Academic literature on the topic 'Children with disabilities Care Moral and ethical aspects'

Background: Pediatric nurses experience ethically difficult situations in their everyday work. Several studies have been conducted to reveal ethical issues among pediatric nurses; we do not think their ethical difficulties have been explored sufficiently from their own perspective. Objectives: This study aimed to explore the ethical difficulties faced by pediatric nurses during bedside care for hospitalized children. Methods: A phenomenological approach was used to collect and analyze interview data from 14 female pediatric nurses in South Korea. Ethical considerations: Ethical review was obtained from an ethics committee. The participants were informed about the aim of the study, and voluntary participation, anonymous response, and confidentiality were explained to them. Findings: Three themes emerged from the analysis: ethical numbness in a task-oriented context, negative feelings toward family caregivers, and difficulty in expressing oneself in an authoritative climate. Conclusion and implications: We need to develop strategies to manage ethical difficulties at an institutional level. Furthermore, it is important that pediatric nurses have the opportunity to communicate with fellow nurses and other medical staff regarding ethical difficulties. In addition, cultivation of pediatric nurses’ moral, ethical, and philosophical thinking patterns requires the immediate provision of continuous education in nursing ethics at the site of clinical nursing, time to discuss ethical difficulties, and other supportive measures. Findings indicated that, to provide high-quality patient-centered care, we should enhance nurses’ ethical sensitivity and autonomy and improve the ethical climate in hospitals.

In recent years, increasing pressures have been brought to bear upon nurses and others more closely to inform, involve and support the rights of parents or guardians when crucial ‘life and death’ ethical decisions are made on behalf of their seriously ill child. Such decisions can be very painful for all involved, and may easily become deadlocked when there is an apparent clash of moral ideals or values between the medical team and the parents or guardians. This article examines a growing number of such cases in New Zealand and analyses the moral parameters, processes, outcomes and ethical responses that must be considered when life and death ethical decisions involving children are made. The article concludes with a recommendation that nurses should be recognized as perhaps the most suitable of all health care personnel when careful mediation is needed to produce an acceptable moral outcome in difficult ethical situations.

Ethical issues about children’s rights in respect of matters concerning resource allocation or treatment opportunities are now a matter for public consumption and concern. Alongside this exists a long-frustrated desire by children’s nurses to promote children’s health. Long-held assumptions about the legal and moral status of children within the health care system in this country are now rightly scrutinized and challenged. Those of us who claim to represent children now possess an opportunity to exploit public attention for the benefit of these children. This article will explore selected major relevant legal and moral concepts that relate to children with the aim of making transparent some of the important and often confusing information available. It is anticipated that debates about the legal and ethical status of children may be stimulated and fuelled from the following discussion. It is strongly recommended that entering into dialogue with families and children about their perceived needs will go a long way towards advancing thoughtful nursing care of individual children, their families and the general population.

Background: Currently preterm births are the leading causes of newborn deaths and newborn mortality in developed countries. Infants born prematurely remain vulnerable to many acute complications and long-term disabilities. There is a growing concern surrounding the moral and ethical implications of the complex and technological care being provided to extremely low birth weight infants in neonatal intensive care units in the developed nations. Research purpose: The purpose of this study was to describe the ethical and moral issues that neonatal intensive care nurses experience when caring for low birth weight preterm infants and their families. Research design: A phenomenological method design was used to describe the lived experiences of nurses with ethical and moral issues encountered in the neonatal intensive care unit. One-on-one, semi-structured interviews using open-ended questions were used to gather data from the participants. Research participants: The setting for this study was a 97-bed neonatal intensive care. A total of 16 female nurses were interviewed. Ethical considerations: Approval to conduct the research study was obtained from the institutional review board of the hospital where the study was conducted. Formal signed consent was obtained from each participant. To ensure confidentiality, each participant was asked to choose a confederate name to be used in the interview and the transcriptions. Findings: The thematic analysis identified five recurring themes: (a) at the edge of viability, (b) infant pain and discomfort, (c) crucial decisions, (d) communicating with parents, and (e) letting go. Conclusion: Neonatal intensive care unit nurses indicated that they often had challenges to their own sense of morality as they struggled to protect the infant from pain and unnecessary discomfort, provide care to an infant and their family whom they thought was faced with a lifetime of challenges and poor health, accepting decisions made by parents, and feeling as if parents were not adequately informed about outcomes.

