Patient empowerment as capabilities: The perspective of patients with epilepsy at a medical-social center in France.

The aim of the study was to develop a new conceptual framework of empowerment based upon the perspective of patients with refractory epilepsy at the medical-social center of La Teppe (France). A qualitative research methodology was used, which consisted of focused ethnography and in-depth interviews. The 19 patients interviewed came from three hospital services and were in the age range of 20-60. Ten interviews were also conducted with healthcare providers, which included neurologists, psychiatrists, nurses, and social educators. Results were analyzed via an intuitive process of thematic analysis. The researcher also constructed narrative cases of the patient interview to better understand patient responses in context. The results show that patients understood empowerment as the ability to develop and take advantage of opportunities in their overall lives. This included searching to be healthy by reducing their seizures, developing their practical reason in order to be able to make more autonomous life choices, and living with and toward others in positive social relationships. The patient's perspective on empowerment encompasses but also goes beyond their medical care. We therefore propose a novel conceptual framework for empowerment as the patient's capabilities to develop and make their life choices, with help as needed from their support network. In order to help patients toward empowerment, clinical care can include discussions and dedicate resources that help patients work toward their overall life projects. Several methodologies, including the use of a personalized project and therapeutic patient education, are elaborated to give ideas for empowerment programming in epilepsy care.

Need for patient-developed concepts of empowerment to rectify epistemic injustice and advance person-centred care.

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution's perspective and priorities. In these debates, the patient's voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment.

Untangling fear and eudaimonia in the healthcare provider-patient relationship.

Ensuring patient participation in healthcare decision making remains a difficult task. Factors such as a lack of time in the consultation, medical objectivation, or the difficulties of translating individual patient experience into the treatment plan have been shown to limit patient contributions. Little research attention has focused however on how emotions experienced by both the patient and the healthcare provider may affect the ability of the patient to participate. In this research, patient's and healthcare provider's emotions were identified and analysed. The research method showed fear as a prominent emotion experienced. This included patient's fears both inside and outside the consultation, as well as the healthcare provider's fears in their professional practice. Using Martha Nussbaum's cognitive-evaluative theory of emotions as an additional means of analysis, the research looked at what this emotion could show about the importance of the object of this fear to the person's eudaimonia (flourishing). At the end of the article, several solutions were proposed to help mitigate this fear to keep it from becoming a destructive force in the healthcare provider-patient relationship.

Falling on deaf ears: a qualitative study on clinical ethical committees in France.

The French medical context is characterized by institutionalization of the ethical reflection in health care facilities and an important disparity between spaces of ethical reflection. In theory, the healthcare professional may mobilise an arsenal of resources to help him in his ethical reflection. But what happens in practice? We conducted semi-structured interviews with 22 health-care professionals who did and did not have recourse to clinical ethical committees. We also implemented two focus groups with 18 professionals involved in various spaces of ethical reflection in order to let them debate about a better way to organize ethical reflection in their institutional contexts. The qualitative analysis allows to us to underline the coexistence of different conceptions of ethics among health care professionals. We also observed that the participants in our study shared the experience of ethically problematic situations as roadblocks in the process of communication and decision-making. We therefore report the factors which favour or inhibit the ethical course leading to the resolution or at the very least soothing of the situation at hand. Finally, we discuss methodological issues and underline the fact that while the patient is at the heart of the professional's ethical preoccupations, this does not imply that they are actors in decisions that concern them.

Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.

