There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up. Participants had negative attitudes towards uncertainty at baseline, and low levels of uncertainty at three and 12 months. Uncertainty about (...) genome sequencing did not change significantly over time [t = 0.660, p = 0.510]. Greater perceived susceptibility for cancer [r = 0.14, p < 0.01], fear of cancer recurrence [r = 0.19, p < 0.01], perceived importance of genome sequencing [r = 0.24, p < 0.01], intention to change behavior if a gene variant indicating risk is found [r = 0.29, p < 0.01], perceived ability to cope with results [r = 0.36, p < 0.01], and satisfaction with decision to have genome sequencing [r = 0.52, p < 0.01] were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses [B = −2.364 [−4.238, −0.491], p = 0.014], lower perceived ability to cope with results [B = −0.1.881 [−3.403, −0.359], p = 0.016] at baseline, greater anxiety about genome sequencing [B = 0.347 [0.148, 0.546], p = 0.0012] at 3 months, and greater perceived uncertainty about genome sequencing [B = 0.494 [0.267, 0.721] p = 0.000] at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety about genome sequencing at 12 months [B = 0.291 [0.072, 0.509], p = 0.009]. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity. (shrink)

This essay analyzes two types of patient‐experience data to broaden and deepen understanding of trust in health care. Analysis of patients’ open‐ended comments shows a close connection between patients’ feelings of trust and their intent to recommend providers and provider organizations—a global measure to evaluate patients’ perceptions of care experiences. Patients’ comments also reveal the bidirectional building of trust between the patient and the caregiver. Trust gets built when patients perceive their caregivers to trust their knowledge of (...) their bodies as well as when caregivers demonstrate caring behaviors that earn the patients’ trust. Patients’ ratings of a closed‐ended survey item on “confidence in provider” create the greatest differentiation for the global measure of patient experience—whether patients did or did not recommend a practice or provider. The essay also discusses related findings on pre‐visit friction and the use of humor by the caregiver to expand understanding of trust. (shrink)

In this study, we tested the feasibility of conducting quantitative assessments of patients’ experiences with care in the intensive care unit (ICU), in regard to treatment with respect and dignity. Patients completed the Patient Dignity Inventory, Collaborate, and selected domains from the Hospital Consumer Assessment of Health Providers and Systems Survey. Family members were additionally surveyed using the Family Satisfaction in ICU Care questionnaire. Overall, patients reported high levels of satisfaction in terms of nurses and doctors treating them with (...) courtesy and respect; however, physical aspects of care were reported to be more problematic. While this pilot study suggests some target areas for improving treatment with respect and dignity, the findings are limited since many patients were unable to participate in the survey. Future work should be directed at developing new measures that are easier to administer in this setting. (shrink)

Organ transplantation has increased worldwide while the number of organ donors have not increased similarly. Consequently, the waiting period for transplant candidates is prolonged. Patient narratives have uncovered physical and psychosocial suffering in the transplantation process. However, relatively few studies have explored patients’ experiences in the actual waiting period. This qualitative study was conducted in Norway and aimed to describe patients’ experiences of being accepted as recipients of a new liver and their waiting following this decision. A sample of (...) 21 patients with end‐stage liver disease, placed on the ordinary waiting list for a liver transplant, were interviewed in the hospital before they went home to wait for a compatible liver. Uncertainty related to life and death was a major issue, both in the waiting period and as a response to being put on the waiting list. Another central issue was their overwhelming lack of energy. Patients inferred a linear relationship between lack of energy, physical limitations and mental distress. Despite major advances in medical treatment, little follow‐up was given during the waiting period and most of the patients seemed resigned to the inevitability of their suffering. This raises issues of health personnel responsibility and a need to heighten awareness about patient suffering during the waiting period. (shrink)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We analyzed 57 semi-structured (...) interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (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)

