ABSTRACT Objectives: the purpose of this study is to explore laypersons’ attitudes towards and experiences of medical research, and to compare them with those of physicians in Japan. Designs and Participants: fourteen Japanese adults from the general public and seven physicians participated in one of three focus interviews. Setting: Osaka, Japan. Results: trust and distrust in the physician by whom the participants were invited to participate in research played a considerable role in their decisions about participation. That the participants (...) felt an obligation to participate was also expressed. The lay participants perceived medical research as something entirely outside of their world. A greater willingness to volunteer for research was expressed if there were direct benefits to themselves or their families. Research methods such as use of placebos, double blinds, and randomisations seemed to cause negative attitudes to medical research. All physicians were convinced of the need for medical research, including double‐blinded randomised control trials, and its significant role in medical progress. Most physicians thought that the greater awareness of the need for medical research in the community and a better understanding of the psychology of potential research participants were necessary and urgent. Conclusions: there is a good possibility that the lay public and medical professionals have sharply different beliefs about and attitudes towards every aspect of medical research. Building up a better and equal patient‐doctor relationship based on trust is a key issue in medical research, and it is mandatory to fill the gap in perception regarding medical research between them through fully informed debates. (shrink)

Despite recommendations for a more reflexive and theoretical turn to interviewing, the analysis of language and speech still occupies center stage. This study attempts to advance our understanding of the interview by including the use of gesture, gaze, and other embodied resources in concert with speech. Looking at a focus group interview evaluating community policing policy, I show how inclusion of embodied conduct offers a more robust approach to co-constructed meaning in the interview than looking (...) at language practices alone. More explicitly, I investigate how an interviewee’s narrative includes gestures to solicit an affiliative stance from other interviewees and how ambiguous metacommunicative norms in the focus group influence the contributions of other police participants. I show how jurisdictional boundary and professional identity emerge in and through the integration of embodied conduct and sociocultural solidarity. (shrink)

The purposes of this study are (a) to establish a measurement for evaluating conversational impressions of group discussions, and (b) to make an exploratory investigation on their interactional processes which may affect to form those impressions. The impression rating and factor analysis undertaken first give us four factors concerning conversational impressions of “focus group interviews (FGIs)”: conversational activeness, conversational sequencing, the attitudes of participants and the relationships of participants. In relation to the factors of conversational activeness and (...) conversational sequencing in particular, the microanalysis of four selected topical scenes from our database further shows that the behavior of the moderator and the interviewees is organized not independently but with reference to each other. The study thus emphasizes the importance of the integration of quantitative and qualitative approaches towards human interactions. (shrink)

Background The purpose of this study is to explore laypersons' attitudes toward the use of archived (existing) materials such as medical records and biological samples and to compare them with the attitudes of physicians who are involved in medical research. Methods Three focus group interviews were conducted, in which seven Japanese male members of the general public, seven female members of the general public and seven physicians participated. Results It was revealed that the lay public expressed diverse attitudes (...) towards the use of archived information and samples without informed consent. Protecting a subject's privacy, maintaining confidentiality, and communicating the outcomes of studies to research subjects were regarded as essential preconditions if researchers were to have access to archived information and samples used for research without the specific informed consent of the subjects who provided the material. Although participating physicians thought that some kind of prior permission from subjects was desirable, they pointed out the difficulties involved in obtaining individual informed consent in each case. Conclusions The present preliminary study indicates that the lay public and medical professionals may have different attitudes towards the use of archived information and samples without specific informed consent. This hypothesis, however, is derived from our focus groups interviews, and requires validation through research using a larger sample. (shrink)

BackgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.MethodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in (...) the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.ResultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL.ConclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings. (shrink)

Scholars of ethnomethodologically informed discourse studies are often sceptical of the use of interview data such as focus group data. Some scholars quite simply reject interview data with reference to a general preference for so-called naturally occurring data. Other scholars acknowledge that interview data can be of some use if the distinction between natural and contrived data is given up and replaced with a distinction between interview data as topic or as resource. In greater (...) detail, such scholars argue that interview data are perfectly adequate if the researcher wants to study the topic of interview interaction, but inadequate as data for studying phenomena that go beyond the phenomenon of interview interaction. Neither of these more and less sceptical positions are, on the face of it, surprising due to the ethnomethodological commitment to study social order as accomplished in situ, not as something that pre-exists or goes beyond the situated interaction. This article, however, challenges not only the first, but also the second position and suggests that it is, after all, possible to do committedly ethnomethodological studies of focus group data that demonstrate how members of a focus group setting accomplish certain rational orders, and, significantly, how they do so by utilizing certain available resources. (shrink)

Professionals within the mental health services face many ethical dilemmas and challenging situations regarding the use of coercion. The purpose of this study was to evaluate the significance of participating in systematic ethics reflection groups focusing on ethical challenges related to coercion. In 2013 and 2014, 20 focus group interviews with 127 participants were conducted. The interviews were tape recorded and transcribed verbatim. The analysis is inspired by the concept of ‘bricolage’ which means our approach was inductive. Most (...) participants report positive experiences with participating in ethics reflection groups: A systematic and well-structured approach to discuss ethical challenges, increased consciousness of formal and informal coercion, a possibility to challenge problematic concepts, attitudes and practices, improved professional competence and confidence, greater trust within the team, more constructive disagreement and room for internal critique, less judgmental reactions and more reasoned approaches, and identification of potential for improvement and alternative courses of action. On several wards, the participation of psychiatrists and psychologists in the reflection groups was missing. The impact of the perceived lack of safety in reflection groups should not be underestimated. Sometimes the method for ethics reflection was utilised in a rigid way. Direct involvement of patients and family was missing. This focus group study indicates the potential of ethics reflection groups to create a moral space in the workplace that promotes critical, reflective and collaborative moral deliberations. Future research, with other designs and methodologies, is needed to further investigate the impact of ethics reflection groups on improving health care practices. (shrink)

