This study aims to the role of nursing in motivating the community to participate with health facilities, the impact of linking the community with health facilities for the benefit of tracking community participation and speeding up its resolution, the role of nursing with the community, especially in the presence of diseases and epidemics., A questionnaire was prepared via Google Drive and distributed to the population aged 25-55 years, men and women, in the city (...) of Mecca. As for the questionnaire, it was distributed via the social networking program (WhatsApp) for the purpose of distancing for fear of the presence of the Corona virus, 390 questionnaires were distributed, and 380 responses were obtained via email to the principal researcher. (shrink)

To participate in health research, there is a need for well-administered informed consent. Understanding of informed consent, especially in international health research, is influenced by the participants' understanding of information and the meaning attached to the information communicated to them regarding the purpose and procedure of the research. Incorrect information and the power differential between researcher and participants may lead to participants becoming victims of harmful research procedures. Meningitis epidemics in Kano in early 1996 led to a response (...) from drug companies, especially Pfizer, as well as humanitarian workers from Médecins Sans Frontiers, which resulted in an unethical trial. Pfizer's drug trial during the epidemics has left a lasting controversy, which has yet to be resolved. This paper examines the key issues surrounding the controversy, discusses the context of informed decision-making, the ethical issues and implications of the incident, and concludes with some recommendations. Relevant texts, journals, Internet materials, newspaper articles and documentary materials on the conduct of the Pfizer's Trovan trial have been consulted. Four types of action (act intuitively, act rationally, act ignorantly, and act contextually – based on information provided) are identified as possible options for decision making. Participants most likely acted in ignorance due to poor understanding of the information contained in the verbal informed consent administered, thereby raising ethical issues. It is concluded that health research ethics committees have an important role to play nationally and locally in overseeing research, and in avoiding future occurrences. (shrink)

International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the (...) need to take account of voices from more diverse contexts. Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. (shrink)

Background Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. Rules on involving the population affected when conducting research (...) have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas? Main body of the abstract More than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies recommended the constitution of a formal organism, the Community Advisory Board, as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used. Conclusions Allocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring, and training researchers. (shrink)

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge (...) gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service , and (...) ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed by (...) our experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

Background International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and (...) similar resource-limited settings. Methods We sought to use mabaraza , traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. Results Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. Conclusions Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research. (shrink)

This research explored the feasibility of using multidimensional scaling (MDS) analysis in novel combination with other techniques to study comprehension of epistemic adverbs expressing doubt and certainty (e.g., evidently, obviously, probably ) as they relate to health communication in clinical settings. In Study 1, Australian English speakers performed a dissimilarity-rating task with sentence pairs containing the target stimuli, presented as “doctors' opinions.” Ratings were analyzed using a combination of cultural consensus analysis (factor analysis across participants), weighted-data classical-MDS, and cluster (...) analysis. Analyses revealed strong within-community consistency for a 3-dimensional semantic space solution that took into account individual differences, strong statistical acceptability of the MDS results in terms of stress and explained variance, and semantic configurations that were interpretable in terms of linguistic analyses of the target adverbs. The results confirmed the feasibility of using MDS in this context. Study 2 replicated the results with Canadian English speakers on the same task. Semantic analyses and stress decomposition analysis were performed on the Australian and Canadian data sets, revealing similarities and differences between the two groups. Overall, the results support using MDS to study comprehension of words critical for health communication, including in future studies, for example, second language speaking patients and/or practitioners. More broadly, the results indicate that the techniques described should be promising for comprehension studies in many communicative domains, in both clinical settings and beyond, and including those targeting other aspects of language and focusing on comparisons across different speech communities. (shrink)

Background Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. Aim To assess the perspectives of genetics and genomics researchers in (...) Uganda on CE in GGR. Method A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. Study findings Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR. Conclusion GGR was characterized by special issues that require special CE considerations for such research. (shrink)

Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by (...) multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. Results The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants’ ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants’ motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. Conclusion The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given. (shrink)

BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to (...) end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.MethodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processes relating to their participation in a large-scale, centralized repository for health research data.ResultsThe decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants’ perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.ConclusionsOur findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures. (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)