BackgroundHospitals face a disclosure dilemma when large-scale adverse events affect multiple patients and the chance of harm is extremely low. Understanding the perspectives of patients who have received disclosures following such events could help institutions develop communication plans that are commensurate with the perceived or real harm and scale of the event.MethodsA mailed survey was conducted in 2008 of 266 University of Washington Medical Center (UWMC) patients who received written disclosure in 2004 about a large-scale, low-harm/low-risk adverse event involving an (...) incomplete endoscope cleaning process. The survey measured patients’ satisfaction with this disclosure, their concerns about healthcare outcomes, and their recommendations for future communication, given similar circumstances.ResultsSurveys were received from 127 of 266 (48 percent) of eligible respondents; 98 percent thought that UWMC was right to inform them about this event, and mean satisfaction with the disclosure was 7.7 on a 0 to 10 scale. Of the 127 respondents, 64 percent were somewhat or very concerned that the endoscope cleaning problem might cause them health problems; 60 percent reported their impressions of UWMC’s honesty and integrity had increased; 31 percent said their perceptions of the quality of care had increased; 94 percent agreed that institutions should tell patients about any error in their care, even when the risk of harm was low, although 28 percent agreed that such notifications would make them anxious. Respondents who reported concern that the event could cause them health problems were less likely to be satisfied with the institution’s disclosure. Patients cited their right to know information material to their own health and healthcare as an important reason for disclosure.ConclusionRecipients of disclosure of a large-scale, low-harm/low-risk event overwhelmingly supported being told of the event and endorsed notification of patients for similar events in the future. Although informing patients may cause concern for some, institutions should ensure their disclosure policies and procedures reflect their patients’ preferences. (shrink)

HLDING A‐G and HEGGDAL K. Nursing Inquiry 2012; 19: 345–356 Patients’ experiences of health transitions in pulmonary rehabilitationPeople who live with chronic obstructive pulmonary disease (COPD) experience major changes in health. Coping with the illness and caring for themselves places extensive demands on them. Thus, pulmonary rehabilitation (PR) is recommended as a means to facilitate healthy transitions in everyday life with COPD. This study explores the experience of patients with COPD in terms of their transitions in health during (...) and after PR. The research was inspired by interpretive phenomenology. Thirty‐three individual qualitative interviews were conducted with eighteen patients recruited from Norwegian PR units. A thematic analysis of the interviews was performed. The interviewees described participation in PR as a time of increasing awareness of opportunities for health and well‐being with strengthened hope. The year following PR was dominated by their ongoing challenge to acknowledge limitations and explore opportunities in everyday life. Continuation of healthy transitions was facilitated by peer and professional support. The study highlights the personal resources that patients with COPD have access to in order to promote their own health. The study also highlights their vulnerability during illness and rehabilitation. The findings critique time‐limited PR and support the current trends towards patient‐centred rehabilitation efforts that incorporate user involvement and self‐management education. (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)

This article explores the patient experience of medically unexplained symptoms (MUS) from an existentialist standpoint. Drawing on the work of Jean-Paul Sartre and Simone de Beauvoir, I explore their concepts of existential situation, existential project, authenticity, and praxis. I then analyze the situation of MUS patients in the current cultural and institutional context, elucidating that a lack of explanation for their symptoms puts MUS patients in an existential bind. I illustrate the effects of the experience of MUS (...) on patients’ existential projects. Last, I develop an ethical response in the existentialist tradition from the perspective of patients, providers, and society at large. I argue that there is a collective responsibility to foster conditions more conducive to authentic patient well-being and to improve the experience of patients with medically unexplained symptoms. (shrink)

As a philosophical position, pragmatism can be critiqued to distinguish truth only with methods that bring about desired results, predominantly with scientific enquiry. The article hopes to dismiss this oversimplification and propose that within mental health nursing, enquiry enlightened by pragmatism can be anchored to methods helping to tackle genuine human problems. Whilst pragmatists suggest one reality exists, fluctuating experiences and shifting beliefs about the world can inhabit within; hence, pragmatists propose reality has the potential to change. Moreover, pragmatism includes (...) being cognisant of what works to whom reality concerns, making reality context‐driven, with a view to understand how actions shape experiences so what is generated has usefulness. Hence, it somewhat follows pragmatism can inform mental health nursing, after all, nursing is a discipline of action, and awareness is needed in how actions produce experiences that patients find helpful. Given the principles of recovery are preferably adopted in mental health care, the paper will explore how pragmatism can help nurses move towards that goal; specifically, with patients voicing their experiences. This is because like pragmatism, recovery subscribes to hope that reality can progress, and through meaningful experiences and beliefs, patients have expertise about personal difficulties alongside how life may flourish, despite mental illness. (shrink)

