medicine
Anticipatory Guidance
Bereavement
Chi Square Test
Child
Childhood Neoplasms
Communication
Cousino M K
Data Analysis Software
Decision Making
Descriptive Statistics
Family
Female
Funding Source
Health Resource Utilization
Human
Hutchinson R
Male
McCaffery H
Midwestern United States
November 2020 List
Parental Attitudes – Evaluation
Patient Preference
Paul T K
Pituch K
Professional-family Relations
Professional-patient Relations
psychosocial
Quality Of Life
Questionnaires
Record Review
Retrospective Design
Sedig L K
Shared
Spruit J L
Support
Terminal Care – In Infancy and Childhood
-
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Title
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August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2019.25.11.542" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2019.25.11.542</a>
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Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review
Publisher
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International journal of palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Humans; Professional-Family Relations; Parents; Trust; Object Attachment; Nurse-Patient Relations; Hospice and Palliative Care Nursing; nurses; Professionalism
Creator
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Brimble M J; Anstey S; Davies J
Description
An account of the resource
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty., AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings., METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items., FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism., CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2019.25.11.542" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2019.25.11.542</a>
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2019
Anstey S
August 2020 List
Brimble M J
Davies J
Hospice And Palliative Care Nursing
Humans
International Journal of Palliative Nursing
Nurse-patient Relations
Nurses
Object Attachment
Parents
Professional-family Relations
professionalism
Trust
-
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Title
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June 2020 List
Text
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June 2020 List
URL Address
<a href="http://doi.org/10.1016/j.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.aucc.2017.09.004</a>
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Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Publisher
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Australian Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
Creator
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Butler A E; Copnell B; Hall H
Description
An account of the resource
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
Identifier
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<a href="http://doi.org/10.1016/j.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2017.09.004</a>
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2019
Adult
Australian Critical Care
Bereavement
Butler A E
Child
child and family wishes
Copnell B
Critical Illness -- Singapore
Death
Female
Grounded Theory
Hall H
Health Personnel Attitude
Hospital Mortality
Hospitalized
Humans
Intensive care unit-paediatric
Intensive Care Units Pediatric
Interviews As Topic
June 2020 List
Male
Nurse
Parents
Parents/*psychology
Pediatric
Professional-family Relations
Victoria
-
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/s1980-220x2018049603521</a>
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Title
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From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional
Publisher
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Revista da Escola de Enfermagem da USP
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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bereavement; child; death; family nursing; hospitalization; hospitalized; neoplasm; Professional-Family Relations
Creator
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Santos M R D; Wiegand D L; Sa N N; Misko M D; Szylit R
Description
An account of the resource
OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. RESULTS: The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. CONCLUSION: The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.
Identifier
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<a href="http://doi.org/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">10.1590/s1980-220x2018049603521</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bereavement
Child
Death
Family Nursing
Hospitalization
Hospitalized
Misko M D
Neoplasm
Oncology 2019 List
Professional-family Relations
Revista da Escola de Enfermagem da USP
Sa N N
Santos M R D
Szylit R
Wiegand D L
-
Dublin Core
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Title
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November 2019 List
Text
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Citation List Month
November 2019 List
URL Address
<a target="_blank" class="vk-MessageLink sc-hxTMRp fGfItZ" href="http://ow.ly/t9Os50wM6GL" rel="noreferrer noopener">http://ow.ly/t9Os50wM6GL</a> <span></span>
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Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Publisher
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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
2018
Subject
The topic of the resource
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
Creator
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Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Description
An account of the resource
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
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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
Arzuaga BH
Attitude Of Health Personnel
Attitudes
Brodsky DD
Cummings CL
Female
Health Knowledge
Hospital/psychology
Humans
Intensive Care Units
Male
Mao W
Medical Staff
Miedema D
Neonatal/statistics & Numerical Data
November 2019 List
Nursing Staff
Pediatric Critical Care Medicine
Practice
Professional-family Relations
Resuscitation Orders/psychology
Retrospective Studies
Surveys And Questionnaires
United States
Withholding Treatment/statistics & Numerical Data
Wraight CL
-
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Title
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April 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1111/jspn.12085" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/jspn.12085</a>
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Who are the children using hospice care?
