Imagination is extremely important for science, yet very little is known about how scientists actually use it. Are scientists taught to imagine? What do they value imagination for? How do social and disciplinary factors shape it? How is the labor of imagining distributed? These questions should be high priority for anyone who studies or practices science, and this paper argues that the best methods for addressing them are qualitative. I summarize a few preliminary findings derived from recent interview-based and (...) observational qualitative studies that I have performed. These finding include: (i) imagination is only valued for use in addressing maximally specific problems, and only when all else fails; (ii) younger scientists and scientists who are members of underrepresented groups express less positive views about imagination in general, and have less confidence in their own imaginations; (iii) while scientists seem to employ various epistemological frameworks to evaluate imaginings, overall they appear to be epistemic consequentialists about imagination, and this holds also for their evaluations of the tools they use to extend the power of their imaginations. I close by discussing the epistemic and ethical consequences of these findings, and then suggesting a few research avenues that could be explored next as we move forward in the study of scientific imagination. (shrink)

BackgroundThere is growing interest in the collection, storage and reuse of biological samples for future research. Storage and future use of biological samples raise ethical concerns and questions about approaches that safeguard the interests of participants. The situation is further complicated in Africa where there is a general lack of governing ethical frameworks that could guide the research community on appropriate approaches for sample storage and use. Furthermore, there is limited empirical data to guide development of such frameworks. A (...) class='Hi'>qualitative study to address this gap was conducted with key stakeholders in Malawi to understand their experiences and perspectives regarding storage and usage of samples for future research.MethodsThis study conducted 13 in-depth interviews with ethics committee members, regulators and researchers, and five focus group discussions with community representatives and clinical trial participants in Malawi. Interviews and focus group discussions were audio-recorded, transcribed verbatim, and thematically analysed.ResultsOn the current regulatory guidelines that governs the collection, storage and reuse of samples in Malawi, participants highlighted their different understanding of it, with some indicating that it prohibited the reuse and sharing of samples, while others believed it permitted.Views on the informed consent model used in Malawi, some stakeholders expressed that the current model limited options for sample contributors regarding future use. Researchers supported storing samples for future use in order to maximize their value and reduce research costs. However, they expressed concern over the exportation of samples highlighting that it could lead to misuse and would not support the development of research capacity within Malawi. They recommended use of broad consent or tiered consent and establishment of biobanks to address these concerns.ConclusionsStudy findings highlighted the need for a review of the current regulatory guideline and the development of infrastructure to support the use of stored biological samples for future use among the research community in Malawi. At the moment, there are ethical and practical concerns arising from the collection, storage and secondary use of biological samples make it hard to reconcile scientific progress and the protection of participants. (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)

BackgroundLow literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. The purpose of this (...) class='Hi'>study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension.MethodsUsing qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes.ResultsFindings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension.ConclusionThe quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies. (shrink)

Balancing the rights and obligations of custodians and applicants in relation to access to biobanks is of utmost importance to guarantee trust and confidence. This study aimed to reveal which issues divide dif..

The arts provide openings for symbolic expression by engaging the sensory experience in the body they become a source of insight through embodied cognition and emotion, enabling meaning-making, and acting as a catalyst for change. This synthesis of sensation and enactive, embodied expression through movement and the arts is capitalized on in The BodyMind Approach®. It is integral to this biopsychosocial, innovative, unique intervention for people suffering medically unexplained symptoms applied in primary healthcare. The relevance of embodiment and arts practices (...) in TBMA are discussed in relation to the views of participants in the pursuit of self-management. If widely employed TBMA could have an enormous impact, reach, and significance for patients and global health services. This original pre-clinical trial of qualitative research reports on the perceptions of participant patients with generic MUS, a world-wide issue usually treated by either psychological therapy or physiotherapy. TBMA is not a therapy but a health education program founded upon the concept of an integration of psychological elements with physiological, bodily, and sensory experiences. Thematic analysis of qualitative data sets from open-ended questions in semi-structured interviews and a written questionnaire post intervention is presented. Five aspects which appear to be key to learning self-management were derived from analyzing the data: body with mind connections; importance of facilitation; potential benefits; preparedness for change; self-acceptance/compassion. This article advances the discourse on the nature of self-management for MUS through changing the mind-set and the relationship participants have with their bodily symptom/s through employing embodied methods and arts practices, challenging current, and solely verbal, psychological conceptual frameworks. Rigor lies in the method of data analysis using cross verification of credibility between reported findings and scrutiny by stakeholders. We conclude that facilitated TBMA groups employing embodied methods and arts practices can act as a method for developing the self-management of MUS and improving wellbeing. (shrink)

Biomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or “biobanks” over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank. We conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank. Their views were elicited using a semi-structured interview schedule and (...) scenarios based on a hypothetical biobank. Data analysis was based on the constant comparative method. What participants identified as requiring new consent was not a straightforward matter predictable by algorithms about the scope of the consent, but instead was contingent. They assessed whether proposed new research implied a fundamental alteration in the underlying character of the biobank and whether specific projects were within the scope of the original consent. What mattered most to them was that the cooperative bargain into which they had entered was maintained in good faith. They saw re-consent as one important safeguard in this bargain. In determining what required re-consent, they deployed two logics. First, they used a logic of boundaries, where they sought to detect any possible rupture with their existing framework of cooperation. Second, they used a logic of risk, where they assessed proposed research for any potential threats for them personally or the research endeavour. When they judged that a need for re-consent had been activated, participants saw the process as way of re-actualising and renewing the cooperative bargain. Participants’ perceptions of research as a process of mutual co-operation between volunteer and researcher were fundamental to their views on consent. Consenting arrangements for biobanks should respect the cooperative values that are important to participants, recognise the two logics used by research volunteers, and avoid rigidity. Agility may be favoured by tiered consent combined with strong oversight mechanisms; this approach requires evaluation. (shrink)

Background Interest in biobanking for collection of specimens for non-communicable diseases research has grown in recent times. This paper explores the perspectives of Nigerians on donation of specimen for the biobanking research. Methods We conducted 16 Focus Group Discussions (FGD) with individuals from different ethnic, age and socio-economic groups in Kano (North), Enugu (Southeast), Oyo States (Southwest) and Abuja, the Federal Capital Territory (Central) of Nigeria. We used topic guides and prompt statements to explore the knowledge and understanding of interviewees (...) to general issues about biobanking of biospecimens, their use and specifically about role of biobanking in non-communicable diseases research. Results A total of 123 individuals participated in 16 focus group discussions in 2011. Our participants had limited knowledge of the concept of biobanking but accepted it once they were educated about it and saw it as a worthwhile venture. Half of our study participants supported use of broad consent, a quarter supported restricted consent while the remaining quarter were in favour of tiered consent. Most discussants support shipment of their samples to other countries for further research, but they prefer those collaborations to be done only with competent, ethical researchers and they would like to receive feedback about such projects. The majority preferred health care as a benefit from participation, particularly for any unexpected condition that may be discovered during the course of the research instead of financial compensation. Participants emphasized the need to ensure that donated samples were not used for research that contradicts their religious beliefs. Conclusions Our study demonstrates that our participants accepted biobanking once they understand it but there were different attitudes to elements of biobanking such as type of consent. Our study highlights the need to carefully document population attitudes to elements of modern scientific research and the consenting process. (shrink)

Context: The need to reinvigorate medical confidentiality protections is recognised as an important objective in building patient trust necessary for successful health outcomes. Little is known about patient understanding and expectations from medical confidentiality.Objective: To identify and describe patient views of medical confidentiality and to assess provisionally the range of these views.Design: Qualitative study using indepth, open ended face-to-face interviews.Setting: Southeastern Pennsylvania and southern New Jersey, USA.Participants: A total of 85 women interviewed at two clinical sites and three (...) community/research centres.Main outcome measures: Subjects’ understanding of medical confidentiality, beliefs about the handling of confidential information and concerns influencing disclosure of information to doctors.Results: The subjects defined medical confidentiality as the expectation that something done or said would be kept “private” but differed on what information was confidential and the basis and methods for protecting information. Some considered all medical information as confidential and thought confidentiality protections functioned to limit its circulation to medical uses and reimbursement needs. Others defined only sensitive or potentially stigmatising information as confidential. Many of these also defined medical confidentiality as a strict limit prohibiting information release, although some noted that specific permission or urgent need could override this limit.Conclusions: Patients share a basic understanding of confidentiality as protection of information, but some might have expectations that are likely not met by current practice nor anticipated by doctors. Doctors should recognise that patients might have their own medical confidentiality models. They should address divergences from current practice and provide support to those who face emotional or practical obstacles to self-revelation. (shrink)

