Vulnerability in Research

Author(s):  
Sana Loue ◽  
Bebe Loff

The concept of vulnerability and the attendant responsibility of researchers to provide special protections for research participants deemed to be vulnerable are considered to be foundational concepts in bioethics. However, not only do international and national guidelines differ in their definition of vulnerability, but they also vary with respect to who is to be considered vulnerable in research. This chapter describes the ways in which vulnerability has been defined by international and national guidelines, discusses the considerations deemed relevant by international and national guidance and writers on the topic, and concludes with thoughts on how the meaning of vulnerability might be communicated in teaching.

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Marissa Shams-White ◽  
Alice Bender ◽  
Nigel Brockton ◽  
Susannah Brown ◽  
Lisa Kahle ◽  
...  

Abstract Objectives To develop a standardized AICR/WCRF Score that measures adherence to the 2018 WCRF/AICR Cancer Prevention Recommendations and provide guidance for its application in research. Methods Each of the updated 2018 WCRF/AICR Cancer Prevention Recommendations and the associated goals and statements of advice were examined to inform the definition of a new Score. For each of the weight, physical activity, diet, and breastfeeding-specific recommendations, components and subcomponents were created. Standards for scoring each component were established based on quantitative guidance specified in the recommendations; however, if no specificity was provided, other guidelines (e.g., national guidelines), past research that operationalized 2007 WCRF/AICR recommendations, and expert panel advice were evaluated. Results The proposed AICR/WCRF Score includes eight of the ten WCRF/AICR 2018 recommendations: 1) Be a healthy weight, 2) Be physically active, 3) Eat a diet rich in whole grains, vegetables, fruits, and beans, 4) Limit consumption of fast foods and other processed foods high in fat, starches, or sugars, 5) Limit consumption of red and processed meats, 6) Limit consumption of sugar-sweetened beverages, 7) Limit alcohol consumption, and, optionally, 8) For mothers: breastfeed your baby, if you can. Each of the components are worth one point: 1, 0.5, and 0 points for fully, partially, and not meeting the recommendations, respectively (total Score: 0–7 or 8 points). Two recommendations were not included in the Score due to uncertain intent of supplement use (Do not use supplements for cancer prevention) and the redundancy of the dependent components in the final recommendation (After a cancer diagnosis: follow our Recommendations, if you can). Additional guidance will stress the importance of taking into account other risk factors, such as smoking, in relevant models using the new Score. Conclusions The AICR/WCRF Score is a practical tool operationalizing the 2018 recommendations. Future studies are needed to further examine how adherence to the Score relates to cancer risk and mortality in various populations. Funding Sources None.


Author(s):  
Nick A. Johnson ◽  
Joseph J. Dias

Abstract Background In the United Kingdom, national guidance recommends intra-articular distal radius fractures should undergo surgery within 72 hours and extra-articular fractures within 7 days. Purpose We investigated if hospitals can provide timely surgery and meet national guidelines in patients who are sent home following distal radius fracture (DRF) to return for planned surgery. The influence of patient, hospital, and seasonal factors on wait to surgery are investigated. Patients and Methods We reviewed Hospital Episode Statistics (HES) data between April 2009 and March 2013. Proportion of procedures being performed within 3 and 7 days was calculated. A linear regression model was created to investigate the relationship between wait for surgery and patient and hospital factors. Results A total of 9,318 patients were sent home to return for planned acute DRF surgery during the 4-year study period. Mean time to surgery was 3.04 days (range 1–days, standard deviation [SD] 3.14). A total of 6,538 patients underwent surgery within 3 days (70.2%) and 8,747 within 7 days (93.9%). Patients listed for surgery and sent home to return waited longer if listed toward the end of the week. Less surgery was performed at weekends, and patients were less likely to be listed for semielective trauma surgery. Conclusions Acute semielective DRF fixation is generally performed within targets for extra-articular fractures but there is scope for improvement for intra-articular fractures. Day of presentation and increasing number of comorbidities increase wait for surgery. Hospital trusts should focus on improving pathways for patients with multiple comorbidities and strategies to improve accessibility of these services at weekends.


2011 ◽  
Vol 17 (9) ◽  
pp. 769-779 ◽  
Author(s):  
Mary Bosworth ◽  
Carolyn Hoyle ◽  
Michelle Madden Dempsey

This article exposes methodological barriers we encountered in a small research project on women trafficked for the purpose of sexual exploitation and our attempts, drawing on feminist and emergent methods, to resolve them. It critically assesses the role of institutional gatekeepers and the practical challenges faced in obtaining data directly from trafficking victims. Such difficulties, it suggests, spring at least in part from lingering disagreements within the feminist academic, legal, and advocacy communities regarding the nature, extent, and definition of trafficking. They also reveal concerns from policy makers and practitioners over the relevance and utility of academic research. Although feminist researchers have focused on building trust with vulnerable research participants, there has been far less discussion about how to persuade institutional elites to cooperate. Our experiences in this project, we suggest, reveal limitations in the emphasis on reflexivity in feminist methods, and point to the need for more strategic engagement with policy makers about the utility of academic research in general.


