Involving service users and carers in clinical research can help to improve its quality and relevance. By defining the limits of ethical acceptability, improving research design and management, ensuring information for participants is accessible and ensuring the views of participants are properly respected, user involvement can also improve the ethical conduct of research. But research proposals with good quality user involvement have experienced difficulties in obtaining ethical approval. Not all Research Ethics Committees (RECs) fully understand the (...) active role of service user/carer researchers and the current review system can act as a barrier to involving service users and carers in research. This problem urgently needs to be addressed because it is actually in the interests of RECs to promote and support user involvement. This will require adapting the systems of ethical approval, providing further training for REC members and involving service users and carers in developing and implementing these changes. (shrink)

Although guidelines to regulate user involvement in research have been advocated and implemented for several years, literature still describes the process as challenging. In this qualitative study, we take a critical view on guidelines that are developed to regulate and govern the collaboration process of user involvement in research. We adapt a social constructivist view of guidelines and our aim is to explore how guidelines construct the perception of users and researchers and thus the process of (...) involvement. Twenty‐two guidelines published between 2006 and 2019 were analyzed iteratively. The analysis focuses on values which are emphasized in the guidelines on the distribution of entities, knowledge, and tasks between users and researchers. The analysis indicates that users and researchers are constructed differently; researchers are mainly constructed as responsible initiators and caretakers, while users are constructed as powerless and vulnerable. The guidelines portray the collaboration process as harmonious and assume a normative perspective. In doing so, challenges described in the literature related to power imbalances are not addressed. Based on these findings, we ask if these guidelines might function to maintain existing power imbalances between users and researchers. (shrink)

Discourse and rhetoric of service-user involvement are pervasive in all mental health services that see themselves as promoting a Recovery ethos. Yet, for the service-user movement internationally, ‘Recovery’ was articulated as an alternative discourse of overcoming and resisting an institutionalized and oppressive psychiatric model of care. Power is all pervasive within mental health services yet often overlooked in official discourse on user-involvement. Critical research is required to expose the unacknowledged structural and power constraints on participants. (...) My research problematizes practices of user involvement in one mental health service area in Ireland. Part I of this article examines the background context of policies and practices of user-involvement from the service-user perspective and explains developments in relation to service-user involvement in the case of Ireland. Participants in my study articulate their motivation for engagement with mental health service reform in terms of the right to participate in social justice terms, of wanting to improve services and humanise care. Power dynamics emerge as one of the primary obstacles to equitable involvement. Part II of this article presents an explanatory framework of power, using a model developed in the field of development studies; Gaventa’s (2006) ‘power cube.’ The three dimensions of the cube represent the forms, spaces and levels of power. The explanatory potential of this model to highlight how hidden and invisible power operates in mental health services is illustrated by selected comments from the same participants. The power cube is a useful tool to illuminate the dynamics occurring in service-user involvement spaces. Showing how different forms of power operate in the spaces and levels of mental health involvement can develop service-users’ awareness of the hidden and invisible aspects of power. Through this awareness, they can strategize around their potential to influence decision-making in mental health services. (shrink)

Background Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees’ attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. Methods We used panel data in a longitudinal design study (...) to measure variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0–T1–T2). Mixed models were used to account for dependence of data in persons who participated more than once. Results In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. Conclusions This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since—despite the intrinsic value of participating in ERG or MCD—CES inherently aims, and should aim, at improving clinical practices. (shrink)

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly sa...

This paper focuses attention on the ethical issues concerning the involvement of young service users as co-researchers. In particular the article offers an examination of the limitations of the term ?service user?, comments on degrees of participation and explores the ethical issues prior to the start of the research, during the research and after the research has been completed. Particular emphasis is focused on the topics of: the funders of research, ethics committees, valuing contributions, informed consent, confidentiality, authorship (...) and ending the research. The article also suggests that this is a complex area worthy of further exploration and that many of the ethical challenges identified for working with young service users also need to be considered for young service user co-researchers. (shrink)

This article is based on the findings of a study that elicited the views of terminally ill patients, their carers and bereaved carers on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the (...) role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field. (shrink)