Coastal environments are increasingly shown to have a positive effect on our health and well-being. Various mechanisms have been suggested to explain this effect. However, so far little focus has been devoted to emotions that might be relevant in this context, especially for people who are directly or indirectly exposed to the coast on a daily basis. Our preregistered qualitative study explored how coastal residents experience the emotions they feel at the coast and how they interpret the effect (...) these emotions have on them. We conducted semi-structured interviews with a purposive sample of eight Belgian coastal residents aged 21–25 years old. The interviews were analyzed with the approach of interpretative phenomenological analysis. Five superordinate themes were identified and indicate that, for our participants, the coast represents a safe haven in which they can experience emotional restoration, awe, and nostalgia. These emotional states are accompanied with adaptive emotion regulating strategies, such as reflection and positive reappraisal, that may facilitate coping with difficult thoughts and feelings. Our study demonstrates the importance of investigating specific emotions and related processes triggered at the coast and how these could contribute to the therapeutic value of the coast. (shrink)

BackgroundThere is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, (...) as a case-study.MethodsWe conducted a prospective qualitative study using 35 in-depth semi-structured interviews and one focus group. We interviewed healthcare professionals, Research Ethics Committee members and regulators who are actively involved in the conduct of clinical research in pregnant women, in addition to pregnant women recruited for the APOSTEL VI case-study in the Netherlands.ResultsThree themes characterise the way stakeholders view risks in clinical research in pregnant women in general. Additionally, one theme characterises the way healthcare professionals and pregnant women view risks with respect to the case-study specifically. First, ideas on what constitutes an acceptable level of risk in general ranged from a preference for zero risk for the foetus up to minimal risk. Second, the desirability of clinical research in pregnant women in general was questioned altogether. Third, stakeholders proposed to establish an upper limit of risk in potentially beneficial clinical research in pregnant women in order to protect the foetus and the pregnant woman from harm. Fourth and finally, the case-study illustrates that healthcare professionals’ individual perception of risk may influence recruitment.ConclusionsHealthcare professionals, RECs, regulators and pregnant women are all risk adverse in practice, possibly explaining the continuing underrepresentation of pregnant women in clinical research. Determining the acceptable levels of risk on a universal level alone is insufficient, because the individual perception of risk also influences behaviour towards pregnant women in clinical research. Therefore, bioethicists and researchers might be interested in changing the perception of risk, which could be achieved by education and awareness about the actual benefits and harms of inclusion and exclusion of pregnant women. (shrink)

Small and medium-sized enterprises (SMEs) play a crucial role in national economic growth and contribute significantly to GDP, acting as the backbone of economies in competitive markets. However, ethical issues in SMEs are often overlooked compared to those in large organisations due to limited public financial exposure and minimal media coverage. Research on ethical culture is still limited, particularly in SMEs, as past studies have predominantly focused on large organisations. To gain deeper insights into the ethical culture of SMEs, more (...) qualitative research is needed to uncover the complexities of ethical conduct and organisational dynamics in SMEs. Therefore, this study employs a qualitative approach to explore the elements of ethical culture implemented in Malaysian SMEs. The data, gathered through in-depth interviews with eleven SME managers in Malaysia, revealed that ethical culture is reflected through formal systems, informal systems, leadership, and the newly highlighted element of religiosity. These four elements were explained with three goals for each element: communication, training, and management. The ethical issues faced by SMEs (favouritisms, selling company inventories, and disrespect towards female-led managers) were also highlighted. Accelerators (family influence, customer retention) and barriers (financial constraints) in implementing ethical culture were identified. Interestingly, this study highlights the significant role of religiosity in the ethical culture of SMEs, contributing to the literature and serving as a framework for future research. It aims to provide valuable insights for policymakers, business leaders, and stakeholders seeking to promote a robust ethical culture within the context of Malaysian SMEs. (shrink)

Background The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the (...) subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking. Methods To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions. Results 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience. Conclusions Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology. (shrink)

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study (...) using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