There has been considerable public debate on a range of complementary health practices throughout the western world, perhaps especially in Australia, United States and Europe. Most often, the research critique of these practices is restricted to quantitative or non-user qualitative research methodologies. Consequently, there is a significant gap in the research profile of complementary health services that needs to be addressed particularly in view of the rapid and ongoing increase in the use of complementary services, even in the face of (...) sometimes adverse media publicity. This paper demonstrates the contribution that phenomenologically based research can make to fill this lacuna by explicating, in detail, the client experience of a complementary health practice. The paper explores patient experience of a ginger compress, as applied by anthroposophically trained nurses, to demonstrate various therapeutic effects. Four key themes emerged including an increase in warmth and internal activity in the major organs of the body, changes in thought-life and sensory perception along with a greater sense of well-being and self-focus with the perception of clearer personal boundaries. These themes, emerging from a patient sample in New Zealand, compared favourably to the Filderklinik Study completed in 1992 in a large German state hospital. Indo-Pacific Journal of Phenomenology , Volume 4, Edition 1 July 2004. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers published (...) between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

Current health policy, high‐profile failures and increased media scrutiny have led to a significant focus on patient experience in Britain's National Health Service (NHS). Patient experience data is typically gathered through surveys of satisfaction. The study aimed to support a better understanding of the patient experience and patients' expression of it through consideration of the aspects of the patient experience on NHS wards which are by their nature impossible to capture through (...) class='Hi'>patient satisfaction surveys. Existential phenomenology was used to develop an in‐depth exploratory narrative, expressed through the voices of the participants. Data collection involved in‐depth face‐to‐face interviews with 12 purposively sampled participants, with analysis by means of hermeneutics. Though the individuality of each experience was apparent and cannot be overemphasised, common factors emerging from the data included uncertainty and unexpectedness, suffering and finitude, the futility of feedback and bureaucracy and absurdity. Overall, participants demonstrated how their individual personalities and expectations affected their response both to illness or injury and to their hospital admissions, highlighting feelings of vulnerability and voicelessness as a response to hospitalisation. The findings of this study provide useful insight into the patient experience on British hospital wards, and the value of an existential–phenomenological approach is demonstrated. (shrink)

In The Conditions for Ethical Chemical Restraint, Crutchfield and Redinger (2024) propose ethical standards for the use of chemical restraints, which they consider normatively distinct from physica...

The global crisis of the COVID-19 pandemic has considerably accelerated the adoption of teleconsultation—a form of consultation between patient and health care professional that occurs via videoconferencing platforms. For this reason, it is important to investigate the way in which this form of interaction modifies the nature of the clinical encounter and the extent to which this modification impacts the healing process. For this purpose, I will refer to insights into the clinical encounter as a face-to-face encounter drawn from (...) the phenomenology of medicine (R. Zaner, K. Toombs, E. Pellegrino). I will also take into account a criticism that has been expressed by various contemporary phenomenologists (H. Dreyfus, T. Fuchs, L. Dolezal, H. Carel), namely, that due to the lack of physical proximity to the other in all types of online encounters, such encounters lack significant features that are present in face-to-face encounters, with the most important of these being the possibility of attaining an empathetic perception of the other and a sense of embodied risk. As these elements are essential features of the clinical encounter, the aim of this paper is to determine whether teleconsultation exhibits these features. To do that, I will integrate phenomenological philosophy with qualitative research drawing materials from both the philosophical tradition, particularly with respect to the concepts of the face-to-face encounter and embodied risk (A. Schutz and H. Dreyfus), and qualitative research study regarding patient experiences of teleconsultation. I will argue that teleconsultation does involve both the possibility of perceiving the other empathetically and the possibility of experiencing a sense of embodied risk. (shrink)

Surgical “buy-in” is an “informal contract between surgeon and patient in which the patient not only consents to the operative procedure but commits to the post-operative surgical care anticipated by the surgeon.”1 Surgeons routinely assume that patients wish to undergo treatment for operative complications so that the overall treatment course is “successful,” as in the treatment of a post-operative infection. This article examines occasions when patients buy-in to a treatment course that carries risk of complication, yet refuse treatment (...) when complications arise. We coin this counter-phenomenon “cashing-out.” Cashing-out may elicit negative feelings among careproviders. We question why patients or families may wish to cash-out. One reason may be the changing epistemological position of patients as they experience a complication. The shift from the hypothetical discussion of complications during the initial informed-consent process to the experience of having a complication represents new knowledge. Patients and families may use this knowledge as the basis to revoke consent for some or all of the remaining treatment course. This article seeks to understand cashing-out in terms of the patients’ experiences. We hope to prompt recognition of this phenomenon across medical contexts and to provide impetus for further work to understand why patients may wish to cash-out. (shrink)

