This paper proposes a theory of how conscious emotional experience is produced by the brain as the result of many interacting brain areas coordinated in working memory. These brain areas integrate perceptions of bodily states of an organism with cognitive appraisals of its current situation. Emotions are neural processes that represent the overall cognitive and somatic state of the organism. Conscious experience arises when neural representations achieve high activation as part of working memory. This theory explains numerous phenomena (...) concerning emotional consciousness, including differentiation, integration, intensity, valence, and change. Ó 2007 Elsevier Inc. All rights reserved. (shrink)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological (...) issues of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

In this paper I explicate a technique which can be used to make subtle relational features of experience more evident to awareness. Results of this method could be employed to diffuse one intuition that drives the common critique of functionalist-information theoretic accounts of mind that "qualia" cannot be exhaustively characterized in information theoretic-functional terms. An intuition that commonly grounds this critique is that the qualitative aspects of experience do not entirely appear in consciousness as informational-functional structures. The (...) first section of the paper is a schematic overview of nature of the qualitative and the problem that qualia are taken to create for information theoretic-functionalist theories of mind. §2 contains a précis of the concept of different levels of functional scale in mental activity that was developed by Armstrong and the Churchlands and that is needed to interpret (possible) results of the proposed experiment. In §3, I outline a method whereby analogies would be generated between purely relational forms, structures, configurations, etc. and purely qualitative aspects of experience. These analogies would be created by subjects through forced choice selection of presented images of structures that "most resembled" a pure quality. Repeated choices would then be shaped by a genetic program into the structural configuration that "most resembled" the pure quality. The final section of the paper explores how consistent, reliable results from the experiment would make information-theoretic functionalism more intuitively plausible in spite of the "fact" that the qualitative aspects of experience do not immediately appear as entirely relational/structural. (shrink)

It has been hypothesized that psychedelic experiences elicit lasting psychological benefits by altering narrative selfhood, which has yet to be explicitly studied. The present study investigates retrospective reports (n = 418) of changes to narrative self that participants believe resulted from, or were catalysed by, their psychedelic experience(s). Responses to open-ended questions were analysed using inductive and deductive thematic coding and interpreted within agent-centred approaches to development and well-being. Themes include decentred introspection, greater access to self-knowledge, positive shifts in (...) self-evaluation processes, greater psychological and behavioural autonomy, and enhanced connectedness with others and the world. While this explorative qualitative study offers some initial support for the explanation that changes to narrative self are a cornerstone of psychedelics' therapeutic and transformative potential, methodological and recruiting limitations preclude the ability to make objective claims and generalizations. Future scientific research is necessary to further elucidate this hypothesized mechanism. (shrink)

This paper sets out from the hypothesis that the embodied competences and expertise which characterise dance and sports activities have the potential to constructively challenge and inform phenomenological thinking. While pathological cases present experiences connected to tangible bodily deviations, the specialised movement practices of dancers and athletes present experiences which put our everyday experiences of being a moving body into perspective in a slightly different sense. These specialised experiences present factual variations of how moving, sensing and interacting can be like (...) for us as body-subjects. To use of these sources inevitably demands that qualitative research methodologies – especially short-term ethnographical fieldwork – form part of the research strategy and qualify the way the researcher involves a second-person perspective when interviewing dancers and athletes about their experiences. In the subsequent phases analysing the data generated, I argue that researchers first strive to achieve internal consistency of empirical themes identified in the case of movement practices in question thus keeping to a contextualised and lived perspective, also denoted as an emic perspective. In subsequent phases phenomenological insights are then actively engaged in the exploration and discussion of the possible transcendental structures making the described subjective experiences possible. The specialised and context-defined experiences of ‘what a moving body can be like’ are accordingly involved as factual variations to constructively add to and potentially challenge phenomenological descriptions. Lastly, I exemplify how actual research strategies have been enacted in a variety of projects involving professional dancers’, golfers’ and sports dancers’ practices and experiences, respectively. (shrink)

In this article we compare the experiences of women members of the board of directors of U.S. and Norwegian corporations. Based on the personal stories of two women directors from each country, we discuss similarities and differences in the role and characteristics of women corporate directors and the processes and behaviours they are involved in as directors within and outside the boardroom. We also investigate the role of gender-related dynamics in these two countries, focusing on board roles and processes, and (...) the visible and invisible board structures with which women corporate directors contend. (shrink)