Publisher
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Journal for Specialists in Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Palliative Care/sn [Statistics & Numerical Data]; Male; Infant Newborn; Young Adult; Child; Humans; Professional-Family Relations; Palliative Care/mt [Methods]; Adolescent; Socioeconomic Factors; Female; Child Preschool; Infant; California; Nurse-Patient Relations; Hospice Care/sn [Statistics & Numerical Data]; Neuromuscular Diseases/nu [Nursing]; Pediatric Nursing/mt [Methods]; Pediatric Nursing/sn [Statistics & Numerical Data]; Health Services Needs and Demand/og [Organization & Administration]; Health Services Needs and Demand/sn [Statistics & Numerical Data]; Hospice Care/mt [Methods]
Creator
An entity primarily responsible for making the resource
Lindley LC; Shaw SL
Description
An account of the resource
PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics of 76 children in hospice. RESULTS: The predisposing, enabling, and need characteristics of children were identified. Children who used hospice were a diverse group with community resources that enabled them to access care while presenting with serious health needs. Children enrolled in hospice were more likely older (15-20 years of age), resided nearer a pediatric hospice, and had a serious health condition such as neuromuscular disease with multiple comorbidities. PRACTICE IMPLICATIONS: With this knowledge, pediatric nurses can improve their clinical practice by targeting conversations with families and children most in need of hospice care.
Identifier
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<a href="http://doi.org/10.1111/jspn.12085" target="_blank" rel="noreferrer noopener">10.1111/jspn.12085</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).
2014
Adolescent
April 2019 List
California
Child
Child Preschool
Female
Health Services Needs and Demand/og [Organization & Administration]
Health Services Needs and Demand/sn [Statistics & Numerical Data]
Hospice Care/mt [Methods]
Hospice Care/sn [statistics & Numerical Data]
Humans
Infant
Infant Newborn
Journal for Specialists in Pediatric Nursing
Lindley LC
Male
Neuromuscular Diseases/nu [Nursing]
Nurse-patient Relations
Palliative Care/mt [methods]
Palliative Care/sn [Statistics & Numerical Data]
Pediatric Nursing/mt [methods]
Pediatric Nursing/sn [Statistics & Numerical Data]
Professional-family Relations
Shaw SL
Socioeconomic Factors
Young Adult
-
Dublin Core
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Title
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August 2018 List
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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
August 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2017.02.031</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
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
Creator
An entity primarily responsible for making the resource
Erikson A; Davies B
Description
An account of the resource
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
August 2018 List
Child
Critical Care Nursing/mt [Methods]
Davies B
Erikson A
Female
Hospital/og [Organization & Administration]
Hospital/px [Psychology]
Humans
Journal of Pediatric Nursing
Male
Nurse-patient Relations
Nurse's Role/px [Psychology]
Nursing
Nursing Methodology Research
Nursing Staff
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Philosophy
Professional-family Relations
Qualitative Research
-
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/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.4.165</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
Sharing the care: the key-working experiences of professionals and the parents of life-limited children
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Terminal Care; Great Britain; Adult; Parents; Questionnaires; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Health Personnel; caregivers; Child Health Services; Focus Groups; Patient Care Planning; Stress; Psychological
Creator
An entity primarily responsible for making the resource
Rodriguez A; King N
Description
An account of the resource
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. FINDINGS: Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. CONCLUSIONS: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family 'team' arrangements.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.165</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
2014
Adolescent
Adult
Backlog
Caregivers
Child
Child Health Services
Female
Focus Groups
Great Britain
Health Personnel
Health Services Needs And Demand
Humans
International Journal of Palliative Nursing
Journal Article
King N
Male
Middle Aged
Parents
Patient Care Planning
Professional-family Relations
Psychological
Questionnaires
Rodriguez A
Stress
Terminal Care
-
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/10.1542/peds.2013-3608C" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3608C</a>
Dublin Core
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Title
A name given to the resource
The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; bereavement; hospice care; Pediatrics; Family; Practice Guidelines as Topic; Professional-Family Relations; Patient-Centered Care; Patient Participation; Ethics; Medical; Palliative Care
Creator
An entity primarily responsible for making the resource
Jones BL; Contro N; Koch KD
Description
An account of the resource
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3608C" target="_blank" rel="noreferrer">10.1542/peds.2013-3608C</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Backlog
Bereavement
Child
Contro N
Ethics
Family
Female
Hospice Care
Humans
Jones BL
Journal Article
Koch KD
Male
Medical
Palliative Care
Patient Participation
Patient-centered Care
Pediatrics
Practice Guidelines As Topic
Professional-family Relations
-
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/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3608D</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
Relational autonomy: moving beyond the limits of isolated individualism
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Pediatrics; Parents; Withholding Treatment; Professional-Family Relations; Communication; Child Psychology; Palliative Care; Psychological; Models
Creator
An entity primarily responsible for making the resource
Walter JK; Ross LF
Description
An account of the resource
