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>
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
concept analysis; dimensional; Neonates; nursing; palliative care
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clinical practice. Using dimensional analysis methodology, 46 English language papers from 2001-2018 were analyzed. The coding of the literature for the perspective, context, conditions, process, and consequences of the concept was completed. Five dimensions informed the conceptualization of this concept and interrelationships among their themes/sub-themes were presented in the matrix named, "improving quality of life and death". Within the family-centered care perspective and under different conditions/contexts through the processes of neonate's comfort and providing holistic care, the consequences of this care were improving quality of life/a good death. Family-centered care was the fundamental dimension and essential to achieving the consequences. The other dimensions of context, conditions, and processes were also affected by the family's needs, preferences, culture, and expectations. This analysis reinforces that neonatal palliative care is a multidimensional concept. To provide the standard of neonatal palliative care an integrated plan to get together many stakeholders including community, parents, clinical staff, policymakers, insurance authorities, health care systems, and education system is required. All NICUs should have neonatal palliative care-trained nurses and protocols with a family-centered care approach to focus on the quality of life of neonates with life-threatening conditions from diagnosis of disease to death. Regular training and educational courses on neonatal palliative care and family-centered care principles can make nurses more sensitive to their advocacy role.
Banazadeh M; Rafii F
Comprehensive Child and Adolescent Nursing
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/10.1080/24694193.2020.1783029" target="_blank" rel="noreferrer noopener">10.1080/24694193.2020.1783029</a>
Spiritual care of the child with cancer at the end of life: a concept analysis
Child; cancer; spiritual care; dying; concept analysis; nurses/midwives/nursing
Aim The aim of this paper is to report an analysis of the concept of spiritual care of a child with cancer at the end of life. Background Spirituality is a vital dimension of a child's experience at the end of life; providing comfort; support; and a sense of connection. Spiritual care is paramount to address the substantial spiritual distress that may develop. Design Rodgers' method of evolutionary concept analysis guided the review process. Data sources The literature search was not limited by start date and literature through the end of 2012 was included. English, peer-reviewed texts in the databases CINAHL, ATLA and PubMed were included. Methods Critical analysis of the literature identified surrogate terms, related concepts, attributes, antecedents and consequences. Results The analysis identified six attributes: assessing spiritual needs; assisting the child to express feelings; guiding the child in strengthening relationships; helping the child to be remembered; assisting the child to find meaning; and aiding the child to find hope. Antecedents include existential questions and spiritual distress. Consequences include a peaceful death, spiritual growth, a relationship of trust and enhanced end-of-life care. Conclusion Spiritual care is a vital aspect of holistic nursing care; however, gaps in knowledge and practice prevent children from receiving adequate spiritual care at the end of life. Nurses would benefit from increased awareness, skills and knowledge about spiritual care. Research is needed to identify interventions that exert the greatest effect on patient care outcomes.
2013
Petersen CL
Journal Of Advanced Nursing
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/10.1111/jan.12257" target="_blank" rel="noreferrer">10.1111/jan.12257</a>
A Concept Analysis In Relation To The Cultural Competency Of The Palliative Care Workforce In Meeting The Needs Of Young People From South Asian Cultures
Concept Analysis; Cultural Competency; Life-limited Young People; Palliative Care; Palliative Care Workforce; South Asian Cultures
OBJECTIVE: Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian cultures. METHOD: Using keywords, we searched the online databases MEDLINE, CINAHL, ScienceDirect, and PubMed from January of 1990 through to December of 2016. Some 1543 articles were retrieved, and inclusion and exclusion criteria were applied. A total of 38 papers were included in the concept analysis. The data were analyzed using Coad's (2002) adapted framework based on Rodgers's (1989) evolutionary concept analysis, focusing on the attributes, antecedents, consequences, and related terms in relation to culturally competent care. A model case of culturally competent care was also constructed. RESULTS: The literature provides evidence that the concept of culturally competent care is a complex one, which is often expressed ambiguously. In addition, there is a paucity of research that involves service users as experts in defining their own needs and assessing their experiences related to cultural care. SIGNIFICANCE OF RESULTS: Cultural care should be integral to holistic patient care, irrespective of a person's race or ethnicity. There is an urgent need to involve young BAME patients with palliative care needs and their families in the development of a robust tool to assess cultural competency in clinical practice.
Brown E; Franklin A; Coad J
Palliative & Supportive 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).
10.1017/S1478951517000207