Increasingly there are calls for climate services to be “co-produced” with users, taking into account not only the basic information needs of users but also their value systems and decision contexts. What does this mean in practice? One way that user values can be incorporated into climate services is in the management of inductive risk. This involves understanding which errors in climate service products would have particularly negative consequences from the users’ perspective (e.g., underestimating rather than overestimating the change (...) in an impact variable) and then prioritizing the avoidance of those errors. This essay shows how inductive risk could be managed in climate services in ways that serve user values and argues that there are both ethical and practical reasons in favor of doing so. (shrink)

The acknowledgement of basic human vulnerability in relationships between mental health service users and professionals working in community-based mental health services (in Norway) was a starting point. The purpose was to explore how users of these services describe and make sense of their meetings with other people. The research is collaborative, with researcher and person with experienced-based knowledge cooperating through the research process. Data is derived from 19 interviews with 11 people who depend on mental health services for assistance at (...) least three times a week. Data is analysed according to the Interpretative Phenomenological Analysis (IPA). Results confirm that reciprocity is fundamental for relationships, and that recognizing the individual entails personal involvement. The participants describe a struggle, and recognizing this struggle may help the professional to achieve a deeper understanding of the individual. (shrink)

Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and researchers were interviewed (...) who had been involved in using CMHA data for studies. Interviewees discussed the impact on stakeholder interests, sufficiency thresholds and procedural alterations of informed consent, data protection, gathering app user perspectives and representing users in app design and study conduct, and ensuring adequate support. Although the reasoning behind how and why these ethical safeguards and practices should be implemented showed considerable variability and several gaps, interviewees converged on various general lines of reasoning. This allowed for the development of a coherent and nuanced account that could prove useful for future CMHA studies and which could stimulate further normative investigation of the role of ethical safeguards and practices in these studies. (shrink)

Causation is at once familiar and mysterious. Neither common sense nor extensive philosophical debate has led us to anything like agreement on the correct analysis of the concept of causation, or an account of the metaphysical nature of the causal relation. Causation: A User's Guide cuts a clear path through this confusing but vital landscape. L. A. Paul and Ned Hall guide the reader through the most important philosophical treatments of causation, negotiating the terrain by taking a set of (...) examples as landmarks. They clarify the central themes of the debate about causation, and cover questions about causation involving omissions or absences, preemption and other species of redundant causation, and the possibility that causation is not transitive. Along the way, Paul and Hall examine several contemporary proposals for analyzing the nature of causation and assess their merits and overall methodological cogency.The book is designed to be of value both to trained specialists and those coming to the problem of causation for the first time. It provides the reader with a broad and sophisticated view of the metaphysics of the causal relation. (shrink)

As John Casti wrote, "Finally, a book that really does explain consciousness." This groundbreaking work by Denmark's leading science writer draws on psychology, evolutionary biology, information theory, and other disciplines to argue its revolutionary point: that consciousness represents only an infinitesimal fraction of our ability to process information. Although we are unaware of it, our brains sift through and discard billions of pieces of data in order to allow us to understand the world around us. In fact, most of what (...) we call thought is actually the unconscious discarding of information. What our consciousness rejects constitutes the most valuable part of ourselves, the "Me" that the "I" draws on for most of our actions--fluent speech, riding a bicycle, anything involving expertise. No wonder that, in this age of information, so many of us feel empty and dissatisfied. As engaging as it is insightful, this important book encourages us to rely more on what our instincts and our senses tell us so that we can better appreciate the richness of human life. (shrink)

This article is about the ways in which representations of users’ bodies mediate in the designers’ configuration of anti-fertility vaccines and their future users. Anti-fertility vaccines are a novel and not yet available method to regulate fertility. The researchers involved claim that anti-fertility vaccines can be developed for both men and women. But in the material and political specificities of the research contexts, representations of male bodies as users have disappeared, and most research involves the development of a method to (...) be used by women. Anti-fertility vaccines therefore provide an opportunity to study when the sex of future users is deemed relevant by the researchers. This article explores how the fact that most anti-fertility vaccines are developed for female users can be explained without resorting to biological or cultural determinism. How much room for maneuver did the researchers have in defining the vaccines and their users? (shrink)