The research climate plays a key role in fostering integrity in research. However, little is known about what constitutes a responsible research climate. We investigated academic researchers’ perceptions on this through focus group interviews. We recruited researchers from the Vrije Universiteit Amsterdam and the Amsterdam University Medical Center to participate in focus group discussions that consisted of researchers from similar academic ranks and disciplinary fields. We asked participants to reflect on the characteristics of a responsible research (...) climate, the barriers they perceived and which interventions they thought fruitful to improve the research climate. Discussions were recorded and transcribed at verbatim. We used inductive content analysis to analyse the focus group transcripts. We conducted 12 focus groups with 61 researchers in total. We identified fair evaluation, openness, sufficient time, integrity, trust and freedom to be mentioned as important characteristics of a responsible research climate. Main perceived barriers were lack of support, unfair evaluation policies, normalization of overwork and insufficient supervision of early career researchers. Possible interventions suggested by the participants centered around improving support, discussing expectations and improving the quality of supervision. Some of the elements of a responsible research climate identified by participants are reflected in national and international codes of conduct, such as trust and openness. Although it may seem hard to change the research climate, we believe that the realisation that the research climate is suboptimal should provide the impetus for change informed by researchers’ experiences and opinions. (shrink)

Detection of Alzheimer’s disease in an early stage is receiving increasing attention for a number of reasons, such as the failure of drug trials in more advanced disease stages, the demographic evolution, the financial impact of AD, and the approval of amyloid tracers for clinical use. Five focus group interviews with stakeholders were conducted.. The verbatim transcripts were analysed via the Nvivo 11 software. Most stakeholder groups wanted to know their own amyloid PET scan result. However, differences occurred (...) between FGs: two groups wanted to know, whilst in the three other groups FG members opted not to know or were still in doubt about their decision. Stakeholders provided insight into their reasons for wanting to know their amyloid PET scan result, for not wanting to know their result, or why they were in doubt about their decision. Several advantages and disadvantages were mentioned as part of knowing their amyloid PET scan result. Certain considerations were clustered in a grey zone, in between advantage and disadvantage, such as the emotional consequences. Clinicians, researchers, and policymakers ought to be aware of the diversity of reasons for wanting to know their result and how possible benefits and risks can be viewed differently. The current findings are of importance for future early diagnosis and disclosure of results in the research setting. (shrink)

In recent years, the attention on the use of coercion in mental health care has increased. The use of coercion is common and controversial, and involves many complex ethical challenges. The research question in this study was: What kind of ethical challenges related to the use of coercion do health care practitioners face in their daily clinical work?

Informed consent and confidentiality supposedly minimize harm for research participants in all qualitative research methodologies, inclusive of one-on-one unstructured interviews and focus groups. This is not the case for the latter. Confidentiality and informed consent uniquely manifest themselves as endemic ethical dilemmas for focus group researchers. The principle of caveat emptor (let the buyer beware) may be a more useful tool for those involved in focus group research: that is, let the researcher, the participants and (...) the ethics committee beware that the only ethical assurance that can be given to focus group participants is that there are few ethical assurances. These ethical dilemmas are not sufficiently realized in the literature, and if they are discussed, they are often dealt with within the focus group moderator’s preamble to the group discussion. This paper encourages the mandatory use of a participant information sheet sufficiently detailed to engender the participant’s active consent. Sufficient here means the participant must be made adequately aware of these endemic ethical dilemmas in advance, to allow them to consent to share responsibility for any ensuing harm. The focus group moderator is not their sole protector. (shrink)

ABSTRACT Objective: To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building. Methods: Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee (...) of El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed. Results: Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision‐making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight. Conclusions: Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research. (shrink)

Due to the environmental and health impact of the private transport sector, social scientists have largely focused on psychosocial and contextual factors associated with people's choice over transport means. This study aims to contribute to this line of research by applying a user-centered approach, with the objective of taking into account the specific environmental and social context of the metropolitan area of Cagliari city. To accomplish this aim, four groups of people were matched according to their shared starting point: car (...) users vs. public transport users, and light-rail users vs. non-light-rail users. Groups were interviewed using a focus group method. Participants were invited to discuss their everyday travel experiences and to exchange their ideas on different sustainable and less sustainable means of transport. Both consolidated drivers/barriers in the field of environmental psychology and public transportation design features have been investigated. Other than highlighting the importance of socio-psychological factors to promote more sustainable transport choices like in previous studies, the present research offers an insight into how these aspects and factors are shaped and experienced in the narratives of residents. (shrink)

When people in Sweden are sentenced and handed over to forensic psychiatric care (FPC), the authorities have overall responsibility for their health recovery. How nursing staff construct gender through their relations in this context affects their understanding of health promotion activities. The aim of this study was to illuminate, using a gender perspective, the understanding of nursing staff with respect to health promotion activities for patients. Four focus group interviews were conducted with nursing staff in two FPC clinics (...) in Sweden. The study has a qualitative inductive design with an ethnographic approach. This study sheds new light on FPC in which its dual goals of protecting society and providing care are viewed from a gender perspective. When relationships within the nursing staff group and the nurse–patient relationship are justified by the goal of protecting society, gender becomes invisible. This might cause patients' individual conditions and needs for certain types of activities to go unnoticed. One of the implications of ignoring gender relations in nursing staff health promotion activities is that it risks contributing to gender stereotypes which impact on the nurse–patient relationship and the quality of care. (shrink)