A fundamental aim in caring practice is to understand patients' experiences of ill‐health. These experiences have a qualitative content and cannot, unlike thoughts and beliefs with conceptual content, directly be expressed in words. Nurses therefore face a variety of interpretive challenges when they aim to understand patients' subjective perspectives on disease and illness. The article argues that theories on social simulation can shed light on how nurses manage to meet these challenges. The core assumption of social simulationism is that we (...) do not understand other people by forming mental representations of how they think, but by putting ourselves in their situation in a more imaginative way. According to simulationism, any attempt to understand a patient's behavior is made on the basis of simulating what it is like to be that patient in the given context. The article argues that this approach to social interpretation can clarify how nurses manage to achieve aims of patient understanding, even when they have limited time to communicate and incomplete knowledge of patients' perspectives. Furthermore, simulation theory provides a normative framework for interpretation, in the sense that its theoretical assumptions constitute ideals for how nurses should seek to understand patients' experiences of illness. (shrink)

Improving how health care providers respond to medical injury requires an understanding of patients’ experiences. Although many injured patients strongly desire to be heard, research rarely involves them. Institutional review boards worry about harming participants by asking them to revisit traumatic events, and hospital staff worry about provoking lawsuits. Institutions’ reluctance to approve this type of research has slowed progress toward responses to injuries that are better able to meet patients’ needs. In 2015–2016, we were able to surmount these challenges (...) and interview 92 injured patients and families in the USA and New Zealand. This article explores whether the ethical and medico‐legal concerns are, in fact, well‐founded. Consistent with research about trauma‐research‐related distress, our participants’ accounts indicate that the pervasive fears about retraumatization are unfounded. Our experience also suggests that because being heard is an important (but often unmet) need for injured patients, talking provides psychological benefits and may decrease rather than increase the impetus to sue. Our article makes recommendations to institutional review boards and researchers. The benefits to responsibly conducted research with injured patients outweigh the risks to participants and institutions. (shrink)

This highly original book examines, for the first time, how the patient movement, which works to improve the quality of healthcare, can actually be considered an emancipation movement when led by its radical elements.

This article considers the strengths and potential contributions of participatory visual methods for healthcare quality improvement research. It argues that such approaches may enable us to expand our understanding of ‘patient experience’ and of its potential for generating new knowledge for health systems. In particular, they may open up dimensions of people’s engagement with services and treatments which exceed both the declarative nature of responses to questionnaires and the narrative sequencing of self reports gathered through qualitative interviewing. I (...) will suggest that working with such methods may necessitate a more reflexive approach to the constitution of evidence in quality improvement work. To this end, the article will first consider the emerging rationale for the use of visual participatory methods in improvement before outlining the implications of two related approaches—photo-elicitation and PhotoVoice—for the constitution of ‘experience’. It will then move to a participatory model for healthcare improvement work, Experience Based Co-Design. It will argue that EBCD exemplifies both the strengths and the limitations of adequating visual participatory approaches to quality improvement ends. The article will conclude with a critical reflection on a small photographic study, in which the author participated, and which sought to harness service user perspectives for the design of psychiatric facilities, as a way of considering the potential contribution of visual participatory methods for quality improvement. (shrink)

Ethical considerationsThe study was conducted according to the principles of Declaration of Helsinki, and was approved by the Norwegian Social Science Data Services.ObjectiveTo describe patients’ experiences of staying in multiple- and single-bed rooms.Patients and methodsThis qualitative study employed a descriptive and exploratory approach, and systematic text condensation was used to analyze the material. Data were collected in a hospital trust in Norway. A total of 39 in-depth interviews were performed with patients discharged from the medical, surgical, and maternity departments.ResultsPatients had (...) ambiguous views on whether multiple-bed rooms or single-bed rooms were to be preferred. Main results include how patients cherished “the importance of others” but at the same time valued “the importance of privacy.” Being hospitalized in multiple-bed rooms was for many patients a very positive experience in terms of social interaction. Patients in single-bed rooms reported being more dependent on nurses to maintain social contact and obtain safety.ConclusionThis research provides new knowledge on how the need for privacy can be in contradiction with the need for socializing with other patients. When hospitalized, the physical structure of a hospital impacts with whom patients interact and to what extent they depend on the nursing staff to have their social needs met. (shrink)

