scholarly journals Protect us from ourselves: Balancing the parental instinct of saving

2019 ◽  
Vol 27 (5) ◽  
pp. 1282-1296
Author(s):  
Lars Ursin ◽  
Janicke Syltern
Keyword(s):  
Decision Making ◽  
Research Question ◽  
Ethical Challenges ◽  
Prenatal Counselling ◽  
Limit Of Viability ◽  
Regional Committee ◽  
Role Of Parents ◽  
Study Participants ◽  
Medical Research Ethics

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child.

scholarly journals Article 5: The Role of Parents in the Proxy Informed Consent Process in Medical Research involving Children

2020 ◽  
Vol 28 (3) ◽  
pp. 521-546
Author(s):  
Sheila Varadan
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Research ◽  
Well Being ◽  
Ethical Challenges ◽  
Research Setting ◽  
Role Of Parents ◽  
Article 5 ◽  
The Relationship

Abstract Medical research involving child subjects has led to advances in medicine that have dramatically improved the lives, health and well-being of children. Yet, determining when and under what conditions a child should be enrolled in medical research remains an ethically vexing question in research ethics. At the crux of the issue is the free and informed consent of the child participant. A child, who is presumed legally incompetent, or lacks sufficient understanding to exercise autonomous decision-making, will not be able to express free and informed consent in the research setting. Rather than exclude all such children from medical research, a parent (or legal guardian) is designated as a proxy to consent on the child’s behalf. However, the concept of proxy informed consent and the framework for its implementation present practical and ethical challenges for researchers, particularly in navigating the relationship between proxy decision-makers and child subjects in the medical research setting. Article 5 of the uncrc may offer guidance on this point: (1) it places boundaries around how parental authority should be exercised; (2) it offers a model for parent-child decision-making that is participatory, collaborative and linked to the child’s enjoyment of rights under the uncrc; (3) it respects and supports the autonomy of child participants by recognising their evolving capacities to give informed consent. This paper concludes that greater consideration should be given to Article 5 as a complementary framework for researchers engaged in medical research involving children.

PERAN ORANGTUA DAN GURU PEMBIMBING KHUSUS KEPADA ANAK BERKUBUTAHAN KHUSU (SLOW LEARNER) DI SD NEGERI 5 ARCAWINANGUN

2019 ◽  
Vol 2 (1) ◽  
pp. 1-10
Author(s):  
Ujang Khiyarusoleh
Keyword(s):  
Special Needs ◽  
Research Question ◽  
Children With Special Needs ◽  
Special Needs Children ◽  
Slow Learner ◽  
Learning Achievement ◽  
Study Approach ◽  
Role Of Parents ◽  
Guidance Teachers

