Unfair knowledge practices in global health: a realist synthesis.

Unfair knowledge practices easily beset our efforts to achieve health equity within and between countries. Enacted by people from a distance and from a position of power ('the centre') on behalf of and alongside people with less power ('the periphery'), these unfair practices have generated a complex literature of complaints across various axes of inequity. We identified a sample of this literature from 12 journals, and systematised it using the realist approach to explanation. We framed the outcome to be explained as 'manifestations of unfair knowledge practices'; their generative mechanisms as 'the reasoning of individuals or rationale of institutions'; and context that enable them as 'conditions that give knowledge practices their structure'. We identified four categories of unfair knowledge practices, each triggered by three mechanisms: 1. credibility deficit related to pose (mechanisms: 'the periphery's cultural knowledge, technical knowledge, and 'articulation' of knowledge do not matter); 2. credibility deficit related to gaze (mechanisms: 'the centre's learning needs, knowledge platforms, and scholarly standards must drive collective knowledge-making'); 3.interpretive marginalisation related to pose (mechanisms: 'the periphery's sensemaking of partnerships, problems, and social reality do not matter'); and 4. interpretive marginalisation related to gaze (mechanisms: 'the centre's learning needs, social sensitivities and status-preservation must drive collective sensemaking'). Together, six mutually overlapping, reinforcing and dependent categories of context influence all 12 mechanisms: mislabelling (the periphery as inferior); miseducation (on structural origins of disadvantage); under-representation (of the periphery on knowledge platforms); compounded spoils (enjoyed by the centre); under-governance (in making, changing, monitoring, enforcing, and applying rules for fair engagement); and colonial mentality (of/at the periphery). These context-mechanism-outcome links can inform efforts to redress unfair knowledge practices; investigations of unfair knowledge practices across disciplines and axes of inequity; and ethics guidelines for health system research and practice when working at a social or physical distance.

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study.

BACKGROUND AND AIM: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. METHODS: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE-ICP Collaboration. FINDINGS: Twenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources. CONCLUSION: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. PATIENT OR PUBLIC CONTRIBUTION: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders.

Using Epistemic Injustice to Examine Scholarship About Sexual Violence Among Students With Minoritized Identities.

We engaged in a content analysis of 10 years of scholarship about students of color, students with disabilities, and queer and/or trans students and sexual violence (SV). Our findings indicate that most of the scholarship centering students with minoritized identities focuses on prevalence and risk factors associated with SV and lacks theoretical frameworks relevant to the populations being studied. Employing epistemic injustice as a framework, we argue the implications of excluding students with minoritized identities in the scholarship about SV results in ineffective research and practice, which ultimately results in continued high rates of SV for all students.

An audit and analysis of electro convulsive therapy patient information sheets used in local health districts in New South Wales Australia.

Electroconvulsive Therapy (ECT) is a widely used psychiatric treatment; however, it remains contentious. It is therefore important that people are provided with accurate and balanced information before consenting to ECT. The aim of this study was to audit and analyse the content and language of ECT information sheets used in local health districts (LHDs) across the state of New South Wales Australia. Descriptive content analysis and evaluative linguistic analysis were used to investigate the information sheets, with findings then considered from a mad studies perspective. Thirteen ECT information sheets were obtained and reviewed, with the audit finding they lacked accuracy and balance. Linguistic tools were used to exaggerate positive outcomes and minimise negative effects. Despite commonalities, the structure and content of the sheets varied considerably. Findings indicate a need for co-design and co-production approaches to developing ECT information sheets. This should occur in genuine partnership with lived experience representatives based on current evidence, using neutral language, and with attention to their intent as part of processes of informed consent and decision making.

The emotional impact of baseless discrediting of knowledge: An empirical investigation of epistemic injustice.

