scholarly journals Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Jennifer Ilo Van Nuil ◽  
Thi Thanh Thuy Nguyen ◽  
Thanh Nhan Le Nguyen ◽  
Van Vinh Chau Nguyen ◽  
Mary Chambers ◽  
...  
Keyword(s):  
Hospital Setting ◽  
Research Participation ◽  
Consent Process ◽  
Future Research ◽  
Structured Interviews ◽  
Essential Information ◽  
Research Participants ◽  
Valid Consent ◽  
Referral Hospitals ◽  
Study Participants

Abstract Background Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. Methods We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. Results In our findings, we describe three interrelated themes related to the consent process: (1) words and regulation; (2) reimbursement, suspicions, and joining; and (3) responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu (Eng.: research) and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Conclusion Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust.

scholarly journals Researching tribute bands: tools, counter-interpretations and extending research relations to Facebook in a tight network

2021 ◽  
pp. 146879412110195
Author(s):  
Nuné Nikoghosyan
Keyword(s):  
Qualitative Methodology ◽  
Future Research ◽  
Structured Interviews ◽  
General Methodology ◽  
Cultural Intermediaries ◽  
Study Participants

This article discusses methodological, ethical, and epistemological issues that arise when research is conducted in a tight-knit network of respondents: in this case, artists in search of fame and recognition, while performing in a tribute band – a relatively downgraded form of music. The study was conducted in Switzerland and used qualitative methodology, consisting mainly of observations of concerts and semi-structured interviews with musicians, cultural intermediaries and audience members. With an aim to contribute to the reflexivity of sociology as a discipline and ideally provide methodological traces for future research in similar conditions, the article first presents the general methodology used in this study. Then, the discussion turns to the uses and difficulties of certain methodological elements such as Howard Becker’s advice on ‘playing dumb’ for obtaining more subtle information, dealing with ‘counter-interpretations’ by study participants, or the extension of research relations to the online realm.

The Development of Measures of Organizational Citizenship Behaviour and Changes in Job Behaviours Related to Quality Management in Health Care

1995 ◽  
Vol 8 (3) ◽  
pp. 143-161 ◽  
Author(s):  
Diane Irvine
Keyword(s):  
Factor Analysis ◽  
Problem Solving ◽  
Organizational Citizenship ◽  
Tertiary Care ◽  
Hospital Setting ◽  
Future Research ◽  
Orthogonal Rotation ◽  
Structured Interviews ◽  
Cronbach Alpha ◽  
Two Factors

A study was conducted at two tertiary care hospitals in Canada for the purpose of developing instruments to measure organizational citizenship behaviours (OCB) and changes in job behaviours that occur as a result of participation on hospital quality improvement (CQI) teams. Semi structured interviews were conducted among 52 hospital employees in order to elicit critical incidents of OCB and changes in job behaviours related to CQI. The results of the staff interviews were used to develop a measure of OCB in the hospital setting, and a measure of changes in job behaviours related to CQI. 39 employees, who were drawn from the major departments within the two hospitals on the basis of their membership on CQI teams, participated in a test of the psychometric properties of the two research instruments. Exploratory factor analysis, employing an orthogonal rotation, yielded two factors that accounted for 30% of the variation among the OCB items. The Cronbach alpha for items loading highly on the first factor was .88. The factor was labelled ‘OCB directed towards individuals within the organization’. This factor was dominated by items reflecting the kinds of extra-role job behaviours employees engage in to assist patients, family members, visitors, and other employees within the organization. The Cronbach alpha for items loading highly on the second factor was 0.71. The second factor was labelled ‘organizationally directed OCB’, and consisted of behaviours that reflected an impersonal form of OCB in the hospital setting. Factor analysis, employing an orthogonal rotation, yielded four factors that accounted for 48% of the variation among the items measuring changes in job behaviours related to CQI. The four factors were labelled ‘problem-solving’, Cronbach alpha 0.82; ‘customer awareness’, Cronbach alpha 0.79; ‘use of CQI knowledge’, Cronbach alpha 0.77; and ‘organizational interests’, Cronbach alpha 0.79. The two OCB factors were moderately correlated, there were no significant correlations among any of the factors measuring changes in job behaviours related to CQI, and the problem-solving job behaviours factor was moderately correlated with the two OCB factors. Directions for future research are discussed.