I argue that the physiological, phenomenal and conceptual constitute a trichotomous hierarchy of emergent categories. I claim that each category employs a distinctive type of interactive mechanism that facilitates a meaningful kind of environmental discourse. I advocate, therefore, that each have a causal relation with the environment but that their specific class of mechanism qualifies distinctively the meaningfulness of that interaction and subsequent responses. Consequently, I argue that the causal chain of physical interaction feeds distinctive value-laden constructions that are ontologically (...) distinct for each category. Within the limitations of the interactive mechanisms of each category, increasingly sophisticated forms tend to evolve. The increase in sophistication in each category inevitably leads to the emergence of the novel mechanism particular to the next in the hierarchy. In essence, there is an emergent hierarchy of evolving categories delineated by the nature of their mechanism of environmental engagement. I argue that biochemical mechanisms have a tendency to evolve meaningfully, specifically in a way that is both qualitatively relevant and responsive to environmental particulars. I explain that these mechanisms set in play an organisational imperative that leads to the emergence of the capacity to evaluate and prioritise qualitative biochemical assimilations which, inevitably, generates a subjectively individuated experience phenomenon. I then relate this to the novel characteristics of the human perspective. (shrink)

The qualitative method of phenomenology provides a theoretical tool for educational research as it allows researchers to engage in flexible activities that can describe and help to understand complex phenomena, such as various aspects of human social experience. This article explains how to apply the framework of phenomenological qualitative analysis to educational research. The discussion within this article is relevant to those researchers interested in doing cross-cultural qualitative research and in adapting phenomenological investigations to understand students’ (...) cross-cultural lived experiences in different social educational contexts. (shrink)

In this paper, I compare various theories of perception in relation to the question of the epistemological and ontological status of the qualities that appear in perceptual experience. I group these theories into two main views: quality externalism and quality internalism, and I highlight their contrasting problems in accounting for phenomena such as perceptual relativity, illusions and hallucinations. Then, I propose an alternative view, which I call qualitative relationism and which conceives of the subject and the object of (...) perceptual experience as essentially related to one another in a process of co-constitution out of fundamental qualities. I lend support to this view by drawing on Husserl’s genetic phenomenology, which I complement with a form of neutral monism. I argue that the investigation of the temporal structure of perceptual experience leads us to find at its heart a qualitative process that is more fundamental than the two relata of perception and that gives rise to them. Then, I extend this account of perception into a general theory of intentionality and experience and I develop its implications into a neutral monist metaphysics. (shrink)

Emergency care providers regularly deal with ethical dilemmas that must be addressed. In comparison with in-hospital nurses, emergency medical service personnel are faced with more problems such as distance to resources including personnel, medico-technical aids, and information; the unpredictable atmosphere at the scene; arriving at the crime scene and providing emergency care for accident victims and patients at home. As a result of stressfulness, unpredictability, and often the life threatening nature of tasks that ambulance professionals have to deal with every (...) day, ethical decision-making has become an inevitable challenge. The content analysis approach was used to conduct the present qualitative study in Iran. The participants consisted of 14 EMS personnel selected through purposive sampling, which continued until the data became saturated. Data were collected using semi-structured interviews and analyzed concurrently with their collection through the constant comparison method. The process of data analysis resulted in the emergence of 3 main categories “respecting client’s values”, “performing tasks within the professional manner”, “personal characteristic”, and the emergence of eight sub-categories signifying participants’ experiences with regard to EDM. According to the results, when EMS personnel are faced with ethical dilemmas, they consider the client’s values and professional dignity, and perform the assigned tasks within the framework of the regulation. The findings also suggest that pre-hospital care providers assess legal consequences before making any decision. Further studies should be conducted regarding the experiences of the subordinates and other related parties. (shrink)

Despite the importance of emotions for learning and performance of future behaviors, few studies have attempted to qualitatively describe emotions that arise in response to self-control successes and failures. This study is the first qualitative analysis to examine the complexity of goals that give rise to self-control challenges of two types—initiation and inhibition—and the emotions that follow success and failure experiences. Thematic analysis revealed a sometimes blurred line between inhibition and initiation, and a variety of goals that challenge views (...) that successful self-control is good and unsuccessful self-control is bad. Descriptions of self-control challenges and resulting experiences further uncovered distinctions and apparent emotional profiles characteristic of self-control dilemmas involving inhibition or initiation, suggesting that these two forms of self-control are not only theoretically but also experientially distinct. (shrink)

Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used (...) to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. (shrink)