ABSTRAK Penelitian ini dilatarbelakangi oleh adanya pendidikan yang diperuntukkan bagi semua anak, termasuk anak berkebutuhan khusus. Anak berkebutuhan khusus memiliki karakter yang berbeda-beda, khususnya slow learner dalam pembelajaran mengalami keterlambatan dalam memahami materi. Oleh karena itulah diperlukan peran orangtua dan guru pembimbing khusus untuk membantu memberikan pendidikan yang lebih baik sesuai dengan karakternya. Rumusan masalah penelitian ini yaitu bagaimana peran orangtua dan guru pembimbing khusus kepada slow learner di SD Negeri 5 Arcawinangun. Tujuan penelitian ini yaitu untuk mengetahui peran orangtua dan guru pembimbing khusus kepada slow learner di SD Negeri 5 Arcawinangun. Jenis penelitian ini yaitu penelitian kualitatif dengan pendekatan studi kasus. Teknik pengumpulan data yang digunakan adalah observasi, wawancara, dokumentasi dan triangulasi sumber. Hasil penelitian ini menunjukan bahwa terdapat beberapa peran orangtua yaitu meliputi: orangtua sebagai pendamping utama, orangtua sebagai advokat, orangtua sebagai guru, orangtua sebagai diagnostian. Serta peran guru pembimbing khusus yang meliputi: merancang dan melaksanakan program kekhususan, melakukan identifikasi, asesmen dan menyususn program pembelajaran individual, memodifikasi bahan ajar, melakukan evaluasi, dan membuat laporan program dan perkembangan anak berkebutuhan khusus. Dengan peran peran tersebut, maka sebagian besar anak berkebutuhan khusus di SD Negeri 5 Arcawinangun dapat memberikan layanan dengan baik. Saran untuk penelitian ini orangtua senantiasa mendorong anaknya untuk belajar bersungguh-sungguh di rumah dan di skolah, serta menyediakan fasilitas belajar yang mendukung perkembangan pendidikan bagi anaknya. Kata Kunci: peran guru pembimbing khusus, peran orangtua, slow learner   ABSTRACT Background of the study was the existence of education aimed at all children, including children with special needs. Children with special needs have different characters, thus affecting their learning achievement. Therefore, the role of parents and special tutors were needed to help them improve learning achievement. The research question of this research was how the role of parents and special guidance teachers towards learning achievement of children with special needs in SD Negeri 5 Arcawinangun. The focus of this research was the role of parents and special guidance teachers on learning achievement of children with special needs in grades 1, 2 and 3 of SD Negeri 5 Arcawinangun. The purpose of this study was to determine the role of parents and special guidance teachers on the learning achievement of children with special needs in Arcawinangun 5 Public Elementary School. This type of research was qualitative research with a case study approach. Technique of data collection was observation, interviews, documentation and source triangulation. The results of this research indicated that there were several roles of parents, namely: parents as the main companion, parents as advocates, parents as teachers, parents as diagnostics. As well as the role of a special mentor teacher which includes: designing and implementing specific programs, identifying, assessing and arranging individual learning programs, modifying teaching materials, evaluating, and making program reports and development of children with special needs.With this role, most of the children with special needs in SD Negeri 5 Arcawinangun can improve their learning achievement well.Suggestions of this research were parents always encourage their children to study seriously at home and at school, and provide learning facilities that support the development of education for their children. Keywords: role of parents, role of special guidance teachers, slow learner

The role of parents in teenagers' independent decision-making

2020 ◽  
Vol 3 (6) ◽  
pp. 45-47
Author(s):  
Sodiqova Gulbarno Odiljon qizi
Keyword(s):  
Decision Making ◽  
The Family ◽  
Role Of Parents ◽  
Independent Decision

This article provides an overview of the role of parents and parenting methods in teenager independent decision-making in the family, and provides relevant conclusions

Treatment of Disabled Infants

PEDIATRICS ◽  
1984 ◽  
Vol 74 (4) ◽  
pp. 572-572
Author(s):  
PAUL F. WEHRLE
Keyword(s):  
Decision Making ◽  
Human Services ◽  
Medical Professionals ◽  
Health And Human Services ◽  
Department Of Health ◽  
Baby Doe ◽  
The Government ◽  
Role Of Parents ◽  
Seriously Ill

In Reply.— I am concerned that the Academy's position on treatment decisions regarding seriously ill newborns may have been construed to be one in alliance with the government's hard-line stand on interventionism and insistence upon treatment. It has always been our position that neither the government nor the courts should interfere in decisions best made by parents in consultation with medical professionals. The Academy is as committed to this concept today as it was when it first challenged the Department of Health and Human Services (DHHS) and successfully struck down the first "Baby Doe" rule which ignored the role of parents in this critical decision-making arena.

Ethical and Cultural Considerations in Informed Consent in Botswana

2007 ◽  
Vol 14 (4) ◽  
pp. 503-509 ◽  
Author(s):  
Sheila Shaibu
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Nurse Educators ◽  
Cultural Practices ◽  
Culturally Sensitive ◽  
Ethical Challenges ◽  
Research Participants ◽  
Cultural Considerations ◽  
Conducting Research

Reflections on my experience of conducting research in Botswana are used to highlight tensions and conflicts that arise from adhering to the western conceptualization of bioethics and the need to be culturally sensitive when carrying out research in one's own culture. Cultural practices required the need to exercise discretionary judgement guided by respect for the culture and decision-making protocols of the research participants. Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized.