Telepsychotherapy is an increasingly common way of conducting psychotherapy. Previous research has shown that patients usually have positive experiences of online therapy, however, with large individual differences. The aim of this study was to explore patients’ experiences of transition from in-person psychotherapy sessions to telepsychotherapy during the COVID-19 pandemic, as well as variation in the experiences with regard to the patients’ personality orientation. Seven psychotherapy patients in Sweden were interviewed and the transcripts were analyzed using thematic analysis. Additionally, the participants (...) were asked to rate their dissatisfaction/satisfaction with the transition, how hindering/helpful the transition was, and how unsafe/safe they felt after the transition in comparison to before. Personality orientation on relatedness or self-definition was assessed applying a self-assessment instrument. The participants experienced telepsychotherapy as qualitatively different from in-person psychotherapy. They reported several essential losses: the rituals surrounding therapy sessions were lost, including the transitional time and space between their every-day life and the therapy sessions, less therapeutic work was done, the therapists could lose their therapeutic stance, the sense of rapport was impaired, and the patients felt less open and emotionally available. On the other hand, some patients could feel freer online. As six of the participants had an anaclitic personality orientation, the present study could especially contribute to the understanding of how patients with strong affiliative needs and fear of abandonment experience the transition to meeting their therapists via communication technology. The participants’ self-ratings showed that they were only marginally dissatisfied with the transition and experienced the transition as slightly hindering, whereas they felt rather safe after the transition, indicating low concordance between qualitative and quantitative evaluations. New studies are needed to explore the introjective patients’ experiences of the transition. An essential topic is also to collect evidence and to test how the impaired sense of rapport when using communication technology can be remedied by adequate, patient-tailored interventions, a topic that has to be included in psychotherapy education and training. (shrink)

Aims The aim of this study was to examine if it is plausible to interpret the appearance of shame in a Swedish healthcare setting as a reaction to having one's honour wronged. Methods Using a questionnaire, we studied answers from a sample of long-term sick-listed patients who had experienced negative encounters (n=1628) and of these 64% also felt wronged. We used feeling wronged to examine emotional reactions such as feeling ashamed and made the assumption that feeling shame could be associated (...) with having one's honour wronged. In statistical analyses relative risks (RRs) were computed, adjusting for age, sex, disease-labelling, educational levels, as well as their 95% CI. Results Approximately half of those who had been wronged stated that they also felt shame and of those who felt shame, 93% (CI 91 to 95) felt that they had been wronged. The RR was 4.5 (CI 3.0 to 6.8) for shame when wronged. This can be compared with the other emotional reactions where the RRs were between 1.1 (CI 0.9 to 1.3)–1.4 (CI 1.2 to 1.7). We found no association between country of birth and feeling shame after having experienced negative encounters. Conclusions We found that the RR of feeling shame when wronged was significantly higher compared with other feelings. Along with theoretical considerations, and the specific types of negative encounters associated with shame, the results indicate that our research hypothesis might be plausible. We think that the results deserve to be used as point of departure for future research. (shrink)

A commentary on “Patient-Satisfaction Surveys on a Scale of 0 to 10: Improving Health Care, or Leading It Astray?,” byAlexandra Junewicz and Stuart J. Youngner in the May-June 2015 issue.

In this paper we articulate confirmation and disconfirmation as components in human motivation. We develop a theory of motivation on the basis of a model of human action and we explore aspects of confirmation and disconfirmation in the context of the meeting of dysphagic patients with their physicians. We distinguish four central elements in confirmation and disconfirmation and use these and the relations between them for the purpose of constructing a typology. Finally, on the basis of the results obtained we (...) interpret a small volume of remarks reflecting the meaning field of some dysphagic patients in relation to their physicians. The underlying motive is to develop tools for understanding health care processes. The SAUC-Confirmation-Model and the theoretical framework in which it is embedded should be seen from that point of view. (shrink)

Background: Family therapy is considered as the gold standard in treatment of adolescents with anorexia nervosa (AN). Among the different types of family therapy, multi-family therapy (MFT) is increasingly used for treating AN, and shows promising results. In this article, our focus relied on the patients’ and their parents’ perceptions of the effectiveness and the underlying mechanisms of the MFT. Methods: The present pilot exploratory qualitative study included two focus groups conducted using a semi-structured approach: one with the adolescents (n= (...) 3), and another with one or two of their parents (n= 4 mothers;n= 2 fathers). The subjects discussed were the changes observed in both AN symptoms and family interactions following therapy, and the mechanisms underlying these changes. We crossed the perspectives of the adolescents and of the parents on these two points. Results: Qualitative analysis revealed that while both adolescents and parents had difficulties relating the changes they observed in the last year to MFT, they were able to say that the group cohesion had several positive effects and that their family dynamics had improved. In the light of analysis the adolescents perceived more improvements related eating disorders symptoms than their parents did, while parents were concerned about a negative effect of MFT on their children. Discussion: While both patients and parents perceived improvements in both AN symptoms and family interactions in the past year, it was not clear if they considered MFT to have led to these improvements. FG also explored the MFT mechanisms underlying changes. Both adolescents and their parents stressed the beneficial effects of identification to others members of the group and shared experience to overcome social isolation. Parents also mentioned the sympathy they felt for each other. The idea that they give a central place to families in the therapy was also described by the families. (shrink)

