"Academic value of research participation by undergraduates": Comment on Coulter and on Daniel.

1987 ◽  
Vol 42 (3) ◽  
pp. 268-269 ◽  
Author(s):  
Bruce K. Britton
Keyword(s):  
Research Participation

Research Participation Experiences of Informants of Suicide and Control Cases

Crisis ◽  
2010 ◽  
Vol 31 (5) ◽  
pp. 238-246 ◽  
Author(s):  
Paul W. C. Wong ◽  
Wincy S. C. Chan ◽  
Philip S. L. Beh ◽  
Fiona W. S. Yau ◽  
Paul S. F. Yip ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Research Participation ◽  
Self Report ◽  
Initial Contact ◽  
Psychological Autopsy ◽  
Autopsy Study ◽  
The People ◽  
And Control ◽  
The Impact

Background: Ethical issues have been raised about using the psychological autopsy approach in the study of suicide. The impact on informants of control cases who participated in case-control psychological autopsy studies has not been investigated. Aims: (1) To investigate whether informants of suicide cases recruited by two approaches (coroners’ court and public mortuaries) respond differently to the initial contact by the research team. (2) To explore the reactions, reasons for participation, and comments of both the informants of suicide and control cases to psychological autopsy interviews. (3) To investigate the impact of the interviews on informants of suicide cases about a month after the interviews. Methods: A self-report questionnaire was used for the informants of both suicide and control cases. Telephone follow-up interviews were conducted with the informants of suicide cases. Results: The majority of the informants of suicide cases, regardless of the initial route of contact, as well as the control cases were positive about being approached to take part in the study. A minority of informants of suicide and control cases found the experience of talking about their family member to be more upsetting than expected. The telephone follow-up interviews showed that none of the informants of suicide cases reported being distressed by the psychological autopsy interviews. Limitations: The acceptance rate for our original psychological autopsy study was modest. Conclusions: The findings of this study are useful for future participants and researchers in measuring the potential benefits and risks of participating in similar sensitive research. Psychological autopsy interviews may be utilized as an active engagement approach to reach out to the people bereaved by suicide, especially in places where the postvention work is underdeveloped.

Barriers and facilitators to conducting research by early career psychiatrists: a literature review

2019 ◽  
Vol 2 (2) ◽  
pp. 135-154
Author(s):  
Katja Koelkebeck ◽  
Maja Pantovic Stefanovic ◽  
Dorota Frydecka ◽  
Claudia Palumbo ◽  
Olivier Andlauer ◽  
...  
Keyword(s):  
Research Participation ◽  
Early Career ◽  
Cochrane Library ◽  
Inclusion Criteria ◽  
Research Career ◽  
Hand Search ◽  
Electronic Search ◽  
Conducting Research ◽  
The Cochrane Library ◽  
To Receive

AbstractObjectivesTo understand and identify factors that promote and prevent research participation among early career psychiatrists (ECPs), in order to understand what would encourage more ECPs to pursue a research career.MethodsWe conducted an electronic search of databases (PubMed and the Cochrane library) using the keywords ‘doctors’, ‘trainees’, ‘residents’, ‘physicians’ and ‘psychiatric trainees’ as well as ‘research’ (MeSH) and ‘publishing’ (MeSH). This search was complemented by a secondary hand search.ResultsWe identified 524 articles, of which 16 fulfilled inclusion criteria for this review. The main barriers included lack of dedicated time for research, lack of mentoring and lack of funding. The main facilitators were opportunities to receive mentorship and access to research funding.ConclusionsAction is needed to counteract the lack of ECPs interested in a career in research. Specific programs encouraging ECPs to pursue research careers and having access to mentors could help increase the current numbers of researching clinicians in the field.

scholarly journals Muscle quantity and function measurements are acceptable to older adults during and post- hospitalisation: results of a questionnaire-based study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Carly Welch ◽  
Carolyn Greig ◽  
Tahir Masud ◽  
Thomas A. Jackson
Keyword(s):  
Older Adults ◽  
Gait Speed ◽  
Bacterial Infections ◽  
Handgrip Strength ◽  
General Medicine ◽  
Research Participation ◽  
Bioelectrical Impedance ◽  
Impedance Analysis ◽  
Queen Elizabeth Hospital ◽  
Elective Colorectal Surgery

Abstract Background To evaluate the acceptability of handgrip strength, gait speed, quadriceps ultrasound, and Bioelectrical Impedance Analysis (BIA) to older adults conducted during and following hospitalisation. Methods Questionnaire-based study conducted upon completion of prospective cohort study, with follow-up in either Queen Elizabeth Hospital Birmingham (QEHB), UK, or participant’s own home following recent admission to QEHB. Outcome measures were acceptability as defined by total multi-domain score for each test (maximum score 35), and by frailty status. Results Forty adults aged 70 years and older admitted for emergency abdominal surgery, elective colorectal surgery, or acute bacterial infections (general medicine) participated. Handgrip strength (median 33, IQR 30–35; p = 0.001), gait speed (median 32, IQR 30–35; p = 0.002), ultrasound quadriceps (median 33, IQR 31–35; p = 0.001), and BIA (median 33.5, IQR 31–35; p = 0.001) were considered highly acceptable. Participants responded positively that they enjoyed participating in these tests, and considered these tests of importance. There was no difference in scores between tests (p = 0.166). Individual total test scores did not differ between patients with and without frailty. Qualitative data are also presented on drivers for research participation. Conclusions Handgrip strength, gait speed, ultrasound quadriceps, and BIA are acceptable tests to older adults during and following hospitalisation. Our results may serve as standards when evaluating acceptability of other tests. Trial registration Prospectively registered February 2019: https://clinicaltrials.gov/ct2/show/NCT03858192