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical practice. Reliance on an individualistic conception such as the "in-control agent" model prioritizes self-sufficiency in decision-making and highlights a decision-maker's capacity to have reason transcend one's emotional experience. An alternative model of autonomy, relational autonomy, highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision-makers. These 2 conceptions of autonomy lead to different interpretations of several aspects of ethical decision-making. The in-control agent model believes patients or surrogates should avoid both the influence of others and emotional persuasion in decision-making. As a result, providers have a limited role to play and are expected to provide medical expertise but not interfere with the individual's decision-making process. In contrast, a relational autonomy approach acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients' and surrogates' emotional experiences and offer clear guidance when patients are confronting serious illness. In the pediatric setting, in which decision-making is complicated by having a surrogate decision-maker in addition to a patient, these conceptions of autonomy also may influence expectations about the role that adolescents can play in decision-making.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">10.1542/peds.2013-3608D</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adolescent Psychology
Backlog
Child
Child Psychology
Communication
Female
Humans
Journal Article
Male
Models
Palliative Care
Parents
Pediatrics
Personal Autonomy
Physician-patient Relations
Professional-family Relations
Psychological
Ross LF
Walter JK
Withholding Treatment
-
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/10.1542/peds.2013-3608E" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3608E</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
Communicating about prognosis: ethical responsibilities of pediatricians and parents
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Terminal Care; Physician-Patient Relations; Pediatrics; Adult; Parents; Prognosis; Professional-Family Relations; Communication
Creator
An entity primarily responsible for making the resource
Mack JW; Joffe S
Description
An account of the resource
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3608E" target="_blank" rel="noreferrer">10.1542/peds.2013-3608E</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
2014
Adolescent
Adult
Backlog
Child
Communication
Female
Humans
Joffe S
Journal Article
Mack JW
Male
Parents
Pediatrics
Physician-patient Relations
Professional-family Relations
Prognosis
Terminal Care
-
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/10.3322/caac.21215" target="_blank" rel="noreferrer">http://doi.org/10.3322/caac.21215</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
Because statistics don't tell the whole story: a call for comprehensive care for children with cancer
Publisher
An entity responsible for making the resource available
Ca: A Cancer Journal For Clinicians
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Delivery of Health Care; Humans; Palliative Care; Neoplasms; decision making; Pediatrics; Professional-Family Relations; social support; Palliative Care; quality of life; Adaptation; Psychological; Statistical; Grief; Data Interpretation; Integrated
Creator
An entity primarily responsible for making the resource
Cullen J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3322/caac.21215" target="_blank" rel="noreferrer">10.3322/caac.21215</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
2014-04
2014
Adaptation
Backlog
Ca: A Cancer Journal For Clinicians
Cullen J
Data Interpretation
Decision Making
Delivery of Health Care
Grief
Humans
Integrated
Journal Article
Neoplasms
Palliative Care
Pediatrics
Professional-family Relations
Psychological
Quality Of Life
Social Support
statistical
-
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/10.7748/ncyp2014.04.26.3.16.e349" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp2014.04.26.3.16.e349</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
Meeting the needs of siblings of children with life-limiting illnesses
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Terminal Care; Siblings; Professional-Family Relations; Health Services Needs and Demand; Patient-Centered Care; social support; Adaptation; Psychological
Creator
An entity primarily responsible for making the resource
Lane C; Mason J
Description
An account of the resource
Siblings of children with life-threatening or life-limiting illnesses can face a number of challenges, yet this is a group that is often unacknowledged as needing specific support. It is essential that the needs of siblings are recognised and addressed as part of a family-centred approach. This article discusses the experiences and challenges faced by siblings in such families and what children's nurses can do to help. In particular, it outlines a group intervention offered by a community children's palliative care service.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp2014.04.26.3.16.e349" target="_blank" rel="noreferrer">10.7748/ncyp2014.04.26.3.16.e349</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
2014
Adaptation
Backlog
Child
Health Services Needs And Demand
Humans
Journal Article
Lane C
Mason J
Nursing Children and Young People
Patient-centered Care
Professional-family Relations
Psychological
Siblings
Social Support
Terminal Care
-
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/pbc.24652" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24652</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
Parent perceptions of the quality of information received about a child's cancer
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
2013
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Questionnaires; Professional-Family Relations; Preschool; Health Communication
Creator
An entity primarily responsible for making the resource
Kaye E; Mack JW
Description
An account of the resource
BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains. RESULTS: Most parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P = 0.62) and treatment (P = 0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P < 0.001), likelihood of cure (P < 0.001), what the diagnosis means for the future (P < 0.001), and whether there is a cause for the child's cancer (P < 0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings. CONCLUSIONS: Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality.