Due to their understanding of self-management, healthcare team members responsible for depressed older persons can experience an ethical dilemma. Each team member contributes important knowledge and experience pertaining to the management of depression, which should be reflected in the management plan. The aim of this study was to explore healthcare team members’ reflections on the ethical dilemmas involved in promoting self-management among depressed older persons. A qualitative design was used and data were collected by means of focus group (...) interviews. The results revealed one main theme: ‘Lack of trust in the community health care system’s commitment to bringing about effectiveness and change, based on three themes; ‘Struggling to ensure the reliable transfer of information about depressed older persons to professionals and family members’, ‘Balancing autonomy, care and dignity’ and ‘Differences in the understanding of responsibility’. Lack of engagement on the part of and trust between the various professional categories who work in the community are extremely counterproductive and have serious implications for patient dignity as well as safety. In conclusion, ethical dilemmas occur when staff members are unable to act in accordance with their professional ethical stance and deliver an appropriate standard of care. (shrink)

Marketing research interviewers often feel that they must compromise their own moral principles while executing work-related activities. This finding is based on analysis of data obtained from three focus group interviews and a mail survey of 173 telephone survey interviewers. Data from the mail survey were used to construct scales measuring interviewers' perceived necessity of moral compromise, moral character, and job satisfaction. The three scales then were used in a hierarchical regression analysis to predict incidences of interviewers' self-reported (...) proscribed behaviors on the job, the latter being an index of behaviors known by interviewers to be wrong. Results support all hypothesized relationships. (shrink)

Background Dignity is a central human value supported by nurses’ professional ethics. In previous studies, nurses in clinical practice have experienced that dignity increased their work well-being and pride of work. Dignity is also strictly interweaved to professional identity in the different nursing’ roles, but little is known about dignity among public health nurses and primary care settings. Purpose This study aimed to describe the perceptions of nursing's professional dignity of public health nurses in primary care in Finland. Research design (...) An inductive qualitative descriptive approach with semi-structured focus group interviews was utilised. Participants and research context Twenty-seven Finnish public health nurses were interviewed via eight semi-structured focus group interviews in primary health care settings. Ethical considerations Before data collection, research permissions were obtained from participating health care centres. This type of research in Finland, with competent adult participants, does not require ethical pre-assessment but written and oral informed consent obtained before the interviews. Findings Based on our findings, public health nurses perceived that professional dignity was (1) part of their self-respect, an observed daily value based on their acknowledged competence. Besides, they perceived that (2) service users’ trust in public health nurses was a strong expression of professional dignity, and it could be uncovered when recipients of care utilised their services. In addition, public health nurses experienced that (3) professional dignity was an expression of different intertwined interprofessional and social factors. Discussion and conclusion Professional dignity is simultaneously an essential prerequisite and an outcome of public health nurses’ work. In future, more information would be needed to implement strategies in primary health care to foster nurses’ professional dignity also in international public health arenas. (shrink)

Background: School nurses have great responsibilities as the connecting link between school, children/adolescents, parents, and other healthcare services. Being in this middle position, and handling complex situations and problems related to children in school, may be demanding and also lead to ethical challenges. Clinical ethics support, such as ethics reflection groups, may be of help when dealing with ethical challenges. However, there is little research on experiences with ethics reflection groups among school nurses. Aim: The aim of this research was (...) to explore how nurses in school healthcare experience their role, and how they experience participation in ethics reflection groups, using a model for systematic ethics reflection, the Centre for Medical Ethics model. Research design: The project had a qualitative design, using focus group interviews and thematic analysis. Ethical considerations: The study was evaluated by the Data Protection Official at the Norwegian Centre for Research Data (project no. 57373). The participants were given oral and written information about the study and signed a written consent. Participants and context: Twelve participants from school healthcare were recruited to the interviews. Findings: School nurses described their role as extremely challenging. How the school nurses experienced their role also influenced how they experienced participating in ethics reflection groups. The Centre for Medical Ethics model was experienced as both challenging and comprehensive. However, they also experienced that the model helped them to clarify their role and could also help them to find better solutions. Conclusion: The role as school nurse is complex and demanding, with several ethical challenges. Ethics reflection groups may be of great help when dealing with these challenges. However, it is of great importance that the methods used are adjusted to the professionals’ needs and context. (shrink)

Background: Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health. Objectives: To illustrate the meanings within caregivers’ experiences of caring for persons (...) with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes. Methods: Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated. Ethical considerations: Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons’ expressions were observed aiming to respect their vulnerability, integrity, and dignity. Findings: One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served. Conclusion: Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided. (shrink)

In Japan, few studies and ethical debates have addressed medical futility, but articles suggesting the practice of such treatment exist. The present study aimed to explore attitudes about this by examining personal practical experiences of those who have been involved in judging treatments as futile. We employed a qualitative descriptive design with content analysis of semi-structured and focus group interviews with 11 Japanese physicians and 9 nurses of a university hospital in Japan. The interviews mined their practical experience (...) to identify why they provided treatment that was regarded futile, factors for determining futility, and attitudes toward foregoing futile treatments. All participants had provided treatments judged as futile for various reasons, such as patient request, inadequate decision-making processes, request from another physician, and the lack of standards with which to judge futility, among others. In addition to medical science factors , participants also considered non-medical science factors to determine if a treatment was futile. Almost all participants agreed that futility should be defined and that such treatments should be foregone, but they did not take a proactive stance towards this due to factors related to the healthcare worker‟s situation or the patient. Although the implications of the present study are somewhat limited, our results indicate that futile treatments are provided at multiple treatment departments. Health-care workers employ a variety of factors to determine futility, including non-medical science factors. As provision of such treatment is not always performed for reasons of patient autonomy, diverse approaches should be employed to cope with situations regarding futile treatments. (shrink)