As users of computer networks have become more active in producing their own electronic records, in the form of transcripts of onlinediscussions, ethicists have attempted to interpret this new situation interms of earlier models of personal data protection. But thistransference results in unprecedented problems for researchers. Thispaper examines some of the central dichotomies and paradoxes in thedebate on research ethics online in the context of the concrete study ofa virtual community that we carried out. We argue that alienation, notprivacy, is (...) the actual core of the ethical problems of virtual communityresearch. While practically everybody is allowed and often welcome tojoin online communities (which undermines the claim to privacy), mostparticipants would agree that members and visitors are not authorized touse, or `harvest,'' or sell the product of the group communication. To dothat, they would be expected to ask for permission preferably before thecontent has been produced, thus granting participants'' right to controltheir own product. This `non-alienation principle'' should be the basisof emergent social conventions in cyberspace. It would apply toresearchers as to anyone else. With certain types of research, wesuggest, cyberspace provides unique opportunities for empoweringsubjects by involving them as contributors in the research project. (shrink)

This paper outlines a critical, textual approach for the analysis of the relationship between different actors in information technology (IT) production, and further concretizes the approach in the analysis of the role of users in the open source software (OSS) development literature. Central concepts of the approach are outlined. The role of users is conceptualized as reader involvement aiming to contribute to the configuration of the reader (to how users and the parameters for their work practices are defined in (...) OSS texts). Afterwards, OSS literature addressing reader involvement is critically reviewed. In OSS context, the OSS writers as readers configure the reader and other readers are assumed to be capable of and interested in commenting the texts. A lack of OSS research on non-technical reader involvement is identified. Furthermore, not only are the OSS readers configured, but so are OSS writers. In OSS context while writers may be empowered, this clearly does not apply to the non-technical OSS readers. Implication for research and practice are discussed. (shrink)

Health Wearable Devices enhance the quality of life, promote positive lifestyle changes and save time and money in medical appointments. However, Wearable Devices store large amounts of personal information that is accessed by third parties without user consent. This creates ethical issues regarding privacy, security and informed consent. This paper aims to demonstrate users’ ethical perceptions of the use of Wearable Devices in the health sector. The impact of ethics is determined by an online survey which was conducted from (...) patients and users with random female and male division. Results from this survey demonstrate that Wearable Device users are highly concerned regarding privacy issues and consider informed consent as “very important” when sharing information with third parties. However, users do not appear to relate privacy issues with informed consent. Additionally, users expressed the need for having shorter privacy policies that are easier to read, a more understandable informed consent form that involves regulatory authorities and there should be legal consequences the violation or misuse of health information provided to Wearable Devices. The survey results present an ethical framework that will enhance the ethical development of Wearable Technology. (shrink)

In February 2015 the UK became the first country to legalise high-profile mitochondrial replacement techniques, which involve the creation of offspring using genetic material from three individuals. The aim of these new cell reconstruction techniques is to prevent the transmission of maternally inherited mitochondrial disorders to biological offspring. During the UK debates, MRTs were often positioned as a straightforward and unique solution for the ‘eradication’ of mitochondrial disorders, enabling hundreds of women to have a healthy, biologically-related child. However, many questions (...) regarding future applications and potential users remain. Drawing on a current qualitative study on reproductive choices in the context of mitochondrial disorders, this article illustrates how the potential limitations of MRTs have been obscured in public debates by contrasting the claims made about the future beneficiaries with insights from families affected by mitochondrial disorders and medical experts. The analysis illuminates the complex choices with which families and individuals affected by mitochondrial disorders are faced, which have thus far remained invisible. An argument is presented for improved information for the public as well as an intensification of critical empirical research around the complex and specific needs of future beneficiaries of new reproductive biotechnologies. (shrink)