According to theoretical work on epistemic injustice, baseless discrediting of the knowledge of people with marginalized social identities is a central driver of prejudice and discrimination. Discrediting of knowledge may sometimes be subtle, but it is pernicious, inducing chronic stress and coping strategies such as emotional avoidance. In this research, we sought to deepen the understanding of epistemic injustice's impact by examining emotional responses to being discredited and assessing if marginalized social group membership predicts these responses. We conducted a novel series of three experiments (Total N = 1690) in which participants (1) shared their factual knowledge about how a game worked or their personal feelings about the game; (2) received discrediting feedback (invalidating remarks), validating feedback (affirming remarks), or insulting feedback (general negative social evaluation); and then (3) reported their affect. In all three studies, on average, affective responses to discrediting feedback were less negative than to insulting feedback, and more negative than to validating feedback. Participants who shared their knowledge reported more negative affect after discrediting feedback than participants who shared their feelings. There were consistent individual differences, including a twice-replicated finding of reduced negative affect after receiving discrediting and insulting feedback for Black men compared to White men and women and Black women. Black men's race-based traumatic symptom scores predicted their affective responses to discrediting and insulting feedback, suggesting that experience with discrimination contributed to the emotional processing of a key aspect of epistemic injustice: remarks conveying baseless discrediting of knowledge.

Emotions of endometriosis in clinical encounters: An analysis of women's experiences of health care.

BACKGROUND: A large number of illnesses that lack physical visibility are characterised by troubled clinical encounters. Endometriosis is one such condition with very real and often debilitating symptoms that remain invisible to the clinician's eye, but are experienced and lived by the patient. METHOD: This paper probes into two first person accounts of endometriosis to find out how endometriosis patients experience health care. The Tiger and the Cage: A Memoir of a Body in Crisis (2022) by Emma Bolden and Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) by Lara Parker are both memoirs that details on the trivialisation and delegitimization of the women's accounts of their own lived reality by a health care system that often privileges medical evidence over lived experiences of the patients. After giving a brief introduction on the condition, the paper goes on to detail on the method and conceptual frameworks chosen for analysis. This is followed by an in-depth analysis into the two texts using thematic analysis proposed by Virginia Braun and Victoria Clarke to identify shared patterns of meanings in the texts. DISCUSSION: The identified themes take the form of emotions repeatedly narrated by the women. The findings indicate instances of disrespect, epistemic invalidation and compromised autonomy, due to which six shared categories of negative emotions are experienced by the patients: self-doubt, shame, fear, powerlessness, self-blame and anger. CONCLUSION: The paper concludes by indicating the urgency of improved medical training, that better educates and facilitates health care professionals in dealing with conditions with complicated aetiology, difficult diagnosis and no cure.

Patient-centered or population-centered? How epistemic discrepancies cause harm and sow mistrust.

Medical distrust is often conceived of as a problem of misinformation or ignorance. In this paper, I depart from this framework, attributing distrust instead to epistemic divergence between lay people and experts. Using data from a contraceptive side effects Facebook group and in-depth physician interviews, I find that providers employ a "body-as-subject" lens informed by population-health goals, while group members employ a "body-as-agent" lens that privileges individuality and bodily autonomy. Provider epistemologies are privileged, creating epistemic injustice and harm for patients. Ultimately, this erodes trust in providers and the medical community more broadly.

Lost and changed meaning in life of people with Long Covid: a qualitative study.

Long Covid (LC) has been called the greatest mass-disabling event in human history. For patients, LC not only has implications for quality of life but also for meaning in life: how one's life and the world are understood and what is seen as valuable in one's life. This qualitative empirical study used a Constructivist Grounded Theory approach to investigate the meaning in life of people struggling with LC through ten patient interviews. This study shows that patients lose their prior understanding of life and come to a changed meaning in life, in part due to the experienced (social) isolation and loss of (both physical and cognitive) abilities caused by LC. Moreover, patients struggled with acceptance, uncertainty, and the inherent incomprehensibility and uncontrollability that living with LC entails, though this simultaneously co-existed with hope, optimism and acceptance. Additionally, dimensions of meaning intersect; a patient having some understanding of their illness (dimension of meaning: comprehension) required an understanding Other (dimension of meaning: connection). Emerging from lockdown brought the challenge and isolation of adjusting to chronic illness in society as usual (albeit divided about COVID-19 measures). This study thus offers novel insights regarding changed, present, and sought meaning in life for LC patients.

