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This paper explores the social relations between inpatients in psychiatric wards. Combining Barker's (2002) concept of 'collective illness identity' with Nelson's (1993) concept of 'epistemological communities', I draw attention to the inpatients' collective identification and experiential knowledge. Through the analysis, three aspects of the inpatients' relationships are unfolded. First, how the inpatients, through bodily expressions and narrative accounts, construct a collective illness identity based on shared experiences of symptoms and suffering. Second, the ways in which the inpatients use their shared experiential knowledge to support one another and challenge the mental health professionals. Third, how the inpatients' reflections on the long‐term potential of their relationships reveal a number of concerns related to their continuation. Centrally, the paper points to the potential and challenges that arise from the inpatients' relations to one another and their embeddedness in a specific time and space. Empirically, the paper draws on five months of participant observation conducted in two psychiatric wards in Denmark and interviews with 14 psychiatric patients. [ABSTRACT FROM AUTHOR]

The shift towards recovery‐oriented mental health care has led to the extensive growth of peer support in contemporary service delivery. When enacting peer support, peer workers (PWs) use their lived experiences of mental illness to provide support to individuals experiencing mental health difficulties. While PWs are increasingly an integrated part of mental health services, the way in which peer support unfolds in everyday practices remains understudied. Drawing on ethnographic fieldwork from Danish mental health centres, this paper investigates how peer workers and users enact experiential knowledge and expertise to support one another. Theoretically, this paper draws on a micro‐sociological approach that comprehends expertise as an interactional accomplishment enacted within institutional arrangements. First, the analysis shows how PWs and users develop affective relations based on shared illness experiences that enable the enactment of expertise. Second, it demonstrates how PWs and users engage in these relations by exchanging sympathy and knowledge according to different situational demands. Third, it shows how experiences of relational limitations make service users contest the value of experiential knowledge and PWs' position as valid experts. Centrally, this paper contributes to a general discussion of expertise and the implications of bringing lived experiences into mental health services. [ABSTRACT FROM AUTHOR]

When a baby is diagnosed with a condition needing surgery they, and their family, start down an uncertain and unknown path. Living with uncertainty underpins every stage of the journey from hospital to home. These journeys span the highly technical to the mundane. They are likely to involve, at crucial points, medicalised and specialised neonatal and surgical care in paediatric centres of excellence where parents are mere spectators. Yet ultimately parents are able to take their baby home, confident experts in their daily care. Drawing on narrative interviews with 42 UK parents whose baby underwent neonatal surgery, this paper explores how parents navigate this uncertainty through acquiring experiential and lay knowledge and developing expertise in their baby's condition and treatment options. These conditions are rare. Building on sociological understandings of the work of chronic illness, as well as more recent work on newborn screening, sharing information online and examinations of experiential knowledge, we explore lay knowledge and expertise as it intersects with biomedical and surgical frontiers. We demonstrate how the development of expertise is an emergent, three‐stage process supported by both biomedical and lay knowledge and elucidate this process of knowledge‐building as a scaffold through which to manage uncertainty. [ABSTRACT FROM AUTHOR]

Background: The use of genomic sequencing techniques is increasingly being incorporated into mainstream health care. However, there is a lack of agreement on how "incidental findings" (IFs) should be managed and a dearth of research on patient perspectives. Methods: In‐depth qualitative interviews were carried out with 31 patients undergoing genomic sequencing at a regional genetics service in England. Interviews explored decisions around IFs and were comparatively analyzed with published recommendations from the literature. Results: Thirteen participants opted to receive all IFs from their sequence, 12 accepted some and rejected others, while six participants refused all IFs. The key areas from the literature, (a) genotype/phenotype correlation, (b) seriousness of the condition, and (c) implications for biological relatives, were all significant; however, patients drew on a broader range of social and cultural information to make their decisions. Conclusion: This study highlights the range of costs and benefits for patients of receiving IFs from a genomic sequence. While largely positive views toward the dissemination of genomic data were reported, ambivalence surrounding genetic responsibility and its associated behaviors (e.g., duty to inform relatives) was reported by both IF decliners and accepters, suggesting a need to further explore patient perspectives on this highly complex topic area. Through in‐depth qualitative interviews with 31 genomic sequencing volunteers recruited from a large regional genetics service in England, this paper demonstrates the contrast in perspectives and attitudes toward genomic data held between genetics professionals and their patients. Decisions about whether to receive incidental findings should be interpreted in the context of wider social and ethical concerns in which reproduction and disability are viewed in very specific ways. For genomic sequencing patients, these societal and familial constraints may actually harm patient autonomy and reduce opportunities for justifiable incidental finding refusal. [ABSTRACT FROM AUTHOR]

