Are you sitting comfortably? Perspectives of the researchers and the researched on "being comfortable"

In a study of volunteers in medical research, we found contrasting readings of "being comfortable" by the volunteer research subjects and the researchers. Although the experimental process (testing a new kind of diagnostic technology) involved some physical discomfort--and the researchers focused on this--the volunteers' concerns centred on feeling socially comfortable and managing feelings of embarrassment or isolation, and they generally made light of the physical aspects. The bias of volunteer concerns, which is understandable in terms of the different situations of researchers and volunteers and the different tensions they create, has potential implications for the engagement of researchers with their research subjects and prevailing standards for the ethical and accountable conduct of research.     

Trained volunteers for families coping with a child with a life-limiting condition

One hundred and seven families with a child diagnosed with a life-limiting condition, from all over Queensland (Australia), were surveyed on their need for a trained volunteer. Their comments provide important insights into an area which has not previously been researched or documented. In summary, their responses indicate that many families have only minimal or no support, and are coping with extraordinary physical, emotional and social demands from the child's condition and treatment. The majority of the participants are very positive about the need for a trained volunteer and are clear about the activities that trained volunteers could provide assistance with. These activities range from practical assistance such as baby-sitting and help with household chores and errands to emotional support. Not all families would be comfortable using a volunteer, and some respondents did outline perceived obstacles to including a volunteer in family activities. For others there were comments about why volunteers would be perceived as unproblematic. Respondents specified important criteria that would need to be addressed in volunteer training. The largest number of respondents were coping with cystic fibrosis and muscular dystrophy. It is the hope and expectation that, with the communication of the insights gathered from this geographically diverse group of families, encouragement will be given to others working in this area to explore the possibility of establishing outreach volunteer programmes for such families.     

Physician duties in the conduct of human subject research

In this article, I examine a skeptical argument against the possibility of ethically justifying risky human subject research (rHSR). That argument asserts that such research is unethical because it holds the possibility of wronging subjects who are harmed and whose consent to participate was less than fully voluntary. I conclude that the skeptical argument is not in the end sufficient to undermine the ethical foundation of rHSR because it fails to take account of the special positive duty researchers owe their clients and future patients. Although the skeptical argument is defeated, it exacts certain novel concessions from the pro‐research position. Of particular importance are the admissions (a) that researchers presumptively owe a fiduciary duty to research subjects, (b) that because the most important risks of rHSR are unknown and unquantifiable that duty must be explicitly waived by all subjects before they participate in any protocol, and (c) that such waivers must be made by individuals who satisfy objective criteria of competence for giving fully voluntary consent. The implementation of procedures responsive to these concerns might have a dampening effect on the conduct of research. However, the article concludes with a consideration of the likely benefits to researchers and society of a more cautious ethical regime.     

Is failure to raise concerns about misconduct a breach of integrity? Researchers’ reflections on reporting misconduct

This article describes and discusses the views of researchers on the significance of raising concerns about scientific misconduct in their work environment and the reasons or circumstances that might deter them from doing so. In this exploratory qualitative research study, we conducted in-depth interviews with 33 researchers working in life sciences and medicine. They represent three seniority levels and five universities across Switzerland. A large majority of respondents in this research study argued that failure to raise concerns about scientific misconduct compromises research integrity. This is an encouraging result demonstrating that researchers try to adhere to high ethical standards. However, further interaction with respondents highlighted that this correct ethical assessment does not lead researchers to take the consequent action of raising concerns. The factors that discourage researchers from raising concerns need to be addressed at the level of research groups, institutions, and by setting a positive precedent which helps them to believe in the system’s ability to investigate concerns raised in a timely and professional manner. Training of researchers in research integrity related issues will have limited utility unless it is coupled with the creation of research culture where raising concerns is a standard practice of scientific and research activities.     

A Regression Analysis of Motivations for Saudi University Male Student Volunteers

Abstract

As a major national asset for promoting social development, volunteer groups have grown rapidly worldwide and have brought significant benefits to individuals, communities, and society in general. Volunteering is encouraged and common among Muslims in the Middle East, but there is rare study on why they volunteer. This study used multiple regression to explore what motivates Saudi male university students to volunteer with a sample of 223 subjects. The results show that all predictor variables such as pro-social personality, values function, career function, social function, enhancement function, protective function, and learning function of volunteering, community identity, institutional facilitation, and Islamic cultural motivation, are statistically significantly correlated to students’ volunteering intentions, but these factors contribute to the ordinary least square regression model at different levels. Only career (B?=?0.217), social (B?=?0.212), learning (B?=?0.280), and enhancement functions (B?=?0.230) of volunteering have statistically significant influence on Saudi university male students’ volunteering intention. Findings highlight a need for a focus on instrumental needs of volunteers by government and NGOs. In regards to future research, gender and educational impacts on volunteers’ motive should be explored.     