Background Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children’s values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. Aim To explore children’s values and moral dilemmas ​​when undergoing cancer treatment. Methods This is a qualitative study based on empirical data. The data collection was conducted through three (...) class='Hi'>focus group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children’s participation was based on voluntariness and consent/assent. Findings During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? Conclusion Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment. (shrink)

Intersectoral collaboration (IC) plays a significant role in the delivery of diabetes care and treatment of patients with type 2 diabetes (DM2), as the treatment and care of these patients take place in both primary care and specialist settings. The collaboration involves a large number of actors from primary and secondary healthcare sectors, who are expected to fulfil various roles when they engage in IC. We explored the actors' roles by applying the framework of positioning theory with the aim of (...) revealing seemingly embedded understandings of such roles. The empirical data consisted of individual and focus group interviews. Our results indicate that naturalised understandings of the roles of actors interact with the way in which health professionals, patients, managers and relatives strive to develop IC that aims to help and guide patients who live with DM2. (shrink)

Ongoing research on making “human-animal chimeras” or “animals containing human material” to solve the shortage of organs available for transplantation has raised many ethical issues regarding the creation and utilization of such constructs, including cultural views regarding the status of those creations. A pilot study was conducted to explore Japanese public attitudes toward human-animal chimeras or ACHM. The February 2012 study consisted of focus group interviews with citizens from the Greater Tokyo Area, aged between 20 and 54. The (...) 24 participants were divided into four groups. Transcripts of the interviews were analyzed and participants’ attitudes categorized. Five categories of participant attitudes were identified: resistance to the unnatural, concerns about animal welfare, concerns about controlling human-animal chimeras, concerns about the possible birth of intermediate entities, and resistance to creating and utilizing animals containing my material or my child’s material. Our FGI results showed a broader and greater variety of public concerns than those reported in previous studies. While researchers have tried to establish new methods to avoid creating intermediate entities, our participants expressed concerns about not only intermediate entities but also animals containing their own material or their child’s material. Based upon their responses in the interviews, we are introducing a new ethical concern: “animals containing my material/my child’s material.”. (shrink)

Background: Healthcare personnel in the municipal healthcare systems experience many ethical challenges in their everyday work. In Norway, 243 municipalities participated in a national ethics project, aimed to increase ethical competence in municipal healthcare services. In this study, we wanted to map out what participants in ethics reflection groups experienced as promoters or as barriers to successful reflection. Objectives: To examine what the staff experience as promoters or as barriers to successful ethics reflection. Research design: The study has a qualitative (...) design, where 56 participants in municipal healthcare participated in 10 different focus-group interviews. Ethical considerations: The data collection was based on the participants’ informed consent and approved by the Data Protection Official of the Norwegian Centre for Research Data. Results: The informants had different experiences from ethics reflection group. Nevertheless, we found that there were several factors that were consistently mentioned: competence, facilitator’s role, ethics reflection groups organizing, and organizational support were all experienced as promoters and as a significant effect on ethics reflection groups. The absence of such factors would constitute important barriers to successful ethics reflection. Discussion: The results are coincident with other studies, and indicate some conditions that may increase the possibility to succeed with ethics reflection groups. A systematic approach seems to be important, the systematics of the actual reflections, but also in the organization of ethics reflection group at the workplace. Community healthcare is characterized by organizational instabilities as many vacancies, high workloads, and lack of predictability. This can be a hinder for ethics reflection group. Conclusion: Both internal and external factors seem to influence the organization of ethics reflection group. The municipalities’ instabilities challenging this work, and perceived as a clear inhibitor for the development. The participants experienced that the facilitator is the most important success factor for establishing, carrying out, and to succeed with ethics reflection groups. (shrink)

Values‐based practice is deemed essential for healthcare provision worldwide. In England, values‐based recruitment methods, such as multiple mini interviews (MMIs), are employed to ensure that healthcare students’ personal values align with the values of the National Health Service (NHS), which focus on compassion and patient‐centeredness. However, values cannot be seen as static constructs. They can be positively and negatively influenced by learning and socialisation. We have conceptualised students’ perceptions of their values over the duration of their education programme as (...) a ‘values journey’. The aim of this hermeneutic longitudinal focus group study was to explore the ‘values journey’ of student nurses and midwives, recruited through MMIs, across the 3 years of their education programme. The study commenced in 2016, with 42 nursing and midwifery students, originally recruited onto their programmes through multiple mini interviews. At the third and final point of data collection, 25 participants remained. Findings indicate that students' confidence, courage and sense of accountability increased over the 3 years. However, their values were also shaped by time constraints, emotional experiences and racial discrimination. We argue that adequate psychological support is necessary as healthcare students embark on and progress through their values journey, and propose a framework for this. (shrink)

This study explores how the intersection of race and emotions, or racialized emotions, influenced Black high school students’ civic reasoning. Drawing from the students’ photo-elicitation and focus group interviews, we found that racialized emotions not only informed how students conceptualized civic engagement during the Civil Rights Movement but also shaped their civic participation and their critiques of legal systems and other democratic processes. These findings highlight the significant role that racialized emotions had on students’ civic reasoning, suggesting that (...) the intersection of race and emotions is not just a peripheral aspect of civic education but rather a central component. We contend that ignoring emotions in civics instruction, standards, and curriculum not only diminishes students’ learning experiences but can also be harmful and inauthentic. To address this issue, we offer strategies for educators on how to center students’ racialized emotions in their civics instruction. (shrink)