This paper will examine the concepts of integrity and moral residue as they relate to nursing practice in the current health care environment. I will begin with my definition and conception of ethical practice, and, based on that, will go on to argue for the importance of recognizing that nurses often find themselves in the position of compromising their moral integrity in order to maintain their self‐survival in the hospital or health care environment. I will argue that moral (...) integrity is necessary to a moral life, and is relational in nature. When integrity is threatened, the result is moral distress, moral residue, and in some cases, abandonment of the profession. The solution will require more than teaching bioethics to nursing students and nurses. It will require changes in the health care environment, organizational culture and the education of nurses, with an emphasis on building a moral community as an environment in which to practise ethically. (shrink)

In health communication, metaphor can be considered as a reasoning device to let people understand an abstract concept in terms of a concrete one (Lakoff and Johnson 1980; Bowdle and Gentner 2005). Both the positive and negative communicative effects of metaphors have been largely pointed out in a variety of medical fields, from oncology (Semino et al. 2016, 2018) to mental health (Frezza and Zoccolotti 2019). The use of metaphors in vaccine communication has been less considered, though it (...) might be crucial to let people understand vaccination as an important collective health phenomenon. A previous study (Scherer et al. 2015) focused on the communicative effects of conventional metaphors for vaccination, but not specifically on novel metaphors deliberately used to explain the concept of population immunity in vaccination. We hypothesized that metaphors used to explain vaccination as a collective phenomenon could improve the communicative aims of pro-vaccination texts in many respects, ranging from understandability to trust in expertise. We designed a study to test the hypothesis: two groups of participants were presented with a text about vaccination as a collective phenomenon, described in either literal or metaphorical terms. They were asked to evaluate the text on different communicative aspects from both an individual and a collective point of view. The results confirmed the hypothesis that metaphor is an effective reasoning device and that it also enhances the overall communicative effects of the message, in terms of understandability, persuasion, feeling of control over the health situation, trust in expertise, and uptake of experts’ advice. However, the results show that this effect is significantly nuanced in the individual vs. collective response type. (shrink)

We intuitively think and talk about health care as a human right. Moreover, we tend to talk about health in the language of basic rights or human rights without a clear sense of what such rights mean, let alone whose duty it is to fulfill them. Additionally, in the care ethics literature, we tend to think of a dividing line between care and justice. In this dissertation I aim to draw care and justice together in what I call (...) care justice. To attend to care justice requires the reconceptualization of the value and practice of health care, and of the moral communities in which we enact care and justice. First, I argue for a strong right to health care, though not to health. Second, I argue that health care includes much more than mere medical care. On this account health care is special for the practices of care it values and communicates. Third, I establish a theoretical framework for why, and importantly how, health care entails other forms of care: social, economic and political. My approach engages a complicity framework to rethink moral community formation and participation, and the rights and responsibilities of individuals as participants in a collective moral community. I argue that it is within communities of membership, which I define as ethical homes, that we have duties to and expectations from others. The moral community as complicit ethical home provides a way to reimagine individual shared responsibility within moral communities, and particularly regarding responsibility for practices of care. (shrink)

Community-based mental health care providers are increasingly contacted by external researchers for research study recruitment. Unfortunately, many do not possess the resources or personn...

Background The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues (...) like sexual behaviour or substance use. Discussion South African guidelines set several conditions that must be met for waivers to be granted. These norms overlap with those in international guidelines. However, the ethical norms, especially related to self-consent are sometimes vague. This article critically evaluates the consent norms in the national ethics guidelines and makes recommendations for reform to ethics guidelines in a way that recognises the value of child participation in research, their evolving decision-making capacity and their best interests. Conclusion Recommendations are made to harmonise ethics guidelines and law in a way that promotes child participation in research, to ensure additional protections for adolescents when self-consent is allowed, and to withdraw procedural requirements for the community endorsement of self-consent strategies. (shrink)

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time (...) spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing.These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups. (shrink)

BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research (...) staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the (...) role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. (shrink)

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework (...) that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