This paper examines the role of the general public in informing technology policy, observing that public involvement often occurs only through the electoral process or via feedback after plans have been implemented. Planners and policymakers are not necessarily in touch with the feelings and desires of the public who will be affected by their decisions. For this reason it is important to seek a clearer understanding of the views of citizens who are not typically involved in the planning or (...) design process in order to guide the evolution of technology, as well as to highlight areas where there may be some discrepancy between planners and the needs of everyday users. To broaden the inputs into discussion of emerging problems related to pervasive computing in the State of Hawaii, both information and communication technology specialists and members of the general population were invited to participate in a multi-phase study. Differences in perception between specialists and the general public were identified in all phases of research. Specialists were identified as being more focused on near-term issues related to barriers affecting the growth of high-technology industries within the State. Non-specialists showed greater concern for "human" issues, including issues related to the control of technology. Importantly, both groups independently described a need for increased public participation in the process of technological development. Analysis also revealed that both groups found the problem statements generated by non-specialists to be valuable contributions, arguing for their inclusion in the process of problem identification and further supporting the use of participatory planning methods. (shrink)

Software users have different sets of personal values, such as benevolence, self-direction, and tradition. Among other factors, these personal values influence users’ emotions, preferences, motivations, and ways of performing tasks—and hence, information needs. Studies of user acceptance indicate that personal traits like values and related soft issues are important for the user’s approval of software. If a user’s dominant personal value were known, software could automatically show an interface variant which offers information and functionality that best matches (...) his or her dominant value. A user’s dominant personal value is the one that most strongly influences his or her attitudes and behaviors. However, existing methods for measuring a user’s values are work intensive and/or interfere with the user’s privacy needs. If interface tailoring for very large groups of users is planned, value approximation has to be achieved on a large scale to assign individualized software to all users of the software. Our work focuses on approximating the dominant values of a user with less effort and less impact on privacy. Instead of probing for a user’s values directly, we explore the potential of approximating these values based on the user’s preferences for key tasks. Producing tailored versions of software is a separate topic not in the focus here. In this paper we rather describe a method to identify user values from task preferences and an empirical study of applying parts of this method. We are proposing the method in this paper for the first time except for a preliminary version orally presented at a workshop. The method consists of a research process and an application process. In the research process a researcher has to identify key tasks occurring in a context under investigation which have a relationship to personal values. These key tasks can be used in the application process to approximate the dominant values of new users in a similar context. In this empirical study we show that the research process of our method allows us to determine key tasks which approximate values in the shared context of nursing. The majority of the nurses were found to have one of the three following dominant values: benevolence, self-direction, or hedonism. Data confirmed common expectations: that nurses with the value of benevolence, when compared to all other nurses, had a higher preference for tasks which helped people immediately or improved their circumstances of the treatment. In relation to all other nurses, participants with self-direction disliked tasks which affected their personal freedom, and users with hedonism had a lower preference for tasks which involved physical work and preferred tasks which promised gratification. Our findings advance measurement of personal values in large user groups by asking questions with less privacy concern. However, the method requires substantial efforts during the initial research process to prepare such measurements. Future work includes replicating our method in other contexts and identifying value-dependent tasks for users with other values than the three values our empirical study mainly focused on. (shrink)

In a Mental Imagery Brain-Computer Interface the user has to perform a specific mental task that generates electroencephalography components, which can be translated in commands to control a BCI system. The development of a high-performance MI-BCI requires a long training, lasting several weeks or months, in order to improve the ability of the user to manage his/her mental tasks. This works aims to present the design of a MI-BCI combining mental imaginary and cognitive tasks for a severely motor (...) impaired user, involved in the BCI race of the Cybathlon event, a competition of people with severe motor disability. In the BCI-race, the user becomes a pilot in a virtual race game against up to three other pilots, in which each pilot has to control his/her virtual car by his/her mental tasks. We present all the procedures followed to realize an effective MI-BCI, from the user's first contact with a BCI technology to actually controlling a video-game through her EEG. We defined a multi-stage user-centered training protocol in order to successfully control a BCI, even in a stressful situation, such as that of a competition. We put a specific focus on the human aspects that influenced the long training phase of the system and the participation to the competition. (shrink)