The therapeutic misconception,beneficence, and respect

In order to provide benefits to society, human medical trials must place subjects at risk of harm. This activity is thought to be justified in part by the consent of the subjects involved. But, studies have shown that most such consents are based on a therapeutic misconception (TM); the false belief of subjects that their researchers will act as their personal physicians (seeking their benefit and protecting them from harm), rather than placing them at risk of harm for the good of others. Toleration by researchers of the TM in their subjects is a form of “informational manipulation”; that renders consent procedures disrespectful to subject autonomy. Consent obtained from subjects who labor under a TM is neither voluntary nor informed; as long as they have not been disabused of the TM, the action they take in enrolling in a trial is not the one they intend nor is it autonomously chosen. Changes in consent procedures should be adopted to ensure that all subjects are aware inter alia that (a) the health interests of future patients (as well as the researchers’ and their sponsors’ financial interests) may be more important to researchers than the interest of a subject in his or her health, and (b) normal subjects neither understand nor believe this when told. Close attention to the response of prospective subjects to this information should allow for the exclusion of all but the truly altruistic. However, the result of conscientious implementation of such policies would likely be that human medical research could no longer be conducted on more than a minimal level.     

Student Projects in Medicine: A Lesson in Science and Ethics

Regulation of biomedical research is the subject of considerable debate in the bioethics and health policy worlds. The ethics and governance of medical student projects is becoming an increasingly important topic in its own right, especially in the U.K., where there are periodic calls to change it. My main claim is that there seems to be no good reason for treating student projects differently from projects led by qualified and more experienced scientists and hence no good grounds for changing the current system of ethics review. I first suggest that the educational objectives cannot be met without laying down standards of good science, whatever they may be. Weak science is unnecessary for educational purposes, and it is, in any case, unlikely to produce good researchers in the future. Furthermore, it is curious to want to change the system of ethics review specifically for students when it is the science that is at stake, and when the science now falls largely outside the ethics remit. I further show that ethics review is nevertheless important since students carry a new potential conflict of interests that warrants independent oversight which supervisory support does not offer. This potential conflict may become more morally troublesome the greater the risks to the subjects of the research, and students may impose greater risks on their subjects (relative to professional researchers) by virtue of being inexperienced, whatever the nature of the project. Pragmatic concerns may finally be allayed by organizing the current system more efficiently at critical times of the university calendar.     

Research ethics and clinical trials: Fostering collaboration with research participants

Accountability in research is a concept that applies to researchers and study participants alike. Human subjects play an active part in the success or failure of a clinical trial by virtue of their understanding of a study's goals expectations of personal gain, and adherence to study design. Trials must be designed to address patient concerns, offer an improved consent process, and move beyond our narrow conception of “patient rights.”; Problems with protocol adherence may be reduced by conceptualizing clinical research as an endeavor with mutual accountability within a relational ethic.     

The ABCE Model of Volunteer Motivation

To meet the growing social service needs of our societies, the social services and other Volunteer organizations need to understand the needs and motives of their volunteers to keep them retained. Although volunteer motivation scales are available and tested, different organizations have to amend and add volunteering motives to best fit their organization and environment. Furthermore, not much guidance is available to volunteer organizations to understand or measure motivation of their volunteers raising a need for a unified model that can be a guideline for managers. This study discusses different approaches to volunteering motivation and links them into four areas of affiliation using an ABCE model: affiliation (A), beliefs, (B) career development, (C) and (E) egoistic. Participants were 496 volunteers from a variety of NGOs including 239 (48.2%) from an international Faith Based Organization (FBO). Findings show that although differences exist in volunteering motivation the actual best fit was an ABCE model. Future research is needed on testing the scale with different cultures and different organizations. A deeper knowledge of volunteer motivations will enable organizations to prosper and utilize the continuous experience of the volunteers and their engagement, thereby ensuring enhanced quality social service delivery.     