What does it take to see how autistic people participate in social interactions? And what does it take to support and invite more participation? Western medicine and cognitive science tend to think of autism mainly in terms of social and communicative deficits. But research shows that autistic people can interact with a skill and sophistication that are hard to see when starting from a deficit idea. Research also shows that not only autistic people, but also their non-autistic interaction partners (...) can have difficulties interacting with each other. To do justice to these findings, we need a different approach to autistic interactions—one that helps everyone see, invite, and support better participation. I introduce such an approach, based on the enactive theory of participatory sense-making and supported by insights from indigenous epistemologies. This approach helps counteract the homogenising tendencies of the “global mental health” movement, which attempts to erase rather than recognise difference, and often precludes respectful engagements. Based in the lived experiences of people in their socio-cultural-material and interactive contexts, I put forward an engaged—even engaging—epistemology for understanding how we interact across difference. From this perspective, we see participatory sense-making at work across the scientific, diagnostic, therapeutic, and everyday interactions of autistic and non-autistic people, and how everyone can invite and support more of it. (shrink)

While the need to protect vulnerable research participants is universal, conceptual challenges with the notion of vulnerability may result in the under or over-protection of participants. Ethics review bodies making assumptions about who is vulnerable and in what circumstance can be viewed as paternalistic if they do not consider participant viewpoints. Our study focuses on participant vulnerability in Scholarship of Teaching and Learning (SoTL) research. We aim to illuminate students’ views on participant vulnerability to contribute to critical analysis of the (...) role and processes of ethics review. Additionally, we aim to highlight the importance of seeking the views of participant communities, especially in research environments beyond ethics review’s medical origins. Thirty-four students from a health-related faculty at a university in Aotearoa New Zealand, participated in five focus groups. Participants discussed factors affecting their potential participation in research drawing upon a series of vignettes based on examples of published SoTL projects. Themes, generated using reflexive thematic analysis, built a participant-informed picture of vulnerability. Findings indicate that students do not generally consider themselves vulnerable and instead consider participation in SoTL research through an agentic lens. Students expect that participation will be voluntary, not negatively impact their grades, and not single them out so that others could judge them. Our study also highlights the value students place on relationships with one another and teaching staff and the implications these have for SoTL research participation and future professional practice. This research challenges research ethics committees to think further about vulnerability in the context of SoTL whilst highlighting the importance of providing opportunities for research participants more broadly to explore and vocalize their views as members of participant communities. (shrink)

Background There are legal protections for nurse researchers at public universities who employ community-based participatory research (CBPR) in research about social or health inequities. Dissemination of CBPR research data by researchers or participants may divulge unjust laws and create an imperative for university involvement. Research Question What are United States-based legal dissemination protections for CBPR health equity nurse researchers? Research Design Three case examples employing CBPR are examined: 1) a mixed methods study with participants reporting illegal discrimination (...) in a municipal initiative about capacity building in community-based organizations serving children; 2) a visual methods study exposing potential clean air law violations in environmental justice research; and 3) a study examining workload violations and illegal discrimination among hotel workers. Participants and Research Context The cases involved participants from protected social class backgrounds. The research is described with respect to: background, funding, research purpose, and research team; research participants’ power and legal vulnerability; dissemination of relevant research information balancing vulnerability and power; research dissemination issues; potential legal issues involved; and laws researchers may use. Ethical Considerations IRB approval was obtained for the studies. Using a social justice ethical framework, studies highlight actual or potential legal aspects of data dissemination in the context of gathering data about injustice. Findings Legal protections for research data dissemination, whistleblower protection, research advancement protection, anti-harassment protection, false claims, defamation, and visual data liabilities are described. Conclusion Knowledge of legal research data dissemination protections is an essential competency for nurse researchers invested in uplifting social justice. (shrink)