BackgroundAdolescents living with human immunodeficiency virus (HIV) experience challenges, including lack of involvement in their care as well nondisclosure of HIV status, which leads to poor adherence to antiretroviral therapy (ART). Parents have authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents’ experience of challenges identified by adolescents ages 10–19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. MethodsAn exploratory (...) descriptive qualitative design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10–19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis.ResultsQualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame.ConclusionLack of adolescents’ involvement in their care decision making and delayed disclosure of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania. (shrink)

This study investigated the business ethics experiences of Australian managers in China, using qualitative methodology to identify themes. Thirty-one Australian managers who had spent on average 8.7 years working in business connected to China participated in in-depth interviews regarding their business ethics experiences in China. Commonly, managers identified issues relating to a broad spectrum which could be labelled "bribery and facilitation". Other repeated themes included requests for visa assistance, employee theft, nepotism and non-adherence to contractual obligations. This study has (...) important implications for helping Australian managers improve the way they approach potential ethical situations in China. Four key coping strategies can be identified from the data: managers spoke of not compromising their own morals, of attempting to understand the motivation of Chinese colleagues, of talking to others and of adhering to company policy. These strategies suggest practical steps may be taken by organisations when training managers for business activities in China. In particular, structuring of mentoring relationships between experienced and less experienced practitioners may be of assistance. Cultural training for managers and clear company policy on contentious issues such as bribery may also be of benefit. The themes identified in the study also have implications for academics researching expatriate business peoples' experiences in China. (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)

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)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

This analysis examines the practice of care providers in residential aged care lying to residents with dementia. Qualitative data were collected through multiple methods. Data here represents perceptions from registered and enrolled nurses, personal care assistants, and allied health professionals from five residential aged care facilities located in Queensland, Australia. Care providers in residential aged care facilities lie to residents with dementia. Lying is conceptualized as therapeutic whereby the care provider’s intent is to eliminate harm and also control behaviour. (...) Care providers of residents with dementia in RACFs need guidance around lying. An ethical framework cognisant of an ethical theory of good and ethical theory of right supplemented by a theory of virtue is proposed. A complimentary four stage communication strategy that promotes truth telling as a first option while also recommending the lie as a suitable strategy is also promoted. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them (...) which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

IntroductionUrinary incontinence is a prevalent disorder amongst older women. Identifying the psychosocial experiences of older women in disease management can improve the patient care process. Hence, the present study aimed to determine the psychosocial experiences of older women in the management of urinary incontinence.MethodsThis qualitative study was conducted using conventional content analysis. The study data were collected via unstructured in-depth face-to-face interviews with 22 older women suffering from urinary incontinence selected via purposive sampling. Sampling and data analysis were done (...) simultaneously and were continued until data saturation. The interviews were recorded, transcribed, and analyzed using the method proposed by Graneheim and Lundman.ResultsThe results indicated that the older people with urinary incontinence had various psychosocial experiences while living with and managing this disease. Accordingly, four main themes were extracted from the data as follows: “problem incompatibility with the disease,” “mental impasse,” “facing social restrictions,” and “concealment and social escapism.”ConclusionThe findings demonstrated that older people with urinary incontinence experienced significant psychosocial pressures while living with this disorder, which affected their psychosocial well-being. Thus, paying attention to these psychosocial experiences while supporting and taking care of these patients can positively impact their psychosocial health and quality of life. (shrink)

With the surge of the COVID-19 pandemic, online sellers faced challenges in managing their online business daily. Aside from it, their work-life balance has been negatively affected as well, considering that they work from home and are responsible for household responsibilities. Thus, this study is conducted during the pandemic and gathered data using a semi-structured interview through Messenger call. It is conducted to explore the lived experiences of online sellers and how they managed their online business and personal life. It (...) also determines the specific challenges they’ve encountered and how they coped with them. Lastly, this study aims to map out how these experiences will benefit online sellers and consumers and explain that online selling can be both sustainable and convenient in terms of earning a good living and meeting their daily needs. Moreover, three major conclusions emerged from this study’s findings: (1) online sellers faced psychological and physical difficulties in managing their online business during the pandemic, (2) online sellers discovered ways on how to cope with the struggles they are facing, and (3) online sellers reflected on their experience to be more effective in the online selling industry. (shrink)

