Involving Parents and Children in Community-Engaged Research

Author(s):  
Erin Talati Paquette ◽  
Lainie Friedman Ross

Stakeholder engagement in research is increasingly relied upon for its potential to increase the relevance of research, improve transparency of the research process, and translate evidence into practice. Engaging communities in research provides research teams with unique views into the needs, interests, and skills of public stakeholders including healthy volunteers, advocacy groups, patient groups, and their families and/or caregivers. This chapter considers key ethical considerations for researchers contemplating community-engaged research, including how to think about protection of human subjects and privacy, concerns regarding conflicts of interest and group harms, and compensation in community-engaged research. These concerns are heightened and further complicated in community-engaged pediatric research because of the additional vulnerabilities of children. In the pediatric setting, the scope of child participation, consent, and compensation deserve special attention, with respect to and for the evolving but not yet fully developed moral agency of children.

2000 ◽  
Vol 28 (4) ◽  
pp. 330-331 ◽  
Author(s):  
Greg Koski

A generation ago, we adopted a national system for the protection of human subjects in research. Today, that system is facing new challenges. Many argue that the system has failed to evolve in concert with dramatic changes in the research environment. Accordingly, efforts are underway to reform the existing process to make it both more efficient and more effective. At the same time, many are also reexamining the system in more fundamental ways — going well beyond considerations of policies and compliance and raising questions that go to the very foundations of what constitutes an ethical conduct of human research.Experimentation involving human subjects is a necessary step in the process of translating scientific discovery and technological advancement into procedures and products that offer the prospect of better lives for all of us. It helps us to better understand why we do the things we do and believe what we believe.


2020 ◽  
pp. 096973302095212
Author(s):  
Mary Ann Meeker ◽  
Dianne White

Background: Moving into the last phase of life comprises a developmental transition with specific needs and risks. Facilitating transitions is an important component of the work of nurses. When curative interventions are no longer helpful, nurses enact key roles in caring for patients and families. Aim: The aim of this study was to examine the experiences of registered nurses in acute care settings as they worked with patients and families to facilitate transition to comfort-focused care. Research design: Sampling, data collection, and data analysis were guided by constructivist grounded theory, chosen because of its strength in identifying and explicating social processes. Participants and context: A purposeful sample of 26 registered nurses working in acute care hospitals in one community in the northeastern United States participated in this study through semi-structured interviews. Ethical considerations: The study received approval from the university’s Institutional Review Board for the Protection of Human Subjects. Participants provided informed consent. Findings: Nurses facilitated transition to comfort-focused care by enacting their moral commitments to patients and families. They focused on building relationships, honoring patient self-determination, and maintaining respect for personhood. In this context, they discerned a need for transition, opened a discussion, and used diverse strategies to facilitate achieving consensus on the part of patients, family members, and care providers. Regardless of how the process unfolded, nurses offered support throughout. Discussion: Achievement of consensus by all stakeholders is critical in the transition to comfort-focused care. This study deepens our understanding of how nurses as moral agents utilize specific strategies to assist progress toward consensus. It also offers an example of recognizing the moral agency of nurses through listening to their voices. Conclusion: Increased understanding of effective nursing strategies for facilitating transition to comfort-focused care is essential for developing needed evidence for excellent care and strengthening end-of-life nursing education.


In this chapter, students are presented with the many ethical dilemmas that can potentially confront social science researchers. Research ethics centers of two fundamental principles: 1) the protection of human subjects and 2) maintaining the integrity of the research process. Both of these principles are discussed in the context of popular culture and past transgressions of researchers, specifically the film Ghostbusters, the Tuskegee experiments, and Milgram experiments.


Author(s):  
Richard W. Schwester

In this chapter, students are presented with the many ethical dilemmas that can potentially confront social science researchers. Research ethics centers of two fundamental principles: 1) the protection of human subjects and 2) maintaining the integrity of the research process. Both of these principles are discussed in the context of popular culture and past transgressions of researchers, specifically the film Ghostbusters, the Tuskegee experiments, and Milgram experiments.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  

