Exploring Parent Experiences With Early Palliative Care Practices in the NICU
Palliative Care; NICU; parent experiences
BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress. PURPOSE: The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress. METHODS: Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample. RESULTS: Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. IMPLICATIONS FOR PRACTICE AND RESEARCH: These findings highlight key areas for practice improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.
Quinn M; Gephart S; Crist J
Advances in Neonatal Care
2024
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.0000000000001137" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001137</a>
Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
concept analysis; neonatal intensive care unit; newborn intensive care; palliative therapy; uncertainty; article; complication; confusion; diagnosis; drug administration; genetic disorder; genetic screening; human; infant; Infant Newborn; neonatal nurse; nurse; Palliative Care; prognosis
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. Purpose: To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Methods: Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Results: Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. Implications: This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss. Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.
Lenington K; Dudding KM; Fazeli PL; Dick T; Patrician P
Advances in Neonatal Care
2024
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.0000000000001143" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001143</a>
Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
terminal care; human; newborn; psychology; emotion; neonatal intensive care unit; infant; neonatal nurse; East Asian
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. Methods: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. Results: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. Implications for practice and research: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates.
Tong-Hui S; Qi L; Xiao-Li R; Guo-Qin Y; Li-Ping W; Lin W
Advances in Neonatal Care
2023
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.0000000000001113" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001113</a>
Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Infant, Newborn; Child; Bereavement; Intensive Care Units, Neonatal; Interpersonal Relations; Attitude of Health Personnel; Qualitative Studies; Human; Support, Psychosocial; Music Therapy; Heart Rate; Telephone; Parental Attitudes; Memory; Thematic Analysis; Parental Role; Caregiver Attitudes; Semi-Structured Interview; In Infancy and Childhood; Attitude to Medical Treatment; Extended Family; Singing
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study evaluates the HeartSong music therapy intervention from parent and staff perspectives. Methods: A qualitative study assessing inclusion of HeartSong for family neonatal intensive care unit (NICU) care surveyed 10 professional caregivers comprising medical and psychosocial NICU teams anonymously reflecting their impressions of the intervention. Digital survey of parents/guardians contacted through semistructured phone interviews relayed impressions of recordings: subsequent setup, Song of Kin selection, and use of HeartSong, including thoughts/feelings about it as an intervention. Results: Professional and personal caregivers valued the HeartSong intervention for bereavement support, family support, including parental, extended family/infant support, and to enhance bonding. Emergent themes: memory-making, connectedness/closeness, support of parent role, processing mental health needs of stressful NICU days, and subsequent plans for lifelong HeartSong use. Therapeutic experience was named as a crucial intervention aspect and participants recommended the HeartSong as a viable, accessible NICU intervention. Implications for practice and research: HeartSong's use showed efficacy as a clinical NICU music therapy intervention for families of critically ill and extremely preterm infants, when provided by trained, specialized, board-certified music therapists. Future research focusing on HeartSong in other NICU populations might benefit infants with cardiac disease, parental stress, and anxiety attending to parent-infant bonding. Costs and time benefits related to investment are needed before implementation is considered.
van Dokkum NH; Fagan LJ; Cullen M; Loewy JV
Advances in Neonatal Care
2023
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.0000000000001068" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001068</a>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho ÁM; Fernández MIM; Jiménez-López FR; Granero-Molina J; Hernández-Padilla JM; Hernández SE; Fernández-Sola C
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.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
Neonatal intensive care; Newborn Infant; Bereavement; Delivery of Health Care; Infant; Needs Assessment; Palliative Care; Parents; Personal Satisfaction; Prospective Studies; Terminal Care
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA
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.0000000000000677" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000677</a>
Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices
Counseling/ethics/methods; Shared Decision Making; Female; Humans; Infant Newborn; Palliative Care/ethics/methods/psychology; Parents/psychology; Pregnancy; Prenatal Diagnosis/methods/psychology; Psychosocial Support Systems; Trisomy 13 Syndrome/diagnosis/psychology/therapy; Trisomy 18 Syndrome/diagnosis/psychology/therapy
BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling. METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making. FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant. IMPLICATIONS FOR PRACTICE: Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.