Experiential knowledge is today increasingly valued in health‐care practices, public health policies and health research and education programs. However, despite popular and institutional success, the concept remains loosely defined with the result of weakening its heuristic scope and paving the way for its commodification. In this article, we seek to provide a finer characterisation of patients' experiential knowledge's features and specificities through a critical narrative review of humanities and social science (HSS) literature published in English and French (1976–2021). Inspired by Jovchelovitch's analysis of social knowledge, we seek to highlight the diversity and plurality of forms and articulations of knowledge that characterise experiential knowledge, as well as the gradual, dynamic and entangled process that leads from experience to knowledge and expertise. Our analysis points to the need for future research to adopt a resolutely pragmatic and situated orientation in the study of experiential knowledge and the new figures of the contemporary patient that they help to create. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to how research design and implementation can improve when informed by experiential, as well as technical, knowledge. In other words, public involvement can increase the epistemological resources of researchers, and contribute to research that is fit for purpose and has high external validity. Methods: This article presents an analysis of 3 meetings and 11 interviews with public collaborators and researchers in three UK‐based health research studies. Data comprised transcripts of audio‐recorded research meetings and interviews with public collaborators and researchers. Data were first analysed to develop a data‐informed definition of experiential knowledge, then thematically to investigate how this experiential knowledge was considered and received within the research space. Results: At meetings, public collaborators shared their experiential knowledge as stories, comments, questions, answers and when referring to their own roles. They were aware of crossing a boundary from everyday life, and some adapted their contributions to fit within the research space. Although researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact were identified. Conclusions: Considering experiential knowledge as a boundary object highlights that this knowledge has a different form to other kinds of knowledge that contribute to research. To enable impact from experiential knowledge, researchers need to create a space where public collaborators experience epistemic justice. Patient and Public Contribution: The Peninsula Public Engagement Group (PenPEG) was involved in the planning and conceptualization of the study, including the development of the ethics application and the interview schedules. One member of this group (Richard Fitzgerald) and one from outside the group (Leon Farmer), were full members of the author team and were involved in the data analysis. Leon Farmer has since become a member of PenPEG. Richard Fitzgerald and Leon Farmer were not involved in the three research studies sampled for this study. Sadly Richard Fitzgerald died during the course of this study. [ABSTRACT FROM AUTHOR]

Background: Though growing numbers of peer support workers are employed in the UK National Health Service (NHS), conflicts persist between core values of peer support and values which exert power within these services. Objectives: To explore what NHS mental health professionals value about the peer support worker role. Design: Five professionals from different professions and mental health settings were interviewed twice. The first interviews explored their experiences of working with peers. Transcripts were analysed using discourse analysis and psychosocial theory. Second interviews allowed participants to respond to the analysis and influence subsequent analysis. Results: Mental health professionals valued peers for the deeply empathic, relational approach they brought, based in their subjective experience. Peer work was also valued for the affect‐focused quality of this work, and the challenge peers pose to existing values in mental health services. The values of peer support troubled dominant ways of working based in forms of knowledge that favour objectivity and hence encountered challenges. Conclusions: Peers fulfil the role of amplifying the status of diverse forms of knowledge, values and related ways of working that have become marginalized in NHS mental health services. It is important that peers are not seen as an isolated solution to the marginalization of these forms of knowledge and values, but that their way of working becomes reflected in other roles whilst evoking change throughout these services. Patient or Public Contribution: Patient and Public Involvement groups were consulted both in the design and analysis stages of the study. [ABSTRACT FROM AUTHOR]

Background: Public involvement in research is seen as a quality marker by funders. To understand the process and impact of involvement, more in‐depth studies are needed on how members of the public contribute in meetings with researchers. Objectives: This study aimed to observe and reflect on what is said by public advisers in involvement. We wanted to understand (a) what knowledge and experience is shared during research meetings, and (b) how this knowledge is shared with researchers. Methods: Data were collected in November 2016 as part of the public involvement in a health technology assessment of lung cancer screening using low‐dose computed tomography. Three meetings were audio recorded and observed with the purpose of understanding how members of the public contributed during the meetings. Audio recordings were transcribed verbatim and data analysed using a thematic approach, with the coding framework developed inductively. We also included reflections from a community drop‐in session. Results: Members of the public brought three different 'sources' of knowledge and experience to meetings with researchers: direct lived personal experience; learnt knowledge; and the experience and values of others. The data suggest that group settings allow for dynamic discussions and sharing of different types of knowledge. Conclusion: Group‐based involvement meetings allow for the synergistic combination of individual knowledge and experience. This gives researchers a broader understanding of the topic, which can be the vehicle for patient impact on the research. A combination of group meeting and community drop‐in can enable more varied input into research planning and conduct. [ABSTRACT FROM AUTHOR]