Abstract The role of the corporate sector in research sponsorship is growing. So too is the evidence that corporations whose products are potentially damaging to health or the environment influence science and the ways in which science is used in policy and practice. Such efforts are a key part of corporate attempts to maintain or increase the consumption or use of industry products, and to secure favourable policy outcomes. The products and practices of corporations are responsible for a growing proportion of the global disease burden. Non-communicable diseases, many driven by consumption of unhealthy commodities and exposure to chemicals, account for over 73 percent of global deaths. It is increasingly important to understand the complex and multifaceted ways corporations seek to influence science; the impact these strategies have; and the ways this influence can be addressed. This workshop brings together global experts to explore these issues. Drawing on examples from several industries (e.g. tobacco, alcohol, food, and pharmaceuticals), it aims to: Increase understanding of the ways corporations whose products are potentially damaging to health influence science. We present a newly developed, evidence-based typology which draws together the vast existing literature in this field, to present a simplified way of understanding corporate influence on science. Delegates will be provided with materials that provide a means for recognising such influence.Examine the influence that corporations have on the first stage in the research process - research agendas. We present examples from tobacco, food and pharmaceutical industries which illustrate the mechanism through which industry funding of science drives researchers to study questions that are favourable to industry. The desired outcome is to maximise research on the benefits of industry products (positioning these products as solutions to complex problems), minimise research on the harms of their products, support their policy and legal positions, and impede potential regulation of their products.Increase awareness of the involvement that corporations have had in altering the mechanisms though which science is used in policymaking. Delegates will hear how corporations promoted and embedded policymaking reforms which increase reliance on and provide a conduit for industry-favourable science.Suggest ways forward concerning management of conflicts of interest in the publication of health research. Here we will discuss the roles that journals can play in governing conflicts of interest and issues of transparency in the publication of academic research.Suggest ways forward for funding research on unhealthy commodities. We present criteria for tobacco industry-supported research funding programs, and discuss the applicability of similar programs for funding research on other unhealthy commodities, and on the practices of other industries such as the fossil fuels industry. Key messages Corporations have been seen to skew evidence bases, manipulate interpretations of science, and influence use of science in policy and practice – such influence is a major threat to public health. This workshop exposes industry tactics in this area and begins to identify ways for dealing with them.


Cephalalgia ◽  
2021 ◽  
pp. 033310242110299
Author(s):  
Peer Tfelt-Hansen ◽  
Karsten Jørgensen ◽  
Hans-Christoph Diener

Purpose In four large controlled trials with lasmiditan and ubrogepant placebo was administered in the first step to demonstrate an effect on migraine attack. In the same trials the investigators also asked the question: is a second dose of the drug effective in non-responders to the first dose? In this phase patients who received placebo in the first phase of the trial again after 2 hours received another dose of placebo. Conclusion To be ethical, clinical research requires balancing rigorous science with the protection of human subjects; and it is, in our view, questionable whether placebo was used with “scientific rigor” in the second step of these trials, and this design is not recommended.


2017 ◽  
Vol 20 (1) ◽  
pp. 107-114 ◽  
Author(s):  
Jennifer Kue ◽  
Laura A. Szalacha ◽  
Mary Beth Happ ◽  
Abigail L. Crisp ◽  
Usha Menon

PLoS Biology ◽  
2015 ◽  
Vol 13 (2) ◽  
pp. e1002067 ◽  
Author(s):  
Marion Mathieu ◽  
Constance Hammond ◽  
David G. Karlin

2018 ◽  
Vol 159 (11) ◽  
pp. 423-429
Author(s):  
Csanád Albert-Lőrincz

Abstract: This study summarizes the results of the author’s PhD thesis presenting the research process and the most important findings regarding the situation of Transylvanian healthcare. Our data are based on the knowledge and compliance of pediatric patients’ rights as they are seen by healthcare specialists, parents and children. A number of 751 persons were involved in the research: 200 healthcare specialists, 200 parents, 200 children aged from 7 to 17 years who have been experiencing health services at least three times over the past year and a control group of 151 children who did not have this kind of experience. Based on our data, it was possible to highlight the major problems encountered in children’s healthcare. We found that children are treated by obsolete principles of medical practice despite the fact that the rights of pediatric patients are well known to doctors. Neither the parents nor the children themselves are sufficiently aware of their rights. Healthcare professionals are not prepared to overcome communication difficulties due to the age-specific characteristics of children, so the fundamental rights of children are just partially enforced: children are usually heard, but not properly informed, their medical decisions are usually not taken into account violating the right to self-determination. The chances to access adequate health services are lower for vulnerable children living in poverty. Orv Hetil. 2018; 159(11): 423–429.


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