“Everything Looks Normal”: Patient Narratives of Contested Legitimacy in Long COVID Medical Encounters

Review question/objective The objective of this review is to analyse and synthesise the best available evidence on the experiences of Indigenous people who engage in health care encounters in Western settings and contexts. The review question is: What are the experiences of Indigenous people engaged in health care encounters in Western settings and contexts? Inclusion Criteria Types of Participants Studies including two groups of participants, regardless of age or gender, will be considered for this systematic review. The first group is persons of Indigenous descent from the following countries and continents appearing most frequently in the literature: North America, South America, New Zealand, Australia, and Scandinavian countries. These countries include peoples such as First Nations, Native Americans, Metis, Inuit, North American Indians, South American Indians, Inca, Maori, Aboriginal and Torres Strait Islander peoples of Australia, and Sapmi. This list is not exhaustive, and any Indigenous population identified in a study will be included. Indigenous populations who immigrate to new countries will be excluded, given that immigrant status can confound Indigenous status. The second group of participants to be considered for inclusion is health care providers who work in Western settings and context, including, but not limited to, nurses, physicians, nutritionists, midwives, social workers, physiotherapists, occupational therapists, speech and language therapists, and respirologists. Phenomena of Interest The phenomenon of interest is the experience of Indigenous people in health care encounters in Western health care settings and context. Health care encounters refer to any interactions between an Indigenous person and a health care provider within the scope of Western health care services. All reasons for health encounters will be considered. Context The context will be Indigenous persons seeking health care services in Western settings and context. These services may be located within urban, rural, or remote health care settings where Western health care services are delivered.

Ethnocultural Variations in Mental Illness Discourse: Some Implications for Building Therapeutic Alliances

Contemporary psychiatric mental health care incorporates several major elements: (a) assessing growth and developmental processes influencing mental health throughout the lifespan, (b) assessing interpersonal and environmental stressors influencing mental health, (c) assessing and intervening with biologically based pathophysiological conditions, and (d) assessing and intervening with patients’ subjective definitions of their experiences. The symptomatic convergence of these factors is the starting point for the delivery of psychiatric mental health care. Experienced clinicians acknowledge that focusing on these factors is the nexus of beginning to address mental care. The complexity of effective treatment requires defining a plan of care that integrates developmental states, management of life stressors, biologically based treatments, and subjective elements of perceptions, culture, and life experiences. Evidence-based practice (EBP) interventions directed toward interventions on developmental processes, stressors, and pathophysiological conditions have made significant gains over the past two decades. Discoveries in the areas of physiological functions of the developmental, stress response, and neurochemical functions provide new insights into understanding mental illness. The power of these interventions is impressive and facilitates recovery from debilitating conditions. Yet recovery is not complete until patients subjectively make sense of their experiences and integrate an understanding of the events within their lives. Evidence-based interventions on these subjective elements encompassing patients’ lived experiences, such as cognitive difficulties, suffering, and the life impact of trauma on perceptions and relationships, have not progressed as quickly. The absence of studies and interventions related to the subjective elements of psychiatric care is ironic given the psychophenomenological origins of the specialty. Psychiatric mental health care was strongly influenced by the “interpretive psychoanalytic” research model couched in qualitative descriptions of the human experience of mental illness. Although the interpretive aspects of the original psychoanalytic model are often criticized, there can be no debate that the qualitative methodology used to identify patient’s lived experience gave rise to many of the principles still used as a basis for providing psychiatric mental health care. The absence of interventions on the subjective aspects of mental illness is the result of the failed attempts of the dominant quantitative research methodology to address the subjectivity of the human condition. The inability of quantitative research methodologies to effectively capture the “subjectivity” of the human experience is not a criticism of the methodology but an inherent limitation! As a result, EBP interventions for dimensions of the lived human experience are not commonplace. EBP interventions addressing dimensions of “the lived human experience” may be more effectively examined using qualitative research methodologies. The application of qualitative approaches is not contraindicated in EBP. EBP advocates recognize and advocate for the incorporation of qualitative findings (Fineout-Overholt, Melnyk, & Schultz, 2005). Rigor ous scientific applications of qualitative research findings demonstrate an ability to produce some of the most significant EBP interventions for improving mental health and altering the patients’ lived experience. The interventions of Sandelowski, Trimble, Woodard, and Barroso (2006) to reduce the response to stigma associated with human immunodeficiency virus is an exemplary model of an intervention based on qualitative findings. The use of qualitative findings for EBP interventions addressing the patients’ experiences cannot

BackgroundLong Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology.ResultsA total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping.ConclusionThis study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.