Author(s):  
Elena Vacchelli

The definition of data in qualitative research is expanding. This book highlights the value of embodiment as a qualitative research tool and outlines what it means to do embodied research at various points of the research process. It shows how using this non-invasive approach with vulnerable research participants such as migrant, refugee, and asylum-seeking women can help service users or research participants to be involved in the co-production of services and in participatory research. Drawing on both feminist and post-colonial theory, the author uses her own research with migrant women in London, focusing specifically on collage making and digital storytelling, whilst also considering other potential tools for practicing embodied research such as yoga, personal diaries, dance, and mindfulness. Situating the concept of ‘embodiment’ on the map of research methodologies, the book combines theoretical groundwork with actual examples of application to think pragmatically about intersectionality through embodiment.


2014 ◽  
Vol 5 (4) ◽  
pp. 41-48
Author(s):  
D V Duplyakov ◽  
I V Kondratyeva ◽  
S V Garkina

The review discusses accumulated to date scientific data on dilated cardiomyopathy: causative factors, clinical manifestations, sudden cardiac death in patients with the disease and its risk-stratification in the light of National guidelines on the definition of risk and prevention of sudden cardiac death (2012). A case of a patient with dilated cardiomyopathy and high-risk of sudden cardiac death is presented.


BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S68-S69
Author(s):  
Elliott Carthy ◽  
Samrat Sengupta

AimsComprehensive and timely data collection during a pandemic is crucial in developing guidelines and policy as well as evaluating their effectiveness. In turn, this will improve planning for future incidents. While this is being undertaken at a national level by Public Health England, more specific information as it relates to psychiatric care is important in understanding the neuropsychiatric, psychological and social effects of the pandemic. The management of patients with COVID-19 presents a unique challenge in inpatient psychiatry settings both in terms of diagnosis and treatment. This is perhaps greater still in forensic settings due to the increased risk of violence and aggression. This audit aimed to firstly assess the consistency of local practice to national guidance from Public Health England. Secondly, it aimed to describe the clinical management of suspected and confirmed cases of COVID-19 in this high security forensic hospital and how readily broad, national guidance can be implemented in this unique setting. We present an audit with three cycles, one from each wave of COVID-19 in England during 2020.MethodThis was a retrospective audit in a high secure forensic psychiatry hospital in the United Kingdom, into the investigation and management of suspected and confirmed cases of COVID-19 compared to national guidelines from Public Health England. It includes three cycles, one undertaken in each national wave of COVID-19 in England in 2020.ResultTen patients have been included in cycle 1, 12 in cycle 2 and 21 in cycle 3 as those where COVID-19 was a considered diagnosis. SARS-CoV-2 was detected in one patient in cycle 1 and 12 patients in cycle 3. All patients recovered, most of whom remained on-site with supportive care in self-isolation on a dedicated ward for positive cases. Three patients required additional treated with oral antibiotics and dexamethasone, one of whom required admission to the local general medical hospital for continuous supplemental oxygen.ConclusionThis is the first study to describe the management of the novel COVID-19 pandemic in a high security forensic psychiatry hospital and how readily national guidance can be implemented in this unique setting. Hospital practice at identifying suspected cases and the management of confirmed cases of COVID-19 was shown to be consistent with national guidance. It also allowed for clinicians to exercise their judgement about testing for atypical cases and for repeat testing where appropriate.


2021 ◽  
Vol 108 (Supplement_6) ◽  
Author(s):  
D Effiom

Abstract Introduction Virtual Fracture clinics (VFCs) are an alternative to the traditional fracture clinic. Recent evidence reports them to be safe, cost-effective, and efficient model without significant compromise to patient care. Aim This audit aims to assess VFC referrals from the paediatric emergency department (ED) and ensure the appropriateness of these referrals. Method This was a retrospective audit done at a large district general hospital in the United Kingdom (UK). We included patients under 18 years old presented to the emergency department with suspected or confirmed fractures and referred to virtual fracture clinics within a period of one month. The performance was measured against both local and national guidance (NICE & BOAST 7). Results Thirty patients were eligible. Thirty-three per cent of patients were appropriately referred to the VFC and ’seen’ within 72 hours. Comparing those referred 63.3% were appropriate, with inappropriate referrals mainly due to false-positive fracture diagnosis or fractures safe to be discharged home. Only 67.8% per cent of patients were managed correctly as per suspected or confirmed diagnosis with regards to fixation (i.e., splint). Conclusions The target of 100% compliance has failed. Fractures deemed safe to be discharged home from the ED are being repeated referred, radiographic interpretations often over-diagnose, and management within the department in sub-optimal. Recommendations include improving junior radiographic interpretation skills and awareness of the local and national guidelines, with another audit cycle to assess for improvement.


2020 ◽  
Vol 161 (51) ◽  
pp. 2139-2145
Author(s):  
Zsuzsanna Mihály ◽  
Danielle Mariastefano Fontanini ◽  
Ágnes Dóra Sándor ◽  
Edit Dósa ◽  
Gábor Lovas ◽  
...  