Background Doctors and the Sri Lanka Medical Association recognise the importance of do not attempt cardiopulmonary resuscitation decisions and disclosure; however, few previous studies exist examining these practices in Sri Lanka. Resuscitation decisions have seen significant changes in the UK in recent years, with a legal imperative for clear communication and a move to understand patients’ preferred outcomes before recommending clinical guidance. Methods Participants from two Sri Lankan hospitals were selected purposively to represent a range of specialties and seniorities for (...) semi-structured interview. Results Fifteen participants of varying seniorities were recruited. Practice of do not resuscitate and informing patients is highly variable; there is no definitive guidance published on best practice of these issues in Sri Lanka. Participants felt that inpatients were generally not aware of their medical conditions or treatments. With the poor social and palliative care service provision in Sri Lanka comes a pressure to involve families in the patient care, particularly at the end of life. This feeds into a culture where patient autonomy plays a subordinate role to family involvement. Participants understand the ethical need for do not resuscitate, however, it is viewed to be a consideration for when the patient is close to death. Conclusion Do not resuscitate does not appear to be a prominent feature of end-of-life care in Sri Lanka and thus consideration of the appropriateness of resuscitation is commonly left late in a patient’s deterioration. Education, inclination and respect for doctors are suggested barriers to effective inclusion of patients in their healthcare and end-of-life decisions. (shrink)

Background: Emergency exception to informed consent regulation was introduced to provide a venue to perform research on subjects in emergency situations before obtaining informed consent. For a study to proceed, institutional review boards need to determine if the regulations have been met.Aim: To determine IRB members’ experience reviewing research protocols using emergency exception to informed consent.Methods: This qualitative research used semistructured telephone interviews of 10 selected IRB members from around the US in the fall of 2003. IRB members (...) were chosen as little is known about their views of exception to consent, and part of their mandate is the protection of human subjects in research. Interview questions focused on the length of review process, ethical and legal considerations, training provided to IRB members on the regulations, and experience using community consultation and notification. Content analysis was performed on the transcripts of interviews. To ensure validity, data analysis was performed by individuals with varying backgrounds: three emergency physicians, an IRB member and a layperson.Results: Respondents noted that: emergency exception to informed consent studies require lengthy review; community consultation and notification regulations are vague and hard to implement; current regulations, if applied correctly, protect human subjects; legal counsel is an important aspect of reviewing exception to informed-consent protocols; and IRB members have had little or no formal training in these regulations, but are able to access materials needed to review such protocols.Conclusions: This preliminary study suggests that IRB members find emergency exception to informed consent studies take longer to review than other protocols, and that community consultation and community notification are the most difficult aspect of the regulations with which to comply but that they adequately protect human subjects. (shrink)

Introduction: The humanities enrich and transform the practice of medicine. What remains to be seen, however, is how best to integrate humanities into the medical curriculum to optimize both educational and patient-related outcomes. The present study considers the structure of an innovative student-driven humanities curriculum and seeks to understand its strengths and limitations, as well as make recommendations for improvement. Methods: The Penn State College of Medicine, University Park Regional Campus uses an inquiry-based approach to education, whereby students are (...) responsible for creating learning objectives in four core pillars of exploration: Foundational Science, Clinical Science, Health Systems Science, and Health Humanities. This study explores student-derived humanities learning objectives (HLO) across four years of the curriculum. Results: 420 HLOs met criteria for analysis and were coded as instrumental (developing direct clinical skill), non-instrumental (non-skill based), or both. Of these, 125 (30%) were instrumental, 239 (57%) were non-instrumental, and 56 (13%) were coded as both. Most instrumental HLO centered around communication skills. Non-instrumental HLO most commonly focused on bearing witness and critiquing a particular experience within a social and/or political context. Conclusions: Findings from this study contribute to the development of a humanities curriculum in a student-directed learning program. Non-instrumental HLO lacked a theoretical framework to guide student’s investigations to a deeper level of analysis. Student-directed learning offers many strengths, but can be enhanced through external direction from humanities trained faculty, particularly given that many medical students have a limited humanities background. (shrink)