An ethics reflection group is one of a range of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the implementation process of interdisciplinary ERGs in psychiatric and general hospital departments in Denmark. To our knowledge, this is the first study of ERG implementation to include both psychiatric and general hospital departments. The implementation and evaluation strategies are inspired by action research, using a qualitative approach and systematic text condensation (...) of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. The implementation process was influenced by both structural factors and factors related to clinicians having different values, interests and experiences. Structural barriers and promotors in the process to implement ERG included the following sub-categories: Organizational factors, recruitment and training of ethics facilitators, the deliberation model, planning and recruitment of participants to the ERGs, the support of the ward managers and the project group. Barriers and promotors found among clinicians included the following sub-categories: Expectations and pre-understandings of ERGs, understandings of a physician’s job, challenges experienced by ethics facilitators. At the end of the study, when it was decided that the ERGs should be continued, the implementation strategies were remodeled by the participants to meet new challenges. The study of ERG implementation identified important structural and professional barriers and promotors that are likely to be relevant to anyone wanting to implement ethics support services across various types of healthcare services. (shrink)

BackgroundAn ethics reflection group is one of a number of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the significance of ERGs in psychiatric and general hospital departments in Denmark.MethodsThis is a qualitative action research study, including systematic text condensation of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. Short written descriptions of the ethical challenges presented in the ERGs also informed (...) the analysis of significance.ResultsA recurring ethical challenge for clinicians, in a total of 63 cases described and assessed in 3 ethical reflection groups, is to strike a balance between respect for patient autonomy, paternalistic responsibility, professional responsibilities and institutional values. Both in psychiatric and general hospital departments, the study participants report a positive impact of ERG, which can be divided into three categories: 1) Significance for patients, 2) Significance for clinicians, and 3) Significance for ward managers. In wards characterized by short-time patient admissions, the cases assessed were retrospective and the beneficiaries of improved dialogue mainly future patients rather than the patients discussed in the specific ethical challenge presented. In wards with longer admissions, the patients concerned also benefitted from the dialogue in the ERG.ConclusionThis study indicates a positive significance and impact of ERGs; constituting an interdisciplinary learning resource for clinicians, creating significance for themselves, the ward managers and the organization. By introducing specific examples, this study indicates that ERGs have significance for the patients discussed in the specific ethical challenge, but mostly indirectly through learning among clinicians and development of clinical practice. More research is needed to further investigate the impact of ERGs seen from the perspectives of patients and relatives. (shrink)

Ongoing changes in many Western countries have resulted in more healthcare services being transferred to municipalities and taking place in patients’ homes. This greatly impacts nurses’ work in home care, making their work increasingly diverse and demanding. In this study, we explore home‐care nursing through a critical discourse analysis of focus group interviews with home‐care nurses. Drawing on insights from positioning theory, we discuss the content and delineation of their work and the interweaving of contextual changes. Nurses hold (...) a crucial position in home healthcare, particularly in ensuring care for sicker patients with complex needs. Assessing health needs, performing advanced care, and at the same time, providing customized solutions in various homes were identified as distinctive for home‐care nurses’ work. Changes have made nurses’ work become driven by comprehensive tasks and acute medical needs that require much of their competence and time. Urgent care seems to take precedence in nurses’ work, leaving less time and attention for other tasks such as conversations and support for coping with everyday life. This underlines the need to investigate and discuss the content and scope of nurses’ work to help shape the further development of home‐care nursing. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 23 (2003) 197-201 [Access article in PDF] An Interview with Donald Mitchell and James Wiseman The 2002 Fred Streng Book Award has been given to Donald W. Mitchell and James Wiseman for their edited collection, The Gethsemani Encounter: A Dialogue on the Spiritual Life by Buddhist and Christian Monastics. Donald W. Mitchell is professor of comparative philosophy at Purdue University and a member of the editorial (...) advisory board of Buddhist-Christian Studies. James Wiseman is a member of the Benedictine community of St. Anselm's Abbey in Washington, D.C., and is an associate professor of theology at the Catholic University of America. Following is an edited interview with both.DONALD MITCHELL How long have Buddhist and Christian monastics been in dialogue? In 1978 the Benedictine Confederation founded what is now named the Monastic Interreligious Dialogue (MID) in order to develop intermonastic dialogue, especially with Buddhism. MID has been in dialogue with Buddhism in Europe, Asia, Australia, and North America. Numerous MID spiritual exchanges and hospitality programs have taken place between Buddhist and Christian monastics over the years. How did the Dalai Lama get involved? His Holiness the Dalai Lama met with Thomas Merton in 1968, and from then on has been interested in Christian monasticism. He first got involved with MID when several of their members spoke with him at an East-West conference at the Naropa Institute in Boulder, Colorado, in 1981. This was the beginning of a series of intermonastic hospitality exchanges, with Tibetan Buddhist monks and nuns visiting Christian monasteries in the United States and Christian monastics being hosted at Tibetan Buddhist sites in India. Years later, at the Parliament of World's Religions in 1993, MID hosted a Buddhist-Christian dialogue on "Emptiness and Kenosis." The Dalai Lama took part in the dialogue and afterward told MID that he felt its dialogue with Buddhism had matured to the point [where] it would be helpful to have a weeklong retreat dialogue on the spiritual life in Buddhism and Christianity. Where did Gethsemani enter the picture? The Dalai Lama asked if it would be possible to hold the spiritual dialogue at Gethsemani Abbey, home of his friend Thomas Merton. In 1994 MID sent a delegation [End Page 197] to Dharamsala to discuss the proposal in more depth with the Dalai Lama. An agreement was reached to hold a retreat dialogue at Gethsemani Abbey with Buddhist and Christian teachers of spirituality coming from around the world. You're not a monk. How did you get involved? Good question. A year later, Sister Mary Margaret Funk, executive director of MID, met with me to request that I help organize the encounter as a lay advisor to MID. MID had used my book, Spirituality and Emptiness: The Dynamics of Spiritual Life in Buddhism and Christianity, to prepare for the Parliament dialogue on kenosis and emptiness. I agreed to help with inviting the Buddhist participants, crafting the program, and editing the proceedings. What developments in the dialogue have you seen occurring over the years? Many developments. As you can imagine, the Gethsemani Encounter in 1996 was itself a spiritual experience. As Ewert Cousins put it, there seemed to be two treasure boxes—Buddhism and Christianity—set before us in a spiritual atmosphere that enabled us to appreciate the gems of spiritual living shared by the participants. So the encounter itself brought the dialogue to a new stage of trust, understanding, and appreciation. This development can be seen in the fact that Buddhist participants suggested a project be undertaken to produce a Buddhist commentary on the Rule of St. Benedict. The result is Benedict's Dharma: Buddhists Reflect on the Rule of Saint Benedict, edited by Patrick Henry and published by Riverhead Books in 2001. What else? A small group of American Buddhist leaders and MID members met in 1999 to discuss the possibility of holding a Gethsemani Encounter II. It was decided to bring the dialogue ahead by focusing on one of the major topics that came up again and again at Gethsemani I—namely, the... (shrink)