This dissertation is focused on the validity of “the data” that are collected in psychotherapy research for the purpose of evidencing treatment efficacy. In the ‘Evidence Based Treatment’ paradigm, researchers rely on the so-called ‘gold standard methodology’ to gather sound and trustworthy evidence, which increasingly influences the organization of mental health care worldwide. In the gold standard, data are collected by quantified self-report measures, to assess the presence and severity of symptoms before and after treatment. When the pre-post difference (...) is larger for a group of people that received the treatment of interest and a group of people who received no or an alternative treatment, the treatment of interest is called effective. In this methodological procedure, researchers tend to assume that when this gold standard methodology is conducted properly, “the data” will speak for themselves. However, when evidence is based on data, that evidence is principally limited by that data. In other words: output depends on input. That implies that when input is flawed, output will be flawed, even when the very best methods of analysis would be used. So what if “the data” yield validity issues despite being collected by validated measures? When “the data” do not straightforwardly evidence treatment effects, will the subsequent steps in the analysis of these data be enough to secure that the evidence in the end does evidence treatment efficacy? In this dissertation, the focus is turned to validity of “the data” that are concretely provided by patient-participants by scoring their own experienced symptoms in self-report questionnaires, in function of evidencing treatment efficacy. A series of empirical case studies were conducted to scrutinize how patient-participants in a randomized controlled psychotherapy study experienced the process of data collection, and how these experiences affected the data that they provided. Each of the studied patient-participants experienced a substantial effect of the questionnaire administration on their complaints. This impacted the level of complaints, but also changed the way in which the complaints were understood at all, and how patient-participants perceived themselves. Thus, rather than neutrally measuring symptoms, questionnaire administration changed the experienced complaints ‘performatively’, which turned measurement into a clinical intervention of its own. Consequently, what is measured cannot straightforwardly be called ‘treatment efficacy’, as it may be entangled with, enabled by or even obstructed by effects of measurement and research. Therefore, the act of measurement itself can pose a vital threat to the validity of “the data”. This way, the empirical case studies exhibited that data can yield validity problems despite the use of validated measures. Consequently, the validity of a measure as such is no guarantee for the validity of data. Nonetheless, in gold standard research, the data are straightforwardly taken as input for analyses of general treatment efficacy. The question is what happens with those validity issues on the level of individual data, when they pursue their journey towards becoming evidence. In this dissertation, it was argued that the validity issues are not sufficiently solved in the methodological steps after data collection, so when data are invalid in the beginning, these validity issues will simply become part of the data set that forms the input for analysis of the final evidence. This urges that validity issues should be solved on the level of individually provided data, as the validity issues will otherwise become inherent to “the data”. Put formally: valid data is a precondition for evidence in EBT. In conclusion, it is crucial for a sound evidence-base to scrutinize the validity of data in function of the overall goal and utility of the research. For this, it is important not to take “the data” as speaking for themselves, but to regard them as clinical narratives, which are framed in a specific format to be communicated between researcher and respondent in a research context. This emphasizes that the choice for a certain format determines what can be evidenced, so it is vital that these choices indeed allow for obtaining evidence that is useful and valid to serve the clinical goal of EBT. (shrink)

BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments in rationing situations (...) of relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or (...) sponsored by pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies. (shrink)

The COVID-19 pandemic which started in China in 2019, was originally described as a public health emergency of intercontinental concern by the World Health Organization (WHO) in January 2020. Due to its speedy rate of spread, the WHO then declared it a pandemic after 6 weeks. The global spread of COVID-19 has been attributed to the high mobility between and within countries. Having noted the wide spread of the COVID-19 pandemic, almost every country affected, developed strict and restrictive (...) public health measures to control the spread of the virus. Such measures included restrictions on country borders and social gatherings. Hence, the main purpose of the paper was to explore the impact of the COVID-19 crisis in relation to religion, health and poverty in Harare urban communities as well as determining solutions to the impact of the COVID-19 pandemic on those sectors. The research methodology was qualitative in nature. Primary data were collected through in-depth telephone interviews and online open-ended questionnaires. Purposive sampling was used to select the study participants. The findings showed that the COVID-19 pandemic triggered and exposed the inequalities in health. The pandemic also had a strong impact on religious activities and it exacerbated poverty levels as well. Those who had all the access to medication, food and vaccinations during the height of COVID-19 may not fully appreciate the impact that poverty coupled with pandemics left on their communities both religiously and socially. Malnutrition, hunger and sickness were the order of the day among the poor.Contribution: The conclusion was that COVID-19 negatively impacted on the health, religious and social sectors. Therefore, it is critical to maintain preventive and curative services, especially for the most vulnerable populations such as children, older persons, and people with disabilities. (shrink)