The empirical study of grace, a relational virtue, is in its beginning stages. The purpose of this study was to provide rich, context-based, qualitative data to describe Mainline Protestants’ (a) experiences of, and (b) beliefs about, divine grace. Interviews were conducted with 28 community adults who were affiliated with Mainline Protestant Churches. Results indicated that Mainline Protestant Christians have varying beliefs about divine grace and how it is related to both the present moment and the afterlife. Divine grace was (...) often defined as, or associated with, other relational virtues (e.g., forgiveness and love), and participants occasionally defined grace as a gift. In addition, divine grace was also reported to be difficult to accept at times for a variety of reasons, but the effects of divine grace have direct associations with participants’ overall well-being. Divine grace was also associated with beliefs about heaven or the afterlife, yet participants had varying beliefs about how grace is applied to non-Christians. Limitations and future directions for research are discussed in light of the present empirical literature on divine grace. (shrink)

BackgroundGenetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The study (...) assessed patients’ awareness, experiences and perceptions regarding genetic testing and the return of GGR results in a hypothetical context.MethodsThis cross-sectional study employed a qualitative exploratory approach. Respondents were patients attending the medical outpatient unit of Mulago National Hospital. Three deliberative focus group discussions involving 18 respondents were conducted. Data were analysed through thematic analysis.ResultsThree main themes and several subthemes were identified. Most respondents were aware of genetic testing, supportive of GGR and receiving results. However, only a few had undergone genetic testing due to cost constraints. They articulated the need for adequate information and genetic counselling to inform decision-making. Privacy of results was important to respondents while others were willing to share results.ConclusionThere was general awareness and support for GGR and the return of results. Stigmatisation emerged as a barrier to disclosure of results for some. Global health inequity impacts access and affordability of genetic testing and counselling in Africa and should be addressed as a matter of social justice. (shrink)

Background Cardiopulmonary resuscitation and subsequent care are subject to various ethical and legal issues. Few studies have addressed ethical and legal issues in post-resuscitation care. Objective To explore nurses’ experiences of ethical and legal issues in post-resuscitation care. Research design This qualitative study adopted an exploratory descriptive qualitative design using conventional content analysis. Participants and research context In-depth, semi-structured interviews were conducted in three educational hospital centers in northwestern Iran. Using purposive sampling, 17 nurses participated. Data were analyzed (...) by conventional content analysis. Ethical considerations The study was approved by Research Ethics Committees at Tabriz University of Medical Sciences. Participation was voluntary and written informed consent was obtained. For each interview, the ethical principles including data confidentiality and social distance were respected. Findings Five main categories emerged: Pressure to provide unprincipled care, unprofessional interactions, ignoring the patient, falsifying documents, and specific ethical challenges. Pressures in the post-resuscitation period can cause nurses to provide care that is not consistent with guidelines, and to avoid communicating with physicians, patients and their families. Patients can also be labeled negatively, with early judgments made about their condition. Medical records can be written in a way to indicate that all necessary care has been provided. Disclosure, withdrawing, and withholding of therapy were also specific important ethical challenges in the field of post-resuscitation care. Conclusion There are many ethical and legal issues in post-resuscitation care. Developing evidence-based guidelines and training staff to provide ethical care can help to reduce these challenges. (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)

Malpractice issues in psychotherapy and psychological treatments refer to the unethical behavior of a psychologist or psychotherapist toward the patient. The current study reviewed complaints directed at psychologists and psychotherapists in Sweden with regard to possible incidents of malpractice. Eligible cases were retrieved from a database managed by the Health and Social Care Inspectorate [Inspektionen för vård och omsorg (IVO)], an administrative authority responsible for the safety and quality of healthcare and social services delivery. These cases were analyzed using thematic (...) analysis. In total, 33 complaints matched the keywords proposed by IVO, and were scrutinized in detail. The cases primarily involved psychiatric care by a psychologist in outpatient settings, although many cases comprised multiple healthcare providers responsible for the patient’s care, or targeted the healthcare unit as a whole. The results demonstrated that different forms of malpractice occur, and can be classified in two general themes, Incorrect administration and implementation and Attitude and behavior, which involve organizational aspects as well as examples of malpractice and unethical behavior. Implications for clinical practice and future research include further training in ethics and malpractice, video recording or auditing sessions, routine outcome monitoring, and providing patients with information on how to file complaints. (shrink)