scholarly journals Researching the Experiences of Children with Cancer: Considerations for Practice

Children ◽  
2019 ◽  
Vol 6 (8) ◽  
pp. 93
Author(s):  
Jessika Boles ◽  
Sarah Daniels
Keyword(s):  
Children And Adolescents ◽  
Developmentally Appropriate ◽  
Research Participation ◽  
Future Research ◽  
Research Participants ◽  
Illness Experiences ◽  
Child Centered ◽  
Conducting Research ◽  
Context Specific ◽  
Positive Outlook

Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as “doubly vulnerable” research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in designing and conducting research with this population; however, these considerations have not been adequately addressed in pediatric healthcare literature. Therefore, the purpose of this review is to describe the research preferences and experiences of children and adolescents with cancer to identify techniques for supporting this population as research participants. By incorporating developmentally appropriate, context-specific, and child-centered adjustments, researchers can help children and adolescents with cancer effectively and meaningfully describe their illness experiences while also developing a positive outlook on future research participation.

scholarly journals Would you like to be contacted about future research?

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Lisa Newington ◽  
Caroline M. Alexander ◽  
Mary Wells
Keyword(s):  
Research Participation ◽  
Healthcare Research ◽  
Future Research ◽  
Research Teams ◽  
Research Opportunities ◽  
Research Participants

AbstractMany research participants are willing to be contacted about future research opportunities, however this question is not always asked. Furthermore, if participants do consent for contact about future research, this information is not always accessible to other research teams. We discuss our experience of recruiting individuals who have previously taken part in healthcare research and suggest potential strategies to support this process and enable greater research participation.

Queering Disability: Exploring the Resilience of Sexual and Gender Minority Persons Living With Disabilities

2020 ◽  
Vol 64 (1) ◽  
pp. 31-41
Author(s):  
Tameeka Hunter ◽  
Franco Dispenza ◽  
Mary Huffstead ◽  
Mackenzie Suttles ◽  
Zachary Bradley
Keyword(s):  
Qualitative Methodology ◽  
Future Research ◽  
Structured Interviews ◽  
Research Directions ◽  
Gender Minority ◽  
Identity Concealment ◽  
Future Research Directions ◽  
Sexual And Gender Minority ◽  
And Gender ◽  
Study Participants

This study examined the resilience experiences of 13 sexual and gender minority persons living with disabilities, using phenomenological qualitative methodology. Researchers used in-depth, semi-structured interviews and various trustworthiness standards in the study. Participants endorsed four common resilience maximizers—self-acceptance, advocacy, social support, and a plea for recognition of humanity (an aspirational resilience maximizer)—and three common resilience minimizers—fragmentation, identity concealment, and punishment. Counseling implications and future research directions are also discussed.

scholarly journals Disclosure and Consent to Medical Research Participation

2015 ◽  
Vol 12 (2) ◽  
pp. 195-219 ◽  
Author(s):  
Danielle Bromwich ◽  
Joseph Millum
Keyword(s):  
Clinical Trials ◽  
Medical Research ◽  
Research Participation ◽  
Consent Process ◽  
Standard View ◽  
Wide Range ◽  
The World ◽  
Valid Consent ◽  
Key Aspects ◽  
Regulations And Guidelines

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it.

‘Who is going to put their life on the line for a dollar? That’s crazy’: community perspectives of financial compensation in clinical research

2021 ◽  
pp. medethics-2020-106715
Author(s):  
Amie Devlin ◽  
Kirsten Brownstein ◽  
Jennifer Goodwin ◽  
Emily Gibeau ◽  
Mariana Pardes ◽  
...  
Keyword(s):  
Clinical Research ◽  
Low Income ◽  
Research Participation ◽  
Semistructured Interview ◽  
Financial Compensation ◽  
Black African ◽  
Research Participants ◽  
Study Results ◽  
Study Participants ◽  
Available Information