In this article we wish to establishthe relationshipbetween discourse, as a special formofcommunicative action, and the humanization in health care organizations. This whole discussion has strong references in Jürgen Habermas´s theories of communicative action and discourse. It starts with thecriticismof thebureaucratizationof health organizations done bymedicalrationalization, which createsa profoundasymmetry betweenhealth professionals andpatients. This inequalityimplieslossof the human dimension in health care. It focuses onthe issue of powerand the possibilityofrational reconstructionof relationsfrom adiscourse ethics. Itdiscussesthe issueof health policiesin the public (...) sphere. We wonderhowthe average citizencaneffectively participate inthediscussion ofthese policies, if theydo not havethe expertiseof physicians. Thesame asymmetrybetween health professionals and patientsis reproducedin the public sphere, creating a political issue in democratic societies. Arational reconstructionof a health policyrequiresa formofdeliberativedecision. The lossof the human dimension in health careand the healthpolicy decision-makingproblemseem tofindspaceinthecomplexity ofhealth care. The discussion about quality involves consideringthe indicators producedbyspecializedmedical knowledge, however,theyrequirethe mediationof interests ofhealthcare professionalsand patients.This diversityof perspectivesrequiresprocedures thatprovideunderstandingbetween the partiesfor the construction ofrationalagreementsfor common action. These procedures progress betweenethics and politics. We believe thatthese procedures shouldbe based on discourse. LINGUAGEM, DISCURSO E HUMANISMO NAS ORGANIZAÇÕES DE SAÚDE ResumoNeste artigo pretende-se estabelecer relações entre o discurso, como uma forma especial de ação comunicativa, e a humanização nas organizações de cuidados com a saúde. A argumentação referencia-se fortemente nas teorias da ação da ação comunicativa e do discurso de Jürgen Habermas. Inicia-se com uma abordagem crítica da burocratização das organizações de saúde pela racionalização médica, criando uma profunda assimetria entre profissionais e pacientes. Esta desigualdade implica na perda da dimensão humana no cuidado com a saúde. Focaliza-se a questão do poder e na possibilidade de uma reconstrução racional das relações a partir da ética do discurso. Discute a questão das políticas de saúde na esfera pública. Indaga-se como o cidadão médio pode efetivamente participar na discussão destas políticas uma vez que não possui a expertise dos médicos. A mesma assimetria entre profissionais de saúde e pacientes se reproduz na esfera pública, constituindo uma questão política em sociedades democráticas. Uma reconstrução da política de saúde requer uma forma deliberativa de decisão. A perda da dimensão humana no cuidado com a saúde e o problema das decisões em política de saúde parecem encontrar espaço na complexidade dos cuidado com a saúde. As discussões sobre qualidade devem ter em conta os indicadores produzidos pelo conhecimento médico especializado, entretanto, requerem mediações ente os interesses dos profissionais de saúde e dos pacientes. A diversidade de perspectivas requere procedimentos que provenham entendimento entre as partes para construção racional de argumentos para ação em comum. Estes procedimentos avançam entre ética e política. Acredita-se que estes procedimentos podem ser baseados no discurso. (shrink)

Systematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health , - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.

The vulnerability of participants in Substance Abuse and Mental Health Services Administration (SAMHSA) programs is a consequence of the illnesses that they are experiencing; ethical guarantees must be in place that ensure the dignity of the persons involved in such programs. Dignity is more than an individual concern; it has individual, institutional, and societal dimensions. An ethical framework is proposed that involves the interrelated vulnerabilities and needs of individuals and communities and our societal response to them. Among the issues (...) given particular attention are individual and community stigmatization, target population involvement in program planning, balance with regard to confidentiality and privacy, the place of proportionality grounded in a rich sense of community as a guiding ethical principle, and guidelines for SAMHSA programs. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk-benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non-commercial collaborative research study examining the (...) safety, acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

BackgroundThe concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders (...) to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.MethodsWe conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.ResultsOur study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.ConclusionThis study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings. (shrink)

Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations—namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologies—in order to (...) invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed. (shrink)