Our research examines how different forms of knowledge and expertise are increasingly important in caring for people experiencing mental illness. We build on theoretical developments regarding multiple ontologies of knowing about illness. We examine how experiential knowledge of mental health problems, learned by being subject to illness rather than through objective study, is enacted in mental healthcare teams. We focus on Peer Workers (PW), individuals who have lived experience of mental health problems, and who contribute knowledge and expertise to mental health care within multidisciplinary healthcare teams. Our longitudinal study was undertaken over 2 years by a multidisciplinary team who conducted 91 interviews with PW and other stakeholders to peer support within a comparative case study design. We show how workers with tacit, experiential knowledge of mental ill health engaged in care practice. First, we show how subjective knowing is underpinned by unique socialisation that enables the development of shared interactional spaces. Second, we point to how the situated nature of subjective knowing is uniquely embedded in time and space and allows for the alignment of embodied knowledge with trajectories of care. Third, we provide insight into how subjective forms of expertise might be incorporated into multidisciplinary care. [ABSTRACT FROM AUTHOR]

This article contributes to the growing debate within art and design education research about the role, legitimacy and accountability of artefacts in the creation and generation of knowledge. I present an artefact‐based approach to visually documenting and disseminating my doctoral practice‐based fieldwork that protected the anonymity of the participants whilst supporting my exploration of the situational, interactional and tacit dimensions of participation. Constructing a three‐dimensional scaled model of the fieldwork setting and using narratives from my field notes, I undertook a cyclical reflective process where I reconstructed critical moments that took place. This was used as both a tool for communicating my participatory design educational practice and for evaluating my findings with the participants. By sharing this sense‐making process, I offer an ethical means of visually documenting fieldwork when working in sensitive contexts and with vulnerable participants, setting out the dual role this design artefact played as both a producer and carrier of experiential knowledge. [ABSTRACT FROM AUTHOR]

Members of the public face particular challenges when undergoing reproductive genetic screening. Lack of family history with genetic disease has been identified as a key barrier affecting screening uptake and responses to genetic risk. This study explores this obstacle using beta thalassaemia as a case study. Fifteen in‐depth qualitative interviews were conducted exploring the reproductive views and decisions of people at risk of transmitting thalassaemia. Eleven participants had thalassaemia themselves and/or were members of an affected family. Four participants were identified as thalassaemia carriers through genetic screening programmes with no family history. Notable differences were observed between these two groups. For thalassaemic individuals and families, past experience clarified and facilitated their sense of reproductive responsibility, however carriers struggled to relate to, and incorporate the information into their lives. It was witnessing their child becoming symptomatic—rather than receiving a diagnosis or genetic risk information per se that had the most substantial influence on carriers' subsequent views and decisions. Educational resources used to support genetic screening programmes would benefit from an engagement with the experiential accounts of life with genetic disease in order to more effectively bridge the chasm in knowledge and understanding between affected families and the general public, towards whom expansive genetic screening is aimed. [ABSTRACT FROM AUTHOR]

Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities. [ABSTRACT FROM AUTHOR]

Patients’ personal experiences and the way in which they create an intersubjective space with significant others cannot be easily formulated and organized in semantic memories. Since the role of supervision is to reach and negotiate diverse types of knowledge, the author suggests, in this article, that for supervisors to acquire a deep understanding of patients’ experiences, they need to become competent in helping their supervisees to identify, focus, and articulate their unique and valuable knowledge of the patients’ unthought experiences. Supervisees’ physical and mental presence in patients’ struggle for recognition, influence and self‐expression gives them access to types of knowledge that could not be reached in other ways. Supervisors, who have acquired this competency, are likely to create a more mutual and freer atmosphere, in the supervisory space, for considering and discussing various perspectives of patients’ experiences. The author brings an example of how a supervisor and a supervisee sidestep the regular supervision discourse and articulate the supervisee's unformulated knowledge and of how they strive to integrate this knowledge with other existing knowledge about the patient and the therapeutic process. [ABSTRACT FROM AUTHOR]