2013-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.24652" target="_blank" rel="noreferrer">10.1002/pbc.24652</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
2013
Adolescent
Adult
Backlog
Child
Cross-sectional Studies
Female
Health Communication
Humans
Infant
Journal Article
Kaye E
Mack JW
Male
Neoplasms
Parents
Pediatric Blood & Cancer
Preschool
Professional-family Relations
Questionnaires
-
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.ccc.2012.12.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ccc.2012.12.002</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
Medical ethics in pediatric critical care
Publisher
An entity responsible for making the resource available
Critical Care Clinics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; United States; Terminal Care; decision making; Parental Consent; Personal Autonomy; Pediatrics; Withholding Treatment; Professional-Family Relations; Dissent and Disputes; Truth Disclosure; Critical Care; Tissue and Organ Procurement; Ethics; Medical; Patient Rights; Clinical; Ethics Committees; Resource Allocation
Creator
An entity primarily responsible for making the resource
Orioles A; Morrison WE
Description
An account of the resource
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital ethics committees, and national guidelines, such as publications from the American Academy of Pediatrics, American Medical Association, or Society of Critical Care Medicine, are an essential part of the toolkit of any intensivist. Open discussion with colleagues and within the multidisciplinary team can also ensure that when difficult situations arise, they are addressed in a proactive, evidence-based, and collegial manner.
2013-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ccc.2012.12.002" target="_blank" rel="noreferrer">10.1016/j.ccc.2012.12.002</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
2013
Backlog
Child
Clinical
Critical Care
Critical Care Clinics
Decision Making
Dissent And Disputes
Ethics
Ethics Committees
Humans
Journal Article
Medical
Morrison WE
Orioles A
Parental Consent
Patient Rights
Pediatrics
Personal Autonomy
Professional-family Relations
Resource Allocation
Terminal Care
Tissue and Organ Procurement
Truth Disclosure
United States
Withholding Treatment
-
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.pedn.2013.04.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedn.2013.04.002</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
Advanced care planning discussions with adolescents and young adults with cancer
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Female; Humans; Male; Young Adult; Neoplasms; Terminal Care; Parent-Child Relations; Parents; Professional-Family Relations; Disease Progression; Legal Guardians; quality of life; advance care planning; Neoplasm Invasiveness
Creator
An entity primarily responsible for making the resource
McBride D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2013.04.002" target="_blank" rel="noreferrer">10.1016/j.pedn.2013.04.002</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
2013-08
2013
Adolescent
Advance Care Planning
Backlog
Disease Progression
Female
Humans
Journal Article
Journal of Pediatric Nursing
Legal Guardians
Male
McBride D
Neoplasm Invasiveness
Neoplasms
Parent-child Relations
Parents
Professional-family Relations
Quality Of Life
Terminal Care
Young Adult
-
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/10.1017/S1478951512000284" target="_blank" rel="noreferrer">http://doi.org/10.1017/S1478951512000284</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
Exploring perceptions of psychological services in a children's hospice in the United Kingdom
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; Young Adult; Palliative Care; Great Britain; hospice care; Adult; Critical Illness; Parents; Professional-Family Relations; disabled children; Child Health Services; Focus Groups; Stress; Palliative Care; Psychological
Creator
An entity primarily responsible for making the resource
Wray Jo; Lindsay B; Crozier K; Andrews L; Leeson J
Description
An account of the resource
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services. OBJECTIVE: The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals). METHOD: Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding. RESULTS: Two main themes addressing perceptions of current psychological provision emerged: "understanding psychological support" and "unmet psychological need." Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems. SIGNIFICANCE OF RESULTS: Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951512000284" target="_blank" rel="noreferrer">10.1017/S1478951512000284</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
2013
Adult
Andrews L
Backlog
Child
Child Health Services
Critical Illness
Crozier K
Disabled Children
Focus Groups
Great Britain
Hospice Care
Humans
Journal Article
Leeson J
Lindsay B
Palliative & Supportive Care
Palliative Care
Parents
Professional-family Relations
Psychological
Stress
Wray Jo
Young Adult
-
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/PCC.0b013e318272048d" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0b013e318272048d</a>