For patients with mental health problems, de-institutionalization has meant a shift from institutional care to living in the community. However, several studies show that problems of stigmatization, loneliness and negative attitudes devalue the dignity and autonomy of these patients. The aim of this study was to gain a deeper understanding of how people with mental health problems experience living in an apartment of their own. The data collection method was focus group interviews. The constant comparative method revealed the (...) main category ‘preserving integrity’. The subcategories were: the need for control over information, similar relationships with both friends and neighbours (symmetrical contact), and ‘My home is my castle’. Participants who lived in a group home had little or no contact with their neighbours. The participants experienced lack of acceptance and loss of autonomy when meeting people. Integrity was a necessary condition in order for them to become equal citizens, experience autonomy and dignity, and have the opportunity to develop social contacts. (shrink)

Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group members’ selection processes and functions in Malawi. A qualitative research design was (...) used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members’ abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

BackgroundDefensive practice occurs when physicians provide services, such as tests, treatments and referrals, mainly to reduce their perceived legal or reputational risks, rather than to advance patient care. This behaviour is counter to physicians’ ethical responsibilities, yet is widely reported in surveys of doctors in various countries. There is a lack of qualitative research on the drivers of defensive practice, which is needed to inform strategies to prevent this ethically problematic behaviour.MethodsA qualitative interview study investigated the views and experiences (...) of physicians in Australia on defensive practice and its contribution to low value care. Interviewees were recruited based on interest in medico-legal issues or experience in a health service involved in ‘Choosing Wisely’ initiatives. Semi-structured interviews averaged 60 min in length. Data were coded using the Theoretical Domains Framework, which encapsulates theories of behaviour and behaviour change.ResultsAll participants (n = 17) perceived defensive practice as a problem and a contributor to low value care. Behavioural drivers of defensive practice spanned seven domains in the TDF: knowledge, focused on inadequate knowledge of the law and the risks of low value care; skills, emphasising patient communication and clinical decision-making skills; professional role and identity, particularly clinicians’ perception of patient expectations and concern for their professional reputation; beliefs about consequences, especially perceptions of the beneficial and harmful consequences of defensive practice; environmental context and resources, including processes for handling patient complaints; social influences, focused on group norms that encourage or discourage defensive behaviour; and emotions, especially fear of missing a diagnosis. Overall, defensive practice is motivated by physicians’ desire to avoid criticism or scrutiny from a range of sources, and censure from their professional peers can be a more potent driver than perceived legal consequences.ConclusionsThe findings call for strengthening knowledge and skills, for example, to improve clinicians’ understanding of the law and their awareness of the risks of low value care and using effective communication strategies with patients. Importantly, supportive cultures of practice and organisational environments are needed to create conditions in which clinicians feel confident in avoiding defensive practice and other forms of low value care. (shrink)

This paper describes the discourses underlying nursing teachers’ talk about their own norm‐critical competence. Norm criticism is an approach that promotes awareness and criticism of the norms and power structures that exert an excluding effect in society in general and in the healthcare encounter in particular. Given the unequal relationships that can exist in healthcare, for example relationships shaped by racism, sexism and classism, a norm‐critical approach to nursing education would help illuminate these matters. The studied empirical material consisted of (...) focus group interviews. Nursing teachers discussed their norm‐critical competence based on the university course “Norm‐Aware Caring” in which they had recently participated. Through a critical discourse analysis, three discourses were identified in their talk, all of which had the potential to disrupt traditional, normative nursing education. However, in all three discourses there was an underlying discourse of normality, clearly positioning the teachers as exemplifying the “normal.” The binary constructed between normality and otherness contradicts a basic tenet of the norm‐critical approach and may hamper the development of genuine norm‐critical competence in nursing education. (shrink)

In recent research, the concept of “media diets” has received increased attention. However, the concept remains vague and not fully developed, and rarely, if at all, do researchers ask citizens about their perceptions of their own and others’ media diets. With the ongoing transformation of the media landscape, there has never been a more pertinent time to explore these perceptions, which this research intends to do. The main goal of this paper then is to identify recommendations addressing recently voiced concerns (...) about news consumption patterns in contemporary society to relevant stakeholders. Empirically, the study is based on a series of focus group interviews with younger (18–25 years old) and older (over 55) adults in five European countries (Germany, Poland, Romania, Spain, and the UK). Our results show important cohort differences as well as cross-country similarities, which are pertinent insights for the formulation of stakeholder recommendations. (shrink)