Leuthner SR; Acharya K
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.0000000000000704" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000704</a>
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
end of life; neonatal death; neonates; palliative care; program development; rooming-in
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opportunity to spend as much time as possible with their infant in order to make memories and parent their infant. PURPOSE: The objective of the Mother Baby Comfort Care Pathway is to implement a program of family-centered care with logistically flexible care delivery, allowing mothers and their families to share as normal a postpartum care experience as possible with a focus on quality of life, memory making, and time spent together. METHODS: The program was developed with the nucleus of care coordination and provision on the Mother Baby Unit (postpartum unit), with involvement from the labor and delivery room, NICU, and other units as necessary to provide the postpartum mother, her dying infant, as well as possible additional siblings (in the case of multiple gestation), postpartum care while rooming-in. The program was rolled out with training workshops for postpartum nurses. FINDINGS: Nurses who took part in the workshops and the patient care program rated both highly. IMPLICATIONS FOR PRACTICE: The Mother Baby Comfort Care Pathway aims to offer a framework for providing multidisciplinary family-centered comfort care to newborns during the postpartum period in a compassionate, evidence-based, and individualized manner in order to maximize quality time together for families with a dying infant.
Czynski AJ; Souza M; Lechner BE
Advances in Neonatal Care
2021
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<a href="http://doi.org/10.1097/anc.0000000000000838" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000838</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
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.0000000000000732" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000732</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
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.0000000000000731" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000731</a>
Implementation of a Perinatal Hospice Program
antenatal hospice; life-limiting; neonatal; neonatal intensive care unit; NICU; perinatal hospice; perinatal palliative care
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHOD(S): The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULT(S): The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.
Falke M; Rubarth L B
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.0000000000000755" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000755</a>
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Quinn M; Weiss A B; Crist J D; Fortney C A
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.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</a>
Preparing Nurses for Palliative Care in the NICU
End-of-Life Nursing Education Consortium (ELNEC); neonatal intensive care unit; nurses; nursing; palliative care; pediatric palliative care
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings.Methods: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum.Findings/results: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families.Implications For Research: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care.Implications For Practice: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change.
Ferrell B; Thaxton C A; Murphy H; Fortney C A
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.0000000000000705" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000705</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>
Parents' Experiences About Support Following Stillbirth and Neonatal Death
neonatal death; parent experiences; parental grief; professional support; social support; stillbirth
BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support.
Camacho Ávila M; Fernández Medina I M; Jiménez-López F R; Granero-Molina J; Hernández-Padilla J M; Hernández Sánchez E; Fernández-Sola C
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.0000000000000703" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000703</a>
The relationship between providing neonatal palliative care and nurses' moral distress: an integrative review
Nursing Staff; neonatal intensive care; Burnout; moral distress; review
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of this integrative review was to determine the relationship between the provision of palliative care in a NICU and nurses' moral distress. The evidence reviewed supports that moral distress does occur with the provision of neonatal palliative care. An interdisciplinary care team, an established protocol, and educational interventions may decrease moral distress in nurses providing end-of-life care to infants in the NICU.
2014-10
Cavinder C
Advances In Neonatal Care
2014
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).
Journal Article
<a href="http://doi.org/10.1097/ANC.0000000000000100" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000100</a>
Medical record documentation and symptom management at the end of life in the neonatal intensive care unit
In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end of life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure that the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments used to manage those symptoms as documented in the medical record during the last 24 hours of life. The sample included 20 neonates who died at a large children's hospital. This was an exploratory, descriptive study. Descriptive data, such as diagnosis, ongoing therapy at time of treatment withdrawal or withholding, pharmacologic and nonpharmacologic interventions associated with treatment withdrawal, time of treatment withdrawal and death, age at time of death, signs and symptoms exhibited during EOL care, and pain scores, were abstracted from the infant's medical record. Inadequate documentation in the medical record resulted in missing data that made it not possible to fully explore aspects of symptom management during the last 24 hours of life; however, some important results were found. This study showed a difference in the way neonates approach the EOL period. Other findings were that most infants in the study received pain medication, even though pain scores were infrequently documented and drug dosages varied across infants. Finally, documentation of nonpharmacologic interventions utilized at the EOL was also lacking.
2014-10
Fortney CA; Steward DK
Advances In Neonatal Care
2014
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).
Journal Article
Neonatal palliative care: developing consensus among neonatologists using the delphi technique in portugal
Delphi Technique; decision making; infant; Pain Management; new
Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition).
2013-12
Mendes JCC; Justo da Silva L
Advances In Neonatal Care
2013
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).
Journal Article
<a href="http://doi.org/10.1097/ANC.0000000000000037" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000037</a>
Implementing a palliative care program in a newborn intensive care unit
PedPal Lit; Humans Infant; neonatal intensive care; Neonatal/methods Models; Newborn Intensive Care Units; TheoreticalPalliative Care Program Development
In the United States the majority of infants who die in the first 27 days end their lives in the neonatal intensive care unit (NICU). This article describes the implementation of a NICU-based team approach to providing end-of-life care to dying infants and their families. Timeline, activities, and resultant improvements in family care and staff support are described. Moral distress among nurses caring for dying infants is discussed. A case study, neonatal palliative care policy, palliative care pathway, and lactation suppression guidelines for mothers following infant death are presented. More research is needed to verify improvements in neonatal, family, and staff support with palliative care programs in the NICU.