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Title
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Characteristics of family conferences at the bedside versus the conference room in pediatric critical care
Publisher
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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
2013
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; patient care team; decision making; Cohort Studies; Health Care Surveys; Parents; Attitude of Health Personnel; Questionnaires; Prospective Studies; Professional-Family Relations; Physicians; Patient Participation; Intensive Care; Pediatric
Creator
An entity primarily responsible for making the resource
October TW; Watson Anne C; Hinds PS
Description
An account of the resource
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians (90.9%) providing care to 29 patients whose families participated in 58 family conferences. MEASUREMENTS AND MAIN RESULTS: Family conferences, defined as a meeting involving the parent(s) of a PICU patient and the critical care attending physician to discuss a treatment decision, redirection of care from curative to palliative, or deliver bad news, occurred most commonly among families of the sickest patients. Conferences were conducted at the bedside 20 times out of 58 (33%). Although physicians stated a general preference to discuss withdrawal or withholding care in the conference room, there was no difference in location during actual conferences. Physicians preferred the bedside when they wanted the patient to participate (p = 0.01) or because it was perceived to be easier (p < 0.0005) or faster (p = 0.016) to conduct, while the conference room was preferred when additional space was needed (p < 0.0005). Family conferences at the bedside were less likely to include a social worker (p < 0.0005), consultant physicians (p = 0.043), or father of the patient (p = 0.006) as compared with conferences in a conference room. Family conferences convened to discuss a treatment were followed by a decision within 24 hours (42% of the time) and a change in code status (32% of the time). In 32 of 58 family conferences (55%), the attending physician did not have a prior relationship with the family. CONCLUSION: Family conferences in the PICU are common both at the bedside and in conference rooms in a subpopulation of the most critically ill children and frequently result in a treatment decision or change in code status.
2013-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0b013e318272048d" target="_blank" rel="noreferrer">10.1097/PCC.0b013e318272048d</a>
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Type
The nature or genre of the resource
Journal Article
2013
Attitude Of Health Personnel
Backlog
Child
Cohort Studies
Decision Making
Female
Health Care Surveys
Hinds PS
Humans
Intensive Care
Intensive Care Units
Journal Article
Male
October TW
Parents
Patient Care Team
Patient Participation
Pediatric
Pediatric Critical Care Medicine
Physicians
Professional-family Relations
Prospective Studies
Questionnaires
Watson Anne C
-
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/10.1111/j.1440-1800.2012.00604.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1440-1800.2012.00604.x</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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Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit
Publisher
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Nursing Inquiry
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Female; Humans; Male; Intensive Care Units; Terminal Care; Family; Adult; Prognosis; Aged; Middle Aged; Professional-Family Relations; Communication; Critical Care
Creator
An entity primarily responsible for making the resource
Gutierrez KM
Description
An account of the resource
Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician communication of negative prognoses to families and identifying timing influences. Prognostic communication of critical care physicians to nurses and family members was observed and physicians and family members were interviewed. Physician perception of prognostic certainty, based on an accumulation of empirical data, and the perceived need for decision-making, drove the timing of prognostic communication, rather than family needs. Although prognoses were initially identified using intuitive knowledge for patients in one of the six identified prognostic categories, utilizing decision-making to drive prognostic communication resulted in delayed prognostic communication to families until end-of-life (EOL) decisions could be justified with empirical data. Providers will better meet the needs of families who desire earlier prognostic information by separating prognostic communication from decision-making and communicating the possibility of a poor prognosis based on intuitive knowledge, while acknowledging the uncertainty inherent in prognostication. This sets the stage for later prognostic discussions focused on EOL decisions, including limiting or withdrawing treatment, which can be timed when empirical data substantiate intuitive prognoses. This allows additional time for families to anticipate and prepare for end-of-life decision-making.
