HEALTH

Conceptualising wellbeing among health-care workers during the Covid-19 pandemic
McHugh J, Trotman P, Nicholson HD and Smith-Han K
Since 2020 health workers everywhere have been challenged by the ongoing ramifications of the Covid-19 pandemic. This virus impacted all aspects of life but health-related workplaces particularly, were transformed virtually overnight. Demands were heightened and customary supports came under pressure presenting a huge crisis for health systems. The goal of this study was to explore how this catastrophic pandemic event impacted the wellbeing of healthcare professionals (HCPs) working through this time. Interviews with 57 HCPs from multiple countries and specialty areas were explored utilising inductive content analysis (ICA). Resulting data were then categorised into themes and deductively analysed utilising a method informed by Capability Theory. These were secondary data as the interviews were part of a larger set collected primarily for the purpose of a documentary being made about this experience. This study found that illbeing experiences were prevalent among HCPs. However, significant sources of wellbeing were also evident, and were instrumental in maintaining HCP resilience. Wellbeing was enhanced when HCPs experienced a small number of key that enabled a broad range of The were for (a) participation in positive relationships, (b) a sense of identity, purpose, meaning and value in relation to one's work and (c) ability to provide an appropriate level of medical treatment, care and other role related support. These c were central to HCP wellbeing irrespective of the individual's location and specialty area, however the ability to realise these in desired was differentially impacted by each individual's unique circumstances.
Scaffolding patient agency: Conceptualising readers' cognitive work in the comic gutter
Roberts A
A life-limiting illness can erode an individual's positive sense of self. Storytelling can help counteract this, through scaffolding patients' agency and supporting them in acting to change something which matters to them. This article explains how visual stories - comics - are used within the PATCHATT intervention to support the redevelopment of a person's agential self. Through the provision of a conceptual map, this article explores the gutter as a liminal space, arguing for the importance of the deep reader engagement which takes place there. It uses Bob's comic, a story used within PATCHATT, to explore how reflexivity and imagination work together within the liminal space of the gutter to stimulate and enhance palliative care patients' agential change leadership. It concludes by considering the implications of the argument put forward for palliative care practice.
Telemedicine and patient-centered care: The perspective of primary-care physicians
Keshet Y, Popper-Giveon A and Adar T
Patient-centered care (PCC) has become a central aim for healthcare systems worldwide due to recognition of its advantages. The growing use of telemedicine technologies (TT) raises concerns of diminishing interpersonal contact, especially in primary care, and questions the appropriate way of implementing PCC. This article aims to explore primary-care physicians' (PCP) experiences of PCC when using TT. During 2023 in-depth interviews were conducted with 20 Israeli PCP: family physicians and pediatricians. The PCP described their experiences of using TT in their communication with patients as including some characteristics of PCC but not others. They related to TT as a means of forming relationships and communicating with patients, highlighting its individualistic focus and describing it as a way of coordinating care. When describing the use of TT in their communication with patients, they barely related to empathy and respect for the patient, to their own involvement in the treatment, to shared decision-making, or to a holistic focus on the patient. The absence of interpersonal qualities and soft skills communication from the physicians' TT experience seems to erode their personal well-being and professional satisfaction and may even lead to burnout. We therefore recommend instructing PCP to better integrate PCC into their TT communication with patients since it contributes to the quality of healthcare and is significant for the well-being of both patients and physicians.
Ill persons and capable workers: Constructing work ability in return-to-work negotiations after sickness absence
Keränen H, Tiitinen S, Juvonen-Posti P, Weiste E, Seppänen S and Ala-Mursula L
In return-to-work (RTW) negotiations after sickness absence, the work ability of an individual employee becomes a shared interest for the multiple stakeholders representing both the healthcare sector and working life. In practice, the employee, employer and occupational health professionals need to reach a shared understanding of the employee's work ability to enable shared decision-making concerning the plans for sustainable RTW. Drawing on 14 video-recorded RTW negotiations, we used conversation analysis-informed membership categorization analysis to examine how the participants of RTW negotiations discuss the work ability of an employee to pursue a shared understanding of the situation. Work ability was constructed in a very situational way, using illness categories to both explain the work ability of the employee and argue for or against their ability or inability to work. Our study contributes to research on RTW by introducing a new perspective to work ability. We show how work ability is realized during RTW negotiations through interaction, and how participants leverage their cultural understanding of illness and capability when negotiating work ability. We also demonstrate how membership categorization analysis can reveal the situational and consequential aspects of illness and work ability categories.