The Potential Role of Social Reporting in the Decision-Making Process of Cooperatives

2019 ◽  
pp. 115-131
Author(s):  
Fabio De Matteis ◽  
Daniela Preite
Keyword(s):  
Decision Making ◽  
Single Case ◽  
Research Question ◽  
Social Economy ◽  
Social Reporting ◽  
Social Report ◽  
The Social ◽  
Decision Making Processes

Accountability in the social economy sector is very important because it is inherent in the nature of the organizations of this sector. The literature on the topic of social accounting and accountability is abundant and highlights the benefits and the criticisms of social reporting. The objective of the chapter arises from the literature review that highlights how more in-depth studies are needed on the characters and role of social accountability in decision-making processes. In order to answer the research question (How is social reporting performed and how does social information influence the decision making of the management in a cooperative?), the single case study methodology has been adopted, considering embedded units of analysis and focusing on the social report of an Italian retail cooperative (COOP Lombardia). Thanks to the analyzed case study, it is possible to conclude that the social report can represent a tool of accountability that also informs future decisions, realizing a circular relationship between results achieved and decisions to be taken.

The Development of Self-Compassion Among Women Varsity Athletes

2017 ◽  
Vol 31 (4) ◽  
pp. 317-331 ◽  
Author(s):  
Meghan S. Ingstrup ◽  
Amber D. Mosewich ◽  
Nicholas L. Holt
Keyword(s):  
Research Question ◽  
Self Awareness ◽  
Individual Interviews ◽  
Self Compassion ◽  
Varsity Athletes ◽  
Role Of Parents ◽  
Learning From Others ◽  
Compassion Scale

The purpose of this study was to explore factors that contributed to the development of self-compassion among highly self-compassionate women varsity athletes. More specifically, the research question was: how did women varsity athletes with high self-compassion perceive they became self-compassionate? To purposefully sample participants, 114 women varsity athletes completed the Self-Compassion Scale (Neff, 2003b). Ten athletes with high self-compassion scores then participated in individual interviews and a follow-up second interview. Data were analyzed using interpretive phenomenological analysis (Smith & Osborn, 2003). Analysis produced three main themes that contributed to the development of self-compassion: (a) role of parents (seeking and receiving help from parents, parents teaching self-kindness, parents putting experiences in perspective); (b) gaining self-awareness; and (c) learning from others (peers, siblings, coaches, sport psychologists). These findings provide insights into the ways in which self-compassion can be learned and taught, and have implications for practitioners who work with women athletes.

Nudging in Neonatology: Practical Wisdom and Accountability for Reasonableness

2019 ◽  
Vol 35 (1) ◽  
pp. 5-9 ◽  
Author(s):  
Michal Stanak
Keyword(s):  
Decision Making ◽  
Neonatal Intensive Care ◽  
Ethical Issues ◽  
Practical Wisdom ◽  
Neonatal Intensive Care Units ◽  
Shared Decision ◽  
Value Judgments ◽  
Accountability For Reasonableness ◽  
Limit Of Viability

ObjectivesThe way choice is presented has an impact on decision-making. This is the case also in the context of neonatal intensive care units (NICUs), particularly in the challenging cases that concern the limit of viability. The objective of this article is to examine the role of nudging in the shared decision-making in neonatology and elaborate on the respective moral challenges.ResultsNudging is not morally neutral. There are two key sources of ethical issues at the heart of nudging. The first one concerns the lack of transparency, while the second concerns the background value judgments that are imminent whenever nudging is used for achieving a particular end. To solve the underlying conflict, a virtue ethics approach combined with the accountability for reasonableness framework is suggested to guide the use of the tool of nudging.ConclusionsNICU professionals ought to use the tool of nudging transparently in line with their act of profession and their practically wise judgment.

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