Összefoglaló. A tudomány jelenlegi állása szerint – csoportok összehasonlítására épülő matematikai-statisztikai eszközökkel – a leginkább hatékonynak és hatásosnak vélt kezelési módszerek szisztematikus elemzése mentén, a bizonyítékokon alapuló irányelveken nyugvó gyógyító munkát tekintjük követendőnek. A nyaki verőérszűkület ellátása esetén az utóbbi években elkészült mind a hazai, mind az európai irányelv, mindemellett a társszakmák irányelveiben is megjelentek kezelési javaslatok. Közleményünkben összehasonlítottuk a témában publikált magyar, angol, német és olasz nyelvű, valamint az európai társaságok által kiadott irányelveket. Az irányelvek alapelveikben hasonlóak, formailag és tartalmilag azonban jelentős (időnként egymásnak ellentmondani látszó) különbségeket találhatunk. Az ellentmondások három leggyakoribb oka: 1) az egyes irányelvek által kitűzött célok különbözősége, 2) az aszimptomatikus és szimptomatikus betegcsoport definíciói, valamint 3) az eltérő evidenciaszintek. Az irányelvek összevetése alapján a tünetes, szignifikáns nyaki verőérszűkületek sebészi ellátása evidenciának tekinthető. A szimptomatikus nyaki verőérszűkület a definíció szerint ellenoldali cerebralis ischaemia okozta, tranziens vagy definitív plegia, paresis, aphasia és az azonos oldali arteria centralis retinae embolisatiója miatti amaurosis fugax. A tünetmentes nyaki verőérszűkületek ellátása tekintetében az európai és a nemzeti irányelvek nem azonosak, ezen esetek terápiás döntése egyéni mérlegelést igényel. Tünetmentes, 70%-os stenosis esetén vascularteam-konzílium javasolt. Orv Hetil. 2020; 161(51): 2139–2145. Summary. The correct practice is the one that is proven to be the most effective based on systematic statistical analyses of different treatment methods, and is applied according to evidence-based principles. In recent years, not only has the European Society of Vascular Surgery created a guideline about the management of supra-aortic steno-occlusive disease, but some nations’ vascular surgical societies and related disciplines have also developed their own guidance. In this paper, the guidelines by the European societies on the clinical care of patients with carotid artery luminal narrowing is compared to national guidelines published in Hungarian, English, German, and Italian. Although the fundamental points of the guidelines are similar, there are some important differences among them both in presentation and in content; as a result, they sometimes appear to be contradictory. The three main sources of inconsistency are the various goals, the discrepancy in the definition of symptomatic and asymptomatic carotid artery stenosis, and the bias arising from the use of distinct evidence levels. A comparison of guidelines suggests that the treatment of symptomatic significant carotid artery stenosis with surgery can be considered evidence. Symptomatic carotid artery stenosis is defined as transient or definite plegia, paresis, aphasia due to cerebral ischemia, and monocular blindness caused by embolism in the central retinal artery. However, in the case of asymptomatic 70% or greater carotid artery stenosis, the guidelines are quite heterogeneous, and these patients require individual consideration and a vascular team decision is recommended. Orv Hetil. 2020; 161(51): 2139–2145.


2020 ◽  
Vol 5 ◽  
pp. A102
Author(s):  
Volker Schneider ◽  
Rainer Könnecke

The time-based analysis of egress scenarios is a long-standing and well-established method to evaluate occupant safety. It is based on the necessary condition that the required egress time is smaller than the available egress time. The former is derived by the application of evacuation models, the latter by calculation of smoke and heat spread in the case of a fire incident. In the calculation of required egress time the time-dependent development of occupant density and consequently the emergence of congestion often play a crucial role. There is a demand to evaluate the development of local occupant density and jam situations independent of the above time-based criterion. This is for example reflected in national guidelines and standards. It is however difficult to obtain general valid evaluation criteria for congestion due to the multitude of influencing parameter and the highly situation-dependent nature of the accompanying boundary conditions. In addition, prediction of localization and duration of congestion may differ from model to model if applied to equal scenarios. Furthermore, close inspection reveals the difficulty to define proper terms for a quantitative definition of congestion. This issue is further analysed in this paper based on three case studies.


2018 ◽  
Vol 40 ◽  
pp. 01003
Author(s):  
R. Bardauskiene ◽  
J. Pivoriene

Despite that there is an operating social support system for families, social workers are affected by factors that limit effectiveness of their activities in working with families whose children are taken into temporary custody. The article aims to uncover what hinders social worker to carry out effective work in providing social services for families whose children are in temporary custody. Qualitative research data shows that the research participants’ awareness of social work effectiveness is limited to its individual components. Putting together these components one can get a broad definition of effectivenessof social work though the research participants themselves donot use such a concept. The research data reveals that micro level factors influencing effectiveness of social workers’ activities working with families whose children are in temporary custody are as follows: absence of parental motivation to seek changes and unfavourable environment as well as negative community approach to social risk families. Macro level factors limiting social work effectiveness working with the families at social risk lie in the system of social services. Inadequate management of social work, limited social workers’ access to resources necessary to restore family functions; too high workload for social workers are essential factors limiting social work effectiveness.


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