IntroductionHearing loss in adults has a pervasive impact on health and well-being. Its effects on everyday listening and communication can directly influence participation across multiple spheres of life. These impacts, however, remain poorly assessed within clinical settings. Whilst various tests and questionnaires that measure listening and communication abilities are available, there is a lack of consensus about which measures assess the factors that are most relevant to optimising auditory rehabilitation. This study aimed to map current measures used in (...) published studies to evaluate listening skills needed for oral communication in adults with hearing loss.MethodsA scoping review was conducted using systematic searches in Medline, EMBASE, Web of Science and Google Scholar to retrieve peer-reviewed articles that used one or more linguistic-based measure necessary to oral communication in adults with hearing loss. The range of measures identified and their frequency where charted in relation to auditory hierarchies, linguistic domains, health status domains, and associated neuropsychological and cognitive domains.Results9121 articles were identified and 2579 articles that reported on 6714 discrete measures were included for further analysis. The predominant linguistic-based measure reported was word or sentence identification in quiet. In contrast, discourse-based measures were used in 2.7% of the articles included. Of the included studies, 36.6% used a self-reported instrument purporting to measures of listening for communication. Consistent with previous studies, a large number of self-reported measures were identified, but 60.4% of these measures were used in only one study and 80.7% were cited five times or fewer.DiscussionCurrent measures used in published studies to assess listening abilities relevant to oral communication target a narrow set of domains. Concepts of communicative interaction have limited representation in current measurement. The lack of measurement consensus and heterogeneity amongst the assessments limit comparisons across studies. Furthermore, extracted measures rarely consider the broader linguistic, cognitive and interactive elements of communication. Consequently, existing measures may have limited clinical application if assessing the listening-related skills required for communication in daily life, as experienced by adults with hearing loss. (shrink)

This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as a model for two (...) follow-up projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

Background: In order to protect the autonomy of human subjects, we need to take their culture into account when we are obtaining informed consent. Objective and research design: This study describes the cultural aspects related to informed consent in health research and is based on electronic searches that were conducted using the Scopus, PubMed, CINAHL, and Cochrane databases published between 2000 and 2013. A total of 25 articles were selected. Findings: Our findings indicate that cultural perspectives relating to the (...) informed consent process are essential during the whole research process and particularly crucial in the planning phase of a study. Our study indicates that appropriate communication between different stakeholders plays a vital role in cultural understanding. Discussion and conclusion: The researchers’ awareness of cultural differences and their ability to work in a culturally sensitive way are key factors in improving study participation and retention in a multicultural context. Taking cultural aspects into account during the whole research process improves the quality of research. (shrink)

Digital health and welfare technologies and artificial intelligence are proposed to revolutionise healthcare systems around the world by enabling new models of care. Digital health and welfare technologies enable remote monitoring and treatments, and artificial intelligence is proposed as a means of prediction instead of reaction to individuals’ health and as an enabler of proactive care and rehabilitation. The digital transformation not only affects hospital and primary care but also how the community meets older people's needs. (...) Community care is often provided by informal and formal care‐givers, most of whom are women. Gender equality is at the heart of many national strategies, but do all genders have equal rights, responsibilities and opportunities when it comes to community care and its digital transformation? The digital transformation of community care is entangled with how care is provided to older people and the working conditions of community‐care professionals. Current and, even more so, future community‐care systems are and will be partly constituted by networks of technological artefacts. These health and welfare technological artefacts and the discourse surrounding them mediate and constitute social relations and community care. This article looks into how health and welfare technology and artificial intelligence‐based devices and systems mediate and constitute gender relations in community care and presents an argument for reflexivity, embodiment, pluralism, participation and ecology as an alternative strategy to treating community care as one‐size‐fit‐all and being blind to gender‐related issues. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk‐benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non‐commercial collaborative research study examining the (...) safety, acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic (e.g. testing and treatment) and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

Fear of burdening or harming childbearing, migrant women, particularly refugees or others who have experienced war, torture, abuse, or rape, can result in their exclusion from research. This exclusion prohibits health issues and related solutions to be identified for this population. For this reason, while it may be challenging to include these women in studies, it is ethically problematic not to do so. Using ethical guidelines for research involving humans as a framework, and drawing on our research experiences. This (...) discussion article proposes a number of strategies to improve the conditions for childbearing migrant women to participate in health research. What emerged as key for studying this diverse population and ensuring an ethically responsible approach are the use of methods that are adapted to the circumstances of childbearing migrant women and the involvement and support from “migrant-friendly” organizations. Ensuring migrant women are involved in the research process and knowledge produced is also critical. The more researchers working in this field communicate their experiences, the more will be learnt about how best to approach research with migrants. More migration and health research will enable a greater contribution to the knowledge base upon which the needs of this population can be met and their strengths maximized. (shrink)