Putting "Epistemic Injustice" to Work in Bioethics: Beyond Nonmaleficence.

We expand on Della Croce's ambition to interpret "epistemic injustice" as a specification of non-maleficence in the use of the influential four-principle framework. This is an alluring line of thought for conceptual, moral, and heuristic reasons. Although it is commendable, Della Croce's attempt remains tentative. So does our critique of it. Yet, we take on the challenge to critically address two interrelated points. First, we broaden the analysis to include deliberations about hermeneutical injustice. We argue that, if due consideration of epistemic injustice is to require more than negative ethical obligations in medicine, dimensions of hermeneutical injustice should be explored as an avenue to arrive at such positive duties. Second, and relatedly, we argue that this may encompass moral responsibilities beyond the individual level, that is: positive obligations to take action on a structural level. Building on Dotson's concept of "contributory injustice" and Scheman's concept of "perceptual autonomy," we suggest that the virtues of testimonial and hermeneutical justice may provide additional content not only to negative prohibitions of action (i.e. non-maleficence) but also to positive requirements of action, like respecting patient autonomy.

Epistemic injustice in experiences of young people with parents with mental health challenges.

Amongst the impacts of growing up with a parent with mental health challenges is the experience of stigma-by-association, in which children and young people experience impacts of stigmatisation due to their parent's devalued identity. This article seeks to expand our understanding of this issue through an abductive analysis of qualitative data collected through a codesign process with young people. Results indicate that young people's experiences of stigmatisation can be effectively understood as experiences of epistemic injustice. Participants expressed that their experiences comprised 'more than' stigma, and their responses suggest the centrality to their experiences of being diminished and dismissed in respect of their capacity to provide accurate accounts of their experiences of marginalisation and distress. Importantly, this diminishment stems not only from their status as children, and as children of parents with mental health challenges but operates through a range of stigmatised identities and devalued statuses, including their own mental health status, sexual minoritisation, disability and social class. Forms of epistemic injustice thus play out across the social and institutional settings they engage with. The psychological and social impacts of this injustice are explored, and the implications for our understanding of stigma around family mental health discussed.

Ameliorating epistemic injustice in practice: Communication strategies in a research project with refugee youth coresearchers.

INTRODUCTION: Many researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers. METHODS: This article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth. FINDINGS: Four manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel-facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust-trust facilitates richer involvement. CONCLUSION: At the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice. PATIENT OR PUBLIC CONTRIBUTION: This article is a participatory analysis of a PPI process; it was written in collaboration between researchers and refugee youth coauthors, who were all previously involved in the evaluated project.

Hermeneutical injustice and unworlding in Psychopathology.

The rich literature in phenomenological psychopathology regards the communicative difficulties accompanying psychiatric illness as a product of 'unworlding': the experience of a drastic change in one's habitual field of experience. This paper argues that the relationship between speech expression and unworlding in psychiatric illness is more complex than previously assumed. Not only does unworlding cause a breakdown in speech expression, but a breakdown in speech expression can perpetuate, and even exacerbate, the experience of unworlding characteristic of psychiatric illness. In other words, I identify a two-way relationship between unworlding and the communication breakdown in psychiatric illness. Merleau-Ponty's phenomenology of speech expression is drawn upon to demonstrate how hermeneutical injustice in psychiatric healthcare can elicit unworlding for the person with a psychiatric illness.

Taking embodiment seriously in public policy and practice: adopting a procedural approach to health and welfare.