Background: Clinical group supervision has existed for over 20 years in nursing. However, there is a lack of studies about the role of supervision in nursing students’ education and especially the focus on ethical reasoning. Aim: The aim of this study was to explore and describe nursing students’ ethical reasoning and their supervisors’ experiences related to participation in clinical group supervision. Research design: The study is a qualitative interview study with interpretative description as an analysis approach. (...) Participants and research context: A total of 17 interviews were conducted with nursing students (n = 12) who had participated in clinical group supervision in their first year of nursing education, and with their supervisors (n = 5). Ethical considerations: The study was based on the ethical principles outlined in the Declaration of Helsinki, and permission was obtained from the Regional Ethical Review Board in Sweden. Findings: The analysis revealed that both the form and content of clinical group supervision stimulated reflection and discussion of handling of situations with ethical aspects. Unethical situations were identified, and the process uncovered underlying caring actions. Discussion and conclusion: Clinical group supervision is a model that can be used in nursing education to train ethical reflection and to develop an ethical competence among nursing students. Outcomes from the model could also improve nursing education itself, as well as healthcare organizations, in terms of reducing moral blindness and unethical nursing practice. (shrink)

Background Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective To explore participants’ experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design This qualitative descriptive study used the focus group interview (...) method. Data were analyzed using qualitative content analysis. Participants and research context A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations This study was approved by the Ethical Review Committee of Tokyo Women’s Medical University (no. 4723) and Kyoto University (no. R2099). Findings Five main themes were extracted: discussing one’s thoughts with others in a considerate manner, reflecting on one’s way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about “what if” topics, and turning one’s eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. (shrink)

OBJECTIVES: To study the ethical reasoning of nurses and physicians, and to assess whether or not modified focus groups are a valuable tool for this purpose. DESIGN: Discussion of cases in modified focus groups, each consisting of three physicians and three nurses. The discussion was taped and analysed by content analysis. SETTING: Five departments of internal medicine at Danish hospitals. SAMPLE: Seven discussion groups. MAIN MEASUREMENTS: Ethical content of statements, style of statements, time used by each participant. RESULTS: (...) Danish physicians and nurses do not differ in the kind of ethical reasoning they use, but physicians use more of the discussion time than nurses, they use a more assertive style of argumentation, and the solutions chosen are usually first put forward by physicians. CONCLUSION: The results and informal comparisons with similar data from long qualitative interviews indicate that groups of this kind are a useful tool for gathering data on ethical reasoning. (shrink)

OBJECTIVES: To study the ethical reasoning of nurses and physicians, and to assess whether or not modified focus groups are a valuable tool for this purpose. DESIGN: Discussion of cases in modified focus groups, each consisting of three physicians and three nurses. The discussion was taped and analysed by content analysis. SETTING: Five departments of internal medicine at Danish hospitals. SAMPLE: Seven discussion groups. MAIN MEASUREMENTS: Ethical content of statements, style of statements, time used by each participant. RESULTS: (...) Danish physicians and nurses do not differ in the kind of ethical reasoning they use, but physicians use more of the discussion time than nurses, they use a more assertive style of argumentation, and the solutions chosen are usually first put forward by physicians. CONCLUSION: The results and informal comparisons with similar data from long qualitative interviews indicate that groups of this kind are a useful tool for gathering data on ethical reasoning. (shrink)

Based on individual and focus-group interviews, this article describes how social workers in a variety of settings and geographical areas within Ontario approached ethical issues in their daily practices. Two primary approaches to professional ethics emerge from the data: principle based and virtue based, reflecting the orientation of groups we label believers and skeptics, respectively. The code of ethics appears to be the fulcrum from which our participants swing. The believers show faith in the code of ethics and (...) the skeptics are dubious that codes are necessarily in the best interests of clients. The article describes the thinking behind the actions of the believers and skeptics and explores possibilities for future practice and research with respect to decision-making regarding ethical issues in the social work profession. (shrink)

To date research investigating the potential of Robot-Mediated Interviews has focused on establishing how children respond to robots in an interview scenario. In order to test if an RMI approach would work in a real world setting, it is important to establish what the experts would require from such a system. To determine the needs of such expert users we conducted three user panels with groups of potential real world users to gather their views of our current system and (...) find out what they would require for the system to be useful to them. The user groups consisted of specialist police officers, intermediaries, educational specialists and healthcare specialists. To our knowledge this is the first article investigating user needs for Robot-Mediated Interviews. Due to the novelty of this area, the work presented in this paper is exploratory in nature. The results provide valuable insights into what real world users would need from a Robot-Mediated Interviewing system. Our findings will contribute to future research and technology development in the domain of RMI in particular, and child-robot interaction in general. (shrink)

The interview focuses on Kymlicka's major area of research, i.e., the issue of minority rights. Kymlicka explains why the rights of national minorities have been traditionally neglected in the Western political tradition. He argues that these rights promote individual freedom, and so should be seen as promoting liberal democratic principles. The interview covers many issues including the relationship between ethno‐cultural groups and other forms of “identity politics”; how to individuate cultural groups with legitimate claims to minority rights; whether (...) something like a “cosmopolitan view” can seriously challenge the need for minority rights; what are the dangers of building transnational political institutions such as the EU for democratic citizenship; what are the bases of social unity in multination states and what are the limits of toleration of illiberal minorities. (shrink)