A model frequently used to implement community‐based research involves engaging local community health workers who are trusted members of the community and familiar with local customs, language, and culture. In Spanish‐speaking communities, the CHWs are also known as promotores de salud (“health promoters”). Depending on the study design and nature of the research, promotores facilitate research through community outreach, instrument design, participant recruitment, intervention delivery, data collection, and other research‐related tasks. In 2000, the National (...) Institutes of Health published a regulation requiring training of “key personnel” named on NIH‐supported research involving human subjects. Regardless of whether promotores are technically designated as key personnel on a particular study, they may benefit from training in research ethics. Unfortunately, the educational programs designed for academic researchers in response to the NIH mandate were poorly aligned with the needs of promotores and not suited for learning about human research ethics applied to the community health setting. For example, many promotores in our California‐Mexico border region are monolingual Spanish speakers who have no formal academic research training. Therefore, we set out to develop a training alternative appropriate to our local CHWs. In this essay, we provide overviews of the relevant instructional design principles and our formative research process, including examples of key findings. (shrink)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research (...) practice locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee (...) members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: de-emphasising the role of experts and institutions in the consenting process, clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and more effective support for research participants during and after the study. (shrink)

Background: Privacy is one of the key principles in health care and requires understanding of the cultural aspects of patients’ privacy. In Western cultures privacy is focused on the individual, however, in some non-Western cultures, privacy is linked to the collectivism of the community or religion. Objectives: The objective of this study is to describe the factors related to the realisation of privacy of Somali refugees in health care by describing the factors related to the patient, healthcare (...) professional and interpreter. Research design: The data were collected from Somali refugees (N = 29) using a qualitative questionnaire and were analysed by deductive content analysis based on factors related to the patient, healthcare professional and interpreter. Ethical consideration: Ethical approval was obtained from the University of Turku, and research permissions were obtained from all participating institutions. Findings: Factors related to the patient were as follows: privacy was realised when the patient had self-determination; was able to act according to Somali culture; had knowledge and understanding of treatment; and trusted the healthcare professional. Factors related to the healthcare professional were as follows: the healthcare professional was expected to be of the same gender as the patient, act professionally, focus on the health issues, and to have knowledge and understanding of the Somali culture. Factors related to the interpreter were as follows: the presence and Somali background of the interpreter decreased privacy; the interpreter was expected to be of the same gender as the patient; to have competence and to behave professionally. Discussion: Gender congruence, professionalism and caring attitude and common understanding between the Somali patient and Finnish provider increase the privacy of Somali patients. Conclusion: Somali patients’ privacy can be improved by increasing healthcare professionals’ understanding of Somali culture, acknowledging the importance of gender concordance in relation to healthcare professionals and interpreters, and the effect of the presence of the interpreter on patients’ privacy. (shrink)

La pandémie de COVID-19 a eu un effet mondial. L’impact disproportionné sur les peuples autochtones et les groupes racialisés a mis les défis éthiques au premier plan dans la recherche et la pratique clinique. Au Canada, l’Énoncé de politique des trois Conseils (EPTC2), et plus particulièrement le principe de justice, met l’accent sur les soins supplémentaires à apporter aux personnes « dont les circonstances les rendent vulnérables », notamment les communautés autochtones et racialisées. En l’absence de données fondées sur la (...) race pour mesurer et éclairer la recherche en santé et la pratique clinique, nous courons le risque de causer plus de tort et de contribuer à des injustices continues. Toutefois, en l’absence d’un cadre accepté pour la collecte, la tenue à jour et la communication des données fondées sur la race au Canada, il est nécessaire d’obtenir davantage de conseils sur la façon de bien faire les choses. Il est important de noter qu’un cadre pour la collecte de données fondées sur la race devrait s’appuyer sur les directives existantes des communautés autochtones et d’autres communautés structurellement marginalisées, sur l’EPTC2, sur les recommandations de l’Organisation mondiale de la santé et sur la participation des intervenants concernés. Dans le présent document, nous décrivons des exemples historiques d’études non éthiques sur les Autochtones et les groupes racialisés, nous discutons des défis et des avantages potentiels de la collecte de données fondées sur la race, et nous concluons par les objectifs d’un cadre pancanadien visant à informer la façon dont les données fondées sur la race sont recueillies, stockées et accessibles dans la recherche en santé. (shrink)

