Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Infant; Neonatal Palliative Care; Family; Nursing Staff; Anxiety; educational program; end-of-life care; Infant; neonatal; Palliative Care; Newborn Humans Intensive Care Units
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff are not educated or prepared to provide end-of-life care (EOLC) and support to family members. There is a lack of literature that looks at parents' perception of EOLC and the potential benefit that proper education may have had on their experience. Methods: Sixteen articles were reviewed, including 7 cohort studies, 5 expert opinions, 1 experimental trail, 1 case-controlled study, 1 literature review, and 1 case study. Conclusion: Implementation of a palliative care education program can provide the necessary tools for neonatal staff to provide EOLC. This education can reduce the stress and anxiety that staff feel about EOLC. With proper education, the neonatal staff can then provide the necessary support for family members. Relevance to Clinical Practice: EOLC is part of all NICUs, and neonatal staff should receive proper education on how to handle such situations.
Arbuckle AD
Neonatal Network
2022
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).
<a href="http://doi.org/10.1891/nn-2021-0010" target="_blank" rel="noreferrer noopener">10.1891/nn-2021-0010</a>
Perinatal Palliative Care in the Neonatal Intensive Care Unit
Hospice and Palliative Care Nursing; Infant Newborn Diseases; Child; Female; Humans; Infant; Infant Newborn; Intensive Care Units Neonatal; Memory making; Neonatal palliative care; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Resilience
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.
Maher-Griffiths C
Critical Care Nursing Clinics of North America
2022
<a href="http://doi.org/10.1016/j.cnc.2021.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2021.11.008</a>
Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training
neonatal palliative care; perinatal palliative care; medical education; quality indicators; learning transfer
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.
Wool C; Parravicini E
Frontiers in Pediatrics
2021
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).
<a href="http://doi.org/10.3389/fped.2021.752971" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.752971</a>
Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit
End-of-life care; NICU; neonatal palliative care; comfort care; perceptions; Neonatal Nurses
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative care in their NICU setting.Study Design and Methods: A cross-sectional design using the Neonatal Palliative Care Attitude Scale (NiPCAS™©) was administered using an online survey distributed to neonatal nurses through the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) and National Association of Neonatal Nurses (NANN). Parametric statistical analyses were conducted to explore relationships between unit policy and neonatal palliative care (NPC) education, and the nurses' perceptions.Results: Ninety-nine of 1,800 AWHONN members who identified as NICU nurses completed the survey, representing a response rate of 5.5% and 101 of 4,000 NANN members who subscribe to the MYNANN message boards completed the survey, reflecting a 2.5% response rate. N = 200 surveys were completed with minimal data missing, resulting in a final sample of 200. Exploratory factor analysis yielded these subconstructs: Unit Culture, Resources, and Perceived Inappropriate Care. Barriers identified were Perceived Inappropriate Care and Societal Understanding of NPC. A positive correlation was noted for NiPCAS™© scores and unit culture support (r(185) = .66, n = 187, p < .01), unit NPC policy (r(184) = .446, n = 186, p < .01), and NPC education (r(185) = .373, n = 187, p < .01).Clinical Implications: Nurses who work in a NICU with an NPC policy and who have received palliative care education demonstrated more favorable attitudes toward NPC. Policy and educational programs are important strategies to promote high-quality care for high-risk infants and their families.
Chin SDN; Paraszczuk AM; Eckardt P; Bressler T
MCN: The American Journal of Maternal/Child Nursing
2021
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).
<a href="http://doi.org/10.1097/nmc.0000000000000738" target="_blank" rel="noreferrer noopener">10.1097/nmc.0000000000000738</a>
The Neonatal Comfort Care Program: Origin and Growth Over 10 Years
life limiting conditions; neonatal palliative care; program development; perinatal palliative care (PPC); interdisciplinary care
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.
Wool C; Parravicini E
Frontiers in Pediatrics
2020
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).
<a href="http://doi.org/10.3389/fped.2020.588432" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.588432</a>
End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms
end-of-life care; neonatal; neonatal hospice; neonatal pain; neonatal palliative care
One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).
Haug S; Dye A; Durrani S
Frontiers in Pediatrics
2020
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).
<a href="http://doi.org/10.3389/fped.2020.574180" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574180</a>
Neonatal palliative care: perception differences between providers
communication; healthcare providers; neonatal intensive care unit; neonatal palliative care; NICU; palliative care; pediatrics; perception differences
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive survey mixed methods study. Email surveys were sent to social workers, pharmacists, dieticians, nurses, respiratory therapists, fellows and faculty in November of 2018. Total number of respondents was 181 with a response rate of 56%. Result(s): Statistically significant differences between faculty and non-faculty were found in regards to benefits of early PC consults, need for automatic consults for certain diagnosis and the frequency of PC consults. Conclusion(s): The perception of PC differs greatly between faculty and non-faculty. Educational initiatives surrounding PC and communication along with instituting automatic consults for certain diagnosis could help bridge this difference in perception and educational gap. Copyright © 2020, The Author(s), under exclusive licence to Springer Nature America, Inc.