Mother-to-child transmission of the Human Immunodeficiency –Virus is a serious public health problem, contributing up to 90% of childhood HIV infections. In Tanzania, the prevention-of-mother-to-child-transmission feature of the HIV programme was rolled out in 2000. The components of PMTCT include counselling and HIV testing directed at antenatal clinic attendees. It is through the process of Provider Initiated Counseling and Testing that counselling is offered participant confidentiality and voluntariness are upheld and valid consent obtained. The objective of the study was (...) to explore antenatal clinic attendees’ experiences of the concept of voluntariness vis- a- vis the implementation of prior counseling and subsequent testing for HIV under the PITC as part of their antenatal care. In-depth interviews were conducted with17 antenatal clinic attendees and 6 nursing officers working at the Muhimbili National Hospital antenatal clinic. The study data were analyzed using qualitative content analysis. Antenatal clinic attendees’ accounts suggested that counselling and testing for HIV during pregnancy was voluntary, and that knowledge of their HIV status led them to access appropriate treatment for both mother and her newborn baby. They reported feeling no pressure from nursing officers, and gave verbal consent to undergo the HIV test. However, some antenatal clinic attendees reported pressure from their partners to test for HIV. Healthcare providers were thus faced with a dilemma of disclosure/ nondisclosure when dealing with discordant couples. Antenatal clinic attendees at MNH undertook the PITC for HIV voluntarily. This was enhanced by their prior knowledge of HIV, the need to prevent mother- to- child transmission of HIV, and the effectiveness of the voluntary policy implemented by nursing officers. (shrink)

Background In June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact. Methods This study reports on findings from 48 semi-structured qualitative interviews (...) conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis. Results Themes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners. Conclusions This paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. (...) The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

In Switzerland, people can be granted access to assisted suicide on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person...

Background: Ethical challenges are common in clinical nursing practice, and an infectious environment could put nurses under ethical challenges more easily, which may cause nurses to submit to negative emotions and psychological pressure, damaging their mental health. Purpose: To examine the ethical challenges encountered by nurses caring for patients with the novel coronavirus pneumonia (COVID-19) and to provide nurses with suggestions and support regarding promotion of their mental health. Research design and method: A qualitative study was carried out (...) using a qualitative content analysis. The participants were 18 nurses who agreed to attend an interview and describe their own experiences of providing care to COVID-19 patients in China. They were purposively sampled, and structured, in-depth interviews were performed. Data were iteratively collected and analyzed from February to March 2020. Ethical considerations: The proposal was approved by the Research Ethics Committee of the Second Hospital of Shandong University, China. Findings: The findings revealed three main themes and 10 categories. The themes were the following: (1) ethical challenges (people with COVID-19, inequality, professional ethics, and job competency); (2) coping styles (active control and planning, seeking support as well as catharsis, and staying focused); and (3) impacts on career (specialized nursing skills, scientific research ability, and management skills). Conclusion: Nurses faced ethical challenges on multiple fronts in caring for COVID-19 patients. The results may help nurses with more safety, ethics, and humanistic care in nursing practice. (shrink)

The management of an infant after a decision to withdraw active treatment creates dilemmas. Both lingering death and active killing are undesirable, but palliative interventions can hasten death. We investigated what staff on our neonatal unit thought were the limits of acceptable practice and why. We administered a structured interview to elucidate their views, and asked them to justify their answers. The interviews were analysed quantitatively and qualitatively. A total of 25 participants (15 nurses and 10 doctors) were recruited. 80% (...) emphasized the importance of pain relief following withdrawal, 60% mentioned meeting parental needs at that time. 76% agreed that death can be a desired consequence of withdrawal, yet 52% felt that death should never be hastened. 96% felt that morphine is acceptable after withdrawal, and 72% would give a higher than normal dose if necessary. 56% would stop paralysis at extubation but not reverse it, while 24% would continue paralysis. 16% would consider a drug that ended life instantly in some cases. A wide variety of views emerged, but there were two main positions, a cautious majority, and a more proactive minority. Apparent contradictions within the majority position could be explained using the doctrine of double effect and the acts and omissions distinction. (shrink)

Background With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. Methods We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders (...) among Yoruba living in Ibadan, Nigeria. We used Atlas-ti v.8.3.17 software to analyze the data, using thematic approach. Results The study participants identified several linguistic and cultural concepts including words, proverbs, and aphorisms that are used to describe heritable characters, traits and diseases in their local dialect. These included words that can be appropriated to describe dominant and recessive traits, variations in penetrance and dilution of strength of heritable characteristics by time and inter-marriage. They also suggested that these traits are transmitted by “blood”, and specific partner’s blood may be stronger than the other regardless of sex. Conclusions Indigenous Yoruba populations have words and linguistic concepts that describe the heritability of characters, traits and diseases which can be appropriated to improve comprehension and adequacy of informed consent in genomics research. Our methods are openly available and can be used by genomic researchers in other African communities. (shrink)