Investigators often have multiple suspects to interview in order to determine whether they are guilty or innocent of a crime. Nevertheless, co-offending has been significantly neglected within the deception detection literature. The current review is the first of its kind to discuss co-offending and the importance of examining the detection of deception within groups. Groups of suspects can be interviewed separately (individual interviewing) or simultaneously (collective interviewing) and these differing interviewing styles are assessed throughout the review. The review emphasizes (...) the differences between lone individuals and groups. It focuses on the theoretical implications of group deceit and the reasons why groups need to be understood in terms of investigative interviewing and deception detection if all types of crime-related incidents are to be recognized and dealt with appropriately. Group strategies, consistency within- and between-statements, joint memory, and group dynamics are referred to throughout the review and the importance of developing interview protocols specifically for groups is discussed. The review concludes by identifying the gaps in the literature and suggesting ideas for future research, highlighting that more research is required if we are to obtain a true understanding of the deception occurring within groups and how best to detect it. (shrink)

Democracy gives people the same right to vote and to be voted in apolitical position. High citizen participation in leader election is utilized as anindicator of the quality of democracy. On the other hand, citizen participationin the election in some cases in some districts of Indonesia did not run smoothlyand peacefully but in the case of Medan city, the periodical election of regionalheads did not show the social upheaval of different options as wellas in the segmentation of ethnic groups as (...) supporters of candidates competingin it. This study is aimed at discovering the interest pattern of PASTI and JokoTingkir as ethnic groups and political compensation, which was gained by themin Pilkada of Medan city in 2015. This study employed qualitative research withcase study type. The research data were obtained through in-depth interviews,library study, documentation, and focus group discussion. It is found that thereis a similarity pattern of ethnic group involvement in constructing politicalcommunication with contestant but there is difference of orientation of postelectioncompensation expectation. (shrink)

Background: Black, Asian and minority ethnic groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks. Objective: To identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent. Methods: Three-phase programme comprising community-based research (...) involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; hospital-based research examining staff practices and influences on family consent through ethics discussion groups with staff, a study on intensive care units and interviews with bereaved ethnic minority families; and development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts. Participants: Community studies: 228 focus group participants; hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and evaluation: 66 health professionals. Data sources: Focus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation. Review methods: Systematic review and narrative synthesis. Results: Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication. Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation. Limitations: Participants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families. Conclusions: The research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS. Future work: Greater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families. Funding: The National Institute for Health Research Programme Grants for Applied Research programme. (shrink)

In recent decades there has been a significant increase in community rehabilitation programs for people with mental health conditions. One such nationwide programs is Amitim in Israel whose mission is to foster the psychosocial rehabilitation of people with mental health conditions in the community. Amitim’s flagship program consists of arts-based groups that integrate participants with mental health conditions and non-clinical community members. To better understand the experiences of participants in these arts-based groups, five focus groups were conducted with participants (...) from 15 integrated arts-based groups. In total, 17 people with mental health conditions and 21 non-clinical community members were interviewed for this qualitative study. Three main themes emerged from the thematic analysis: creation and expression through the arts promote well-being, self-disclosure in a safe space encourages a sense of belonging, and “we are all in the same boat.” The participants underscored the role of creation and expression through the arts in facilitating emotional expression, self-discovery, interpersonal communication, and spiritual elevation. The findings suggest that the facilitators should instill a sense of equality by enabling intergroup acquaintances without labeling participants’ mental health status. Integrated arts-based groups should be accompanied by a mental health professional who can contain and work through complex emotional situations when needed. Arts therapists who specialize in both arts and mental health are particularly suitable for this role. Overall, the interviewees reported that participation in the integrated arts-based groups positively impacted their personal recovery processes by providing a corrective experience of equality as well as enhancing a sense of belonging to the community and social relationships. The participants also reported being empowered by the final artistic event that not only enhanced their sense of visibility, competence, and aspirations for future development in personal, interpersonal, and artistic realms, but also helped to combat both self- and public stigma. (shrink)

In Europe the use of genetically modified (GM) crops in food production has so far failed to gain wide public approval. Ordinary people are concerned about issues not covered by the existing regulation, including usefulness and unnaturalness. In response, particularly to worries about unnaturalness, biotechnologists have suggested that inserted genes should derive only from the plant itself, or from close relatives. This paper examines public perceptions of these so-called ‘cisgenic crops’ and asks whether the public shares the idea that they (...) are less unnatural and thus more acceptable than transgenic plants. Using five focus group interviews, we identified five lines of argument about naturalness with a bearing on the assessment of cisgenic crops as well as GM crops in general. The paper concludes that, depending on perceptions of naturalness, some people would agree that cisgenic crops are more acceptable than their transgenic counterparts. The finding that ordinary people value different aspects of naturalness may be relevant to a broader audience than just those interested in gene technology. It cautions against a simplistic interpretation of what counts as ‘natural’. (shrink)

We have studied ethical considerations of care among health professionals when treating and setting priorities for elderly patients in Norway. The views of medical doctors and nurses were analysed using qualitative methods. We conducted 21 in depth interviews and 3 focus group interviews in hospitals and general practices. Both doctors and nurses said they treated elderly patients different from younger patients, and often they were given lower priorities. Too little or too much treatment, in the sense of too (...) many interventions and too much drugs, combined with too little care and comfort, was admitted as a relatively frequent yet unwanted consequence of the way clinical priorities were set for elderly patients. This was explained in terms of elderly patients not tolerating the same treatment as younger patients, and questions were raised about the quality of life of many elderly patients after treatment. These explanations were frequently referred to as medically sound decision making. Other explanations had little to do with medically sound decisions. These often included deep frustration with executive guidelines and budget constraints. (shrink)