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

scholarly journals Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
S. Mezinska ◽  
L. Gallagher ◽  
M. Verbrugge ◽  
E.M. Bunnik
Keyword(s):  
Informed Consent ◽  
Neurodevelopmental Disorders ◽  
Cognitive Abilities ◽  
Social Impact ◽  
Mental Health Problems ◽  
Ethical Issues ◽  
Family Members ◽  
Genetic Diagnosis ◽  
Research Participation ◽  
Genomic Research

Abstract Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

Immediate and Delayed Reactions to Trauma-related Laboratory Research Among Rape Survivors and Controls

2021 ◽  
pp. 155626462199610
Author(s):  
Steven R. Lawyer ◽  
Brittney M. Holcomb ◽  
Kateřina Příhodová
Keyword(s):  
Mental Health ◽  
Research Participation ◽  
Emotional Reactions ◽  
Laboratory Research ◽  
Trauma Research ◽  
Rape Survivors ◽  
Ethical Implications ◽  
Posttraumatic Stress Disorder Symptoms ◽  
Benefit Cost ◽  
First Session

Ethical implications of laboratory-based experimental trauma research are not well studied. Female rape survivors ( N = 62) and controls ( N = 79) listened to an audio recording of a sexual assault and completed mental health measures and the Reactions to Research Participation Questionnaire-Revised in the first session and again several weeks later. In the first session, mental health symptoms were associated with stronger emotional reactions and personal benefits from participation. Rape survivors also reported stronger emotional reactions than controls, but also more personal benefits, more satisfaction, and fewer perceived drawbacks from participation. Several weeks later, both groups reported diminished posttraumatic stress disorder symptoms and rape survivors’ reports of stronger emotional reactions and greater satisfaction with their participation remained significant. Benefit–cost ratios indicate positive responses to participation across groups and time. Findings suggest significant benefits to laboratory trauma research for participants.

scholarly journals Transforming Gerontological Research by Meaningfully Engaging Persons Living With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 728-728
Author(s):  
Michael Lepore ◽  
Richard Fortinsky
Keyword(s):  
Research Participation ◽  
The United States ◽  
International Studies ◽  
Care Services ◽  
Care Partners ◽  
Gerontological Research ◽  
Scientific Meetings ◽  
Conducting Research ◽  
Services And Supports ◽  
Study Designs

Abstract Whereas persons living with dementia have commonly been subjects of gerontological research, participation of persons with dementia in designing and conducting studies and in scientific research meetings has been rare in the United States. In recent years, person-centered research models have arisen which give persons with dementia and their caregivers core roles in the research enterprise. As “co-researchers” with academic/professional researchers, persons with dementia and their caregivers are engaged in all aspects of the research enterprise, jointly developing research questions and study designs, collecting and analyzing data, planning research meetings, and disseminating results. International studies have shown that conducting research in collaboration with the population that is being studied has potential to enhance the quality and appropriateness of research and has been identified as an essential component of studies examining the effectiveness of different approaches to care. This session spotlights innovative advances in gerontological research that meaningfully engages persons with dementia. First, the engagement of persons with dementia in scientific meetings is addressed drawing on the examples of the 2017 and 2020 National Research Summits on Care Services and Supports for Persons with Dementia and their Caregivers (i.e., Summits). Next, a study using a patient engagement framework for caregivers and individuals with mild cognitive impairment living at home is discussed. Finally, the Empowering Partnerships program, which prepares researchers, persons with dementia, and care partners to collaborate in conducting research is reviewed. Outcomes and challenges of these innovations are examined, and the need for academic/professional researcher roles to evolve is discussed.

scholarly journals Recruiting for research on sensitive topics in schools: an experience with Vaxcards, a collectable vaccine card game

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
D. S. Epstein ◽  
J. C. Enticott ◽  
H. J. Larson ◽  
C. Barton
Keyword(s):  
Research Team ◽  
Controlled Trial ◽  
Contact Point ◽  
Research Participation ◽  
Cluster Randomised Controlled Trial ◽  
Trial Registration ◽  
Card Game ◽  
Successful Recruitment ◽  
Sensitive Topics ◽  
Randomised Controlled

Abstract Undertaking recruitment for research in schools is an effective way to recruit young people for research participation but it is not without its challenges. Gaining access and coordinating many levels of different organisations and stakeholders whose cooperation and approval are crucial all add time and sometimes logistical challenges for the research team. In addition, recruiting around sensitive research topics can elicit additional barriers to successful research. The research team aimed to conduct a pragmatic cluster randomised controlled trial involving schools in a local government region in Victoria, Australia, to assess the effect of a vaccination-based educational card game called “Vaxcards” on vaccine consent returns. Schools were contacted via phone and email to determine which staff member would best be a contact point for a face-to-face meeting to discuss the methods and purpose of the study. Email follow-ups were scheduled to follow up non-responsive schools and consent forms. The minimum required sample size was 13. Of 31 eligible schools, 13 were recruited. The research team encountered several unanticipated challenges before achieving the recruitment target. The most common reasons for non-participation were being too busy with other commitments, concerns regarding the topic of vaccination being too sensitive, and concerns that key stakeholders in the school would not approve of the research topic of vaccination. One school required a review by a private research ethics board that rejected the study. Significant hesitancy and misinformation about vaccine science was observed that affected engagement with a small number of schools. This paper highlights the challenges of recruiting schools in the context of public anxieties about vaccines and has several important learning lessons for successful recruitment about sensitive topics. This includes navigating approval processes for research in schools, the importance of local champions, dealing with misinformation and the importance of strong relationships and organisational trust. Trial registration Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12618001753246. Prospectively registered on 25 October 2018 8:24:21 AM

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