This paper explores organizational spirituality, uncovers it as spiralling dynamics of both positive and negative potentialities, and proposes how leaders can shape these dynamics to improve the human conditions at the workplace. Based on case study of five Turkish organizations and drawing on the emerging discourse on spirituality in organizations literature, this study provides a deeper understanding of how dynamic patterns of spirituality operate in organizations. Insights from participant observation, organizational data, and semi-structured interviews yield three key themes (...) of organizational spirituality: reflexivity, connectivity, and responsibility. Each of these themes has been found to be connected to upward spirals (inspiration, engagement, and calling) and downward spirals (incivility, silence, and fatigue). The study provides a detailed and holistic account of the individual and organizational processes through which spirituality is enacted both positively and negatively, exploring its dynamic and dualistic nature, as embodied in the fabric of everyday life and culture. (shrink)

Exploring the spiritual cognition of human organ donation registration volunteers, aiming to provide new ideas for promoting the development of organ donation through this perspective. This qualitative research was conducted following the conventional content analysis method. 10 registered volunteers for human organ donation were selected from July to December 2023 for face-to-face semi-structured interviews. Snowball sampling was employed to select the participants. In-depth semi-structured interviews were conducted for data gathering. Theoretical saturation was achieved through 10 interviews. Colaizzi phenomenological 7-step (...) analysis method was used to analyze the interview content. The spirituality of registered volunteers for human organ donation can be summarized into three themes and seven sub themes: ① Spiritual Understanding (Love & Life Extension, Dedication to society, Death elevates life); ② The Supporting Role of Spirituality (Become a spiritual motivation for a better life, self-transcendence ); ③ The Spiritual Emotional Value of Organ Donation (Sense of accomplishment and pride, Sense of complexity and ambivalence). The willingness to donate organs is closely related to spirituality. By understanding the spirituality of this group, it is possible to take an important step in promoting the development of organ donation. (shrink)

We conducted focus groups with participants of a laboratory experiment on cheating with the aim to describe and structure participants’ lived experience with the experiment and to compare their per...

Admitting hospital patients: a qualitative study of an everyday nursing task In recent years new modes of nursing work have been introduced globally in response to radical changes in healthcare policies, technology and new ideologies of citizenship. These transformations have redefined orthodox nurse–patient relationships and further complicated the division of labour within health‐care. One distinctive feature of the work of registered nurses has been their initial assessment of patients being admitted to hospital, and it is of interest that (...) this area of nursing practice remains central to the registered nurse's role at a time where other areas of practice have been relinquished to other occupational groups. This qualitative study, drawing on conversation analysis and ethnographic techniques, explores this area of everyday nursing work. Initial nursing assessments have attracted considerable interest in the nursing literature, where it is clearly stated that assessments should be patient centred and seen as the important first step on the road to a therapeutic nurse–patient relationship. Results from this study lead to the conclusion that the actual nursing practice of patient assessment on admission to hospital is at odds with the recommendations of the literature and that a more routinised, bureaucratic form of work is devised by nurses as a means of expediting the process of admission. (shrink)

A qualitative analysis of societal silences, demonstrating how the unsaid directs social action and shapes individual and collective lives.

Within contemporary health care, many of the decisions affecting the health and well-being of patients are not being made by the clinicians or health professionals, but by those involved in health care management. Existing literature on organizational ethics provides insight into the various structures, processes and strategies - such as mission statement, ethics committees, ethical rounds … - that exist to create an organizational climate, which fosters ethical practices and decision-making It does not, however, show how health care managers experience (...) their job as being intrinsically ethical in itself. In the present article, we investigate the way in which ethical values are present in the lived experiences and daily practice of health care management. What does it imply to take up a managing position within a health care institution and to try to do this in an ethically inspired way? We carried out a qualitative study (Grounded Theory Approach) to explore the essence of values-based leadership in health care. We interviewed 15 people with extensive experience in health care management in the fields of elderly care, hospital care and mental health care in the various regions of Flanders, Belgium. Six predominant themes, presented as metaphors, illustrate the essence of values-based leadership in health care management. These are: (1) values-based health care management as managing a large garden, (2) as learning and using a foreign language, (3) going on a trekking with an ethical compass, (4) embodying integrity and authenticity in a credible encounter with everyone, (5) being a present and trustworthy leader during sun and storm, and (6) contributing to human flourishing by giving people wings to fly. Notwithstanding the importance of organizing a good ethics infrastructure, values-based leadership in health care entails much more than that. It is about the co-creation of an integrated and comprehensive ethical climate of which community-model thinking and authentic leadership are essential components. As a never-ending process, the six metaphors can help leaders to take substantive proactive steps to shape a fruitful ethical climate within their organization. (shrink)