2013-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1440-1800.2012.00604.x" target="_blank" rel="noreferrer">10.1111/j.1440-1800.2012.00604.x</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
2013
Adolescent
Adult
Aged
Backlog
Communication
Critical Care
Family
Female
Gutierrez KM
Humans
Intensive Care Units
Journal Article
Male
Middle Aged
Nursing Inquiry
Professional-family Relations
Prognosis
Terminal Care
-
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/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">http://doi.org/10.1136/medethics-2011-100104</a>
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Title
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Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Publisher
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Journal Of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; retrospective studies; Intensive Care Units; Terminal Care; Medical Futility; Withholding Treatment; Professional-Family Relations; Culture; Conflict (Psychology); Religion and Psychology; Pediatric
Creator
An entity primarily responsible for making the resource
Brierley J; Linthicum J; Petros A
Description
An account of the resource
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
2013-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">10.1136/medethics-2011-100104</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
2013
Backlog
Brierley J
Child
Conflict (Psychology)
Culture
Humans
Intensive Care Units
Journal Article
Journal of Medical Ethics
Linthicum J
Medical Futility
Pediatric
Petros A
Professional-family Relations
Religion and Psychology
Retrospective Studies
Terminal Care
Withholding Treatment
-
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/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2013.19.10.495</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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Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; Adult; Parents; Attitude of Health Personnel; Attitude to Death; Professional-Family Relations; Communication; Brazil; Pediatric; Preschool; Quality of Health Care
Creator
An entity primarily responsible for making the resource
Abib El Halal Gilda MC; Piva JP; Lago PM; El Halal MGS; Cabral FC; Nilson C; Garcia Pedro CR
Description
An account of the resource
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">10.12968/ijpn.2013.19.10.495</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).
Type
The nature or genre of the resource
Journal Article
2013
Abib El Halal Gilda MC
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
Brazil
Cabral FC
Child
Communication
Decision Making
El Halal MGS
Female
Garcia Pedro CR
Humans
Infant
Intensive Care Units
International Journal of Palliative Nursing
Journal Article
Lago PM
Male
Nilson C
Parents
Pediatric
Piva JP
Preschool
Professional-family Relations
Quality Of Health Care
Terminal Care
-
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/10.1542/peds.2012-1957" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-1957</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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Parental explicit heuristics in decision-making for children with life-threatening illnesses
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; Male; Young Adult; Cohort Studies; Prospective Studies; Professional-Family Relations; Communication; Choice Behavior; Problem Solving; Hospitals; Pediatric; adolescent; Preschool; Psychological; decision making; infant; Parents/psychology; Palliative Care/psychology; Philadelphia; Parent caregivers; Chronic Disease/psychology/therapy; Interview; Judgment; Aphorisms and Proverbs as Topic; Critical Illness/psychology/therapy
Creator
An entity primarily responsible for making the resource
Renjilian CB; Womer JW; Carroll KW; Kang T; Feudtner C
Identifier
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<a href="http://doi.org/10.1542/peds.2012-1957" target="_blank" rel="noreferrer">10.1542/peds.2012-1957</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
OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. METHODS: Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. RESULTS: All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. CONCLUSIONS: Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.
2013
Adolescent
Aphorisms and Proverbs as Topic
Backlog
Carroll KW
Child
Choice Behavior
Chronic Disease/psychology/therapy
Cohort Studies
Communication
Critical Illness/psychology/therapy
Decision Making
Female
Feudtner C
Hospitals
Humans
Infant
Interview
Journal Article
Judgment
Kang T
Male
Palliative Care/psychology
Parent caregivers
Parents/psychology
Pediatric
Pediatrics
Philadelphia
Preschool
Problem Solving
Professional-family Relations
Prospective Studies
Psychological
Renjilian CB
Womer JW
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
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">http://doi.org/10.11124/jbisrir-2015-2413</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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Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Publisher
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Jbi Database Of Systematic Reviews And Implementation Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication; Critical Illness/px [Psychology]; Palliative Care/px [Psychology]; Parents/px [Psychology]; Professional-Family Relations; adolescent; Adult; Child; Female; Health Personnel/px [Psychology]; Humans; infant; Male; Newborn; Preschool; Qualitative Research; Young Adult
Creator
An entity primarily responsible for making the resource
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Description
An account of the resource
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care. It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care.13,28,29,35 Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency.29 Nor is it clear whether such findings can be generalized across different cultural contexts.13,36 In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings. Background The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care. Background A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.
2015-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">10.11124/jbisrir-2015-2413</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).