Although the use of the cluster randomized trial (CRT) design to evaluate vaccines, public health interventions or health systems is increasing, the ethical issues posed by the design are not adequately addressed, especially in low- and middle-income country settings (LMICs). To help reveal ethical challenges, qualitative interviews were conducted with key stakeholders experienced in designing and conducting two selected CRTs in Malawi. The 18 interviewed stakeholders included investigators, clinicians, nurses, data management personnel and community workers who were invited to (...) share their experiences related to implementation of CRTs. Data analysis revealed five major themes with ethical implications: (1) The moral obligation for health care providers to participate in health research and its compensation; (2) Suboptimal care services compromising the integrity of CRT; (3) Ensuring scientific validity and withholding care service; (4) Obtaining valid consent and permission for waiver of consent; and (5) Inadequate risk assessment for trial participation. Understanding key ethical issues posed by CRTs in Malawi could improve ethical review and research oversight of this particular study design. (shrink)

Psychopathology in children cannot be understood without considering developmental processes and transactional relationships, particularly the relationship with caregivers. Time-limited intersubjective child psychotherapy is a developmental and transactional approach aimed at helping children and caregivers get back on healthier developmental trajectories. Core developmental processes, such as self-other-regulation and affect integration, are considered particularly important for healthy function and transactions with caregivers and contexts. Therefore, TIC seeks to strengthen core developmental processes in the child and the caregivers’ ability to scaffold the child’s (...) development. This is achieved through parallel child therapy and parent sessions. The current study is a qualitative study of parents’ experiences of change after TIC. The study explores parents’ perception of change in their child, themselves, and their transactions, and what they experienced as helpful in therapy.Materials and MethodsNine semi-structured qualitative interviews were conducted with parents of nine children aged 9–12 years with internalizing difficulties after completing TIC. The data were analyzed with thematic analysis.ResultsThe parents described positive changes in the children’s ability to understand, regulate and express themselves. The parents also described positive changes in their parenting, and for all nine children the parents reported positive changes in the transactions between themselves and the child. Most parents saw the parallel child and parental sessions as particularly important, while several parents mentioned play and the therapeutic focus.DiscussionParents’ description of changes after TIC indicate that the parents perceived their children as strengthened in core developmental processes important for intersubjective exchanges such as self-regulation and affect integration. In addition, parents saw their children and their own contributions more clearly, and their transactions were described as more supportive and positive.ConclusionThe results from this study give support to TIC as a developmentally supportive approach to therapy, with potential effects on children’s core developmental processes, their parents’ ability to both see and scaffold the child’s development and positive effects on the transactions between children and parents. The positive effects likely result from the integration of the different parts of TIC and the synergies taking place between them, rather than any one component by itself. (shrink)

Skin conditions such as eczema and psoriasis are relatively prevalent health concerns in children, adolescents and young adults. Experiences of these dermatology diagnoses in adolescence have hitherto not been the focus of research, perhaps owing to assumptions that these diagnoses are not particularly impactful or intricate processes, events or labels. We draw on a thematic secondary analysis of in-depth interviews with 42 adolescents and young people living in the United Kingdom and, influenced by the sociologies of diagnosis and time, highlight (...) the psychological, emotional, social and temporal complexities involved in their diagnosis experiences. Firstly, we describe how participants remembered, re- and co-constructed their diagnosis experiences during the interview. Secondly, we explore the pace and rhythm of diagnosis, including mis-diagnoses, highlighting the jarring potential for adolescents on being diagnosed, even for conditions typically deemed minor. Thirdly, we consider the ways in which these diagnoses have the capacity to reformulate notions of past, present and future, including projecting into imagined futures and reinterpreting past bodily sensations. Finally, we examine how memories about and the meaning of diagnosis are revisited, revised and potentially replaced as a child or adolescent grows older, and increases their management of their condition and encounters with healthcare professionals. In unsettling an assumption that diagnosis experiences for adolescents of common skin conditions is unproblematic or straightforward, our qualitative analysis critically engages with and contribute to tenets of health research that are of interest to quantitative and qualitative researchers, clinicians and patients. (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)

Background Physicians play a fundamental role in the care of patients at the end of life that includes knowing how to accompany patients, alleviate their suffering and inform them about their situation. However, in reality, doctors are part of this society that is reticent to face death and lack the proper education to manage it in their clinical practice. The objective of this study was to explore the residents’ concepts of death and related aspects, their reactions and actions in situations (...) pertaining to death in their practice, and their perceptions about existing and necessary training conditions. Methods A qualitative approach was used to examine these points in depth based on interviews conducted with seven oncology residents. Results Participants do not have a clear concept of death and, although it is seen as a common phenomenon, they consider it an enemy to beat. The situations to which respondents react more frequently with frustration and sadness after the death of patients were when they felt emotionally involved, if they identify with the patient, in cases of pediatric patients and with patients who refuse treatment. To deal with death, participants raise barriers and attempt to become insensitive. Although residents in this study recognize the importance of training to learn how to better deal with death, it seems they are not fully invested in reaching more of it. Conclusions Participants face death in a daily basis without the necessary training, which appears to impact them more than they are willing to accept. They do not achieve their goals managing situations regarding death as well as they assume they do. Despite recognizing the need of more training and support for better coping with death, they prefer to continue to learn from their experience. Trial registration Not applicable. (shrink)