An outstanding feature of the study of nursing ethics is that it raises questions concerning moral virtue, conscience, consistency and character. A considerable section of the literature is devoted to ideas of how best to teach ethics to health professionals. It has been shown that when faced with ethical dilemmas nurses tended to rely on intuition and instinct to resolve them, with little systematic analysis to help the process. Nurses who have been in practice for a number of years (...) may experience particular difficulties in resolving ethical dilemmas, for although they may be able easily to identify ethical problems they may feel powerless to behave appropriately through lack of theoretical background and/or confidence in participating in informed debate. An educational programme was designed to meet the needs of mature registered nurses who were undertaking a post-qualification part-time honours degree in nursing studies. A variety of teaching methods were employed in teaching the nurses. These included discussion, student-led seminars, structured debate and role play. A session which dealt with sudden death and organ donation is described in some detail. Because the topic involved communication between professionals and patients and/or relatives and was linked with ethics, role play was used to explore the dynamics in these areas. The participants were invited to act out the situation as they felt it might occur. Role play highlighted the stress and shock attached to such an experience. Before working through the dynamics of a situation the nurses were conscious of being part of decision-making 'in the cold' and 'in isolation'. As a result of the experiential learning they felt more able to reflect analytically and to participate in discussions in an informed and articulate way. (shrink)

Recognizing the importance of health‐promoting relationships in engaging people who are experiencing homelessness in care, most research on health clinics for homeless persons has involved some recognition of client–provider relationships. However, what has been lacking is the inclusion of a critical analysis of the policy context in which relationships are enacted. In this paper, we question how client–provider relationships are enacted within the culture of community care with people who are experiencing homelessness and how clinic‐level and broader (...) social and health policies shape relationships in this context. We explore these questions within a critical theoretical perspective utilizing a critical ethnographic methodology. Data were collected using multiple methods of document review, participant observation, in‐depth interviews and focus groups. The participants include both clients at a community health clinic, and all clinic service providers. We explore how clients and providers characterized each other as ‘good’ or ‘bad’. For providers, this served as a means by which they policed behaviours and enforced social norms. The means by which both providers’ and clients’ negotiated relationships are explored, but this is couched within both local and system‐level policies. This study highlights the importance of healthcare providers and clients being involved in broader policy and systemic change. (shrink)

As the only nation in the western world without a national health insurance program, the United States faces ongoing issues of access and fairness in health care coverage. The Clinton administration tried and failed to address the problem of universal coverage. Since then we have focused on the narrower, but nonetheless real, issues of fairness and equity in the benefits package provided in insurance plans. The LORAN Commission spent two years trying to devise agreed-upon principles to govern such (...) issues. The lesson learned was the same as that of the Ethics Force study: there was no possibility of getting agreement, let alone consensus, among the participants on how to decide what should be a covered benefit. There were, however, two generally agreed upon principles that emerged regarding health care: “Every individual should be treated alike,” and “When it comes to health, cost cannot be a consideration.” That formula translated into providing everyone with everything. The only certain outcome from such a policy would be fiscal insolvency and ultimately bankruptcy. (shrink)

My research explores Maya perspectives on neo-traditional farming as a source of metabolic health and resilience to the global epidemic of type-two diabetes. This article is based on long-term ethnographic research and interviews in Maya Mountains Reservation communities in southern Belize, an area with low diabetes prevalence relative to national and global populations. Research participants see lower rates of diabetes in the MMR as the result of neo-traditional peasant and subsistence farming on ancestral lands. Good metabolic health represents (...) the embodiment of food systems that routinize healthy material and social relationships to the landscape. This research suggests that diabetes is endemic to modern food systems and proposes neo-traditional food ways as a societal antidote to nutritional disease. My research demonstrates and responds to a need for further disaggregated data on diabetes prevalence in Indigenous communities, contributes to the social scientific literature on the importance of small-scale agricultural models for community health, and provides a case study of success in diabetes prevention. I engage Maya perspectives with anthropological literature on embodiment and small-scale agriculture to suggest neo-traditional food ways as healthier alternatives to capitalist agricultural development. (shrink)