Narrative Diaries in Pediatrics: A Scoping Review

This paper explores the lived experience of mental illness within the field of psychology across higher education and the mental health workforce. There is a high prevalence of mental health issues among psychology students and practitioners, and it is critical not only to provide support for these populations, but also to acknowledge the value of leveraging their lived experience within their education and practice. There has been increased interest in and advocacy for the involvement of those with lived experience of mental illness within mental healthcare service provision to improve patient experiences and outcomes. However, there have been limited acknowledgement and research regarding the role of psychologists with personal lived experiences of mental illness, and how to leverage this experience. Further, there are challenges faced by both psychology students and practising psychologists with lived experience that act as barriers to leveraging their unique skills and experiences. Psychology students with lived experience face stigma, inadequate support, and incongruence between the course material and their personal experiences. Similarly, practising psychologists with lived experience encounter stigma and isolation, indicating the need for a culture change that promotes transparency and understanding. The paper calls for research in five key directions to provide evidence that can be used to support and leverage lived experience in psychology.

In health research, the concept of risk is used in several domains. It features in epidemiology and health promotion as well as in the sociology and anthropology of health and illness. Important problems are embedded in risk as an analytic category, and some of these are widely discussed within the discipline. First, risk cuts out the experience of illness and replaces it with problematic objectifications. Second, there are a multitude of different meanings assigned to risk which make it problematic as an analytic category. Third, the question of uncertainty has, along with the discourse of risk, attained a solely normative meaning of threat, or has become a residual category in anthropology and social science. Fourth, the individualizing character of the concept of risk eclipses the collective, historical, social and political processes that contribute to the uncertainties of life. Departing from the methodological approach to ‘social suffering,’ this paper will argue through two ethnographic studies that normative and individualizing assumptions lead social studies to overlook the way that local actors, rather than narrowly controlling contingency, may engage in it and live with it as a normal experience of human life. Along with risk, there are variations in local attitudes to uncertainty and there are socially shared ways of accounting for and acting with it. A major challenge for social studies is to embrace the need for the development and implementation of a neutral, non-normative language of contingency. The paradigm of social suffering enables a broader perspective to be brought to bear upon the lived experience of affliction and illness so as to expose a greater variation in human responses to the distress of everyday life.

WHAT IS KNOWN ON THE SUBJECT?: Large numbers of mental health professionals live with their own mental health challenges. Despite working in mental health care, they can experience stigma in the workplace. Mental health professionals with lived experience of mental illness can find it a challenge to integrate their identities as both mental health professional and mental health service user. There are currently limited options available to them. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This is a personal reflection from a mental health nurse and lecturer, who lives with a severe and enduring mental illness. It offers a lived experience account of the identity struggles of a mental health professional living with a mental illness. This article attempts to redefine the identity of professionals with personal lived experience in a more positive manner. They can be valued and celebrated for their unique perspective on mental illness and mental health care. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There remains a stigma attached to people living with mental health conditions. This article challenges some of this stigma. It will empower and encourage other health professionals with lived experience to embrace all aspects of their identity with authenticity and courage. ABSTRACT: There are growing numbers of mental health professionals with their own lived experience of mental illness. This is both in part due to increased visibility and openness, and students embarking on professional courses motivated by their own personal mental health history. The somewhat limited research in this area highlights the difficulty practitioners have in navigating this distinct identity. There are limited options, including a wounded healer, an impaired professional and professional survivor. All have their limitations. We need to revise the conceptualisation of mental health professionals with personal lived experience of mental illness. Our identity needs to be celebrated and valued, as are the roles of peer support worker and expert by experience. Through personal reflection, I describe my own challenges in negotiating my identity as a mental health nurse, lecturer, and service user. My solution is to embrace authenticity and havethe courage to stand in vulnerability and strength, embracing all aspects of myself. I call for others to do the same.

“Everything Was Blood When It Comes to Me”: Understanding the Lived Experiences of Women with Inherited Bleeding Disorders

ObjectiveThe first-hand expertise of people with lived experience has gained prominence in the provision of mental health services over the last 20 years. Unfortunately, due to ongoing stigma, there appears to be an ongoing belief that people with lived experience and mental health professionals are two separate entities. Research suggests otherwise, with a significant proportion of mental health professionals having their own experience of mental crisis or mental illness. Indeed, there are numerous prominent figures, littered through the history of psychiatry, all with lived experience of trauma or mental illness which shaped their contributions to the field. The history and prevalence of lived experience among our clinicians and the benefits brought by their expertise will be discussed in this article.ConclusionsResearch demonstrates that acknowledging clinicians' own lived experience has significant benefits in mental health care and outcomes. Perhaps a little more acceptance of our own 'wounded healers' is the first step to truly incorporating the wisdom of those with personal lived experience into our mental health services.