Background: Providing oncological care to children is demanding and ethical issues concerning what is best for the child can contribute to moral distress. Objectives: To explore healthcare professionals’ experiences of situations that generate moral distress in Swedish paediatric oncology. Research design: In this national study, data collection was conducted using the Swedish Moral Distress Scale-Revised. The data analysis included descriptive statistics and non-parametric analysis of differences between groups. Participants and research context: Healthcare professionals at all paediatric oncology centres in Sweden were invited to participate. A total of 278 healthcare professionals participated. The response rate was 89%. Ethical considerations: In its advisory statement, the Regional Ethical Review Board decided that the study was of such a nature that the legislation concerning ethical reviews was not applicable. All participants received written information about the aim of the study and confidentiality. Participants demonstrated their consent by returning the survey. Findings: The two situations with the highest moral distress scores concerned lack of competence and continuity of personnel. All professional groups reported high levels of disturbance. Nurses rated significantly higher frequencies and higher total Moral Distress Scale scores compared to medical doctors and nursing assistants. Discussion: Lack of competence and continuity, as the two most morally distressing situations, confirms the findings of studies from other countries, where inadequate staffing was reported as being among the top five morally distressing situations. The levels of total Moral Distress Scale scores were more similar to those reported in intensive care units than in other paediatric care settings. Conclusion: The two most morally distressing situations, lack of competence and continuity, are both organisational in nature. Thus, clinical ethics support services need to be combined with organisational improvements in order to reduce moral distress, thereby maintaining job satisfaction, preventing a high turnover of staff and ensuring the quality of care.

Honesty is essential for the care of seriously ill and dying patients. The current study aimed to describe how nurses experience honesty in their work with patients receiving palliative care at home. The interviews in this phenomenological study were conducted with 16 nurses working with children and adults in palliative home-based care. Three categories emerged from analyses of the interviews: the meaning of honesty, the reason for being honest and, finally, moral conflict when dealing with honesty. The essence of these descriptions was that honesty is seen as a virtue, a good quality that a nurse should have. The nurses’ ethical standpoint was shown in the moral character they show in their work and in their intention to do good. This study could help nurses to identify different ways of looking at honesty to promote more consciousness and openness in ethical discussions between colleagues and other staff members.

Background: Metaphors are often used within the context of ethics and healthcare but have hardly been explored in relation to moral reasoning. Objective: To describe a central set of metaphors in one case and to explore their contribution to moral reasoning. Method: Semi-structured interviews were conducted with 16 parents of a child suffering from the neurodegenerative disease CLN3. The interviews were recorded, transcribed, and metaphors were analyzed. The researchers wrote memos and discussed about their analyses until they reached consensus. Ethical considerations: Participants gave oral and written consent and their confidentiality and anonymity were respected. Findings: A central set of metaphors referred to the semantic field of the hands and arms and consisted of two central metaphors that existed in a dialectical relationship: grasping versus letting go. Participants used these metaphors to describe their child’s experiences, who had to “let go” of abilities, while “clinging” to structures and the relationship with their parent(s). They also used it to describe their own experiences: participants tried to “grab” the good moments with their child and had to “let go” of their child when (s)he approached death. Participants, in addition, “held” onto caring for their child while being confronted with the necessity to “let go” of this care, leaving it to professional caregivers. Discussion: The ethical analysis of the findings shows that thinking in terms of the dialectical relationship between “grasping” and “letting go” helps professional caregivers to critically think about images of good care for children with CLN3. It also helps them to bear witness to the vulnerable, dependent, and embodied nature of the moral self of children with CLN3 and their parents. Conclusion: Metaphorical reasoning may support the inclusion of marginalized perspectives in moral reasoning. Future studies should further explore the contribution of metaphorical reasoning to moral reasoning in other cases.