2006
Gale G; Brooks A
Advances In Neonatal Care
2006
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2005.11.004" target="_blank" rel="noreferrer">10.1016/j.adnc.2005.11.004</a>
Sometimes a time to be born is also a time to die
PedPal Lit; Newborn Intensive Care Units; Fetal Viability Humans Infant Mortality Infant; Neonatal/ethicsIntensive Care; Neonatal/ethics/psychologyPalliative Care/ethics/psychology
2006
Buus-Frank ME
Advances In Neonatal Care
2006
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2005.12.001" target="_blank" rel="noreferrer">10.1016/j.adnc.2005.12.001</a>
Effective strategies to prepare infants and families for home tracheostomy care
Adult; Nursing; PedPal Lit; an overview of the impact of the tracheostomy on normal development; and granulation tissue formation are discussed. Humidification is critical for the infant with a tracheostomy and humidification delivery methods are discussed. Further; bleeding; Family Health Education; Home Nursing/education Humans Infant; infection; mucus plugging; Neonatal Nursing Tracheostomy/education/instrumentation/; such as swallowing and language development; suctioning
2004
Fiske E
Advances In Neonatal Care
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2003.11.011" target="_blank" rel="noreferrer">10.1016/j.adnc.2003.11.011</a>
Use of the parenting stress index in mothers of preterm infants
U.S. Gov't; PedPal Lit; Adult Female Humans Infant; future research should examine missing items more closely.; however; Newborn Infant; Non-P.H.S. Stress; Premature; Psychological/diagnosis; psychology Male Mother-Child Relations Mothers/; psychology Parenting/; psychology Questionnaires/; standards Reproducibility of Results Research Support
2004
Thomas KA; Renaud MT; Depaul D
Advances In Neonatal Care
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2003.11.012" target="_blank" rel="noreferrer">10.1016/j.adnc.2003.11.012</a>
Discerning differences: gastroesophageal reflux and gastroesophageal reflux disease in infants
Nursing; PedPal Lit; Premature; Diagnosis; Newborn Infant; Diagnosis; Differential Directories Gastroesophageal Reflux; physiology Internet Nursing Assessment%X Gastroesophageal reflux (GER) is a frequently encountered problem in infancy; physiopathology; therapy Health Education Humans Infant Infant
2004
Henry SM
Advances In Neonatal Care
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2004.05.006" target="_blank" rel="noreferrer">10.1016/j.adnc.2004.05.006</a>
Parent's guide to gastroesophageal reflux
PedPal Lit; Newborn; Gastroesophageal Reflux/diagnosis/therapy Humans InfantInfant Care Infant
2004
Gracey K; Henry SM
Advances In Neonatal Care
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2004.05.010" target="_blank" rel="noreferrer">10.1016/j.adnc.2004.05.010</a>
Recognizing the clinical features of Trisomy 13 syndrome
PedPal Lit; Abnormalities; Human; Multiple/genetics/pathology Chromosome Aberrations/embryology Chromosome Disorders/diagnosis/genetics/pathology Chromosomes; Newborn Magnetic Resonance Imaging Pregnancy Prenatal Diagnosis Prognosis Prosencephalon/pathology Syndrome Trisomy/diagnosis/genetics/pathology; Pair 13/genetics Female Holoprosencephaly/diagnosis/etiology/pathology Humans Infant
Recognition of the clinical features of Trisomy 13 syndrome, a common autosomal trisomy, provides the basis for diagnostic testing and counseling of families. This article provides a systematic guide to physical assessment and photographs to enhance recognition of this genetic disorder. The principles of numerical chromosomal abnormalities as related to trisomies are reviewed. An abnormal development of the forebrain, holoprosencephaly, is the most common cranial abnormality in infants with Trisomy 13. The embryology and implications of holoprosencephaly are described. A discussion of antenatal diagnosis of Trisomy 13 and delivery room management is also provided. The diagnosis of Trisomy 13 is confirmed antenatally or after delivery with genetic testing. Prognosis of infants with Trisomy 13 and implications for the infants development are described.