IntroductionDigital technologies and interventions (defined as patient-facing or self-administered interventions delivered through a digital platform) have an increasing role in mental health care. It is key to ensure that appropriate patient and public involvement (PPI) is not overlooked when developing new digital mental health interventions (DMHIs). The unique perspective offered by those with lived experience can improve study conduct and design as well as ensure that interventions meet the needs of users, which may improve their quality and acceptability.ObjectivesTo develop guidance for the involvement of people with lived experience of severe mental illness in designing and conducting research on DMHIs.MethodsFour co-production workshops were arranged online with people who have lived experience of severe mental illness. Initial ideas were formulated in the first workshop and were then prioritised in the second workshop using the nominal group technique. The prioritised ideas were then refined in workshops three and four. Minutes were generated from each workshop and were validated by the those who took part. These minutes were analysed using thematic analysis.ResultsNineteen people with lived experience participated in the co-production workshops overall. Six people took part in one workshop only and 13 took part in multiple workshops. Two main themes were identified in this study: why do people become and remain involved in PPI?; and what areas should be discussed within PPI consultations? Three subthemes associated with the second theme were also identified. These are: areas related to specific types of DMHI; areas related to any type of DMHI; and what can make a difference within DMHIs? To ensure that people become and remain interested in PPI around DMHIs, it is important to provide a non-judgemental space for people with lived experience to discuss any concerns and ensure they feel valued during consultations. Aspects to consider discussing in PPI consultations around the development of DMHIs include the provision of safety and security within DMHIs, issues around digital exclusion and the potential impact of people’s symptoms on DMHI use. Finally, points that were identified as important to consider when developing DMHIs include offering encouragement throughout the DMHI, accommodating for individual and collective needs within DMHIs and developing a structure within the DMHI which includes adding in attainable goals.ConclusionsIf used, the information provided from this study can generate positive and productive PPI consultations where those with lived experience can make significant contributions to the development of DMHIs. Such contributions will increase the acceptability and efficacy of the DMHIs developed.Disclosure of InterestNone Declared

The study of illness narratives, or pathography, is an emerging discursive scholarship within the field of medical humanities. Centering the connection between narrativity and identity, illness narratives stand as a meaningful response to perceived medical subjugation. This paper turns to a particular case study of hyperandrogenism, a medical condition characterized by “excessive” levels of male hormones (androgens) such as testosterone. When identified in the female body, the increased androgens are associated with “masculinizing” symptoms including excess body and facial hair, male-pattern baldness, infertility, elevated sex drive, increased muscle mass, and absence of menstrual bleeding. For the purposes of imaging new ways to situate the phenomenological experience of hyperandrogenism and illness of the gendered body, a linkage can be made between such an illness and Sigmund Freud’s conception of the uncanny. In line with Martin Heidegger’s conception of phenomenology, I will turn to the lived experience of women with hyperandrogenism through their digital illness narratives (writings of their experience of illness in online blogs), and outline how the experience of hyperandrogenism distorts temporal reality by making “alien” both the past and future. I will show how the gendered body, and therefore self-identity and selfhood, become abnormal in the sense of Freud’s uncanny. Finally, I will discuss how the experience of hyperandrogenism and illness of the gendered body work to trouble the notion of the “everyday.”

Since more than three decades, the perspectives of critical health psychology and new cross-cultural psychiatry within the field of health sciences have renewed the focus on experiences of illness and healing. Such an impetus to research exploring the person’s life experiences was based on the imperative of how the cultural and structural processes intricately shape the diverse experiences of illness, distress, or healing. The task of getting close to the person’s experiences of illness or healing inherently requires a qualitative researcher’s orientation or motivation to unravel the hierarchies or power positions (related to gender, religion, caste, class, or academic expertise) surrounding not only the participant’s life context but also the researcher-participant relationship. In order to understand these hierarchies and build a trust- or compassion-based research-participant relationship and to explore the participant’s experiences within context, this paper illustrates the use of critical reflexivity, i.e., researcher’s critical and continual awareness of his or her personal, theoretical, epistemological and ideological assumptions behind research and the researcher-participant relationship. Examples from our ethnographic studies (on caregiving of children diagnosed with Autism Spectrum Disorder, transgenerational trauma, disability experience, ‘personal’ recovery among severely mentally ill persons, social suffering of homeless mentally ill people, and institutionalized care for mental health) indicate how doing critically reflexive fieldwork not only helped us comprehend the socio-political and cultural contexts of participants’ lives but also enabled us to develop an empathic understanding of their distress or healing.

