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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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December 2021 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2021.27.8.386</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
Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
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
2021
Subject
The topic of the resource
Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research
Creator
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Côté-Arsenault D; Denney-Koelsch E; Elliott G
Description
An account of the resource
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.8.386</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
Care coordinator
Case Management
Côté-Arsenault D
Curriculum
December 2021 List
Delivery of Health Care
Denney-Koelsch E
Elliott G
Family
Fetal Diagnosis
Grief
International Journal of Palliative Nursing
Newborn Infant
Palliative Care
Perinatal Care
Perinatal Palliative Care
Pregnancy
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
October 2016 List
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
A Survey Of Perinatal Palliative Care Programs In The United States: Structure, Processes, And Outcomes.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Fetal-abnormality; Hospice; Services; Quality Indicators; Infant; Diagnosis; Science; Health Care Sciences & Services
Creator
An entity primarily responsible for making the resource
Denney-Koelsch E; Black BP; Cote-Arsenault D; Wool C; Kim S; Kavanaugh K
Description
An account of the resource
BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.
DESIGN:
Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP). Responses related to NCP Domain 1 (Structure and Process of Care) were analyzed using conventional content analysis.
SUBJECTS:
U.S. PPC program representatives (N = 75) from 30 states.
RESULTS:
The majority of programs have a care coordinator, but roles vary from direct patient care to program administration. Participants described a range of topics discussed during family meetings to determine parental goals across the perinatal period. Support and respect for parent preferences and choices were the most important components of care. Desired program outcomes include parental satisfaction with physical and psychosocial support, help with the decision-making process, opportunity to parent their infant, infant comfort, and positive personal and family growth.
CONCLUSIONS:
While PPC programs do not often measure quality, their goals are family centered, with a focus on parent satisfaction with decision making and psychosocial support. PPC programs coordinate interdisciplinary care by arranging meetings and advocating for families. More research is needed to understand parent perspectives on care provided.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0536
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).
2016
Black BP
Côté-Arsenault D
Denney-Koelsch E
Diagnosis
Fetal-abnormality
Health Care Sciences & Services
Hospice
Infant
Journal of Palliative Medicine
Kavanaugh K
Kim S
October 2016 List
Quality Indicators
Science
Services
Wool 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
March 2016 List
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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Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; Critical Care/organization & Administration; Cross-sectional Studies; Female; Fetal Mortality; Humans; Infant Newborn; Palliative Care/organization & Administration; Parents/psychology; Perinatal Care/organization & Administration; Pregnancy; Professional-family Relations; Surveys And Questionnaires; United States
Creator
An entity primarily responsible for making the resource
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K
Description
An account of the resource
BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
OBJECTIVE:
To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
DESIGN:
A cross-sectional survey design included 48 items addressing funding and domains of quality care.
SUBJECTS:
Program representatives from 30 states (n = 75).
PRINCIPAL RESULTS:
Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
CONCLUSION:
This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0266
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).
2016
Bereavement
Côté-Arsenault D
Critical Care/organization & Administration
Cross-sectional Studies
Denney-Koelsch E
Female
Fetal Mortality
Humans
Infant Newborn
Journal of Palliative Medicine
Kavanaugh K
Kim S
March 2016 List
Palliative Care/organization & Administration
Parents/psychology
Perinatal Care/organization & Administration
Perry Black B
Pregnancy
Professional-family Relations
Surveys And Questionnaires
United States
Wool 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
March 2016 List
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
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Publisher
An entity responsible for making the resource available
Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
Creator
An entity primarily responsible for making the resource
Cote-Arsenault D; Denney-Koelsch E
Description
An account of the resource
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.socscimed.2016.02.033
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).
2016
Adult
Choice Behavior
Côté-Arsenault D
Denney-Koelsch E
Developmental Task
Emotions
Female
Fetal Diseases/diagnosis
Fetal Diseases/mortality
Humans
Infant
Lethal Fetal Diagnosis
Longitudinal
Longitudinal Studies
Male
March 2016 List
Middle Aged
Needs Assessment
Palliative Care
Parents/psychology
Perinatal Care
Perinatal Palliative Care
Phenomenology
Pregnancy
Prenatal Diagnosis
Prenatal Diagnosis/psychology
Qualitative Research
Social science & medicine
Usa
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
December 2016 List
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
Teaching The Art Of Difficult Family Conversations.
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication Skills; Communication Skills Curriculum; Debriefing; Family Conversations; Giving Bad News; Simulation
Creator
An entity primarily responsible for making the resource
Dadiz R; Spear ML; Denney-Koelsch E
Description
An account of the resource
CONTEXT:
Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However, traditional teaching methods using didactics and expert role modeling are often inadequate.
OBJECTIVES:
The train-the-educator workshop aimed to teach educators how to create and conduct workshops on facilitating difficult family conversations that target their own learners' needs.
METHODS:
This three-hour workshop included instruction on scenario writing and on the use of standardized actors as patients and family members. Workshop leaders presented examples of commonly encountered clinical scenarios where difficult information is discussed. The session used experiential teaching techniques. Outcomes were measured by qualitative discussions and a questionnaire to demonstrate communication skills learned from the sessions.
RESULTS:
The workshop was well received by participants who consisted of educators attending the annual meeting of the Pediatric Academic Societies in May 2016. Evaluations revealed that 92% of participants agreed or strongly agreed that the workshop achieved the learning objectives. All participants believed that the workshop increased their knowledge, competency, and skills in teaching and facilitation as an educator, with 86% of participants planning to apply the skills toward curriculum development. The major themes that participants learned centered on facilitation skills as an educator and techniques on how to communicate during challenging family meetings (86% of comments).
CONCLUSION:
This train-the-educator workshop addresses a critical need in both palliative care and general medicine by enhancing the educators' skills in designing and implementing a curriculum on communication skills of health care providers using experiential techniques with formative feedback. The authors hope that by outlining the implementation of this three-hour interactive format, future educators will adapt and use this workshop as it works best for their learners.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jpainsymman.2016.12.322
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).
2016
Communication Skills
Communication Skills Curriculum
Dadiz R
Debriefing
December 2016 List
Denney-Koelsch E
Family Conversations
Giving Bad News
Journal of Pain and Symptom Management
Simulation
Spear ML