This article elaborates research participant perspectives on the communication of individual research results from genomic analyses. While most analyses focus on how to communicate results from the perspectives of clinicians or researchers, there is insufficient data on user perspectives and how this information may be used, valued, and interpreted by patients and their families. The concept of personal utility, which considers factors related to quality of life, including on how information may impact the person's future decisions, has been shown to be particularly relevant to understand research participant perspectives and to move beyond clinical and analytic utility factors such as mortality and morbidity. This article draws from qualitative research of research participants awaiting genomic results in the case of sudden cardiac death. Our results show perspectives of personal utility in communication of genomic results, including cognitive, behavioral, and affective outcomes. Cognitive outcomes include gain of information, improved knowledge of etiology and inheritance characteristics, and curiosity for what might be found. Behavioral outcomes include being able to plan life decisions, while affective outcomes include various coping strategies used. We will also discuss the value of knowing negative results and incidental findings from the research participant's perspective. This contribution gives suggestions on best practices to guide genome analysis returns, including incorporating participant wishes on individualized communication at the consent stage; developing relational autonomy approaches; and engaging them throughout the research trajectory.

What went right during the COVID crisis: The capabilities of local actors and lasting innovations in oncology care and research.

This article will elaborate how oncology care and research was adapted during the COVID pandemic in the Metropole of Lyon (France), including the lasting innovations that came out of the crisis. The research method involved 22 semi-structured qualitative interviews of healthcare professionals, managers, and researchers in the Lyon, France region coming from both public and private academic hospitals. The interviews took place from February 2021-December 2022 in order to assess the long-term adaptations and innovations in cancer care organization in the post-COVID era. The main results show adaptations and innovations in 1) new processes and resources to facilitate disciplinary and interdisciplinary work; 2) harmonization and streamlining of patient journeys. In the discussion section, we will mobilize the capabilities approach, an interdisciplinary social sciences approach that focuses on the capabilities of persons to be and to do, to elaborate the conditions by which local actors were able to be agile, to adapt and to innovate in spite of the healthcare emergency and in coherence with their professional and personal values.

Moving Toward Person-Centered Care: Valuing Emotions in Hospital Design and Architecture.

The intangible value of emotions is often neglected in healthcare evaluations; however, it forms an important part of the hospital experience that needs to be taken into consideration to move toward person-centered care. This article conceptualizes how space and architecture may influence patient, family, and healthcare provider emotions. Building upon Gaston Bachelard's Poetics of Space, theories on emotional design and architecture, as well as research in environmental design, we suggest several ways to value emotions in hospital design and architecture. The first theme explores several hospital spaces (the waiting room, the hospital room, the treatment room) using Bachelard's phenomenology in order to show how to facilitate emotional security by catering to the individual needs of the user. The second discusses the overall hospital room environment, notably the influence of light, color, and sound on the patient's emotional experience. The third explores architectural theorist Giuliana Bruno's theory of e(motion) to explore the hospital space as vissuto, a space of lived experiences, that invites us to rethink the design and architecture of hospital spaces to allow for patient participation. The article also gives suggestions of qualitative, person-centered methodologies that can be used to move forward this debate.

Organisation of cancer care in troubling times: A scoping review of expert guidelines and their implementation during the COVID-19 pandemic.

This scoping review mapped the main themes in existing expert guidelines for cancer care issued during the COVID-19 crisis from the period of March 2020-August 2021. The guidelines published during the research period principally relate to the first two waves in Europe and until the beginning of the vaccination campaign. They elaborated recommendations for cancer care reorganisation, in particular triage and quality of care issues. The article highlights the ethical, epistemological, as well as practical reasons that guidelines were not always followed to provide some lessons learned for future crises to enable better guideline development processes. We also elaborate early evidence on the impact of triage decisions and different perspectives on cancer care reorganisation from ethics and social science literature.

"Repeated Hierarchies": Uneven Participation in Research of Ethical Spaces in Hospitals.

We present a case study of uneven participation in a focus group discussion with health care professionals involved in local ethical committees. We conclude that the status of the different participants did not give adequate space for full participation of the members involved. Two commentators were invited to comment on the case study to enable further reflection on the methodology used for the target group. The first reviewer investigated whether research should address power relations and hierarchies of knowledge encountered in the study process. She also discussed whether researchers should be held ethically and politically responsible for the consequences of producing relations and hierarchies. The second reviewer looked at what focus groups say about professional practices in hospitals, what participants are willing (or unwilling) to invest, and what are the conditions for setting up ethical reflection.