2015
Adolescent
Adult
Bradford N
Child
Communication
Critical Illness/px [psychology]
Danby S
Ekberg S
Female
Health Personnel/px [psychology]
Herbert A
Humans
Infant
Jbi Database Of Systematic Reviews And Implementation Reports
Male
March 2018 List
Newborn
Palliative Care/px [psychology]
Parents/px [psychology]
Preschool
Professional-family Relations
Qualitative Research
Yates P
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
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedhc.2016.04.015</a>
Dublin Core
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Title
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Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Pediatric Nurse Practitioners; Andersen model; California; Cardiovascular Diseases; complex chronic conditions; Congenital Abnormalities; end of life; hospice; Hospice Care/statistics & numerical data/ utilization; Humans; infant; Infants; Insurance Claim Review/statistics & numerical data; Length of Stay/economics/ statistics & numerical data; Medicaid; Medicaid/ statistics & numerical data; Nurse-Patient Relations; Nurse's Role; Palliative Care/statistics & numerical data/ utilization; Parents/ psychology; Professional-Family Relations; Respiratory Insufficiency; United States
Creator
An entity primarily responsible for making the resource
Lindley LC; Newnam KM
Description
An account of the resource
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from 2007 to 2010 California Medicaid claims files (N = 207). Analyses included logistic and negative binomial multivariate regression models. RESULTS: More than 15% of infants enrolled in hospice care for an average of 5 days. Infant girls and infants with congenital anomalies were more likely to enroll in hospice care and to have longer stays. However, cardiovascular and respiratory conditions were negatively related to hospice enrollment and hospice length of stay. CONCLUSIONS: This study provides insights for nurses and other clinicians who care for infants and their families at end of life and suggests that nurses can assist families in identifying infant hospice providers who may help families understand their options for end-of-life care.
2017-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">10.1016/j.pedhc.2016.04.015</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).
2017
Andersen model
California
Cardiovascular Diseases
Complex Chronic Conditions
Congenital Abnormalities
End Of Life
Hospice
Hospice Care/statistics & numerical data/ utilization
Humans
Infant
Infants
Insurance Claim Review/statistics & numerical data
Journal Of Pediatric Health Care
Length of Stay/economics/ statistics & numerical data
Lindley LC
March 2018 List
Medicaid
Medicaid/ statistics & numerical data
Newnam KM
Nurse-patient Relations
Nurse's Role
Palliative Care/statistics & numerical data/ utilization
Parents/ Psychology
Pediatric Nurse Practitioners
Professional-family Relations
Respiratory Insufficiency
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/10.1001/jamapediatrics.2014.3449" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2014.3449</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
Close to home
Publisher
An entity responsible for making the resource available
Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Humans; Professional-Family Relations; Physicians; social support; Leukemia; Community Networks; Grief
Creator
An entity primarily responsible for making the resource
Rosenberg AR
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2014.3449" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.3449</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
2015-03
2015
Backlog
Community Networks
Grief
Humans
JAMA Pediatrics
Journal Article
Leukemia
Physicians
Professional-family Relations
Rosenberg AR
Social Support
-
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/10.1542/peds.2014-1903" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2014-1903</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
Talking with parents about end-of-life decisions for their children
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Intensive Care Units; Palliative Care; Advance Directives; decision making; Pediatrics; Withholding Treatment; Prospective Studies; Professional-Family Relations; Communication; Life Support Care; Netherlands; Qualitative Research; Pediatric; adolescent; Preschool; decision making; infant; Newborn; DNAR; Professional-Family Relations; Pediatrics; Advance Directives; Communication
Creator
An entity primarily responsible for making the resource
de Vos MA; Bos AP; Plötz FB; van Heerde M; de Graaff Bert M; Tates K; Truog RD; Willems DL
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.
2015-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-1903" target="_blank" rel="noreferrer">10.1542/peds.2014-1903</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
2015
Adolescent
Advance Directives
Backlog
Bos AP
Child
Communication
de Graaff Bert M
de Vos MA
Decision Making
DNAR
Female
Humans
Infant
Intensive Care Units
Journal Article
Life Support Care
Male
Netherlands
Newborn
Palliative Care
Pediatric
Pediatrics
Plötz FB
Preschool
Professional-family Relations
Prospective Studies
Qualitative Research
Tates K
Truog RD
van Heerde M
Willems DL
Withholding Treatment
-
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/10.1001/archpediatrics.2009.143" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.143</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
Why don't we talk?