'The MRI-scan says it is completely normal': Reassurance attempts in clinical encounters among patients with chronic musculoskeletal pain
Andersen TC, Wilhelmsen M and Lian OS
In clinical guidelines for patients with chronic musculoskeletal pain, reassurance is a key element. The purpose of reassuring patients is to change their views on their illness and, thereby, their actions. However, when symptoms persist without pathological findings, reassurance can be difficult to achieve. Drawing on observations of nineteen naturally occurring hospital consultations with chronic musculoskeletal pain patients, followed by individual interviews with both patients and clinicians, we study how they interact in relation to reassurance. Our main aim is to explore the ways in which clinicians explicitly attempt to provide reassurance, and how patients receive these attempts, before reflecting on facilitating and hindering factors for successful reassurance in relation to the sociocultural context in which their interaction takes place. Through a thematic analysis, four dominating elements of explicit reassurance were identified: (1) education through visualisation, (2) validation through technological findings, (3) validation through physical examination and (4) normalising pain. To gain a deeper understanding of the reassurance process, we then narratively explored dialogical extracts containing these elements. The analysis shows a potential lack of congruence between what patients experience, and the biomedical knowledge clinicians rely on. Despite employing a combination of affective and cognitive modes of reassurance, clinicians tend to build their final conclusions not on patients experiences but on biomedical knowledge, which is knowledge that holds epistemic primacy for themselves. In that sense, their efforts to reassure the patients might also be a way in which they seek to reassure themselves.
Sedated beauty: The invisible knife in online narratives about cosmetic breast augmentation
Roll Bennet P
Breast augmentation is a prevalent cosmetic surgery procedure among women in Western societies, and the cosmetic surgery market has witnessed substantial growth. Today, websites and online forums are platforms that feature discussions about cosmetic procedures. A genre on surgery clinic websites is 'patient stories', but also lay-initiated internet forums facilitate discussions and shared experiences related to cosmetic surgery. This study aims to analyse lay-initiated online narratives about cosmetic breast augmentation. The shared narratives contain descriptions of how women who are about to undergo breast augmentation prepare for surgery, the medical procedures that take place on the day of surgery itself, and the experiences and feelings after waking up after anaesthesia. Employing a structural analysis of 30 of these stories, this research illuminates how the surgery stories adhere to a conventional storytelling format, and how key characters within the stories are 'helpers and makers', including relatives, nurses and surgeons. The focus in these narratives revolves around the woman herself, although her active involvement is primarily observed during the preparation phase, with a more passive role assumed during subsequent clinic routines. Despite instances of pain and discomfort in the narratives, the stories are enveloped in an aura of glamour and a spa-like atmosphere. It is discussed how this 'fairy tale' story, narrating a surgical metamorphosis, seems to align with the popularisation of the cosmetic surgery sector.
Parents' experiences of waiting for their child's transplant: A focus on how healthcare providers can impact the waiting process
Smith KA, Arbour-Nicitopoulos KP and Widger K
Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers' tailoring the amount and type of medical information to a parents' needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this "managerial role" could lead to a loss of trust with their healthcare providers. Parents' accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child's transplantation and other life-threatening illness contexts.
'They think we're just in God's waiting room': A discursive study on identity aloneness in stroke survivors
Jefferson L and Dunne S
This paper examines the rhetorical strategies used by stroke survivors to attend to identity aloneness, a phenomenon in which individuals experience a sense of disconnect from others as a consequence of identity change, for which stroke is known as an antecedent. Three stroke survivors, and their spouses, were interviewed about their stroke, social support, and experiences with loneliness and identity change. The data was transcribed using a simplified version of the Jeffersonian method and analysed using a critical discursive psychological approach. This made it possible to examine the way in which the psychological business of identity aloneness was managed in participants' talk via discursive devices such as metaphors and category entitlement, while also leaving room to consider how broader societal discourses were drawn upon. The analysis revealed two critical ways in which participants attended to the issue of identity aloneness: (1) by crafting and occupying a position of resilience; (2) by managing the impact of the post-stroke social world on their identities. These findings offer insight into how the issue of identity aloneness is made sense of by stroke survivors in the context of a discussion with an interviewer. Finally, findings informed future directions for research, including developing a comprehensive theory of identity aloneness using a grounded theory approach and developing and validating a psychometric measure of identity aloneness to be applied in a rehabilitative setting.