Physician duties in the conduct of human subject research

In this article, I examine a skeptical argument against the possibility of ethically justifying risky human subject research (rHSR). That argument asserts that such research is unethical because it holds the possibility of wronging subjects who are harmed and whose consent to participate was less than fully voluntary. I conclude that the skeptical argument is not in the end sufficient to undermine the ethical foundation of rHSR because it fails to take account of the special positive duty researchers owe their clients and future patients. Although the skeptical argument is defeated, it exacts certain novel concessions from the pro-research position. Of particular importance are the admissions (a) that researchers presumptively owe a fiduciary duty to research subjects, (b) that because the most important risks of rHSR are unknown and unquantifiable that duty must be explicitly waived by all subjects before they participate in any protocol, and (c) that such waivers must be made by individuals who satisfy objective criteria of competence for giving fully voluntary consent. The implementation of procedures responsive to these concerns might have a dampening effect on the conduct of research. However, the article concludes with a consideration of the likely benefits to researchers and society of a more cautious ethical regime.     

Safety First: Recognizing and Managing the Risks to Child Participants in Magnetic Resonance Imaging Research

Specialized and up-to-date knowledge is required to identify and manage the risks associated with advanced biomedical research. Additional complexities need to be considered when the research involves infants or young children. In this article, we focus on recent information about the physical risks of pediatric magnetic resonance imaging research and highlight information gaps. With an eye to assisting institutional review boards and researchers, we consider strategies for the management of these risks and formulate key questions aimed at exposing hidden hazards. Institutional review boards should ask these questions, and researchers should bear them in mind as they develop research protocols.     

Contributions of Volunteer Networking to Isolated Seniors in Hong Kong

Abstract

Although research and theory suggest that volunteers contribute to the quality of life of senior people whom they serve, rigorous empirical investigation is missing for senior Hong Kong Chinese. A project that recruits, trains, and matches volunteers for isolated and frail senior Hong Kong Chinese is good for the investigation because it represents a new approach. This study employed a two-wave panel design to collect data from 125 users of the volunteer networking project. Its results demonstrate that volunteer input, in terms of contact intensity and helpfulness, significantly contributed to Wave 2 quality-of-life outcomes, including reduction in worry, increase in community knowledge, and social integration given the control of their prior scores. Nevertheless, volunteer input had no significant effects on the senior visitee's health.     

Participation in Science Service: Factors Influencing Volunteers’ Intentions

In spite of previous researches in large-scale volunteerisms have explored volunteer’s theory of planned behavior (TPB), little has been known concerning the scale development of volunteers’ Satisfaction and Motivation in related to science volunteer service. This study tested an expanded TPB model with a sample of 443 volunteers taken from a project for science volunteers run by the Ministry of Science and Technology in Taiwan. To explore volunteers’ perspectives on their involvement in science service, structured questionnaires examined their attitudes, subjective norms, perceived behavioral control, Satisfaction and motivation via continued observation throughout the duration of the project. The findings from the path analyses suggest that the TPB is a useful tool for understanding event volunteers’ intention. In addition, Satisfaction emerged as the exclusive determinant of sustained volunteering and also as the potential predictor of the effects of other variables on future volunteering behavior. However, it was found that the science volunteers’ motivation had significant negative correlation with behavioral intention. In general, the expanded model of TBP provided an appropriate framework for understanding the factors associated with volunteering. Practical implications and future research directions for science volunteer management are also discussed.     

Type of Volunteer Experience and Health Among Older Adult Volunteers

Abstract

The purpose of this investigation was to ascertain if the type of volunteer experience was related to the physical health or psychological well-being of older adult volunteers. A central pattern emerged from the data: the type of, as well as the number of, hours donated to a volunteer activity were associated with psychological well-being. Implications for social workers involved with volunteer programs and services are discussed in terms of volunteer recruitment and retention, and the need to develop more significant volunteer roles, especially for low-income older adults.     

Measuring the Propensity to Volunteer

As charities are expected to take on more and more of the provision of services to the disadvantaged, they will be calling on volunteers to support that work. The use of volunteers means important cost savings when compared to the use of paid service providers, thus giving one advantage to the voluntary sector when bidding in the mixed economy of welfare. Given the potential for increased use of volunteers, questions of motivation and commitment become very important. Volunteers make up a significant proportion of the human resources used to service social needs, yet previous research has not made it clear why and how volunteers come to give so much of themselves. This research demonstrates that there is an underlying Volunteerism–Activism Attitude which can be measured, and which holds within its four dimensions the key motivations for volunteering. Use of the scale measuring this attitude allows prediction of those people who are most likely (and least likely) to volunteer for charity activity. For charities the scale might provide a useful tool in managing the personnel with whom they are now expected to bid in the quasi-markets of service provision.     

