BACKGROUND: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palliative Care Training. OBJECTIVE: This study aimed to evaluate the transfer of learning and practice from a virtual training course on perinatal/neonatal palliative care (PNPC) by a range of clinicians. STUDY DESIGN: A descriptive prospective survey design was used to collect data at two time points, immediately following the training course and 6 months later. Frequency and descriptive statistics were used to measure the implementation of PNPC quality indicators, self-reported competence, and clinical facilitators and barriers. A t-test was used to compare participants' anticipated learning transfer to actual learning transfer. Two open-ended items assessed benefits and drawbacks of virtual training. RESULTS: At course completion, participants anticipated opportunities to implement PNPC strategies with means of 84-87, and at the 6-month mark, the reported implementation had means ranging from 71 to 77. At 6 months post training, participants reported feeling competent/highly competent in each variable with frequency scores of 89%-98%. The opportunity to learn key concepts of PNPC and refresh skill sets ranked as the top facilitators, while the top barriers were the lack of opportunity to use PNPC principles and the lack of funding. CONCLUSION: Learning transfer after a virtual training course of PNPC proved to be successful, with a high rate of self-reported actual implementation and competence at 6 months after the training.
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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).
neonatal palliative care; perinatal palliative care; medical education; quality indicators; learning transfer
Description
Objective: The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. Study Design: A cross-sectional survey mixed-method design was used to obtain data from an interdisciplinary team of professionals one year after attending a PNPC training course. A questionnaire with 32 QIs queried participants about self-reported implementation of PNPC and that of their colleagues. Descriptive and frequency data were analyzed to measure the implementation of PNPC QIs. Qualitative data were examined using content analysis. Results: Response rate was 34 of 76 (44.7%). Half of the QIs are implemented in clinical settings by course attendees more than 90% of the time, and 15 QIs are implemented between 70 and 89.9%. Colleagues within the same healthcare system applied palliative care practices less frequently than those who attended the training course. When asked if quality indicators were "always" implemented by colleagues, the average difference in scores was 36% lower. Qualitative analyses resulted in three themes that addressed changes in clinical practice, and four themes that summarized barriers in practice. Conclusion: There is high frequency of implementation of QIs by professionals who attended an evidence based PNPC training course. PNPC is implemented by the colleagues of attendees, but with less frequency. Attending evidence-based education increases clinicians' opportunities to translate quality PNPC care into clinical settings.
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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).
life limiting conditions; neonatal palliative care; program development; perinatal palliative care (PPC); interdisciplinary care
Description
The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.
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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).
competence; neonatal; palliative care; perinatal; training course
Description
Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for clinicians has not kept pace. Therefore, an interdisciplinary team developed a 3-day intensive PNPC training course for physicians, nurses, and other healthcare professionals at Columbia University Irving Medical Center (CUIMC). Objective: The aim of this study was to assess the efficacy of a PNPC training course in improving the self-reported competence of participants. Study Design: A cross-sectional survey design was used to obtain data from 88 healthcare professionals who attended the PNPC training course. Data was collected using a validated questionnaire. The questionnaire included 32 items that queried participants about their self-assessed competence using a forced 1-4 Likert scale. The 32 items, which served as the outcome variables, were clustered into the eight domains of palliative care. The survey was administered through a web-based tool at the beginning and the conclusion of the course. Results: Results from two-sample t-tests comparing pre-test and post-test self-assessed competence were statistically significant for each item across disciplines. Additional analysis revealed that after participation in the training course, the statistically significant differences between physicians' and nurses' pre-course self-reported competence disappeared. Conclusion: The development of an evidence-based curriculum improved the self-reported competence of participants across disciplines, filled a specific gap in nurses' self-reported competence and addressed a global training need.
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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).
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).
Quality Predictors Of Parental Satisfaction After Birth Of Infants With Life-limiting Conditions
Creator
Wool C; Kain V J; Mendes J; Carter BS
Identifier
DOI: 10.1111/apa.13980
Publisher
Acta Paediatrica
Date
2017
Subject
Foetal Diagnosis; Life-limiting Condition; Parental Satisfaction; Perinatal Palliative Care
Description
AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: "The Voice of Parents". RESULTS: The web-based survey had a final sample of N=405 parent responders. Overall, parents reported satisfaction with care (80.2%; n=393). Parents satisfied with care reported higher agreement with quality indicator items for all subscales. In total, 17 items from the 41-item instrument revealed the ability to predict higher parental satisfaction when particular QI are reported. CONCLUSION: This study has led to credible insights into parental satisfaction with care given after the birth of an infant with a life-limiting condition. The findings contribute to development of a model with a good fit in ascertaining the importance of compassion, unhurried provider-patient communication and bereavement interventions. This article is protected by copyright. All rights reserved.
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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).
Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition
Creator
Wool C; Black BP; Woods AB
Identifier
DOI: 10.1097/ANS.0000000000000147
Publisher
Advances In Nursing Science
Date
2016
Subject
Perinatal; State; Model; Program; Decisions; Prenatal-diagnosis; Nursing; Fetal Diagnosis; Palliative Care; Quality Indicators; Experiences; Measurement; Medical Care; Diagnosis; Health Aspects; Palliative Treatment; Fetal Diseases; Analysis; Quality Management; Pregnancy; Medical Diagnosis; Palliative Care; Parents & Parenting; Perception; Quality Of Care
Description
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.
Rights
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).
Citation List Month
September 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10647
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.]]>2023-02-23T17:20:40-05:00
Title
A Survey Of Perinatal Palliative Care Programs In The United States: Structure, Processes, And Outcomes.
Creator
Denney-Koelsch E; Black BP; Cote-Arsenault D; Wool C; Kim S; Kavanaugh K
Identifier
DOI: 10.1089/jpm.2015.0536
Publisher
Journal Of Palliative Medicine
Date
2016
Subject
Fetal-abnormality; Hospice; Services; Quality Indicators; Infant; Diagnosis; Science; Health Care Sciences & Services
Description
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.
Rights
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).
Citation List Month
October 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10609
Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care. Descriptive analyses and logistic regression identified relationships among variables.
Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4–2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4–2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4–2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time.
Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.]]>2023-02-23T17:20:39-05:00
Title
Parent Reported Outcomes Of Quality Care And Satisfaction In The Context Of A Life-limiting Fetal Diagnosis.
Creator
Wool C; Repke JT; Woods AB
Publisher
Journal Of Maternal, Fetal And Neonatal Medicine
Date
2016
Subject
Parental Satisfaction; Patient Reported Outcomes; Perinatal Palliative Care; Quality Of Health Care
Description
Objective: To identify which quality indicators (QI) predict patient satisfaction.
Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care. Descriptive analyses and logistic regression identified relationships among variables.
Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4–2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4–2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4–2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time.
Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.
Rights
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).
Citation List Month
May 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10580
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.]]>2023-02-23T17:20:39-05:00
Title
Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Creator
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K
Identifier
DOI: 10.1089/jpm.2015.0266
Publisher
Journal Of Palliative Medicine
Date
2016
Subject
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
Description
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.
Rights
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).