The embodied experience of genetic inheritance in hereditary thrombophilia
Tomán E, Pintér JN and Hargitai R
Our study focuses on exploring the embodied experiences of genetic inheritance within and between bodies. Drawing on insights from studies on embodied experiences and family risk we examine how interviewees perceive their vulnerability, negotiate family narratives, genetic inheritance, and the transmission of genetic knowledge within families. To answer these questions, we conducted an interpretative phenomenological analysis, based on 10 in-depth interviews with patients with thrombophilia diagnosis and venous thromboembolic disease, in Hungary. Three Experiential Themes were identified: The body as a repository of risk (1), Family heritage (2), and The borderline of thrombophilia-liminality (3). Our study has found that patients living with thrombophilia interpret their bodies as repositories of genetic risk. It seems that an important aspect of adapting to thrombophilia is the creation of genetically vulnerable identities. Alongside the new identity(ies), living with risk can induce newly discovered forms of familial responsibility, within the common identification experience of family history and succession. Based on our research, we see that individuals living with thrombophilia experience the liminality of borderlands. In some cases, however, the space between health and illness represents a dynamic permeability for people with thrombophilia, which can be triggered by medical uncertainty in addition to individual experiences and life events.
Loss, shame and secrecy in women's experiences of a vulval skin condition: A qualitative study
Rees S and Arnold S
Vulval lichen sclerosus (LS) is a chronic dermatological condition affecting the anogenital area, causing intense itching, pain and bleeding. It can change the terrain of the vulva, causing loss of vulval anatomy and altered texture and appearance of the skin. There has been little research into how women experience the materialities of a dermatological vulval disease. We aimed to understand experiences of living with LS, using a feminist lens to examine the influence of societal attitudes towards women's bodies and the vulva. We conducted qualitative interviews with 20 women with vulval LS, taking a critical feminist grounded theory approach. While we found that women's experiences of vulval LS symptoms was normalised as a part of womanhood, there was a silencing of speech about the vulva generally, and vulval symptoms more specifically. This caused profound shame and loneliness, and was a barrier to disclosing and seeking help for vulval symptoms, leading to delayed diagnosis and disease progression. Loss of vulval architecture resulted in a loss of (feminine) self and the sense of a body which was whole.
Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted family biographies and damaged moral identities
Molinaro ML, Polzer J, Laliberte Rudman D and Savundranayagam M
Drawing on Arthur Frank's conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from cancer, as well as their own narratives as caregivers. Frank argued that when one's life story is shipwrecked by chronic or life-threatening illness, storytelling is way to reorient one's biography to a new ending, repairing the narrative wreckage created by the illness experience. In this critical narrative study with nine pediatric oncology nurses in Ontario, Canada, we highlight how, through physical, narrative, and moral proximity, nurses become entwined in their patients' and families' illness narratives, and how developing this narrative knowledge provides nurses with opportunities to steer families onto new terrain. As well, we examine how nurses re-story and repair their own identities as "good" caregivers in situations when they are prevented from acting on behalf of their pediatric cancer patients. These findings contribute to literature on illness narratives by considering narrative repair as a relational process enacted as part of pediatric oncology caregiving.
Lesbian, gay, bisexual, transgender and queer (LGBTQ+) menopause: Literature review, knowledge gaps and research agenda
Westwood S
There is growing interest in menopause discrimination in healthcare, the workplace and beyond. However, there is a dearth of research on lesbian, gay, bisexual, transgender and queer (LGBTQ+) experiences of the menopause. This article reports on a scoping review of the recent literature which identified a very limited number of articles and a wide range of knowledge gaps. This is discussed in relation to LGBTQ+ wider health, healthcare and workplace inequalities, and heteronormative and cisnormative conceptualisations of the menopause. A research agenda is proposed. Research should: be intersectional; differentiate between LGBTQ+ sub-groups; aim to understand how menopause experiences impact and are impacted by minority sexuality/gender identities; and examine how menopause healthcare and workplace support can be LGBTQ+ inclusive. Such research is urgently needed to ensure that LGBTQ+ people are fully included in menopause justice discussions and solutions.
