scholarly journals What is in a Name? Parent, Professional and Policy-Maker Conceptions of Consent-Related Language in the Context of Newborn Screening

2019 ◽  
Vol 12 (2) ◽  
pp. 158-175
Author(s):  
Stuart G Nicholls ◽  
Holly Etchegary ◽  
Laure Tessier ◽  
Charlene Simmonds ◽  
Beth K Potter ◽  
...  

Abstract Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents (n = 32), healthcare professionals (n = 19) and policy decision makers (n = 17) in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities (including disclosure of information and time to review); parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs.

F1000Research ◽  
2021 ◽  
Vol 9 ◽  
pp. 1356
Author(s):  
Yossi Maaravi ◽  
Ben Heller

The novel coronavirus disease 2019 (COVID-19) has brought with it crucial policy- and decision-making situations, especially when making judgments between financial and health concerns. One particularly relevant decision-making phenomenon is the prominence effect, where decision-makers base their decisions on the most prominent attribute of the object at hand (e.g., health concerns) rather than weigh all the attributes together. This bias diminishes when the decision-making mode inhibits heuristic processes. In this study, we tested the prominence of health vs. financial concerns across two decision-making modes - choice (prone to heuristics) and matching (mitigates heuristics) - during the peak of the COVID-19 in the UK using Tversky et al.’s classic experimental paradigm. We added to the classic experimental design a priming condition. Participants were presented with two casualty-minimization programs, differing in lives saved and costs: program X would save 100 lives at the cost of 55-million-pound sterling, whereas program Y would save 30 lives at the cost of 12-million-pound sterling. Half of the participants were required to choose between the programs (choice condition). The other half were not given the cost of program X and were asked to determine what the cost should be to make it as equally attractive as the program Y. Participants in both groups were primed for either: a) financial concerns; b) health concerns; or c) control (no priming). Results showed that in the choice condition, unless primed for financial concerns, health concerns are more prominent. In the matching condition, on the other hand, the prominence of health concerns did not affect decision-makers, as they all “preferred” the cheaper option. These results add further support to the practical relevance of using the proper decision-making modes in times of consequential crises where multiple concerns, interests, and parties are involved.