Background: Pediatric nursing care involves many significant ethical challenges. Although nurses are broadly recognized as professionals with relevant knowledge about children and families, little is known about how nurses experience ethical concerns in their everyday practice. Objective: The objective of this study was to better understand the moral experiences and related moral distress experiences of nurses working in pediatric settings in Brazil. Design: Interpretative phenomenological study conducted through narrative interviews. Participants and research context: Nine nurses working in three pediatric settings of a teaching hospital in a city of Southern Brazil. Ethical considerations: The study was approved by the Research Ethics Committee of the research site, and research ethics principles were respected throughout the study. Findings: This investigation illuminated a broader dimension of nurses’ moral distress, which was recognized as moral experience. In advancing our understanding of nurses’ moral experiences, engagement was identified as a central phenomenon that is present in the understandings and actions of nurses within their relationships in their daily practice and lived experiences. Three themes were described with regard to nurses’ relationships and their moral experiences: (a) relationship with the healthcare team; (b) relationship with the family; and (c) relationship with the child. Discussion: The findings of this study are congruent with emerging health literature that demonstrated the focus on moral distress as limiting for bioethical inquiry. Moreover, it is important to better understand and recognize nurses’ relational environment and engagements to advance understandings of the ethical dimensions of pediatric nursing practice. Conclusion: This study provides a better understanding on how engagement affects moral experiences, demonstrating how nurses can experience distress but also satisfaction, gratification, rewarding feelings, and a sense of responsibility for the care they provide.

When conducting ethics research with children in health care settings, studying children’s experiences is essential, but so is the context in which these experiences happen and their meaning. Using Charles Taylor’s hermeneutic philosophy, we developed a methodological framework for health ethics research with children that bridges key aspects of ethnography, participatory research, and hermeneutics. This qualitative framework has the potential to offer rich data and discussions related to children as well as family members and health care workers’ moral experiences in specific health care settings, while examining the institutional norms, structures, and practices and how they interrelate with experiences. Through a participatory hermeneutic ethnographic study, important ethical issues can be highlighted and examined in light of social/local imaginaries and horizons of significance, to address some of the ethical concerns that can be present in a specific health care setting.

In this article I argue for an interpretive approach to bioethics with critically ill children. I begin by highlighting the dominant Anglo-American bioethical framework that defines standards for ethical care in critically ill children and then outline a critique of this framework. Drawing predominantly on the ideas of Charles Taylor, Michael Walzer and Richard Zaner, I call for a reconception of bioethics and propose an interpretive ‘thick’ framework that is centred on culture and context. Finally, I illustrate this interpretive approach through a comparative study of two cases in pediatric intensive care: the narratives of Marc and Larry. These case studies reveal that ethical dilemmas in pediatric critical care can be traced to relational tensions over respect, trust and power rooted in the disparity of moral horizons among the persons involved.

The dramatic improvement of neonatal intensive care has produced vexing ethical and legal questions. One of the most striking issues is to determine whether the most defective neonates should be provided with intensive care and to what extent they should be treated. This thesis demonstrates that an attempt to answer this question and an analysis of the demands and limitations of a duty to treat defective neonates cannot properly occur without first considering the legal concerns and ethical issues surrounding the notion of "person". The author examines germane ethical theories and North-American jurisprudence to see what approaches and standards commentators and courts have adopted in this respect. This thesis demonstrates that in the context of the cessation or non-initiation of intensive care, the legal and moral status of very defective neonates remain ambiguous. In particular, the author suggests that a legal best interests analysis that includes quality of life considerations may actually involve the use of criteria similar to those supported by the authors of the controversial moral theories that negate the personhood of seriously handicapped newborns. The author ultimately concludes that a clear divide between the legal definition of the "person" and the moral and social perceptions of that term is misleading.