How do we avoid polarization of interdisciplinary research on cancer diagnosis? A critical comment to: "Rethinking the Logic of Early Diagnosis in Cancer" by Damhus, Risør, Brodersen, and Jønsson (2024)
Andersen RS, Frumer M, Merrild CH, Offersen SMH, Aarhus R and Tørring ML
Reply: How do we avoid polarization of interdisciplinary research on cancer diagnosis?
Damhus CS, Risør MB, Brodersen JB and Jønsson ABR
The normativist-naturalist puzzle: Functions and assumptions of health assessment tools
Nielsen TH, Nielsen L and Klausen SH
While there is no shortage in discussions of health assessment tools, little is known about health professionals' experience of their practical uses. However, these tools rely on assumptions that have significant impacts on the practice of health assessment. In this study, we explore health professionals' experiences with health assessment tools, that is, how they define, use, and understand these tools, and whether they take them to measure health and wellbeing. We combine a qualitative, interview-based study of the uses and understandings of health assessment tools among Danish health professionals with a philosophical analysis of these applications and perceptions. Our study shows that contrary assumptions are involved in the use of the tools, to the extent that one can speak of a : health professionals generally apply a normativist conception of health, find health assessment useful and valuable for their clinical practice, but believe that what the tools measure is basically not health proper but some proximal entity of a more naturalist kind. This result demonstrates the complexity of health assessment tools and suggests that they are used with care to ensure both that particular tools are used for the kinds of tasks they are most apt for, and that they are put to use in awareness of their limitations.
Introducing Point-of-Care PCR technology in general practice: Ambiguities, experiences, and perceptions among health care professionals
Simonsen LM, Eilerskov N, Andersen RS, Soendergaard J, Nielsen JB, Jarbøl DE, Thilsing T, Balasubramaniam K and Assing Hvidt E
In this paper we present findings from a qualitative ethnographic study investigating the experiences and perceptions of general practitioners and other practice staff when introducing a new point of care diagnostic test technology (point of care polymerase chain reaction (POC PCR)) in general practice in Denmark. The ethnographic study was conducted in five general practice clinics, involving observations in four of the clinics and interviews with general practitioners and practice staff in all five clinics. Following an initial analytic phase in which barriers and facilitators in the implementation process of the Point-of-Care test were identified, we developed theoretically informed themes, drawing upon Hartmut Rosa's social theory of technological acceleration. These themes included ambiguous experiences and perceptions of: (i) diagnostic specification and inflation embedded in diagnostic practices; (ii) empowerment and erosion of professional judgment; (iii) strategies of security and insecurity in communication; (iv) the interdependence between professional autonomy and economic structures associated with organizational power; and (v) subjective and organizational time. We discuss how diagnostic technologies simultaneously contribute to and disrupt treatment safety, efficiency, and medical decision-making. Using Rosa's sociological concepts of alienation and resonance, this article furthermore explores how these ambiguous dynamics are experienced in general practice settings. It also examines the implications of navigating a heterogeneous socio-technical and medical landscape and what it means to be a health professional in a contemporary general practice environment that is increasingly shaped by diagnostic technologies.
'Alright my lovely': The use of terms of endearment as a mitigation device in the care of people living with dementia in the acute hospital environment
Bridgstock L, Pilnick A, Goldberg S and Harwood RH
This paper examines how terms of endearment (ToE) are used as a mitigation device in interactions between staff and people living with dementia (PLWD) in the acute hospital environment. ToE are often discouraged in training for healthcare staff. However, this research demonstrates that they are still commonly used in practice. Using conversation analysis, video and audio data were examined to identify the interactional functions of ToE. Analysis showed that ToE play an important role in mitigating potentially face-threatening actions such as when patients are asked to repeat hard-to-interpret talk, or when patient agency is compromised through instruction sequences or having necessary healthcare tasks undertaken. The success of this mitigation is sensitive to the specific interactional circumstances, as well as the responsiveness of the HCP to the patient's voiced concerns. These findings have implications for healthcare practice, training and wider care of PLWD.