Imagination is necessary for scientific practice, yet there are no in vivo sociological studies on the ways that imagination is taught, thought of, or evaluated by scientists. This article begins to remedy this by presenting the results of a qualitative study performed on two systems biology laboratories. I found that the more advanced a participant was in their scientific career, the more they valued imagination. Further, positive attitudes toward imagination were primarily due to the perceived role of imagination (...) in problem-solving. But not all problem-solving episodes involved clear appeals to imagination, only maximally specific problems did. This pattern is explained by the presence of an implicit norm governing imagination use in the two labs: only use imagination on maximally specific problems, and only when all other available methods have failed. This norm was confirmed by the participants, and I argue that it has epistemological reasons in its favour. I also found that its strength varies inversely with career stage, such that more advanced scientists do (and should) occasionally bring their imaginations to bear on more general problems. A story about scientific pedagogy explains the trend away from (and back to) imagination over the course of a scientific career. Finally, some positive recommendations are given for a more imagination-friendly scientific pedagogy. (shrink)

Moral injury has primarily been studied from a clinical perspective to assess, diagnose and treat the outcomes of morally injurious experiences in healthcare and military settings. Little is known about the lived experiences of those who have had their moral values transgressed in business settings. Public scandals such as Enron suggest that moral injury may also occur in for-profit business settings. In this qualitative study, we examine the lived experiences of 16 employees in for-profit business organisations who identified (...) as having suffered moral injury. Using semi-structured narrative interviews, our findings offer insights into the values that employees feel are transgressed and the pathways between morally injurious experiences and the long-term outcomes. Based on our findings, we propose a conceptual pathway to moral injury, which suggests that experiencing moral transgressions has a profound impact on employees as they feel a threat to their “good-me” identity, however, employees employ various coping strategies to minimise the impact during the event. Employees exited the organisation and often changed career paths to protect themselves from further injury and to make up for moral failure. This study advances our understanding of the experience of moral injury in business settings and the pathway explaining how and why people react differently to moral transgressions. (shrink)

This article describes a qualitative study of models of ethics consultation used by ethics consultants in Canada. We found four different models used by Canadian ethics consultants whom we interviewed, and one sub-variant. We describe the lone ethics consultant model, the hub-and-spokes sub-variant of this model; the ethics committee model; the capacity-building model; and the facilitated model. Previous empirical studies of ethics consultation describe only two or three of these models.

The present article focuses on the issue of ignoring conversational partners in favor of one’s phone, or what has also become known as phubbing. Prior research has shown that this behavior is associated with a host of negative interpersonal consequences. Since phubbing by definition entails adverse effects, however, it is interesting to explore why people continue to engage in this hurtful behavior: Are they unaware that phubbing is hurtful to others? Or do they simply not care? Building on interviews with (...) students in a Danish business college, the article reveals a pronounced discrepancy in young people’s relationship to phubbing: While they emphatically denounce phubbing as both annoying and disrespectful, they readily admit to phubbing others. In other words, they often act against their own moral convictions. Importantly, participants describe this discrepancy as a result of an unintentional inclination to divert attentional engagement. On the basis of these results, the article develops the notion of digital akrasia, which can be defined as a tendency to become swept up by ones digital devices in spite of better intentions. It is proposed that this phenomenon may be the result of bad technohabits. Further implications are discussed. (shrink)

In this pilot qualitative study 13 clinical bioethicists from across Canada were interviewed about their experiences of conflicts of interest and/or conflicting interests in their professional roles. The interviews generated five composite cases. Participants reported being significantly impacted by these experiences both personally and professionally.