2004
Rios A; Furdon SA; Adams D; Clark DA
Advances In Neonatal Care
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2004.09.008" target="_blank" rel="noreferrer">10.1016/j.adnc.2004.09.008</a>
Transitional Objects to Faciliate Grieving Following Perinatal Loss
BACKGROUND: Parents who experience a perinatal loss often leave the hospital with empty arms and no tangible mementos to validate the parenting experience. Opportunities to create parenting experiences with transitional objects exist following the infant's death. PURPOSE: This article offers suggestions for staff in units where infant loss is possible to best assist parents in optimal grieving through the offering of transitional bereavement objects. METHODS/SEARCH STRATEGY: CINAHL Complete, MEDLINE, and the Cochrane Database of Systematic Reviews were searched using the following key words-perinatal bereavement, grief, perinatal loss, transitional objects, bereavement photography-and the search was limited to 5 years and the English language. FINDINGS/RESULTS: Recommendations exist and are well supported by leading neonatal and perinatal nursing and medicine organizations for the use of transitional objects to facilitate healthy grieving when parents experience perinatal loss. Transitional objects are mementos that validate the meaning of parenthood-even if the physical act of parenting was brief. Nursing and medical staff have significant roles in guiding parents to a healthy state of bereavement and ultimately managing long-term grief. IMPLICATIONS FOR PRACTICE: Transitional objects can be provided by staff that are low-cost or free, such as taking photographs for parents, or they can involve purchased products from perinatal bereavement programs. In the latter case, funding needs are a consideration for budgeting decisions. IMPLICATIONS FOR RESEARCH: Immediately following a loss, parents experience a brief sense of healing after receiving mementos of their infant. However, further research is needed to assess long-term effects of receiving transitional objects following perinatal loss.
LeDuff LD 3rd; Bradshaw WT; Blake SM
Advances In Neonatal Care
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="https://doi.org/10.1097/ANC.0000000000000429" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000429</a>
Multiple Perspectives Of Symptoms And Suffering At End Of Life In The Nicu
Shultz E; Switala M; Winning AM; Keim MC; Baughcum AE; Gerhardt C; Fortney CA
Advances In Neonatal Care
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).
10.1097/anc.0000000000000385
Evidence For Implementation Strategies To Provide Palliative Care In The Neonatal Intensive Care Unit.
Attitude Of Health Personnel; Clinical Protocols; Evidence-based Practice; Hospice And Palliative Care Nursing/education; Humans; Infant Newborn; Intensive Care Units Neonatal; Neonatal Nursing/education; Neonatal Nursing/methods; Palliative Care/methods; Patient Care Team
BACKGROUND:
Palliative care is a holistic framework that is designed to improve quality of life by identifying and treating distressing symptoms of life-threatening or complex conditions. Neonatal palliative care (NPC) has potential benefits for parents, staff, and patients, yet evidence suggests that implementation and utilization of organized NPC services are low.
PURPOSE:
The purpose of this study is to answer the clinical question: In neonatal intensive care, what evidence can be used to guide implementation of palliative care protocols?
SEARCH STRATEGY:
A literature search was conducted using CINAHL (Cumulative Index of Nursing and Allied Health Literature), PubMed, and the Cochrane Library databases. Publications with a focus on neonates, neonatal intensive care unit, and implementation or evaluation of a palliative care protocol, team, or educational intervention were retained.
RESULTS:
The search yielded 17 articles that fit with the following themes: NPC protocols or teams (n = 8), healthcare team needs (n = 3), and barriers to implementation (n = 6). Approaches to NPC implementation were varied, and outcome data were inconsistently reported. Healthcare team members cited a need for education and consistent, ethical delivery of NPC. Common barriers were identified as lack of NPC education, poor communication, and lack of adequate resources such as staff and space.
IMPLICATIONS FOR PRACTICE AND RESEARCH:
Successful team approaches included standardized order sets to initiate NPC, NPC education for staff, and references to NPC guidelines or protocols. Barriers such as lack of interdisciplinary cooperation, lack of appropriate physical space, and lack of education should be addressed during program development. Further research priorities for NPC include seeking parent perceptions, shifting focus from mostly end-of-life to an integrated model, and collecting outcome data with rigor and consistency.
Quinn M; Gephart S
Advances In Neonatal Care
2016
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).
DOI: 10.1097/ANC.0000000000000354
Perceptions Of Palliative Care In The Nicu.
Communication; Continuity Of Patient Care; Emotions; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Interviews As Topic; Male; Mothers/psychology; Palliative Care/utilization; Privacy; Qualitative Research; Social Support
BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care.
METHODS:
In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed.
RESULTS:
Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil.
IMPLICATIONS FOR PRACTICE AND RESEARCH:
Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.
Falck AJ; Moorthy S; Hussey-Gardner B
Advances In Neonatal Care
2016
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).