2021 ◽  
Author(s):  
◽  
Edward Johnson

<p><b>The gold mining industry in Ghana is characterised by complexity in terms of its extended/sequential operations, its system-wide reach, its multiple stakeholders, and the variety of formal and informal organisations that constitute the industry. Perceptions of the industry differ considerably amongst stakeholders, depending on their stakes and interests, knowledge, understanding, involvement and agency within or without the sector. Studies of the industry to date have overlooked these diverse viewpoints and used limited-scope, single-frame analyses. However, they have highlighted wide-ranging industry issues that impact the diversity of stakeholders, which could benefit from a fuller and more comprehensive analysis.</b></p> <p>This study addresses this need by adopting a multi-framing systems-based approach. Data was examined and analysed through a variety of systems-based lenses and frames, including a stakeholder analysis (SA) frame, a causal loop modelling (CLM) frame, supply chain analysis (SCA) frame and the Theory of Constraints (TOC) Thinking Processes analytical frames lenses. First the Current Reality Tree (CRT) tool of the Theory of Constraints (TOC) was used to synthesise information from the literature examined, providing an initial provisional CRT model. Interview data was collected by sharing and seeking feedback to the CRT model at multiple levels of the industry, giving voice to stakeholders throughout the sector. Subsequent analysis used all the modelling frameworks mentioned above in a multi-framing analysis.</p> <p>In particular, the evaporating cloud (EC) tool from TOC was used to structure and develop potential solutions to conflict highlighted by the literature review, the SA, SCA and CLM. Building on this, a final CRT was developed, and a goal tree (GT) used to design the desired future whilst employing the future reality tree (FRT) to test the plausibility of solutions from the EC to deliver the desired future. The prerequisite tree (PRT) was then used to identify obstacles and intermediate objectives that must be overcome for successful transition to the desired future.</p> <p>Insights from the research shows a desire by multi-national large scale-gold mining companies and government alike to minimise adverse impacts and maximise the sector’s outcomes for key stakeholders, including those at the community level. However, the research has documented many instances of actions taken to address issues and improve outcomes that have instead resulted in unresolved dilemmas and paradoxes, failing to achieve desired outcomes.</p> <p>A number of factors have been identified as being responsible for these situations. Key amongst them is a limited understanding to deliver desired outcome for stakeholders without compromises, a focus on short-term goals, no collective effort, and arms-length/win-lose relationships amongst the Ghanaian stakeholders of the industry.</p> <p>The study’s concluding findings and results allow decision makers to benefit significantly from the study through its recommendations and showcasing of tools that may allow them to make sound decisions and address endogenous and exogenous cause-effect relationships limiting desirable outcomes from actions taken.</p> <p>Theoretical and knowledge-based contributions are made by conceptualising and offering evidence for three key factors or dimensions that can explain a significant number of issues limiting desirable outcomes for stakeholders of the gold mining industry. These include difficulty to transition from theory (espoused aims) to practice, a relative focus on local optima (silo thinking), poor monitoring (lack of evaluation), and a control culture. Methodological contributions are made by demonstrating the application of a multi-framing approach in a more organic and iterative manner as opposed to its use in a designed sequence, working down through layers of various systemic levels of an industry (in this case, the gold mining industry in Ghana). By so doing, the study builds on and extends the practicality of the multi-framing approach and stimulates further research in the field.</p> <p>In terms of its contribution to practice, the study provides Government, political and mining sector policy decision makers, and other interested actors, with a platform for understanding the sector in order to support their decision making about the industry to ultimately improve outcomes for key stakeholders. In particular, the study allows mining sector policy decision makers and other stakeholders to recognise complexity, uncertainty and conflicts that are embedded in the mining system and in their everyday decision-making activities about the industry. It also allows these stakeholders to become more aware that such issues can be addressed and improved by identifying and focusing on one or few underlying causes.</p> <p>This thesis draws on systems-based frameworks drawn both from functional management, for example, the supply chain and value chain frameworks of operations management and the stakeholder framework of strategic management, and from the broad domain of systems thinking (ST) and systems-based methodologies; and then focuses on the intersection of these frameworks in relation to the gold mining sector in Ghana. Due to the wide range of techniques applied, none are over-explored, creating potential for further research. On the other hand, with regard to explanations, depending on background, practitioners, and researchers familiar with some techniques may consider those sections over-explained. The researcher has sought a balance for the purpose of this study. Whilst limiting the scope of this work has been necessary in the context of doctoral study, topics ripe for future research are set out in the conclusion.</p>


Author(s):  
James M. Goldgeier

Decision makers, acting singly or in groups, influence the field of international relations by shaping the interactions among nations. It is therefore important to understand how those decision makers are likely to behave. Some scholars have developed elegant formal theories of decision making to demonstrate the utility of rational choice approaches in the study of international relations, while others have chosen to explain the patterns of bias that exist when leaders face the difficult task of making decisions and formulating policy. Among them are Herbert Simon, who introduced “bounded rationality” to allow leaders to short-circuit the decision process, and Elizabeth Kier, who has shown how organizational cultures shaped the development of military doctrine during the interwar period. The literature on foreign policy decision making during the Cold War looked inside the black box to generate analyses of bureaucratic politics and individual mindsets. Because decision making involves consensus seeking among groups, leaders will often avoid making choices so that they will not antagonize key members of the bureaucracy. Scholars have also investigated the role of “policy entrepreneurs” in the decision-making process, bringing individual agents into organizational, diplomatic and political processes. Over time, the field of policy decision making has evolved to help us understand not only why leaders often calculate so poorly but even more importantly, why systematic patterns of behavior are more or less likely under certain conditions.