The author traces the ways in which various patients and collective associations of patients come to regard themselves as the users of future stem cell technologies. The author uses Althusser’s notion of interpellation, whereby an identity is the result of the situated encounter of a subject and an authority, to analyze the ways in which patient associations’ current involvement with basic research is related to the enactment of science as a series of technology development projects. The author argues that (...) this ‘‘project-ness’’ forms a certain privileged logic that interpellates patients and their associations in specific ways. Through the listings of illnesses circulated in the mass media, which are hoped to be treatable or curable with stem cell therapies, patients come to recognize themselves as the projected users of stem cell technologies. The author fleshes out the process of this userfication and the various responses made by patients and their associations when hailed by the entrepreneurial projects of stem cell research. (shrink)

Technological development and increased international competition have imposed a significant burden on the product development function of many companies. The growing complexity of products demands a larger product development team with people having various competencies. Simultaneously the importance of good quality, usability and customisation of products is growing, and many companies want to involve customers and users directly in the development work. Both the complexity and quality demand new ways of working that support collaboration between people with various competencies, interests (...) and responsibilities both inside and outside the company. This paper reports experiences from using action research to introduce new user-centred work practices in two commercial product development projects. The interventions varied. In the first project it was found rewarding to engage customers and users in workshops based on participatory inquiry and collaborative design. The design process was iterative and the workshops took place several times involving concept through detailed design. In the second project, new design representations are introduced. The experiences highlight the importance of creating and reifying insights in design representations and using these to both support collaboration, and create continuity in the project. The paper ends with a discussion of scientific rigor in action research and what the new work practices imply for the development team. (shrink)

Assertive community treatment (ACT) is a widely propagated team approach to community mental health care that ‘assertively’ engages a subgroup of individuals with severe mental illness who continuously disengage from mental health services. It involves a number of interested parties – including clients, carers, clinicians and managers. Each operates according to perceived ethical principles related to their values, mores and principles. ACT condenses a dilemma that is common in psychiatry. ACT proffers social control whilst simultaneously holding therapeutic aspiration. The clients’ (...) perspective of this dilemma was studied in interviews with 12 clients using the ‘grounded theory’ approach. Results suggest that clients’ disengagement is as much a historical and cultural phenomenon as a result of lack of insight. Many clients had experienced rejection of early help–seeking behaviour and all had been subject to coercive interventions. These coercive interventions were experienced as an attack on identity. All felt that their voice had not been listened to in previous interactions with psychiatric services. Consequentially the clients had an increased level of arousal around issues of power, which needs to be incorporated when examining the ethics of community psychiatry. Traditional notions of the difference between persuasion and coercion – for example – may need to be adapted for this client group. Results are compared with the provider perspective. We conclude that the perspectives differ on two key dimensions. Such an empirical approach to examining psychiatric ethics may ensure that we incorporate the subjectivities of various interested parties in the clinical decision–making process. (shrink)

The purpose of this study is to investigate the end user perspective of advertising in Pakistan. This involves exploring and examining the consumer feedback about advertising from multiple dimensions. In this regard, survey was done for the current developments in literature so far, in order to discover a general pattern of consumer attitude that has been developing over time. This leads us to the realization that the advertising has been radically changing since its beginning with the change in literature. (...) Advertisers communicate with consumers through advertising, public relations, direct marketing, interactive/Internet marketing, sales promotion etc. organizations must use all available communication tools to communicate consumer and to create awareness about the need of consumer. Advertising is used to create awareness for products and services. Advertisers should know the needs of consumers, target audience, their culture, likes and dislikes. Advertising create feelings and satisfaction in consumer’s mind. Many food and beverage brands use advertising for the promotion of their products. Advergames have an advertisement for a product, service, or company and have become popular. Cultural frame work plays important role in advertising and consumer behavior. Music plays an imported role in advertising; it has recently attracted interest in marketing and consumer psychology. Music is key elements of the culture; it plays an important role in consumers’ perceptions, moods, and in the theme of the advertisements. (shrink)