BackgroundA child’s death is the most stressful event and the most complex grief that families face. The process of psychological adaptation to the illness and death of a child is difficult due to a variety of emotional reactions. Parental grief had received the attention of researchers only in recent years when it became clear that this reality differs substantially from the general grief process.ObjectiveThis work aims to highlight the needs of bereaved parents; increase the specificity and effectiveness of the therapeutic (...) approach to prevent complications in the process of loss-making; and find the recurrent thematic nuclei in the development of bereavement present in a therapeutic group of parents who have lost their child to an onco-hematological disease.MethodBetween 2011 and 2016, five therapeutic groups for the grief elaboration were made. The sample included a total of 50 parents of children who died from cancer between the ages of 0 and 21 years.Content analysis was carried out as a qualitative analysis method. The SAS® Text Miner software was used to read, interpret, classify and integrate the data from numerous sources.ResultsThe development and consecutive interpretation of the 5 clusters have been carried out to analyze the related topics using the node “Topic Analysis” and requesting the subdivision into five topics. Four topics have been well defined. Clear topics are reducible to categories of emotional relief, tools, legacy, and unfinished business. The topic analysis provides interesting indications about the different interpretive journeys of the bereavement situation and offers ideas regarding the different types of social responses.ConclusionsAfter reviewing the existing bibliography, we have confirmed the lack of specific literature on the problem of grief in parents whose children have died from cancer. Much research has shown that parents who lose a child to cancer want support, and there are still few studies on the most effective interventions for this group. (shrink)

IntroductionTo explore academia perceptions and experience with unethical authorship practices in their respective institutions.Method21 in‐depth interviews were carried out.ResultsOur analysis revealed variability in experiences with various types of unethical authorship practices among the interviewees. Second, we found that unethical authorship practices are not so unusual among academia although the exact numbers of incidents are unknown due to the fact that such practices are seldom reported. Third, our interviewees revealed that the culture of ‘publish or perish’ could be the main contributor (...) to unethical practices of authorship because publication records are the main criteria for researcher's career evaluation besides, others, which are set by the university.ConclusionIt was suggested that the institution must play a proactive role in educating and promoting awareness on authorship guidelines, through education and training, ethical leadership as well as promoting the importance of publication ethics. (shrink)

Editors have a responsibility to retract seriously flawed articles from their journals. However, there appears to be little consistency in journals’ policies or procedures for this. In a qualitative study, we therefore interviewed editors of science journals using semi-structured interviews to investigate their experience of retracting articles. We identified potential barriers to retraction, difficulties in the process and also sources of support and encouragement. Our findings have been used as the basis for guidelines developed by the Committee on (...) Publication Ethics. (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was (...) felt strongly by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)

Psychodrama is a therapeutic method in which the stage is used to enact and reenact life events with the aim of instilling, among other positive changes, hope and empowerment in a wide range of populations suffering from psychological duress. The therapeutic process in psychodrama moves away from the classic treatment of the individual in isolation to treatment of the individual in the context of a group. In domestic violence situations, in which abusive men seek to socially isolate their victims from (...) family and friends, the social support that psychodrama provides can positively influence the psychological health and well-being of the participants. This qualitative study examines the manner in which psychodramatic treatment can empower abused women residing in domestic violence shelters and help them regain control of their lives. An action research study of domestic violence survivors living in a women's shelter in Israel, over a 12-month period, demonstrates the role of psychodrama therapy in promoting the reduction of anxiety, stress, guilt, and self-blame, while reinforcing perceptions of self-worth and confidence. These findings contribute to our understanding of the potential of psychodrama in helping reshape life roles and reframe experiences within a creative process, with the aim of facilitating a transition from powerlessness to powerfulness among vulnerable populations. (shrink)

Autistic children do not consistently show conventional signs of social engagement, which some have interpreted to mean that they are not interested in connecting with other people. If someone does not act like they are interested in connecting with you, it may make it difficult to feel connected to them. And yet, some parents report feeling strongly connected to their autistic children. We conducted phenomenological interviews with 13 mothers to understand how they experienced connection with their 5- to 14-year-old nonspeaking (...) autistic children. Mothers of nonspeaking autistic children represent a unique group in which to study connection because their children both may not seem interested in connecting with them and have limited ability to communicate effectively using speech, a common way people connect with each other. The mothers in this study interpreted a range of child behaviors—some unconventional, but many conventional—as signs that their children were interested in connecting with them, (re)framed child behaviors that could undermine connection as caused by factors unrelated to the relationship, and expressed several convictions that may help build and sustain connection in the face of uncertainty about the meaning of their children’s behavior. Even though their autistic children may not consistently act in conventional socially oriented ways, these mothers reported perceiving their children’s behavior as embedded within an emotionally reciprocal relationship. (shrink)