Niehaus J Z; Palmer M M; Slaven J; Hatton A; Scanlon C; Hill A B
Journal of Perinatology
2020
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<a href="http://doi.org/10.1038/s41372-020-0714-1" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0714-1</a>
Close to Home: Perinatal Palliative Care in a Community Hospital
community palliative care; community perinatal hospice; life-limiting perinatal diagnosis; neonatal palliative care; perinatal hospice; perinatal palliative care; prenatal testing
BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child. PURPOSE: This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community. METHODS/SEARCH STRATEGY: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia. IMPLICATIONS FOR PRACTICE: Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families. IMPLICATIONS FOR RESEARCH: Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.
Ziegler T R; Kuebelbeck A
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/anc.0000000000000732" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000732</a>
Perceptions of neonatal palliative care: Similarities and differences between medical and nursing staff in a level IV neonatal intensive care unit
attitudes toward palliative care; barriers to palliative care; facilitators of palliative care; neonatal intensive care unit; neonatal palliative care; NICU; perceptions
Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort. Objective(s): To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives. Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%. Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions. Result(s): Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics. Conclusion(s): Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Kyc S J; Bruno C J; Shabanova V; Montgomery A M
Journal of Palliative Medicine
2020
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<a href="http://doi.org/10.1089/jpm.2019.0523" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0523</a>
Conceptually Redefining Neonatal Palliative Care
comfort care; neonatal end-of-life care; neonatal palliative care; perinatal palliative care
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach. METHOD(S): Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken. FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management. IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
Kain V J; Chin S D
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/ANC.0000000000000731" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000731</a>
Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital
consultation; infants; neonatal palliative care; palliative care
BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. METHODS: This was a retrospective medical record review. FINDINGS: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. IMPLICATIONS FOR PRACTICE: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. IMPLICATIONS FOR RESEARCH: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.
McLaughlin S N; Song M K; Hertzberg V; Piazza A J
Advances in Neonatal Care
2020
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).
<a href="http://doi.org/10.1097/anc.0000000000000698" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000698</a>
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
Adult; Age Factors; Clinical Competence; confidence and comfort; Cross-Sectional Studies; Educational Status; Female; Humans; Male; Marital Status; neonatal palliative care; neonatal professional; neonatology; Palliative Care; Self Concept; Social Support; Surveys and Questionnaires; Taiwan
BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This study evaluated the factors associated with the confidence and comfort levels of neonatal clinicians providing neonatal palliative care. METHODS: A cross-sectional survey and questionnaire were used to investigate the confidence and comfort levels of neonatal clinicians regarding neonatal palliative care. RESULTS: Research subjects included 154 neonatal clinicians. Clinicians' confidence in providing neonatal palliative care was significantly impacted by age, marital status, years of professional experience (p < 0.05), and prior palliative care training. Comfort levels were significantly impacted by educational degree, marital status, and years of working experience. Clinicians with a supportive workplace reported increases in both professional confidence (r = 0.286, p < 0.001) and personal comfort (r = 0.521, p < 0.001). CONCLUSION: Research reveals the importance of neonatal palliative education and suggests further development of interdisciplinary neonatal palliative care teams to improve clinicians' professional confidence and personal comfort.
Peng N H; Liu H F; Wang T M; Chang Y C; Lee H Y; Liang H F
Journal of Palliative Medicine
2018
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).
<a href="http://doi.org/10.1089/jpm.2018.0102" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0102</a>
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
fetal anomaly; instrument development; neonatal palliative care; pediatric palliative care; perinatal hospice; perinatal palliative care
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.
Stenekes S; Penner JL; Harlos M; Proulx M; Shepherd E; Liben S; Thompson G; MacConnell G; Gregoire M; Siden Harold Hal
Journal of palliative care
2018
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).
<a href="http://doi.org/10.1177/0825859718790627" target="_blank" rel="noreferrer noopener">10.1177/0825859718790627</a>
Barriers of palliative care in neonatal intensive care units: Attitude of neonatal nurses in southeast Iran
2017; Attitude; Barriers; Neonatal Intensive Care; Neonatal Intensive Care Units; Neonatal Nurses; Neonatal Palliative Care; Nurses; Nursing; Palliative Care; Southeast Iran
Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses’ attitude toward barriers in providing NPC in Southeast Iran. Method: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. Results: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of 'insufficient resources' (3.42 ± 0.65) and 'inappropriate personal and social attitudes' (2.33 ± 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of 'inappropriate organizational culture' and/or 'inadequate nursing proficiency.' Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). Conclusion: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants’ EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Azzizadeh FM; Banazadeh M; Ahmadi JS; Razban F
American Journal Of Hospice & Palliative Medicine
2017
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).
<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>