Thesis (MEdPsych))--University of Stellenbosch, 2010.
Bibliography
ENGLISH ABSTRACT: Teachers have been strategically positioned to mediate information that might lead to increased HIV and AIDS knowledge and preventative measures among school-based youth. This study attempted to understand such teachers' knowledge and attitudes within a particular social context using the Bio-ecological systems model of Bronfenbrenner. The systems model provided the framework for understanding teachers' knowledge and attitudes of HIV and AIDS given their choices in terms of background, knowledge, attitude, and their links with multiple systems. The study was conducted within the qualitative paradigm. Semi-structured interviews were conducted with thirteen intermediate phase primary school teachers from seven primary schools in Phillipi, Cape Town. This study showed that teachers were aware of being part of complex systems. They expressed their difficulties with teaching HIV and AIDS education in the classroom, particularly conditioned by cultural taboos. This study further showed that teachers. interactions, particularly with people living with HIV and AIDS, changed their knowledge of, and attitudes towards, HIV and AIDS and the teaching thereof. It also pointed to the dissonance between teachers' beliefs and behaviours in serving people living with HIV and AIDS. For some teachers, religious beliefs provided the means with which to deal with the HIV and AIDS pandemic. For others, particularly some female teachers, unequal gendered roles and expectations with regard to sex and sexuality in their communities had a direct impact on the spread of HIV and AIDS and safe-sex practices (knowledge) in their communities. Finally, teachers were actively and critically engaged with systems that impact upon them; particularly, the Macrosystem of the Education Department (in this case, the Western Cape), and the Microsystems of the societies and communities within which their schools were located. In summary, the study showed that a contextual, system-related approach to teachers in the classroom highlighted how they related to HIV and AIDS. Such complex, and inter-connected relations cannot be ignored by teachers, educators, policy-makers, material developers and trainers. More studies will give us a better model of the challenges and opportunities facing those who are helping stem the tide of the pandemic.
AFRIKAANSE OPSOMMING: Onderwysers is in 'n strategiese posisie om inligting oor te dra aan jong leerders wat sal lei tot meer kennis van MIV en ook sal voorkom dat dit versprei. In hierdie studie is onderneem om onderwysers se kennis en denkwyse in 'n besondere sosiale verband te verstaan, deur gebruik te maak van die Bio-ekologiese stelsels-model van Bronfenbrenner. Die stelsels-model voorsien die raamwerk om onderwysers se kennis en houdings van MIV/VIGS te verstaan, aangesien hulle keuses maak in terme van hulle agtergrond, kennis, denkwyse en hulle kontak met meervoudige stelsels. Hierdie studie is uitgevoer in die kwalitatiewe paradigma. Halfgestruktureerde onderhoude is uitgevoer met dertien intermediêre fase primêre-skool onderwysers by sewe primêre skole in Philippi, Kaapstad. Hierdie studie het bewys dat onderwysers bewus is daarvan dat hulle deel vorm van ingewikkelde stelsels. Hulle het te kenne gegee dat hulle dit moeilik vind om MIV/VIGS opvoeding te gee in die klaskamer, veral as gevolg van kulturele taboes. Hierdie studie het ook bewys dat onderwysers se interaksie, veral met mense wat met MIV/VIGS saamleef, hulle kennis van en houding teenoor MIV/VIGS, en die onderrig daarvan, verander het. Dit het ook die verskil tussen onderwysers se godsdienstige oortuigings en houdings uitgewys wanneer hulle in kontak kom met mense wat met MIV/VIGS saamleef. Sommige onderwysers het hulle godsdienstige oortuigings gebruik wanneer hulle met die MIV/VIGS pandemie gewerk het. Sommige onderwyseresse veral, het gevind dat ongelyke geslagsrolle en verwagtinge ten opsigte van seks en seksualiteit in hulle gemeenskappe 'n direkte invloed gehad het op die verspreiding van MIV/VIGS en veilige sekspraktyke in hulle gemeenskappe. Onderwysers was aktief betrokke by stelsels wat 'n invloed op hulle gehad het, veral die Makrostelsel van die Onderwysdepartement (in hierdie geval die Wes-Kaap), en die Mikrostelsels van die samelewings en gemeenskappe waar die skole hulself bevind. In opsomming, het hierdie studie bewys hoedat 'n kontekstuele, stelsel- verwante benadering tot onderwysers in die klaskamer in verhouding staan met kennis en houdings teenoor MIV/VIGS. Sulke komplekse en onderlinge verhoudings kan nie deur onderwysers, beleidmakers, materiële ontwikkelaars en afrigters geïgnoreer word nie. Verdere navorsing en studies sal vir ons 'n meer effektiewe model bied van die uitdagings en geleenthede wat onderwysers in die gesig staar en wat sal help om die pandemie hok te slaan.

The goal of this work is to explore the role of theological bioethics in influencing the formulation of existing or proposed policies dealing with treatment decisions for seriously disabled newborns in our pluralist society. Part I of the paper attempts to determine as precisely as possible what bioethics is, particularly Judeo-Christian bioethics. After comparing the latter to the Hippocratic tradition and to secular bioethics, the distinctive characteristics and potential contribution of theological bioethics are identified. The policies then examined in Part II are: medical policies formulated by physicians, bioethical policies proposed by bioethicists and legal policies enunciated by court decisions and legal writers. In each case they are evaluated in the light of a number of specific ethical tests proposed as central to Judeo-Christian bioethics. The paper concludes that Judeo-Christian bioethics has not been particularly influential in our pluralist society. A final section proposes a model treatment policy.