‘How come I don’t get asked no questions?’ Researching ‘hard to reach’ children and teenagers

This article discusses two related areas of research practice with children and young people that have received less attention in the literature than they might. The first is working with children and teenagers for whom the traditional, discursive nature of interview‐based research is less accessible. The second is the disinclination of researchers to report on difficulties in the research process. As researchers, we scanned the literature for assistance for some of the problems we encountered, with little reward. In describing everyday problems (and some of our – still developing – solutions) we hope to encourage more dialogue on the uncomfortable realities of the research process, and how we might improve research practice, making it a more fruitful exercise for researchers, and a more enjoyable one for children and teenagers.     

Researchers’ interpretations of research integrity: A qualitative study

Despite increasing interest in integrity issues, relatively few studies have examined researchers’ own interpretations of integrity. As part of the Perspectives on Research Integrity in Science and Medicine (PRISM) project, we sought to explore how researchers themselves define research integrity. We conducted 33 semi-structured interviews with clinical and laboratory-based researchers from across Switzerland. Data were transcribed and coded using thematic analysis and illustrative quotes were selected. Researchers defined integrity in terms of honesty, transparency, and objectivity, and generally stressed the importance of sticking to the research question and avoiding bias in data interpretation. Some saw research integrity as being synonymous with scientific integrity, but others regarded research integrity as being a subset of the wider domain of scientific integrity. A few participants equated research integrity with mere absence of misconduct, but the majority of participants regarded integrity as being more than this. Researchers regarded truth as the key aspect of integrity, though they expressed this in different ways and with various emphases on honesty, transparency, and objectivity. Integrity goes beyond avoiding misconduct, and scientific integrity has a wider domain than research integrity.     

Malaysian researchers talk about the influence of culture on research misconduct in higher learning institutions

Based on a previous survey by the Office of Research Integrity (ORI) in the USA, a considerable number of foreign research scientists have been found guilty of research misconduct. However, it remains unclear as to whether or not cultural factors really contribute to research misconduct. This study is based on a series of interviews with Malaysian researchers from the local universities regarding their own professional experiences involving working with researchers or research students from different countries or of different nationalities. Most of the researchers interviewed agreed that cultures do shape individual character, which influences the way that such individuals conduct research, their decision-making, and their style of academic writing. Our findings also showed that working culture within the institution also influences research practices, as well as faculty mentorship of the younger generation of researchers. Given the fact such misconduct might be due to a lack of understanding of research or working cultures or practices within the institution, the impact on the scientific community and on society could be destructive. Therefore, it is suggested that the institution has an important role to play in orienting foreign researchers through training, mentoring, and discussion with regard to the “does” and “don’ts” related to research, and to provide them with an awareness of the importance of ethics when it comes to conducting research.     

Disseminating research results to kids: practical tips from the Neighbourhoods for Active Kids study

ABSTRACT

Appropriately disseminating results to children are important because it respects the role they played in the research process. Clearly conveying complex messages to children, however, can be challenging and take a substantial amount of time for researchers. This paper reports on the results dissemination processes and accompanying critical reflection, that occurred during Neighbourhoods for Active Kids study – a community-based health research project with 1102 children aged 8–13 years residing in Auckland, Aotearoa/New Zealand. The results dissemination items included: an individual physical activity and food-purchasing behaviour summary, school physical activity and food-purchasing behaviour summary, colouring-in poster, a video, comic, results booklet, school summary report and school data. The results from critical reflection have been developed into five tips for disseminating results to children. The tips are: consult with children and incorporate their feedback throughout; allow space for change and adaptation; meet children where they are at in the digital world and in the physical world; it’s OK to ask for help; and be careful of the words you use. Findings can be used to inform results dissemination activities across a range of social science disciplines.     

A Study Exploring Risk Management Issues Among Volunteers in an Oncology Support Program

ABSTRACT. Risk management and challenges of volunteer roles in an oncology support program in Montreal, Canada, were explored using a phenomenological approach involving 65 service volunteers. Fourteen focus groups were held representing oncology services in the hospital and the wellness center. Self-reported questions were administered to assess the risks perceived by the volunteers. Findings revealed 4 major themes: comfort level, daily frustrations, risk and environmental issues, and suggestions. Suggestions included: better communication with staff, a safer health-related environment, and improved role-specific training to mitigate the risks. Additionally, for each group, 1 specific change was implemented during a 6-month period. Health care professionals should focus on job-training issues to address safety, comfort level, and role capacity. Future research should investigate an enhanced training curriculum with strategies to address concerns about risk management. Volunteers who are better equipped to perform their roles will be able to offer a higher quality of service to patients and families.