Patient-led research and displacements of biomedical knowledge production, distribution, and consumption
Strand DL and Holen M
Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research "mimes" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.
Power, position and social relations: Is the espoused absence of hierarchy in Open Dialogue naïve?
Einboden R, Dawson L, McCloughen A and Buus N
Open Dialogue practitioners aim to reduce social hierarchies by not privileging any one voice in social network conversations, and thus creating space for a polyphony of voices. This sits in contrast to the traditional privileging of those voices credited with more knowledge or power because of social position or professional expertise. Using qualitative interviews, the aim of this current study was to explore Open Dialogue practitioners' descriptions of challenges in implementing Open Dialogue at a women's health clinic in Australia. Findings revealed how attempts to rhetorically flatten hierarchies among practitioners created challenges and a lack of clarity regarding roles and responsibilities. As the practitioners tried to adjust to new ways of working, they reverted to taking up engrained positions and power aligned with more conventional social and professional roles for leading therapy and decision-making. The findings raise questions about equity-oriented ways of working, such as Open Dialogue, where intentions of creating a flattened hierarchy may allow power structures and their effects to be minimised or ignored, rather than actively acknowledged and addressed. Further research is needed to consider the implications that shifting power relations might have on the roles and responsibilities of practitioners in the move to equity-oriented services.
Bright-siding stigma: Older adults' experiences at a higher weight in Atlantic Canada
Bombak AE, Chinho N, Thomson L, Burk C, Akhter S, O'Keefe K and Turner L
The lived experiences of higher-weight people vary; homogenous samples may fail to capture this diversity. This study develops an in-depth understanding of the lived experiences of higher-weight (Body Mass Index ⩾ 30) older adults (⩾60 years of age) in a Canadian Atlantic province. Participants ( = 11) were interviewed face-to-face using a semi-structured interview guide twice at 2-to-3-month intervals regarding their perceived treatment in social and health situations; how positive and negative healthcare experiences affected their health, lifestyles and healthcare seeking-behaviour; and recommendations in terms of patient experiences, access and inclusion. Participants infrequently reported negative experiences; however, participants' experiences were informed by uptake of moralistic, neoliberal discourses. Thematic content analysis identified two major themes: (participants demonstrated internalisation of the imperative for weight loss, healthy lifestyles and active ageing) and (participants expressed that a positive attitude could prevent/help cope with stigma). Results suggest that individualistic, rather than collective, political solutions to health and stigma have been taken up by higher-weight older adults in a Canadian Atlantic province, which may hinder attempts at structural reforms addressing stigma.
Clinical context and communication in shared decision-making about major surgery: Findings from a qualitative study with colorectal, orthopaedic and cardiac patients
Hughes G, Stephens TJ, Seuren LM, Pearse RM and Shaw SE
Increasing numbers of older people undergo major surgery in the United Kingdom (UK), with many at high risk of complications due to age, co-morbidities or frailty. This article reports on a study of such patients and their clinicians engaged in shared decision-making. Shared decision-making is a collaborative approach that seeks to value and centre patients' preferences, potentially addressing asymmetries of knowledge and power between clinicians and patients by countering medical authority with greater patient empowerment. We studied shared decision-making practices in the context of major surgery by recruiting 16 patients contemplating either colorectal, cardiac or joint replacement surgery in the UK National Health Service (NHS). Over 18 months 2019-2020, we observed and video-recorded decision-making consultations, studied the organisational and clinical context for consultations, and interviewed patients and clinicians about their experiences of making decisions. Linguistic ethnography, the study of communication and interaction in context, guided us to analyse the interplay between interactions (during consultations between clinicians, patients and family members) and clinical and organisational features of the contexts for those interactions. We found that the framing of consultations as being about life-saving or life-enhancing procedures was important in producing three different genres of consultations focused variously on: resolving problems, deliberation of options and evaluation of benefits of surgery. We conclude that medical authority persists, but can be used to create more deliberative opportunities for decision-making through amending the context for consultations in addition to adopting appropriate communication practices during surgical consultations.