BackgroundFinancial compensation of research participants has been standard practice for centuries, however, there is an ongoing debate among researchers and ethicists regarding the ethical nature of this practice. While these debates develop ethical arguments and theories, they fail to incorporate input from those most affected by financial compensation: potential research participants.MethodsTo identify attitudes surrounding clinical research, participants of a long-standing cohort completed a one-time interview. Open-ended questions stimulated a participant-driven discussion surrounding medical research. Following a grounded theory methodology, 58 semistructured interview transcripts were coded, focusing on attitudes surrounding financial compensation of research participants.ResultsOf the interviews coded, the majority of participants identified as Black/African American (n=44) and were women (n=40). Five major themes emerged. In support of financial compensation, participants felt that study participants should be compensated for time, effort and risk. However, participants were concerned that compensation may differentially impact low-income populations and entice them to hide potentially harmful side effects. Participants also mentioned that financial compensation may invalidate study results if participants knowingly provide false information to subvert inclusion/exclusion criteria.ConclusionThe emergence of both positive and negative themes reiterates the complicated issue of providing financial compensation for study participation. While compensation as a motivator for research participation raises ethical concerns, participants discussed weighing the benefits with the risks in order to make an informed decision. To avoid paternalistic behaviours, research staff must allow potential research participants to review the available information and make the decision that best reflects their wishes.

Speech-Language Pathologists' Comfort Level With Use of Term “Stuttering” During Evaluations

2020 ◽  
Vol 29 (2) ◽  
pp. 841-850 ◽  
Author(s):  
Courtney T. Byrd ◽  
Danielle Werle ◽  
Kenneth O. St. Louis
Keyword(s):  
Communication Disorders ◽  
Academic Experiences ◽  
Comfort Level ◽  
Future Research ◽  
Clinical Experiences ◽  
Speech Language Pathologists ◽  
Comfort Levels ◽  
Parents And Children ◽  
Evaluation Feedback ◽  
Study Participants

Purpose Speech-language pathologists (SLPs) anecdotally report concern that their interactions with a child who stutters, including even the use of the term “stuttering,” might contribute to negative affective, behavioral, and cognitive consequences. This study investigated SLPs' comfort in providing a diagnosis of “stuttering” to children's parents/caregivers, as compared to other commonly diagnosed developmental communication disorders. Method One hundred forty-one school-based SLPs participated in this study. Participants were randomly assigned to one of two vignettes detailing an evaluation feedback session. Then, participants rated their level of comfort disclosing diagnostic terms to parents/caregivers. Participants provided rationale for their ratings and answered various questions regarding academic and clinical experiences to identify factors that may have influenced ratings. Results SLPs were significantly less likely to feel comfortable using the term “stuttering” compared to other communication disorders. Thematic responses revealed increased experience with a specific speech-language population was related to higher comfort levels with using its diagnostic term. Additionally, knowing a person who stutters predicted greater comfort levels as compared to other clinical and academic experiences. Conclusions SLPs were significantly less comfortable relaying the diagnosis “stuttering” to families compared to other speech-language diagnoses. Given the potential deleterious effects of avoidance of this term for both parents and children who stutter, future research should explore whether increased exposure to persons who stutter of all ages systematically improves comfort level with the use of this term.

Significados de Morte: o Discurso do Sujeito Coletivo da Enfermagem / Meaning of Death: the collective subject speech of the nursing staff

1970 ◽  
Vol 6 (1) ◽  
pp. 52-58
Author(s):  
Fellipe Afonso de Azevedo ◽  
Noé D’jalma Araújo ◽  
Néliton Célio de Novais ◽  
José Vítor da Silva ◽  
Renato Augusto Passos
Keyword(s):  
Nursing Staff ◽  
Hospital Setting ◽  
Field Research ◽  
Structured Interview ◽  
Minas Gerais ◽  
Structured Interviews ◽  
Cross Sectional ◽  
Emergency Units ◽  
Methodological Guidelines