2009 ◽  
Vol 12 (2) ◽  
pp. 111-124
Author(s):  
Chulwon Lee

The future direction of China's approach to energy policy making is, of course, difficult to predict. This is due not only to the opaque and fragmented nature of Chinese energy policy decision-making, but also to the fact that energy policy is a new topic for China's leaders and the individuals they rely on for advice to master that impinges on the interests of actors throughout the Chinese bureaucracy. The wide range of participants in the energy policy debate indicates that more diversified views on it probably reach the top leadership. The impact of the multiplicity of opinions is two-fold. It can result in more informed decision-making, but it can also delay the process as decision makers must assess a larger number of competing and sometimes contradictory views.


F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 1356
Author(s):  
Yossi Maaravi ◽  
Ben Heller

The novel coronavirus disease 2019 (COVID-19) has brought with it crucial policy- and decision-making situations, especially when making judgments between economic and health concerns. One particularly relevant decision-making phenomenon is the prominence effect, where decision-makers base their decisions on the most prominent attribute of the object at hand (e.g., health concerns) rather than weigh all the attributes together. This bias diminishes when the decision-making mode inhibits heuristic processes. In this study, we tested the prominence of health vs. economic concerns across two decision-making modes - choice (prone to heuristics) and matching (mitigates heuristics) - during the peak of the COVID-19 in the UK using Tversky et al.’s classic experimental paradigm. We added to the classic experimental design a priming condition. Participants were presented with two casualty-minimization programs, differing in lives saved and costs: program X would save 100 lives at the cost of 55-million-pound sterling, whereas program Y would save 30 lives at the cost of 12-million-pound sterling. Half of the participants were required to choose between the programs (choice condition). The other half were not given the cost of program X and were asked to determine what the cost should be to make it as equally attractive as the program Y. Participants in both groups were primed for either: a) economic concerns; b) health concerns; or c) control (no priming). Results showed that in the choice condition, unless primed for economic concerns, health concerns are more prominent. In the matching condition, on the other hand, the prominence of health concerns did not affect decision-makers, as they all “preferred” the cheaper option. These results add further support to the practical relevance of using the proper decision-making modes in times of consequential crises where multiple concerns, interests, and parties are involved.


Author(s):  
Louis Cournoyer ◽  
Frédéric Deschenaux

Each year, a large number of students aged 25 years and over take part in vocational and education training (VET) programs in the Province of Quebec, Canada. The life experiences of many of these adults are marked by complex psychosocial and professional events, which may have influenced their career decision-making processes. This paper aimed to identify key rationales guiding the decisions of adults aged 25 years and older to return to education based on a thematic analysis of 30 semi-structured interviews with students enrolled in a VET program. The analysis focused on two theoretical axes: one biographical and the other interactionist. The first involved personal life courses and professional projects undertaken by the student in the past. The second examined tensions and conflicts between context forces and adjustment strategies adopted by the student. The results revealed five decision-making rationales that characterized the vast majority of the students’ experiences: 1) get out of a socioprofessional and economic slump; 2) know yourself better, personally and socially; 3) value the concrete and the practical; 4) take advantage of supporting conditions; and 5) reconcile proximity and the known. The relevance and implications of these findings for professionals and decision makers in vocational training are discussed.


2022 ◽  
Vol 80 (1) ◽  
Author(s):  
Peivand Bastani ◽  
Jamshid Bahmaei ◽  
Ebrahim Kharazinejad ◽  
Mahnaz Samadbeik ◽  
Zhanming Liang ◽  
...  