Increasing pragmatic and ethical concerns have been raised about the inadequacies of conventional approaches to agricultural research and extension worldwide and the lack of integrated efforts among researchers, extension educators, and users. This paper examines three models of these relationships: the diffusion or supply model; the induced innovation or demand model; and the synthesis triangular or supply/demand model. The triangular model builds and improves upon the previous models by focusing on the role of clients or users in the broadest sense (...) in creating a demand for science and extension education, as well as on the role of scientists and extension educators in creating a supply. The triangular model views the relationship as an interactive partnership in which research and extension education are conducted in response to client needs and demands expressed through negotiation, persuasion, and coercion involving all partners. To implement this model will require significant organizational and managerial changes as well as reorientation in the values and attitudes of researchers, extension educators, clients, and their organizations. The remainder of the paper presents a brief discussion of suggested strategies at the individual, institutional, regional, national, and international levels for enhancing this partnership in order to more effectively meet the future needs of our food system. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for (...) involving patients in biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for (...) involving patients in biomedical research aiming to address its main challenges. (shrink)

This study will be of interest to anyone concerned with a critical appraisal of mental health service users’ and carers’ participation in research collaboration and with the potential of the postcolonial paradigm of cultural safety to contribute to the service user research (SUR) movement. The history and nature of the mental health field and its relationship to colonial processes provokes a consideration of whether cultural safety could focus attention on diversity, power imbalance, cultural dominance and structural inequality, identified as (...) barriers and tensions in SUR. We consider these issues in the context of state‐driven approaches towards SUR in planning and evaluation and the concurrent rise of the SUR movement in the UK and Australia, societies with an intimate involvement in processes of colonisation. We consider the principles and motivations underlying cultural safety and SUR in the context of the policy agenda informing SUR. We conclude that while both cultural safety and SUR are underpinned by social constructionism constituting similarities in principles and intent, cultural safety has additional dimensions. Hence, we call on researchers to use the explicitly political and self‐reflective process of cultural safety to think about and address issues of diversity, power and social justice in research collaboration. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations involving (...) the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

This article clarifies how the freedom of thought as a human right can be understood and promoted as a right of mental health service users, especially people with psychotic disorder, by using Martha Nussbaum’s capabilities approach and Fulford’s and Fulford et al ’s values-based practice. According to Nussbaum, freedom of thought seems to primarily protect the capability to think, believe and feel. This capability can be promoted in the context of mental health services by values-based practice. The article points out (...) that both Nussbaum’s approach and values-based practice recognise that people’s values differ. The idea of involving different actors and service users in mental healthcare is also common in both Nussbaum’s approach and values-based practice. However, there are also differences in that values-based practice relies on a ‘good process’ in decision-making, whereas the capabilities approach is oriented towards a ‘right outcome’. However, since process and outcome are linked with each other, these two approaches do not necessarily conflict despite this difference. The article suggests that absolute rights are possible within the two approaches. It also recognises that the capabilities approach, values-based practice and human rights approach lean on liberal values and thus can be combined at least in liberal societies. (shrink)

This article clarifies how the freedom of thought as a human right can be understood and promoted as a right of mental health service users, especially people with psychotic disorder, by using Martha Nussbaum’s capabilities approach and Fulford’s and Fulford _et al_’s values-based practice. According to Nussbaum, freedom of thought seems to primarily protect the capability to think, believe and feel. This capability can be promoted in the context of mental health services by values-based practice. The article points out that (...) both Nussbaum’s approach and values-based practice recognise that people’s values differ. The idea of involving different actors and service users in mental healthcare is also common in both Nussbaum’s approach and values-based practice. However, there are also differences in that values-based practice relies on a ‘good process’ in decision-making, whereas the capabilities approach is oriented towards a ‘right outcome’. However, since process and outcome are linked with each other, these two approaches do not necessarily conflict despite this difference. The article suggests that absolute rights are possible within the two approaches. It also recognises that the capabilities approach, values-based practice and human rights approach lean on liberal values and thus can be combined at least in liberal societies. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in (...) situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