Methadone maintenance treatment (MMT) is a harm reduction approach for persons who wish to stop using opioids and is rather effective if used for a minimum of 12 months. Notably, research demonstrates that many persons enrolled in MMT programs discontinue care before this time, limiting its effects. To better understand this process, we undertook an exploratory descriptive qualitative study and interviewed 12 men and women who were using MMT. Using the theoretical work of Foucault and Hardt and Negri, the interview (...) data highlighted that MMT continues to be strongly stigmatized, and that it is a system of care that involves rewards and penalties, based on if patients behave according to prescribed norms. These results suggest that MMT is a disciplinary mechanism, albeit one that impedes its own access. We consequently recommend that healthcare providers work to facilitate access to MMT, which means altering care delivery. (shrink)

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured in-depth interview format, which aimed (...) to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (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)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel (...) and mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring of dying (...) patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

Medical resource allocation is a controversial topic, because in the end it prioritises some peoples’ medical problems over those of others. This is less controversial when there is a clear clinical reason for such a prioritisation, but when such a reason is not available people might perceive it as deeming certain individuals more important than others. This article looks at the role of social utility in medical resource allocation, in a situation where the clinical outcome would be identical if either (...) person received the treatment. This situation is explored with a focus on the United Kingdom, but its conclusions have wider applications to any system where healthcare is tax-payer funded. The article proposes an experience adjusted life years system, and discusses its strengths and weaknesses. (shrink)

This editorial presents a special issue gathering four contributions about the patient’s lived experience in the context of deep-brain stimulation. It aims at clarifying the meaning of such an experience and its scope for medical practice, the health system and its legal frame.

Patients in specialist mental healthcare services who are at risk of suicide may experience their struggles as existential in nature. Yet, research on meaning in life has been relatively scarce in suicidology. This qualitative study aimed to explore how patients at risk of suicide perceived their encounters with specialist healthcare professionals after a suicide attempt (SA), with special reference to meaning in life experiences. The study was conducted in specialised mental healthcare services in Norway. Data were collected via individual (...) interviews with eight patients aged 20–75 years. Using a four-step procedure, the interviews were analysed by systematic text condensation. The participants understood their feelings of shame, self-contempt and challenging life experiences as contributing factors to their SA. They perceived that existential themes in relation to financial difficulties, shame and trauma were resolved, while issues associated with the SA, such as death, loss and beliefs, were given less attention. The participants were either ambivalent about continuing to live or wished to rebuild a meaningful life. Overall, their experiences of meaningfulness were hampered. Assisting patients with meaning in life experiences may help them alter their life interpretations and increase their ability to rebuild their lives as meaningful. The present study should be seen as a contribution to meaning-informed approaches in specialist mental healthcare services. More research is needed to equip healthcare personnel in their overall aims of preventing suicide and supporting patients at risk in their efforts to live a meaningful life. (shrink)

How patients and nurses experience the acute care psychiatric environment The concept of the therapeutic milieu was developed when patients’ hospitalizations were long, medications were few, and one‐to‐one nurse–patient interactions were the norm. However, it is not clear how the notion of ‘therapeutic milieu’ is experienced in American acute psychiatric environments today. This phenomenological study explored the experience of patients and nurses in an acute care psychiatric unit in the USA, by asking them, ‘What stands out to (...) you about this psychiatric hospital environment?’ Three figural themes emerged, contextualized by time, which was a source of stress to both groups: for patients there was boredom, and for nurses, pressure and chaos. Although they shared some themes, nurses and patients experienced them differently. For instance, nurses felt caged‐in by the Plexiglas‐enclosed nursing station, and patients felt caged‐in by the locked doors of the unit. The findings from this US study do not support the existence of the therapeutic milieu as described in the literature. Furthermore, although the nurse–patient relationship was yearned for by nurses, it was nearly absent from patients’ descriptions. The caring experienced by patients was mainly derived from interactions with other patients. (shrink)