It is a common refrain amongst phenomenologists, disability theorists, and feminist legal theorists that medical practice pays insufficient attention to people's embodiment. The complaint that we take insufficient account of people's embodiment isn't limited to the clinical interaction. It has also been directed at healthcare regulation and welfare policy. In this paper, I examine the arguments for taking embodiment seriously in both medical practice and welfare policy, concluding we have good reasons to take better account of people's embodiment. I then set out two challenges to taking embodiment seriously in public policy. First, given the amount of variation in how people are embodied, there is strong possibility that adjusting policy to benefit particular individuals based on an appreciation of their embodied experiences could be detrimental towards other individuals. The second challenge concerns how to ensure that people's testimony about their first-person embodied experience is subject to adequate scrutiny without this resulting in epistemic injustice. I argue that the solution to both of these challenges is to devise a just procedure for soliciting people's testimony and taking it into account in the policy development process. As such, I also provide an outline of what a just procedure should look like.

Co-opting the "neuro" in neurodiversity and the complexities of epistemic injustice.

This article tackles the theoretical thinking behind PPI and inclusion, input from people with neurodiverse conditions. By providing a perspective on how the prefix "Neuro" is positioned in a neutral and authoritative way (exemplified through our brief review of articles within Cortex), we explore how "epistemic injustice" (a concept used frequently in law, politics, philosophy and social science) can potentially arise. Epistemic injustice typically refers to a pernicious power dynamic whereby oppressed groups are silenced (Fricker 2007), either because certain voices are not given weight ("testimonial injustice"), or the ways in which they are allowed to speak (e.g., interpret their own experiences) are limited ("hermeneutical injustice") (Kidd and Carel 2016). We show how, for "neurodiversity", the mainstream "neuro" narratives are often positively felt by those deemed to be neurodiverse, and the lines between oppressor and oppressed break down, as both neuroscientists and people with neurodiverse conditions co-opt and influence each other's positions.

Relational care and epistemic injustice.

The philosophical underpinnings of primary care have been examined from several perspectives in recent years. In two previous articles, we have argued that a relational view of autonomy is better matched to the primary care setting than others, and that view is mainly formed from the descriptors of its practice. Here we develop that analysis further, linking it to other relevant theory: the experience of human suffering and epistemic injustice. We argue that relational care is fundamental to ameliorating epistemic injustice and that relationships are integral to ethical practice, rather than being distinct. We propose that personalised care as described in the NHS Long Term Plan is not possible without addressing epistemic injustice and therefore without reconsidering our existing normative ethical frameworks.

Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study.

LAY ABSTRACT: Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.

Young adults' experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study.

AIM: This article explores experiential knowledge of living with paediatric acute-onset neuropsychiatric syndrome (PANS), and the factors that are associated with perceived good care. METHODS: Ten people with lived experience of PANS participated, five women and five men aged 19-34. Semi-structured interviews were used to explore their experience of living with PANS and their encounters with healthcare. Thematic analysis was carried out to identify central themes in the transcribed interviews. RESULTS: The study revealed a group of young adults living fairly isolated lives, dependent on care from relatives. To them, the illness was a tangible presence. They perceived a lack of knowledge among healthcare staff on PANS in healthcare, and negative consequences linked to this. In addition, their experience-based knowledge of their own illness is devalued in healthcare encounters. A feeling of being pushed around in healthcare, without anyone taking responsibility for the treatment, emerged in the interviews. The participants emphasized the need for increased knowledge among staff to identify PANS and be able to offer effective treatment. CONCLUSION: There is a need to increase the knowledge about PANS in healthcare and to coordinating care between neurology, immunology and psychiatry. To be able to offer evidence-based care to children with PANS, in-depth knowledge is needed about aetiology, treatment effects, and user experiences and preferences.

First-person disavowals of digital phenotyping and epistemic injustice in psychiatry.

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person's digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients' testimony and treatment preferences, which can be instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry.

Confronting Epistemic Injustice and Inequity in IDD Research: The Value of Theorizing Beyond Dominant Culture's Perspective.

This commentary highlights pervasive challenges related to the science of intellectual and developmental disabilities (IDD), which we often take for granted. We argue that social power asymmetry and entrenched patterns of epistemic injustices undermine our science and call attention to the need to maximize our efforts to undo these unfair practices to enhance future care and research in IDD.