This paper aims to investigate the effect of gamification in engaging and motivating consumers for online shopping and also the use of gamification to enhance sales. Moreover, this study has also explored the ethical concerns in gamified marketing. This is a qualitative study to investigate the effect of gamification during online shopping and the ethical issues involved in gamified marketing. Semi-structured interviews with ten gamification experts are conducted and analyzed through NVivo. The themes that emerged from qualitative analysis (...) are the applicability of gamification in online retail, consumer experiences in gamified retail, and ethics and challenges in gamification. Semantic analysis is performed, and as per the viewpoint of the gamification experts, it was found that the perception of ethics in gamification is negative, which shows that there are many unethical practices in gamified marketing. This paper shows that by focusing on every relational aspect of consumer engagement, retailers can build trust and retain their most valuable stakeholders — the customers, thereby addressing the crucial negative concerns of gamified marketing. This research is one of its types to explore the significant ethical issues that affect consumers in the retail context. The undertaking of this study in an emerging economy adds further insight into gamified retail literature by generalizing the applicability of gamified studies across geographic contexts. (shrink)

This article begins with a review of studies in perception and depth psychology concerning the experience of exposure to sacred artworks in Roman Catholic and Eastern Orthodox contexts. This follows with the results of a qualitative inquiry involving 45 Roman Catholic, Eastern and Coptic Orthodox, and Protestant Christians in Canada. First, participants composed narratives detailing memories of spiritual experiences involving iconography. Then, in the context of a darkened room evocative of a sacred space, they viewed artworks depicting Biblical (...) themes and interpreted their meanings. Stimuli included “Western” paintings from the Roman tradition—a selection from the Gothic, Northern Renaissance, and Renaissance canon—and matched “Eastern” icons in the Byzantine style. Spiritual experience narratives were analyzed in terms of word frequencies, and interpretations of sacred artworks were analyzed thematically. Catholics tended to utilize emotional language when recalling their spiritual experiences, while religious activity was most often the concern of Protestants, and Orthodox Christians wrote most about spiritual figures and their signifiers. A taxonomy of response styles was developed to account for participants’ interpretations of Western and Eastern artworks, with content ranging from detached descriptions to projective engagement with the art-objects. Our approach allows for representation of diverse Christians’ interpretations of sacred art, taking into consideration personal, collective, and cultural-religious sources of meaning. Our paradigm also offers to enrich our understanding of the numinous or emotional dimension of mystical contact. (shrink)

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and (...) to consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)

Most studies conducted in the West on the role played by intergenerational families in co‐parenting have focused mostly on families with a single mother or those in difficult circumstances, while little is known about the experiences of members of intergenerational intact families during the early postpartum period. This study aimed to explore the intergenerational co‐parenting experiences of young parents and grandmothers in China, focusing on how they shared the responsibility of caring for the new mother and infant during the postpartum (...) period. A total of 16 eligible intergenerational intact families, including 16 mothers, 15 fathers and 12 grandmothers, were interviewed. The data set was analysed using the approach of directed content analysis guided by Feinberg's Ecological Model of Co‐parenting. The data were categorized into four themes: ‘division of labour’, ‘postpartum and infant care agreement’, ‘support‐undermining’ and ‘joint family management’. An additional theme, ‘expressed a need for family support’, emerged from the data on these intergenerational families. The findings emphasize the importance of intergenerational co‐parenting relationships in families where two generations co‐parent the newborn together. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

This article exemplifies research on the subjective life experiences of women with breast cancer, designed from a psychoanalytic perspective. Such research aims to reveal the subjective intrapsychic processes of women suffering from breast cancer, which can provide researchers and health care professionals with useful insight. Using Biographic narrative interpretative method, the study reveals some common denominators in the subjective life experiences of women with breast cancer. The study revealed that the subjects consider the diagnosis of breast cancer as one of (...) the four main events in their lives. Even though these events are very different from each other, in terms of type and severity, the results indicate a common process in the way these life events are experienced by the participants. These results are relevant for health care practitioners in structuring their psychosocial support programs so as to better accommodate their patients' psychological needs. (shrink)