Abstract Background The COVID-19 pandemic increased the need for new valid scientific evidence to support urgent clinical and policy decision making; as well as improved processes for the rapid synthesis, uptake and application of that evidence. Evidence informed policymaking (EIPM) can be considered as a way to access and use the results of evidence in practice. This study aimed to determine what effects COVID-19 had on the way Iranian health managers and policymakers use evidence in their decisions. Methods This study was conducted in 2021 applying a qualitative research design. Data was collected through semi-structured interviews. Thirty health care managers, policy makers and medical university faculty members were recruited as the study participants, initially via a purposive sample, followed by snowballing. A conventional content analysis presented by Hsieh and Shannon (2005) was applied for data analysis. Results Ten main themes emerged from the data including: 1) roles and duties of knowledge brokers (KBs); 2-5) the roles, benefits, barriers and necessities of applying Knowledge Translation Exchange (KTE) tools; 6-8) the facilitators, benefits and barriers to the application of evidence during COVID-19; 9) challenges of rapid evidence production evidence during COVID-19 and 10) consequences of not applying evidence during COVID-19. According to the present conceptual framework, KBs act as an intermediator between the large amounts of knowledge produced and decision makers. KTE tools should be applied to enhance EIPM during COVID-19. Attention should be paid to the facilitators, barriers, benefits and necessities of evidence application during COVID-19 to avoid negative consequences for the health system. Conclusions Results of this study show that developing KTE tools and activating KBs can be among the main strategies to produce applied actionable messages for policymakers to move toward EIPM; and that this applies even when rapid decision making is required, such as during the COVID-19 pandemic. It is strongly recommended to reinforce the local capacities through supporting scientific networks and relationships between research centers and local and national policymakers. At the same time, attention to local barriers to and facilitators of the application of evidence while facing a pandemic can pave the way to better identification of health system`s problems and rapid responses.


Author(s):  
Daniel Bussolotto ◽  
Leonardo Da Costa Bagattini ◽  
Maria Emília Camargo

As an organizational asset, data is one of the great sources of competitive advantage of organizations, so that its publication and storageg, aligned with the organizations' strategic and operational metrics, has become a matter of great discussion and concern among decision makers. This study aims to carry out a study about the contributions of the strategic distribution of information to decision-making processes in organizations. The methodology used, of an exploratory qualitative nature, applied the study of multiple cases, through the collection and analysis of data from semi-structured interviews with several employees of organizations that use tools for collecting, processing and disseminating information. The research shows how the information and technologies applied to its treatment collaborate with decision-making processe.


Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Sarah M Perman ◽  
Bonnie J Siry-Bove ◽  
Benjamin Abella ◽  
Stacie L Daugherty ◽  
Edward Havranek ◽  
...  

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.


2017 ◽  
Vol 76 (4) ◽  
pp. 589-596 ◽  
Author(s):  
Richmond Aryeetey ◽  
Michelle Holdsworth ◽  
Christine Taljaard ◽  
Waliou Amoussa Hounkpatin ◽  
Esi Colecraft ◽  
...  

Although substantial amount of nutrition research is conducted in Africa, the research agenda is mainly donor-driven. There is a clear need for a revised research agenda in Africa which is both driven by and responding to local priorities. The present paper summarises proceedings of a symposium on how evidence can guide decision makers towards context-appropriate priorities and decisions in nutrition. The paper focuses on lessons learnt from case studies by the Evidence Informed Decision Making in Nutrition and Health Network implemented between 2015 and 2016 in Benin, Ghana and South Africa. Activities within these countries were organised around problem-oriented evidence-informed decision-making (EIDM), capacity strengthening and leadership and horizontal collaboration. Using a combination of desk-reviews, stakeholder influence-mapping, semi-structured interviews and convening platforms, these country-level studies demonstrated strong interest for partnership between researchers and decision makers, and use of research evidence for prioritisation and decision making in nutrition. Identified capacity gaps were addressed through training workshops on EIDM, systematic reviews, cost–benefit evaluations and evidence contextualisation. Investing in knowledge partnerships and development of capacity and leadership are key to drive appropriate use of evidence in nutrition policy and programming in Africa.


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