child; Adolescent; Terminal Care; terminal care; article; female; human; male; validity; Psychometrics; reliability; Iran; human experiment; health care personnel; adolescent; case control study; decision making; nurse manager; psychometry; ethical decision making; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency; exploratory factor analysis
Description
Introduction: Healthcare professionals have a critical role in ethical decision-making around end-of-life care. Properly evaluating the ethical decision-making of health care professionals in end-of-life care requires reliable, tailored, and comprehensive assessments. The current study aimed to translate and assess psychometrically a Persian version of the ethical decision making in end-of-life care scale for Iranian adolescents in the final stages of life. Methods: The present study investigates the methodology and multicenter research. 310 healthcare professionals who treat/care for adolescents at the end of life were selected from 7 cities in Iran. The original version of the end-of-life care decision-making scale was translated into Persian using the forward-backward translation method, and its psychometric properties were evaluated using COSMIN criteria. Results: Exploratory factor analysis revealed that the factor loadings of the items ranged from 0.68 to 0.89, all of which were statistically significant. Furthermore, three factors had eigenvalues greater than 1, accounting for 81.64% of the total variance. Confirmatory factor analysis indicated a proper goodness of fit in the hypothesized factor structure. The internal consistency reliability of the tool was assessed in terms of its homogeneity, yielding a Cronbach's alpha coefficient of 0.93. Conclusion: The Persian version of the End-of-Life Care Decision-Making Scale demonstrates satisfactory validity and reliability among healthcare professionals working with adolescents in the final stages of life. Therefore, nursing managers can utilize this tool to measure and evaluate ethical decision-making in end-of-life care for adolescents in the final stages of life and identify the most appropriate strategies, including educational interventions, to improve ethical decision-making in end-of-life care if necessary.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
child; Decision Making; Germany; female; human; male; Netherlands; systematic review; review; advance care planning; Wales; ethics; care behavior; decision making; thematic analysis; qualitative research; theoretical study; Advance Care Planning; ethical decision making; England; law suit; secondary analysis; Wales; Netherlands; Germany
Description
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. <br/>Objective(s): To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. <br/>Method(s): Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. <br/>Result(s): Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. <br/>Conclusion(s): The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Palliative care in neonatal period and ethical issues
Creator
Turkcapar AF
Identifier
n/a
Publisher
Anestezi Dergisi
Date
2017
Subject
medical ethics; newborn care; palliative therapy; clinical decision making; communication skill; ethical decision making; family attitude; History; Human; morality; Newborn; newborn period; nurse attitude; Perinatal Care; physician attitude; review; Terminal Care
Description
Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited, various barriers to provide palliative care were identified ranging from ethical, moral and attitudinal of physicians, nurses and families. These problems can be solved with providing for the education and training needs of physicians, GPs and nurses in aspects of palliative care, decision making in end-of-life situations, and communication skills.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Description
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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).