Culture is, in many ways, implicated in and shapes technology design and use. Inspired by Stuart Hall’s conception of encoding/decoding, we maintain that technological artefacts reflect the cultural values of their creators, while users, in their encounters with the technological artefacts, may decode those artefacts in various ways that are shaped by the users’ cultural values. In this article, we apply this lens to study a decade-long urban computing project that took place in the wild. We focus on the project’s (...) development team and on how their cultural values shape technology design. We also acknowledge that such an urban computing project involves many other stakeholder groups that affect the course of events. In our analysis, we examine how these stakeholders shaped and interpreted the technology in question. Although the development project had a seemingly generic “for all” ethos, the various stakeholders pulled the focus in different directions. The trajectory of the project can be characterized as reacting to these competing influences—sometimes achieving fit, while other times resulting in conflicts. The contribution of this paper is a structured analysis and reflections on cultural issues in community technology design in the wild, with a focus on the role of the developers’ cultural values and other stakeholders’ technology-related requirements and interpretations. This study has implications for subsequent studies in the wild by framing them as fluid settings of a great variety of stakeholders with a multiplicity of values, requirements, and interpretations. (shrink)

Pharmacogenomics is a quickly evolving field of research that increasingly impacts individuals and society. As some innovations in biotechnology have experienced strong public opposition during the 1990s, interaction between producers and users of these innovations may help in increasing their success in social and economic terms. However, conditions for effective interaction have so far remained under-explored. This paper explores user-producer interactions in pharmacogenomics from an innovation and science communication perspective in the Netherlands. To find possible ways of engaging stakeholders (...) in an early stage of technology development, ie, when science policy is in the making, we present communication activities derived from the field of policy analysis. To articulate motives for two-way public participation in genomics innovation processes, we describe two levels at which pharmacogenomics developments will have an input:1) at the meso-level of medical practice with already established medical technologies, values and routines, suppliers and health professionals (general practitioners, pharmacists), and 2) at the macro-level of society at large, with established institutions, infrastructures, and broadly shared values and beliefs among citizens in general. Thereby we offer a starting point for optimising decision-making processes in the field of pharmacogenomics innovations, including important aims to be reached, stakeholders to be involved, and some criteria for designing interactive communication activities. (shrink)

The widespread trend to transferirrigation management responsibility from the stateto “communities” or local user groups has byand large ignored the implications ofintra-community power differences for theeffectiveness and equity of water management. Genderis a recurrent source of such differences. Despitethe rhetoric on women‘s participation, a review ofevidence from South Asia shows that femaleparticipation is minimal in water users‘organizations. One reason for this is that theformal and informal membership criteria excludewomen. Moreover, the balance between costs andbenefits of participation is often negative (...) forwomen because complying with the rules and practicesof the organization involves considerable time costsand social risks, whereas other ways to obtainirrigation services may be more effective for femalewater users. Although effective, these other andoften informal ways of obtaining irrigation servicesare also typically less secure. More formalparticipation of women can strengthen women‘sbargaining position as resource users withinhouseholds and communities. Greater involvement ofwomen can also strengthen the effectiveness of theorganization by improving women‘s compliance withrules and maintenance contributions. Furtherdetailed and comparative research is required toidentify the major factors that affect women‘sparticipation and control over resources, ifdevolution policies are to address the tensionbetween objectives of transferring control overresources to community institutions, and ensuringthe participation of all members of the community,especially women. (shrink)

Purpose The popularity of Facebook photo sharing has not only seen a surge in the number of photos shared but also has raised various issues concerning user privacy and self-disclosure. Recent literature has documented the increasing interest of the research community in understanding various privacy issues concerning self-disclosures on Facebook. However, little is known about how different privacy issues, trust and activity influence users’ intentions to share photos on Facebook. To bridge this gap, a research model was developed and (...) tested to better understand the impact of privacy concerns, privacy awareness and privacy-seeking on trust and actual photo sharing activity and subsequently on photo sharing intentions. This study aims to examine the consequences of various facets of privacy associated with photo sharing activity on Facebook. Design/methodology/approach A cross-sectional data from 378 respondents were collected and analysed using partial least squares modelling. Findings The results revealed a significant relationship between various aspects of privacy, including awareness and protective behaviour, with trust and activity. Furthermore, trust and users’ photo sharing activity significantly impact photo sharing intentions on Facebook. Originality/value This study contributes new knowledge concerning various privacy issues and their impact on photo sharing activity and trust. The study also proposes implications that are highly relevant for social networking sites, media agencies and organisations involved in safeguarding the privacy of online users. (shrink)