Anecdotal reports and first-person accounts by psychologists, psychiatrists, social workers, and nurses with lived experience of mental illness ("prosumers") indicate that they can be effective in these roles, but little is known about the extent, nature, or contributions of this group. Competently functioning prosumers are in a unique position to increase hope for recovery and reduce stigma and discrimination across the mental health field, to the ultimate benefit of consumers. The study surveyed a convenience sample of 77 prosumers working for the Veterans Health Administration (VHA). We present descriptive productivity metrics such as publications, presentations, funding, initiating and leading programs, training and supervising other clinicians, and performing community work outside VHA. Very few have asked for accommodations at work. Two thirds have not disclosed their lived experience to any of their patients. On average, respondents have disclosed to only 16% of their colleagues, and about one third have not disclosed to any of their colleagues. Qualitative data show that participants see their lived experience as an asset, whether or not they disclose it. They advocate being conscientious about self-care to remain work-ready. Although the group sees many advantages to being open about their lived experience, and many are proud to stand up and be counted, others cite reasons to be cautious about disclosure. It is hoped that this survey will provide inspiration and encouragement to mental health workers with lived experience and that it will help foster a welcoming and inclusive work environment for this capable group of colleagues. (PsycINFO Database Record

In 1969, a psychiatric resident admitted a young woman who confessed to her doctor that, “twenty-percent of the time I see reality, and the rest of the time I am in my dream world.” Six months later, near the end of her treatment with antipsychotic medications and psychotherapy, her resident summarized how he understood her illness: There is no question that the psychosis continues…Yet, within the overall personality there is… an ego-adaptive, coping, observing, trying to judge—albeit from a weak, uncertain and tenuous position…[often] overwhelmed in the face of inner chaos and psychosis. But there are islands of strength within the psychotic seas, and when the seas diminish, seemingly of their own accord, one can see these islands more clearly than ever before…One can only wonder if all these islands are not somehow connected beneath the sea, and if so, how does one continue to raise the land mass, that is, capacity to cope and adapt above the level of the waters of the raging impulses of her psychosis. Compare this record to one written nearly 40 years later at the same institution. Here, a psychiatric resident describes the hospital course of a man with the identical diagnosis as the woman: This is a 25 yo Hispanic male with a past psych hx of schizophrenia who brought himself to the ER with the chief complaint of command AH telling him to hurt himself and hurt his brother. ….Pt also endorsed depressed mood, decreased appetite, and insomnia. He did not have any other active SI or HI. Pt admitted that he had been off his psychotropic medications for the past 30 days.…Pt was restarted on his previous medications. On day 2, pt reported feeling improved after treatment. He denied having suicidal thoughts or homicidal thoughts. His AH frequency decreased. On day 3, pt reported improved mood, denied suicidal or homicidal thoughts. Case manager contacted the patient's brother, who stated that pt didn't get along with his family members and family members would not be willing to provide housing. The patient agreed to be discharged to a shelter. The two patients experienced nearly identical troubles, including failure to live independently, a paucity of social relationships, and persistent psychosis. In the first case, the resident took little interest in the patient's symptoms (despite the fact that antipsychotic medications had been in widespread use for over 15 years) and spent many hours learning about her life outside of the hospital and her inner psychological world. The second resident dearly cared about the patient's symptoms and viewed them as unrelated to the scarcity and loneliness that characterized his social life. These divergent representations of the patient with schizophrenia reflect dramatic changes in the social, cultural, and scientific contexts in which psychiatry is practiced. Much of what we do as clinicians is not a consequence of the natural world but, instead, results from our contingent social and cultural context and, as such, deserves critical scrutiny. Historical and anthropological approaches provide tools with which psychiatrists-in-training can reckon with the clinical challenges raised by a complex world. For the last three years, the authors have conducted a course on the social sciences and psychiatry for second-year psychiatric residents with these aims in mind. Through lectures, readings, and homework, the course engages residents in discussions about the psychiatric task. Social science is taught not as a set of abstract theories, but as a set of tools with which to be thoughtful about the responsibilities, complexities, and uncertainties of clinical work. The aim is to teach residents to critically engage the knowledge they use as psychiatrists and to make an intellectual investment in the future of their profession. This article describes the conceptual foundation of the course, its structure, and impact.