RESUMOObjetivo: o presente trabalho teve como objetivo identificar os significados de morte emergentes das equipes de enfermagem que atuam nas unidades de Pronto Socorro e Unidade de Terapia Intensiva (UTI) em uma entidade de médio porte situada no Sul de Minas Gerais. Materiais e métodos: estudo de abordagem qualitativa, do tipo descritivo, de campo e transversal. A amostra estudada foi composta de oito enfermeiros, 22 técnicos e quatro auxiliares de enfermagem, totalizando 34 profissionais, sendo utilizado o instrumento de caracterização pessoal e profissional da equipe de enfermagem e o roteiro de entrevista semiestruturada. A amostragem foi proposital. A coleta de dados foi realizada através de entrevista semiestruturada, gravada e transcrita. As diretrizes metodológicas do Discurso do Sujeito Coletivo foram utilizadas para a seleção das ideias centrais e expressões-chave correspondentes, a partir das quais foram extraídos os discursos dos sujeitos, no cenário da instituição hospitalar. Resultados e Discussão: ao analisar o tema “significados de morte”, obtiveram-se as seguintes ideias centrais: “passagem”, “diversos significados”, “fim da vida” e “fim e começo de outra vida”. Conclusão: As concepções acerca do tema morte para os profissionais participantes deste trabalho reforça a necessidade de estudos sobre o tema durante a formação acadêmica. Certos de que irão vivenciar este tipo de situação no dia-a-dia profissional, é preciso prepará-los psicologicamente para isso.Palavras-chave: Morte, Equipe de enfermagem, Assistência ao paciente.ABSTRACTObjective: This study aimed to identify the meanings of emerging death of the nursing staff working in the Emergency Units and Intensive Care Unit (ICU) in a medium-sized entity located in southern Minas Gerais. Materials and methods: A cross-sectional qualitative field research. The sample was composed of 8 nurses, 22 technicians and 4 nursing assistants, totaling 34 professionals. It was used a tool of personal and professional characterization of the nursing team and a semi-structured interview. Sampling was intentional. Data collection was conducted through semi-structured interviews, that were recorded and transcribed. The methodological guidelines of the Collective Subject Speech were used for the selection of the central ideas and corresponding key expressions, from which the speeches of the subjects were taken, in the hospital setting. Results and discussion: to examine the topic "death meanings" yielded the following core ideas: "pass", "different meanings", "end of life" and "end and beginning of another life." Conclusion: The conceptions about the death theme for the professional participants of this study reinforces the need for studies on the subject during their academic training. It is certain that they will experience this type of situation on their daily professional routine, therefore there is a need to prepare them psychologically for this.Keywords: Death, Nursing staff, Patient care.

scholarly journals Mapping domain characteristics influencing Analytics initiatives: The example of Supply Chain Analytics

2020 ◽  
Vol 13 (1) ◽  
pp. 56
Author(s):  
Tino Herden
Keyword(s):  
Supply Chain ◽  
Supply Chain Management ◽  
Success Factors ◽  
Research Collaboration ◽  
Future Research ◽  
Structured Interviews ◽  
Chain Management ◽  
Domain Specific ◽  
The Status ◽  
The Impact

Purpose: Analytics research is increasingly divided by the domains Analytics is applied to. Literature offers little understanding whether aspects such as success factors, barriers and management of Analytics must be investigated domain-specific, while the execution of Analytics initiatives is similar across domains and similar issues occur. This article investigates characteristics of the execution of Analytics initiatives that are distinct in domains and can guide future research collaboration and focus. The research was conducted on the example of Logistics and Supply Chain Management and the respective domain-specific Analytics subfield of Supply Chain Analytics. The field of Logistics and Supply Chain Management has been recognized as early adopter of Analytics but has retracted to a midfield position comparing different domains.Design/methodology/approach: This research uses Grounded Theory based on 12 semi-structured Interviews creating a map of domain characteristics based of the paradigm scheme of Strauss and Corbin.Findings: A total of 34 characteristics of Analytics initiatives that distinguish domains in the execution of initiatives were identified, which are mapped and explained. As a blueprint for further research, the domain-specifics of Logistics and Supply Chain Management are presented and discussed.Originality/value: The results of this research stimulates cross domain research on Analytics issues and prompt research on the identified characteristics with broader understanding of the impact on Analytics initiatives. The also describe the status-quo of Analytics. Further, results help managers control the environment of initiatives and design more successful initiatives.

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