The study examines employee, managerial, and ethics officer perceptions regarding their companies codes of ethics. The study moves beyond examining the mere existence of a code of ethics to consider the role that code content and code process (i.e. creation, implementation, and administration) might play with respect to the effectiveness of codes in influencing behavior. Fifty-seven in-depth, semi-structured interviews of employees, managers, and ethics officers were conducted at four large Canadian companies. The factors viewed by respondents to be important with (...) respect to code effectiveness include: provisions of examples; readability; tone; relevance; realism; senior management support; training; reinforcement; living up to standards; reporting requirement; anonymous phone line; communicating violations; and enforcement. The factors found to be potentially important include: justification for provisions; employee involvement; and sign-off requirements. Factors found not to be important include: objectives for the code; prior distribution; testing; and relating ones performance review to compliance with the code. (shrink)

Background Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available. Aims The aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders (...) who have personal or professional experience with legally enforceable SBDs. Methods Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically. Results Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation. Conclusions Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards. (shrink)

Purpose This study aims to examine the individuals’ perceived usefulness and ease of use of the government’s electronic services. It also explores the effect of the social influences, as well as of the facilitating conditions, on the individuals’ intentions to use the government’s digital and mobile services. Design/methodology/approach The researcher has adapted various measuring items from the unified theory of acceptance and use of technology and from the theory of acceptance model to investigate the participants’ utilitarian motivations to engage with (...) the government’s online services. The analysis involved a two-step, structural equation modeling approach that included a confirmatory factor analysis that verified the constructs’ validity and reliability. Findings There was a satisfactory fit for this study’s research model. The findings revealed that there were direct and indirect effects that predicted the individuals’ readiness to use the e-government services. The results suggest that the respondents’ perceived usefulness and ease of use of this digital technology were significant antecedents for their behavioral intention to use it. The strength of these relationships was affected by the moderating variables, including, age, gender and experience. Yet, these demographic variables did not have a significant effect on the link between social influences and behavioral intention. Originality/value This study reported that the citizens felt that the e-government systems were useful and easy to use for them. The research participants indicated that they will continue accessing their government’s online services. Therefore, this research implies that the public services should continue improving the facilitating conditions, including the provision of service quality and capability; as well as secure the accessibility to their e-government systems via digital and mobile technologies. In conclusion, this contribution identifies possible research avenues to academia. (shrink)

Multistability—the plurality of meanings of technological artifacts—is an emancipatory phenomenon insofar as it allows the user to freely appropriate the object according to his or her interests, even against the will of the designer. The objective of this article is to show how the trend to connect physical and digital artifacts to the Internet poses a danger to the freedom that there is in multistability. By reducing the traditional separation between the artifact and the designer, the connection of the (...) artifact to the Internet allows the designer to continually modify the software that governs or constitutes it, which involves a relative loss of power for the user to determine its meaning. This change, in favor of the designer in the correlation of power among the actors—designer, artifact, and user—from whose interplay the meaning of artifacts arises, favors concentric stabilities and hinders eccentric ones with respect to the will of the designer. Thus, we should rethink the truth value of the designer fallacy, that is, the claim that the meaning of artifacts is determined only by the designer. From a political point of view, the remote control of artifacts and their multistability is an effective pedagogical tool to educate human beings in a time in which texts, according to Sloterdijk, no longer serve this function. (shrink)

This paper develops an approach to analysing the importance of anticipations of the future on present actions in the lives of mental health service users, for whom sensing stability in the future is important as part of the recovery process. The work of Henri Bergson and Alfred North Whitehead is drawn upon to argue that temporality is understood spatially, and that past and future experience only exist in relation to their shaping of present activity. This process is produced spatially rather (...) than chronologically. Drawing on empirical work with community mental health service users the paper focuses on the home space as a key site for organising space in anticipation of future life. This involves analysing accounts of home making in which we see the role of anticipatory futures in the ordering of domestic space. The paper concludes by arguing that home spaces are a key site related to ongoing psychological well being, and that analysis of such spaces is important in terms of highlighting practices through which service users attempt to ‘make the future’. . (shrink)