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; infant; Critical Illness; Emotions; Professional-Family Relations; Communication; Newborn; Neonatology/education
Creator
An entity primarily responsible for making the resource
Jones Jr MD
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2009.143" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.143</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
2009
2009
Archives Of Pediatrics & Adolescent Medicine
Backlog
Communication
Critical Illness
Emotions
Humans
Infant
Jones Jr MD
Journal Article
Neonatology/education
Newborn
Professional-family Relations
-
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/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.155</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
Neonatologist training to guide family decision making for critically ill infants
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; infant; United States; Critical Illness; Attitude of Health Personnel; Education; Questionnaires; Professional-Family Relations; Communication; Clinical Competence; Linear Models; Fellowships and Scholarships; Internet; Medical; decision making; infant; Newborn; Premature; Neonatology/education; Graduate; Nonparametric; Statistics
Creator
An entity primarily responsible for making the resource
Boss RD; Hutton N; Donohue PK; Arnold RM
Description
An account of the resource
OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING: Neonatal-perinatal training programs in the United States. PARTICIPANTS: Graduating fellows in their final month of fellowship. MAIN OUTCOME MEASURES: Fellows' perceived training and preparedness to communicate with families about decision making. RESULTS: The response rate was 72%, representing 83% of accredited training programs. Fellows had a great deal of training in the medical management of extremely premature and dying infants. However, they reported much less training to communicate and make collaborative decisions with the families of these infants. More than 40% of fellows reported no communication training in the form of didactic sessions, role play, or simulated patient scenarios and no clinical communication skills training in the form of supervision and feedback of fellow-led family meetings. Fellows felt least trained to discuss palliative care, families' religious and spiritual needs, and managing conflicts of opinion between families and staff or among staff. Fellows perceived communication skills training to be of a higher priority to them than to faculty, and 93% of fellows feel that training in this area should be improved. CONCLUSIONS: Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates but are inadequately trained in the communication skills that families identify as critically important when facing end-of-life decisions.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.155</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
Archives Of Pediatrics & Adolescent Medicine
Arnold RM
Attitude Of Health Personnel
Backlog
Boss RD
Clinical Competence
Communication
Critical Illness
Decision Making
Donohue PK
Education
Fellowships And Scholarships
Graduate
Humans
Hutton N
Infant
Internet
Journal Article
Linear Models
Medical
Neonatology/education
Newborn
Nonparametric
Premature
Professional-family Relations
Questionnaires
Statistics
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/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2010.12</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
Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Canada; Education; Professional-Family Relations; Interdisciplinary Communication; Program Evaluation; Curriculum; Quality of Health Care; Patient Advocacy; Models; Continuing/methods; Educational; Pediatrics/education
Creator
An entity primarily responsible for making the resource
Solomon MZ; Browning DM; Dokken DL; Merriman MP; Rushton CH
Description
An account of the resource
OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">10.1001/archpediatrics.2010.12</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
2010
Archives Of Pediatrics & Adolescent Medicine
Backlog
Browning DM
Canada
Child
Continuing/methods
Curriculum
Dokken DL
Education
Educational
Humans
Interdisciplinary Communication
Journal Article
Merriman MP
Models
Palliative Care
Patient Advocacy
Pediatrics/education
Professional-family Relations
Program Evaluation
Quality Of Health Care
Rushton CH
Solomon MZ
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/10.1002/pbc.21042" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.21042</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
Symptoms in the palliative phase of children with cancer
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
2007
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Palliative Care; Neoplasms; Pain; Pain Management; Terminal Care; Physician-Patient Relations; Parent-Child Relations; Parents; Emotions; Questionnaires; Attitude to Death; Professional-Family Relations; social support; Age Factors; caregivers; Fatigue; Fear; Anorexia; Leukemia; Treatment Failure; Gastrointestinal Diseases; Stress; Preschool; Psychological; Brain neoplasms; Mobility Limitation
Creator
An entity primarily responsible for making the resource
Theunissen JMJ; Hoogerbrugge PM; van Achterberg T; Prins JB; Vernooij-Dassen M; van den Ende CHM
Description
An account of the resource
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
2007-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.21042" target="_blank" rel="noreferrer">10.1002/pbc.21042</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
2007
Adolescent
Age Factors
Anorexia
Attitude To Death
Backlog
Brain Neoplasms
Caregivers
Child
Emotions
Fatigue
Fear
Female
Gastrointestinal Diseases
Hoogerbrugge PM
Humans
Infant
Journal Article
Leukemia
Male
Mobility Limitation
Neoplasms
Pain
Pain Management
Palliative Care
Parent-child Relations
Parents
Pediatric Blood & Cancer
Physician-patient Relations
Preschool
Prins JB
Professional-family Relations
Psychological
Questionnaires
Retrospective Studies
Social Support
Stress
Terminal Care
Theunissen JMJ
Treatment Failure
van Achterberg T
van den Ende CHM
Vernooij-Dassen M